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Beyond the barriers

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Title:
Beyond the barriers a qualitative investigation into the experiences of general pediatricians working with young children exhibiting developmental delays and disabilities
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English
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Mack, Kahlila Genese
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University of South Florida
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Subjects / Keywords:
AAP guidelines
School psychologists
Educators
Full-service schools
Qualitative
Dissertations, Academic -- Psychological & Social Foundations -- Doctoral -- USF   ( lcsh )
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non-fiction   ( marcgt )

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Summary:
ABSTRACT: General pediatricians are typically the first professionals to detect the early developmental concerns of young children during their infant and toddler stages. When concerns are identified by the general pediatrician, best practice encourages the referral of young children for further assessment and/or intervention. Due to these factors, this study focused on the methods general pediatricians use in their efforts to implement the American Academy of Pediatrics (AAP) guidelines for the developmental surveillance and screening of young children. Furthermore, this study focused on the barriers faced by general pediatricians and the solutions they have developed to overcome these barriers in their efforts to assist young children with developmental delays and disabilities. Twenty-eight pediatricians who also were members of the Region V Florida Chapter of the AAP provided responses to survey data inquiring about the implementation of AAP guidelines within their settings.Six of the survey respondents were general pediatricians who each participated in a semi-structured interview to gain further insight into their implementation of the AAP guidelines. Additionally, existing barriers were examined to determine the strategies general pediatricians developed to overcome them. The results showed that each of the six general pediatricians reported their engagement in some, if not all recommended AAP guidelines. The general pediatricians shared specific examples of how this was done, which provided valuable data for other general pediatricians who desire to learn effective strategies for implementing AAP guidelines. The interview responses addressed several themes, including training and continuing education, learning about and using developmental screeners, determining the cause of delays and disabilities, referring children with delays and disabilities, using a culturally-sensitive/family centered approach, and increasing parent awareness.General pediatricians also reported how they have overcome the barriers (e.g., limited time and staff members) to following AAP guidelines, as well as barriers that continue to exist (e.g., insufficient reimbursement for preventive care, difficulties serving children from low-income families, etc.). Although this study focused on how general pediatricians have overcome obstacles, multidisciplinary collaboration was emphasized as an integral factor needed to achieve the earliest identification and intervention implementation for young children with developmental concerns.
Thesis:
Dissertation (Ph.D.)--University of South Florida, 2008.
Bibliography:
Includes bibliographical references.
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Mode of access: World Wide Web.
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by Kahlila Genese Mack.
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Title from PDF of title page.
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Document formatted into pages; contains 245 pages.
General Note:
Includes vita.

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University of South Florida Library
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University of South Florida
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aleph - 002001167
oclc - 319638222
usfldc doi - E14-SFE0002620
usfldc handle - e14.2620
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Beyond The Barriers: A Qualitative Investiga tion Into The Experiences Of General Pediatricians Working With Young Childre n Exhibiting Developmental Delays And Disabilities by Kahlila Genese Mack A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Psychological and Social Foundations College of Education University of South Florida Major Professor: Kat hy Bradley-Klug, Ph.D. Rose Iovannone, Ph.D. Harold Keller, Ph.D. Kathleen Armstrong, Ph.D. Carol Lilly, M.D. Date of Approval: June 27, 2008 Keywords: aap guidelines, school psychologi sts, educators, full-service schools, qualitative Copyright 2008 Kahlila Genese Mack

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Dedication This dissertation is dedicate d to all graduate students Its not how you start, its how you finish. unknown author

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Acknowledgements The completion of this dissertation woul d not have been possible without the guidance and support of several individuals. First, I would like to thank Dr. Kathy Bradley-Klug for her continuous support a nd guidance on my journey through graduate school and towards completing my disserta tion. I would like to thank Dr. Rose Iovannone for making herself available at all tim es as she mentored me as I developed, implemented, and interpreted my methods. I also appreciate Drs. Harold Keller, Kathleen Armstrong, and Carol Lilly for providi ng me with real life experiences that have molded me into the pr ofessional I am today. I am truly thankful for my mother, father and brother who have believed in me and have remained positive even when I was discouraged. Thank you Andretha HallReeves and Dr. Deborah Rose for keeping me on my toes. Finally, I would like to thank my wonderful friends and colleagues, especially Jenine Sansosti and Dr. Rachel Cohen. I appreciate each of youalways.

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i Table of Contents List of Tables iv List of Figures v Abstract vi Chapter One: Introduction 1 Statement of the Problem 1 Rationale for the Study 3 Purpose of the Study 4 Research Questions 4 Importance of the Study 5 Chapter Two: Literature Review 8 A Case for Concern Children with Developmental Delays and Disabilities 8 Definition of Developmental Delays and Disabilities 8 Prevalence of Children with Delays a nd Disabilities 10 Causes of Developmental Delays and Disabilities 11 The Importance of Early Identification and Intervention 13 Federal Mandates 13 Identifying Children with Developmental Concerns 15 The General Pediatricians Role 15 Family Involvement 15 Surveillance and Screening of Develo pmental Concerns 18 Guidelines for Identifying Developmental Concerns 21 The Medical Home 21 Barriers to Early Identification and Intervention 23 Identifying Concerns and Referring for Early Intervention Services 23 Helping Families Transition to Early Intervention Services 27 Overcoming Barriers American Academy of Pediatrics (AAP) Recommendations 29 Current Study 30 Chapter Three: Methodology 32 Theoretical Framework 32

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ii Design 32 Participant Recruitment and Sampling 33 Procedures 34 Phase One: Online Survey 35 Phase Two: Selection of Interview Candidates 36 Phase Three: Interview Process 37 Data Analysis 40 Research Credibility 42 Chapter Four: Results 44 Pediatrician Demographics 44 Interview Participants 55 AAP Guidelines Interview Fi ndings 58 Training and Continuing Education 58 Continuing Education Community Resources 60 Learning About and Using Developmen tal Screeners 62 Determining the Cause of Delays and Disabilities 65 Referring Children with Delays and Di sabilities 71 Using a Culturally-Sensitive/Family-Cen tered Approach 74 Parent Awareness 78 Connecting with Community Resources 85 Barriers to Implementing AAP Guidelines 86 Overcoming Existing Barriers to AAP Guidelines 87 Barriers to Administering a nd Scoring Valid Screening Tools 88 Barriers to Assigning Staff to Assist with Developmental Surveillance 90 Barriers to Budgeting for Instrument Costs 92 Barriers to Referring Families to Community Resources 94 Barriers to Obtaining Reimbursement for Preventive Care 95 Additional Barrier: Low Socio-Economic Status (SES) 98 Additional Barrier: General Pediatrici ans Beliefs 99 Summary of Findings 102 Chapter Five: Discussion 110 Research Questions 110 Implementing AAP Guidelines 111 Developmental Screening and Surveillance 112 Connecting with Community Resources 114 Reimbursement 115 Low SES Families 116 Interpreting Reports 118 Working with Educators and Families 119 Collaboration with Other Professionals 120 Limitations 122 Moving Forward Assisting General Pediatricians 124

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iii The School Psychologist as a Facilitato r of Collaboration 126 The School Psychologists Role in Developi ng and Implementing Policy 127 Implications for Practice 129 General Recommendations for Parents and Caregivers 130 General Recommendations for Ot her Healthcare Providers and Community-Based Specialists 130 General Recommendations for Educators 130 General Recommendations for School Psychologists 130 Additional Recommendations for Ot her Healthcare Providers and Community-Based Specialists 131 Additional Recommendations for Educators 131 Additional Recommendations for School Psychologists 131 Future Research 132 Conclusion 134 List of References 135 Appendices 142 Appendix A: Introductory Email 143 Appendix B: Follow-up Email 145 Appendix C: Informed Consent Document 147 Appendix D: Online Survey 150 Appendix E: Interview Protocol 154 Appendix F: Request to Review Transcripts 159 Appendix G: Transcripts 160 Appendix H: Audit Trail 241 Appendix I: Bracketing Interview 242 About the Author

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iv List of Tables Table 1 Parent Report Measures 17 Table 2 Screening Tools 20 Table 3 Credibility Measures 43 Table 4 Participant Demographics 6 General Pediatricians 56 Table 5 Rations of 6 General Pediat ricians Reporting the Facilitation of AAP Guidelines 57 Table 6 Ratios of 6 General Pediatricians Re porting Existing Barriers 87 Table 7 Themes, Descriptions, Codes, and Examples 104 Table 8 Overcoming Existing Barriers 107 Table 9 Continuing Barriers 108

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v List of Figures Figure 1 Survey Participant Demographics Age 45 Figure 2 Survey Participant Demographics Gender 46 Figure 3 Survey Participant Demographics Pediatrician Type 47 Figure 4 Survey Participant Demographics Years in Practice 48 Figure 5 Survey Participant Demographics Practice Setting 49 Figure 6 Survey Participant Demographi cs Location 50 Figure 7 Survey Participant Demographics Weekly Hours 51 Figure 8 Twenty-Eight Survey Participants Percentage of Time Engaged in Each AAP Guideline 53 Figure 9 Twenty-Eight Survey Participants AAP Guidelin e: Providing a Strategy for Periodic Screening 54

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vi Beyond the Barriers: A Qualitative Investig ation into the Experiences of General Pediatricians Working with Young Childre n Exhibiting Developmental Delays and Disabilities Kahlila Genese Mack ABSTRACT General pediatricians are typically the fi rst professionals to detect the early developmental concerns of young children durin g their infant and t oddler stages. When concerns are identified by the general pediatrician, best practice encourages the referral of young children for further assessment and/or intervention. Due to th ese factors, this study focused on the methods general pediatricians use in their efforts to implement the American Academy of Pediatrics (AAP) guide lines for the developmental surveillance and screening of young children. Furthermore, this study focused on the barriers faced by general pediatricians and the solutions they have developed to overcome these barriers in their efforts to assist young children with developmenta l delays and disabilities. Twenty-eight pediatricians who also were members of the Region V Florida Chapter of the AAP provided responses to survey data i nquiring about the implementation of AAP guidelines within thei r settings. Six of the survey respondents were general pediatricians who each participat ed in a semi-structured interview to gain further insight into their implementation of the AAP guidelines. Additionally, existing barriers were examined to determine the stra tegies general pediat ricians developed to overcome them. The results showed that each of the six general pediatricians reported their engagement in some, if not all recommended AAP guidelines. The general pediatricians shared specific examples of how this was done, which provided valuable data for other general pediatricians who de sire to learn effective strategies for

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vii implementing AAP guidelines. The interview responses addressed se veral themes, including training and continuing education, learning a bout and using developmental screeners, determining the cause of delays and disabilities, referring ch ildren with delays and disabilities, using a culturally-sensitive/family centered approach, and increasing parent awareness. General pediatricians also reported how they ha ve overcome the barriers (e.g., limited time and staff members) to following AAP guidelines, as well as barriers that continue to exist (e.g., insufficient reimbursement for preventive care, difficulties serving children from low-income families, etc.). Although this study focused on how general pediatricians have overcome obstacles, multidisciplinary collaboration was emphasized as an integral factor needed to achieve the earliest identification and intervention implementation for young children with developmental concerns.

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1 Chapter One Introduction Statement of the Problem The early years of a childs life are crucial for cognitive, motor, language, social, and emotional development. Children whose de velopmental concerns remain unidentified face an increased risk for compromised h ealth, safety concerns, and developmental delays (Center for Disease Control and Pr evention, 2005). Sices (2007) reported that delays in the development of speech and la nguage, fine and gross motor, social, and problem-solving skills in early childhood ar e indicators for specific developmental conditions (i.e., speech and language diso rders, learning disabilities, cognitive disabilities, autism spectrum disorders, cerebral palsy, and vision or hearing impairments). The 2003 National Survey of Childrens Health showed that children having chronic problems were impacted by diminished family functioning, increased school absences, and less partic ipation in community activities compared with their peers. Additionally, this survey noted that the most commonly diagnosed problems were learning disabilities (11.5%), attention-deficit/hyperactiv ity disorder (8.8%), and behavioral problems (6.3%) among children (i.e., ages 6 through 17 years of age) in addition to speech problems (5.8%) and developmental delays (3.2%) among preschoolaged children (Blanchard, Gurka, and Blackman, 2006). There is substantial evidence demonstra ting that early interv ention services (e.g., Head Start programs) produce positive effects regarding the developmental outcomes of

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2 children who are at risk for or have delays and disabilities. With early intervention efforts, young children may attain skills in various domains (e.g., cognitive, language, social, etc.) that are necessary for their educ ational achievement. It is imperative that developmental concerns are addressed as ear ly as possible for a young child, to ensure that later school concerns (e.g., low self-esteem, retent ion, etc.) may be potentially avoided. Positive outcomes regarding childrens physical, social, emotional, language, and cognitive development as a result of invol vement in early intervention programs have been clearly documented. However, in order for these children to obtain appropriate early intervention services, it is imperative that th ey are not only identifie d, but also referred in a timely manner by health care providers, such as general pediatricians. Within the healthcare profession, several fa ctors have made the process of early identification and timely referra l of young children with delays and disabilities difficult, due to barriers often faced by general pediat ricians. Examples of these barriers include unfamiliarity with screening tools used to de tect developmental delays, insufficient time to administer these tools during office hours, a lack of nonphysician staff to assist with developmental screening, difficulties obtaini ng reimbursement for preventive services (Perrin, 1999; Sices, Feudtner, Mclaughli n, Drotar & Williams, 2004; Halfon et al., 2004), a lack of knowledge regarding community resources available for intervention (Perrin, 1999), and feelings of inadequacy re garding the knowledge required to conduct thorough developmental and behavioral sc reenings upon ending residency training (Frazer et al., 1999; Perrin, 1999). General pediatricians are the key profe ssionals who can assist in closing the widening gap of children who lack services for developmental concerns. King and

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3 Glascoe (2003) noted that gene ral pediatricians have the un ique opportunity of assisting with the improvement of childrens developm ental outcomes via early identification and referral of children who are at-risk for dela yed developmental outcomes. For example, general pediatricians often assess preschool-aged children (i.e., child ren less than five years of age) during preventive-care visits (Sices et al., 2004). Therefore, general pediatricians typically have several opportuni ties to identify devel opmental concerns and initiate the early intervention process. Rationale for the Study General pediatricians assess children fo r medical and/or developmental concerns, as well as the prevention, diagnosis, and treatm ent of childrens illnesses. However, early identification and referral of children with developmental problems continues to pose a challenge considering the many barriers faced by general pediatricians. This issue has led the researcher towards seeking answers th at may assist general pediatricians in identifying children with delays and disabi lities early, as well as refer for early intervention services. The American Academy of Pediatrics (2006) published updated guidelines for developmental screening in a July policy st atement entitled, Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screeni ng. Recommendations include becoming educated about developmental issues, risk f actors, screening tec hniques, and community resources that are needed to assist w ith consultation, referral, and intervention implementation. Although recommendations have been provided, some general pediatricians continue to st ruggle with implementing these suggestions (King & Glascoe,

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4 2003). Therefore, one may consider the possibility that some general pediatricians need to be informed on how to implement these recommendations within their practice, instead of simply having knowledge of them. Specifical ly, general pediatrici ans may be in need of practical answers from colleagues who have experien ce with identifying developmental delays and risk factors in a manner that complies with the AAPs recommendations. An examination of these re sponses may assist general pediatricians with answering the question, How can I overcome barriers to the early identification and intervention of young children with delays and disabilities within my practice? Purpose of the Study The purpose of this study was to understand the process used by general pediatricians who adhere to the AAP guideline s regarding the identification and referral of young children with delays and disabilities. It was the researchers goal to discover the specific strategies and procedures implem ented by general pediatricians who have followed these guidelines. Furthermore, the researchers goal was to determine what thought processes, events, and actions have helped these general pediatricians conquer presenting barriers to early iden tification and referral for inte rvention services, as well as their thoughts on why some barriers have cont inued to exist. The researcher sought to provide in-depth and detailed examples from general pediatricians within this qualitative study that may help others overc ome similar barriers. Research Questions The current study documents the experiences of general pediatricians within the West Central Florida area, who work with children having developmental delays and disabilities. The following research ques tions were proposed for this study:

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5 1) What strategies and procedures are general pediatricians implementing (e.g., using developmental screeners to identify childrens needs, referring children in a timely manner to intervention services with in the community, etc.) to effectively screen, diagnose, refer, a nd/or case manage children with developmental delays and disabilities? 2) What specific barriers have general pedi atricians encountered and overcome in an effort to effectively screen, diagnose, refer, and/or case manage children with developmental delays and disabilities? 3) How have general pediatricians overcome these specific barriers in an effort to effectively screen, diagnose, refer, and/or case manage children with developmental delays and disabilities? 4) Which specific barriers continue to preven t general pediatricians from effectively screening, diagnosing, referring, and/ or case managing children with developmental delays and disabilities? 5) In what ways are general pediatricians collaborating with other professionals (e.g., early interventionists, teachers, school psychologists, etc.) in an effort to effectively screen, diagnose, refer, and/or case manage children with developmental delays and disabilities? Importance of the Study In addition to the health field, there al so is a longstanding emphasis on prevention and early intervention services for young ch ildren within the fi eld of early childhood special education (ECSE) servi ces. Several disciplines (includi ng the researchers field of school psychology) focus on meeting the need s of young children in the area of early

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6 intervention (Peterson & Luze, 1996). Wilen (200 3) indicated that there are an increasing number of children entering the school system having delays and di sabilities. Crockett (2004) discussed the critical issues faced by children, which interferes with their successful development. Specifically, a total of 37% of children in the U.S. live in lowincome families, which may influence the type s of resources available to their families. By the time these children enter kindergarte n, they often are behind their peers and may need much assistance from their teachers and ot her school staff in an effort to help them catch up to their peers. However, it is pos sible that if some of these children were identified early and received consistent se rvices before entering the school system, valuable time would have been salvaged and school and community services could focus on the continuation of supportive services fo r these children. Additionally, information obtained by general pediatricians regarding these childrens early experiences could inform other professionals as to the nature of concerns previously faced by the child, well as the effectiveness of early intervention efforts. The early intervention and referral of young children for intervention services by general pediatricians also may reduce the number of children in need of intensive interventions specifically meant to meet th eir individual needs (i.e., Tier 3 services) during the later school years. For example, students who come from low-income backgrounds (e.g., African American students) are often overrepresented in special education classes and classified as educab le mentally handicapped (EMH), which is a highly restrictive and self-contained educationa l setting (Mack, 2004). It is this type of intensive service that could potentially be avoided with the timely identification of concerns and implementation of early intervention services for young children at-risk for

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7 developmental concerns. Overall, this study adds to the curren t research base by providing real-life accounts of how a sample of general pediatri cians overcame the barriers to identifying and referring young children within their practices. Instead of simply stating the barriers and recommendations for overcoming them, this study provides detailed and practical answers of how each general pediatrician has overcome them, as well as the barriers that have continued to pose challenges. The resear cher desired to provide answers that would lead to possible changes in policy regarding longstanding and systemic barriers, increased collaboration among professionals, and furthe r opportunities for the continuing education of healthcare and educational profe ssionals regarding this topic.

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8 Chapter Two Literature Review A Case for Concern Children with D evelopmental Delays and Disabilities Throughout this review of literature, several topics regarding the early identification and early inte rvention of young children with developmental delays and disabilities are discussed. This research review begins with a definition of developmental delays and disabilities, and addresses the prevalence of children with these concerns. Additionally, the causes of th ese developmental concerns, suggested strategies for identifying and intervening ear ly, and the difficulties pedi atricians often have when seeking to achieve the goals of early iden tification and interven tion are discussed. Definition of Developmental Delays and Disabilities Prieto (2002) indicated that developmenta l delays and disab ilities occur when a child fails to reach specific developmental milestones around the time expected for sameaged peers. Specifically, definitions state that a developmental delay occurs when there is a 40% delay within a single developmental domain (e.g., communicatio n) or there is the presence of 25% delays in two or more areas of development (e.g., communication, cognitive, and fine motor). Furthermore, a glob al delay occurs when there is a significant delay in two or more developmental doma ins. The number of infants and young children with developmental delays within the genera l population has shown a notable increase in occurrence over the past 20 years (Prieto, 2002). The developmental delay becomes a disability when there is consistent failure in attaining these milestones, which results in

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9 impaired functioning. The goal is to prevent th e occurrence of a stable disability within developmental domains (e.g., behavior, cogni tive, social-emotional, etc.) via early identification of developmental problems a nd the implementation of early intervention services. Approximately 40 years prior to date young children with developmental disabilities experienced inadequa te care and ineffective services to assist with their concerns. In fact, these childre n were often ignored and even isolated from the general population due to their various conditions (e.g., mental retardation) until the enactment of the Education for All Handicapped Children Act in1975. This act was the impetus for the development and implementation of early childhood demonstration projects and programs. Currently named the Individuals wi th Disabilities Edu cation Improvement Act (IDEIA) of 2004, children with delays and di sabilities may be identified starting at infancy, with entitlement for special education services beginning as early as three years of age. Additionally, IDEIA 2004 supports th e No Child Left Behind Act of 2001 and addresses principles of the law such as evaluation procedures, early intervention services, and funding issues (Gartin, 2005). These regula tions are pertinent to those within the educational profession, such as school psychol ogists, who are particularly invested in ensuring that children receive the best academic and behavioral support services that are available. The National Association of School Psychologists (NASP) defined school psychologists as individuals with speciali zed training in psychology and education, and who also use their training to collaborate with parents, educators, and other professionals in an effort to facilitate a childrens learning within healt hy, supportive, and safe environments (Fagan & Wise, 2000). Additionally, school psychologists have experience

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10 with prevention, assessment, intervention, and consultation activities for children of all ages and developmental levels (Fagan & Wise, 2000). School psychologists often encounter chil dren with developmental delays and disabilities within the educational system. Due to the influx of children continuing to need frequent and intensive in tervention services, it is importa nt that school psychologists identify concerns as early as possible. Sc hool psychologists often identify students with developmental delays and disabilities and link them to the necessary educational services. However, the early identification and early intervention of deve lopmental concerns would be even more effective, in some cases, if it occurred earlier in the childs development. For example, most children will be seen by their pedi atrician several times throughout their early years during well-child visits, before ever meeting a school psychologist. Therefore, the pe diatrician is the most likel y professional to assess early developmental concerns (Sices, et al., 2004) What is unknown is the degree to which general pediatricians have the resources avai lable to them to fulfill the role of early identification and referral fo r children who are at-risk for or exhibiting developmental delays and disabilities (Sices et al., 2004). Prevalence of Children with Delays and Disabilities The early childhood years have a critical influence on later outcomes of schoolaged children. Prevalent issues among childre n, such as learning di sabilities, speech and language impairments, and ment al retardation, are often related to early developmental problems (Dworkin, 2001). Sices et al. (2004) reported that approximately 17% of children under the age of 17 y ears living within the United St ates have been diagnosed with at least one disability and approximately 30% of this population is known to have

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11 multiple disabilities. Sices et al. (2004) also stated that young children with developmental delays are of ten under-identified a nd under-served. Specifically, between the years of 1999 and 2000, only 1.8% of childre n under the age of th ree received early intervention services, while approximately 5% of preschool-aged children received intervention services. Furtherm ore, a study published in the Journal of Policy and Practice in Intellectual Disabilities examined the reasons why infants and toddlers entering Part C early intervention services are eligible according to reports given by service providers. Results show ed that 62 percent of infant s and toddlers were eligible because of developmental delay, 22 percent were eligible because of a diagnosed condition, and 17 percent were eligible because they were at risk for developmental delay (Scarborough, Hebbeler, & Spiker, 2006). Causes of Developmental Delays and Disabilities Berk (2000) indicated that causes of de velopmental problems are often connected to conditions or exposure to teratogens, whic h arise during the prenatal, perinatal, and postnatal periods of development. The age of the fetus, dose of the teratogen, and genetic makeup of fetus and parent all influence the childs development. Pr enatal risks include developmental conditions that arise due to a genetic and/or an environmental origin (e.g., chromosomal abnormalities, infections due to maternal conditions, etc.). For example, a childs prenatal exposure to te ratogens such as aspirin, toba cco, alcohol, cocaine, crack, heroine, and marijuana may cause harmful effects in their development such as prematurity, low birth weight, cognitive diffi culties, poor motor coordination, behavioral problems, and/or facial abnormalities (such as those seen in children with fetal alcohol syndrome/effects). Consistent exposure and/or exposure to a combination of teratogens

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12 may even cause death. Perinatal risks include conditions such as intracranial hemmorage and asphyxia, which extend from the seventh month of pregnancy to the first 28 days after birth. Finally, postnatal ri sks consist of conditi ons that begin after the first month of life, including respiratory disorders, nu tritional deficiencies, and accidents (Knopp & Krakow, 1983). Berk (2000) also noted the eff ects of pollution, a postnatal factor, in industrialized nations and innercity areas where chemicals su ch as mercury and lead are released into the atmosphere, therefore causing deleterious health concerns. Overall, Berk noted that teratogens can have harmful eff ects on a childs deve lopment by influencing prematurity, low birth weight brain damage, physical de fects, and even death. Many teratogens have been known to especially impact children from poverty areas within the country. Poverty negativel y affects a childs functioning, especially young, developing children who persistently live in poverty, and children who live in extreme poverty conditions (Morris & Gennetian, 2003). In fact, poverty has the strongest, negative impact on a childs acad emic achievement (Duncan & Brookes-Gunn, 1997). Noble, Norman, and Farah (2005) stated that socioeconomic status (SES) is strongly associated with cognitive abili ty and achievement during childhood and throughout adolescence. For example, Halle, Kurtz-Costes, and Mahoney (1997) reported that children who live in povert y score lower on standardized achievement tests and are less likely to finish high school, attend co llege, and pursue postgraduate education when compared to their more advantaged peers. Poverty also can have negative effects on a childs health, therefore affecting his or her cognitive development. Pollitt (1994) reported that poverty areas within the United States and low-income countries have high percentages of infants with anemia, which is linked to poor performance on mental and

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13 motor tests among infants and children. Pollitt further noted that there exists evidence from the United States and developing c ountries suggesting a negative impact of concurrent illnesses and poor nutrition on a childs learning in school. Unfortunately, individuals living in p overty have more exposure to various teratogens, such as drugs and environmental hazards, than individuals not living within these environments. Additionally, individuals living in poverty have limited access to resources (e.g., finances, hea lthcare, community programs, etc.) that can help them overcome their daily challenges (Morris & Gennetian, 2003). Parent factor s correlated to poverty that also influences childrens development are me ntal and physical health, as well as education level (Prieto, 2002). The Importance of Early Id entification and Intervention Dworkin (2001) indicated that the ra tionale for the early detection of developmental problems not only relies on the fact that a childs early years affect later school success, but also that addressing problems early can aver t the occurrence of secondary problems (e.g., low self-esteem). W ilen (2003) noted that many children often arrive to school settings lacking the necessary intellect ual, social, emotional, and language skills that are necessary for them to benefit from the educational system. Sandler et al. (2001) explained that early intervention servic es are developed for children from birth to three years of age, who demonstrate a developmental delay within their physical, cognitive, communication, social, emo tional, and/or adaptive development, in an effort to prevent later school failure. Federal mandates. The 2004 Individuals with Disa bilities Education Act (IDEA) Reauthorization, states that all individuals with disabilities have access to a free and

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14 appropriate public education (Sil verstein, 2005). Within Part C of this Act, requirements for infants and toddlers are noted as it refers to early intervention se rvices. In particular, Part C requires that all states have a Child Find system to ensure that children are being properly identified and evaluated. Child Find typically maintains contact with primary referral sources such as hos pitals, childcare programs, physicians, parents, local education agencies, and social service agen cies (National Center for Medical Home Initiatives for Children with Special Needs, 2003). There ar e specific requirements to provide services for infants a nd toddlers (birth to age thr ee) with disabilities and their families. Among these requirements are eval uation and eligibility determination, the development of Individualized Family Serv ice Plans (IFSPs), and service coordination for early intervention. Furthermore, related laws such as the Americans with Disabilities Act (ADA) and Section 504 of the Rehabil itation Act of 1973 maintain protections against the discrimination of children with di sabilities (Walsh, Smith, & Taylor, 2000). The Head Start Act addresses the res ponsibilities of childcare professionals serving children with disabilities who are in Head Start and Earl y Head Start programs (Walsh, Smith, & Taylor, 2000). Finally, th e Division for Early Childhood (DEC) is known for its dedication towards developing a nd promoting policies and procedures to further support mandates for children with disabilities and their families. The core responsibility of the DEC is to identify recommended practices in early intervention for young children birth through five years. Some of the values and beliefs upheld by the DEC involve maintaining respect for childre n and families; implementing high-quality, comprehensive, coordinated, and family-centere d services; and ensuri ng that all children participate actively within their family a nd community environments (Sandall, McLean,

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15 & Smith, 2000). Identifying Children with Developmental Concerns The general pediatricians role. General pediatricians play a very vital and influential role in the lives of children and families. They are familiar with child health and developmental concerns, and have the abil ity to consult with va rious child healthcare providers in an effort to refer children and families to the appropriate services. General pediatricians often have the ability to set the standard of care within their communities concerning the treatment of children with dela ys and disabilities (S andler et al., 2001). Additionally, general pe diatricians serve within a uni que position allowing them to routinely see children less than five years of age for preventiv e care visits and facilitating the identification and referra l of young children with develo pmental delays in a timely manner (King & Glascoe, 2003). Family involvement. Research has shown that ther e is a strong relationship between parents concerns a nd their childrens developmental status, demonstrating a strong need for general pediatricians to effectively communicate and collaborate with families to address the service needs of children (Glascoe, 2000). Parents and caregivers are extremely vital in providi ng information on their childs developmental history and current language, cognitive, motor, and social-emotional development. In fact, systematically gaining parents perspectiv es regarding their ch ilds development is considered an effective method of iden tifying young children w ith developmental problems, in addition to being the least costly short term developmental screening approach (American Academy of Pediatrics 2006). Glascoe and M acLean (1990) stated that parents appraisals of their childs de velopment can assist h ealthcare professionals

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16 with identifying concerns. Additionally, the aut hors reported that parents whose concerns involved speech, language, cogni tive, or fine motor issues, had children with an 80% chance of failing standardized developmental screening tests. The American Academy of Pediatrics (2006) indicated that the early diagnosis of disabi lities, such as autism, is dependent upon obtaining parental concerns about their childs development, followed by a careful interpretation of thos e concerns. Glascoe (2000) report ed that parental concerns related to childrens hearing are strong indicators of hearing problems. One way of systematically eliciting pare ntal concern is by ut ilizing parent report measures. Parent report measures may be completed independently by parents. Barriers to using parent report measures include poor parental reading skills and/or language difficulties. However, these issues can be easily solved via alternative methods, such as the oral administration of the measure by a professional or using a translated tool (American Academy of Pediatrics, 2001a). Additionally, the use of technology during well-child visits and other screenings was considered effective in obtaining parent concerns and enhancing their knowledge, while facil itating a timely visit. For example, Sanghavi (2005) supported the use of an edu cational kiosk contai ning interactive and computerized tutorials that solicited child information, produced computerized summary reports, and provided anticipatory guidance fo r parents living in an impoverished county of New Mexico. This intervention met hod was found to further increase parent knowledge as compared to the use of printed materials alone. Overall, research has shown the importance of including the view point and experiences of parents and caregivers when assessing their childs developmental status (American Academy of

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17 Pediatrics, 2006). Table 1 provi des a detailed list of a few parent report measures currently used by general pe diatricians in practice. Table 1. Parent Report Measures Parents Evaluation of Developmental Status (PEDS) Ages and Stages Questionnaire (ASQ) Communicative Development Inventories (CDI) Pediatric Symptom Checklist Purpose Time/Cost Reliability/Validity Language Detects developmental and behavioral problems in children from birth to age eight Identifies children with and without delays Quick to administer and inexpensive Demonstrates standardization, reliability, validity, and accuracy Available in Spanish Screens infants and young children for developmental delays during 1st five years Provides a high percentage of correctly identified children with and without delays 10-15 minute administration time and inexpensive Proven reliability and validity Available in Spanish, French, and Korean. Screens children 8 to 30 months in language and communication skills 20-40 minute administration time and 10-15 minute scoring Proven reliability and validity Available in English Screens a broad range of emotional and behavioral problems that make up a childs psychosocial functioning. Used with preschool and school-aged children Short, onepage questionnaire Proven validity and high rates of sensitivity and specificity Available in English

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18 Surveillance and screening of developmental concerns. Developmental surveillance is a flexible, continuous process used by profe ssionals who conduct skillful observations of young children during the provis ion of healthcare, while screening is a brief assessment procedure used to iden tify children who should receive a more comprehensive assessment or intensive dia gnosis (American Academy of Pediatrics, 2006). Specifically, screening complements the surveillance process by detecting delays or disabilities through the periodic use of standard tools for all children (American Academy of Pediatrics, 2001a). Within both processes, healthcare providers such as general pediatricians can assist with early identification of children with a variety of concerns, including cognition, communication, mo tor, social-emotional, self-help or adaptive, sensory, and problem-solving skills (Yarbrough, 2001). Developmental surveillance and screening duri ng well child visits would a ssist in helping healthcare professionals offer preventive guidance to families of children with developmental difficulties (American Academy of Pediatrics, 2001a). According to the National Survey of Early Childhood Health conducted in 2000, 2068 parents of children aged 4 to 35 months of age reported whethe r recalled receiving a developmental assessment from their childs pediatric provider. Specifically, parents were asked to recall whether the pediatric prov ider had informed them that he or she was doing a developmental assessment and/or wh ether they recalled observing their child engage in tasks such as stacking blocks or throwing a ball. The results of this survey demonstrated that 57% of children 10 to 35 months of age received a developmental assessment. Also, 42% of parents recalled havi ng their childs pedi atric provider inform them that a developmental assessment was being completed. Furthermore, 39% of

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19 parents recalled their child being asked to perform specific tasks routinely included in a developmental assessment (Halfon et al., 2004). The American Academy of Pediatrics (2001a) noted that over the past several years, developmental testing by general pedi atricians has been ma de easier through the development of efficient screening tools. The use of developmenta l screening tools is considered to be an efficacious way of iden tifying children with developmental delays (Sices et al., 2004). Screening tools can be specific to a disorder (e.g., autism), an area (e.g., cognitive, language, or motor development) or they may examine multiple areas of concern (Centers for Disease Control and Prevention, 2005, para. 1). Many tools are considered efficient, especially those that ha ve adequate sensitivity, specificity, validity, and reliability, and have been standardized on diverse populations. Charman (2003) noted that sensitivity refers to the proportion of children with a disorder who are identified by the screening tool. Specificity includes the proportion of children without the disorder who the screening tool identif ies as exhibiting normal deve lopment. Stringent criteria exist for screening tools to detect developm ental concerns. For example, sensitivity is required to be high so that the screen misses few cases of the disability of concern, while specificity also is required to be high to pr event the identification of false positives. High validity of a screening tool demonstrates that the tool is measuring what it purports to measure, while a high level of reliability note s that the tool is consistently measuring a construct or domain (Yarborough, 2001). Screen ing tools with these attributes are recommended for use when determining a childs level of skill and development (American Academy of Pediatrics, 2001a). Ta ble 2 provides a detailed list of a few screening tools currently used.

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20 Table 2. Screening Tools Bayley Infant Neurodevelopmental Screener Early Language Milestone Scale Second Edition CATCLAMS Brigance Screens Purpose Administration Time/Cost Reliability/ Validity Language Screen infants at risk for developmental delay or neurological impairment. Also examines the auditory, visual, verbal, motor, and cognitive functions of children age 3-24 months. 10-15 minute administration time -Test-retest reliability ranges from .71-.84 -Interrater reliability ranges from .79-.96 -80-88% classification agreement for children with developmental delays Administered in English Assesses speech and language development from birth to36 months of age. Also examines auditory expressive, auditory receptive, and visual abilities. 1-10 minute administration time Information not available Administered in English Identifies development al delays in children from 1-36 months of age. Also examines visual-motor functioning and expressive and receptive language 6-20 minute administratio n Information not available Administere d in English Screen used for infants through 90 months. Also examines speechlanguage, motor, readiness and general knowledge, and socialemotional, and reading and math skills. 10 minute administration time and inexpensive High sensitivity and specificity for giftedness and developmental and academic problems Screens available in Spanish, Laotian, Vietnamese, and Cambodian

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21 Guidelines for identifying developmental concerns. In addition to using validated screening tools when identifying concerns, spec ific guidelines have been established for general pediatricians and other professiona ls concerned with ad equately identifying developmental concerns and providing services for children and families. According to Nickel and Desch (2000), there are general guidelines that physicians are to follow during well child visits in an effort to identify and refer children with developmental problems. First, it is suggested that phys icians use a parent report measure to determine if there are any concerns. If warranted, a more thorough investigation of concerns may be conducted via screening the child to obtain information regarding current leve l of ability. If the information gathered from this screening indicates or validates concerns, it is the physicians role to consider the childs eligib ility for early interven tion services and then refer him or her accordingly. The authors noted that if no problems are determined at any point throughout this screeni ng process, the physician should simply continue monitoring the childs development. Nickel and Desch (2000 ) stated that, in general, children should be screened at 4, 8, 12, 18, 24, 36, and 48 mont hs during each well-child visit, which includes using informal observations and a review of parent concerns. The medical home. General pediatricians are faced with several responsibilities involving their work with children having delays and disabilities. According to Sandler et al. (2001), there exists growing evidence that early intervention services have a positive impact on the developmental outcome of childre n with established disa bilities, as well as children who are considered to be at-risk for disabilities. Implementing a medical home for a child is an ideal method used to encourage the appr opriate case management of childrens development. Within a medical home, a pediatrician is infl uential in providing

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22 primary care for children and collaborating with the childs family and community professionals to identify a nd access all medical and non-medi cal services needed. The purpose of the medical home is to provide accessible and comprehensive primary care services, while simultaneously creating a fa mily-centered, compassionate, and culturally effective environment for children and familie s. Strictland et al. (2004) operationalized the medical home concept using 5 components: 1) having a usual place for sick/well care, 2) having a personal doctor or nurse, 3) experien cing no difficulty in obtaining needed referrals, 4) receipt of needed care coordination, and 5) presence of familycentered care. Both the American Academy of Pediatrics and the American Academy of Family Physicians indicated the implementa tion of the medical home as best practice (Cooley, 2004). Barriers to implementing medical homes include a lack of knowledge about the medical home concept, a lack of pr ofessional time and office personnel to assist with implementation, and a lack of reimburseme nt for care coordinati on services (Nickel, Cooley, McAllister, & Samson-Fang, 2003). The general pediatricians office is the only place wher e most young children under the age of five years are seen for preventive care visits, therefore making the pediatricians role ideal for conducting developmental screenings (Sices et al., 2004). When general pediatricians collaborate with fa milies and early interv ention services, they are able to provide a medical home for children with special needs a nd services (Sandler et al., 2001). Within the medical home appr oach, high quality and cost-effective health care is provided by the pediatrician who works in a partnership with the family. This care is continuous, coordinated, and comprehensiv e (American Academy of Pediatrics, 2002). Within this team, general pediatricians provide leadership for the medical home and as a

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23 member of the early intervention team by consistently reviewing and renewing child goals and consulting with the family, therapis ts, and other service providers within the community to ensure the best care for childre n with developmental de lays and disabilities (Sandler et al., 2001). Cooley (2004) reported th at no studies regarding the outcomes applying the medical home concept exist. Although, survey s have been completed to understand the parental perspective on the effectiveness of the medical home. For example, Palfrey, Sofis, and Davidson (2004) reported family satisfaction with primary care using a medical home model (i.e., Pediatric Alliance for Coordinated Care). Outcomes showed high levels of parent satisf action care provided by the medi cal home for children with health and developmental conditions rated as severe. Also, there were significant decreases found in parental absence from work and in hospitalizations for their children. Additionally, the National Survey of Children with Special Health Care Needs showed that children without a medical home were twice as likely to delay receiving needed care and to have continued, unmet healthcare ne eds (Strickland et al., 2004). Despite the usefulness of medical homes and their ability to provide services to families with children having developmental delays and disabilities, certain barriers exist that make it difficult for general pediatricians to id entify concerns, refer children to intervention services, and maintain continued collaboration with othe r childcare professionals. Some barriers are child and family-specific, while other report ed barriers are related to the pediatrician, office, or the broader field of pediatrics. Barriers to Early Identifi cation and Intervention Identifying concerns and referring for early intervention services. Barriers to the

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24 early identification and referral of children w ith developmental delays exist within the general pediatricians daily routine and within the nature of assessing a childs developmental status. For example, child development is a process which entails the occurrence of both growth spurts and stalls, which makes it difficult to pinpoint a childs developmental level at any given time. Ther efore, many general pediatricians may seek the presence of clear-cut delays before a refe rral is made, to decr ease the occurrence of false positives (King & Glascoe, 2003). Making the decision to wait for the presence of a clear-cut developmental delay may, in turn, im pede the intervention process with children in much need of services. Sices et al. (2004) conducted a mail surv ey with family physicians and general pediatricians to determine their practices when identifying children with developmental delays during preventive care visits. The sample consisted of 1600 practitioners (800 family physicians and 800 general pediat ricians) from among all practicing U.S. physicians within the American Medical Associ ation Physicians Data File. The findings of this study demonstrated that most physic ians (both general pediatricians and family physicians) elicited the presence of de velopmental problems by using lists of developmental milestones and/or the verbal prompting of parental concern, although this verbal prompting did not include the use of validated instrume nts. In fact, less than 15% of the physicians in this study used parent -completed questionnaires which have been proven reliable and timesaving. Finally, physicia ns reported themselves as the primary individuals responsible for developmental surv eillance, which indicated that the use of other office personnel for this task does not occur often within the pediatricians office. On the other hand, differences were seen between general pediatricians and family

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25 physicians. Specifically, general pediatricians were more apt to use validated screening instruments when compared to family physic ians, perceived a greater availability of community resources, and reported havi ng higher self-efficacy in identifying developmental concerns (which may be attrib uted to their training) when compared to family physicians (Sices et al., 2004). Although general pediatricians may consid er themselves more competent at identifying developmental concerns when compared to family physicians, the 2000 American Academy of Pediatrics survey found that two-thirds of pediatricians did not feel adequately trained to conduct deve lopmental assessments (Halfon, Regalado, McLearn, Kuo, & Wright, 2003). In fact, pediat ricians reported spending most of their time with parents discussing typical concerns such as immunizations, nutrition, and sleep issues. Furthermore, the Promoting Healthy Development Survey (PHDS) was created to assist providers, consumers, purchasers, and policy makers in assessing the degree to which health plans and practitioners provide recommended developmental services for children up to four years old. Results from the PHDS, which examined the quality of developmental services with a large population (N=3542) of Medicaid-enrolled children in Washington State, showed that approximate ly 50% of the parent s reported having one or more insufficiently answered behavioral or developmental concerns after visiting their childs health provider (Halfon et al., 2003). Additionally, parent responses showed that 42% of the children within this population were at a high risk for developmental and/or behavioral delays, yet had not been iden tified as needing services. Research has noted additional barriers to identifying delays and referring children for services that are both internal and external to the pediatricians office (Halfon et al.,

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26 2003). Specifically, pediatricians and patie nts typically endure a very short (e.g., approximately 10-15 minutes) well-child visit wh ere parental concerns must be addressed as best (and as quickly) as possible. In one study, Lebaron, R odewald, and Humiston (1999) noted the component parts of a typical well-child visit in minutes. The study was conducted with 164 children aged two year s and younger, and took place with five pediatric practices and two public providers in New York State. Results showed that patients spent 16.3 minutes with the primary care physician, which included time for the physical examination, vaccination discussion, va ccine administration, and a discussion of other health concerns. Nurses encountered a pproximately 5.6 minutes with patients, also including time for a physical examination, va ccination discussion and administration, and a discussion of other health concerns. During the first year of life, six well-child visits are recommended. Additionally, the total time of well-child care ranged from 45 to 90 minutes during the first year of life, which declines each year after (Lebaron, Rodewald, & Humiston, 1999). Other barriers consist of insufficient training in eliciting developmental and behavioral concerns and insu fficient training administering standardized instruments. Most pediatricians rely on clinical judgme nt when assessing developmental concerns. However, the sole use of clinical judgment identifies less than 30% of children with mental retardation, learning disabilities, la nguage impairments, or other developmental disabilities. Additionally, the us e of clinical judgment identif ies less than 50% of children with serious emotional and behavior problems (Glascoe, 2000). As a result, screening and assessment activities should be conducted by pediatric providers with the use of validated instruments (Halfon et al., 2004). However, ge neral pediatricians and their support staff

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27 frequently have little to no training in usi ng standardized tools in the structured manner they are intended to be used, which poses the difficulty of accurately assessing a childs developmental status (American A cademy of Pediatrics, 2001a). Paying for the cost of these instruments also poses a concern for pediatricians, therefore, financial incentives aligned with the goals for improving preventive care services are needed (Halfon, Inke las, Abrams, & Stevens, 2005). Another barrier involves the use of billing codes for the reimbursement of preventive care visits. Specifically, billing and payment for developmental services may need to be standardized (Halfon et al., 2005). According to AAP, the correct coding of services is necessary for increased efficacy and timely referral of children with developmental concerns (National Center for Medical Home Initiatives for Children with Special Needs, 2003). Helping families transition to early intervention services. In addition to reimbursement factors, the costliness of instruments, and the time and skill needed to administer instruments and elicit developmenta l concerns, it has been noted that general pediatricians are often uninvolved in the pro cess of assisting children and families with their transition to early interv ention services. This may be due to general pediatricians having a lack of knowledge regarding the co mmunity resources ava ilable for assisting children and families (American Academy of Pediatrics, 2001a), as well as not having the office resources to facil itate this process. For example, Silverstein, Grossman, Ko epsell, and Rivara (2003) conducted a national study assessing the reported practices of general pediatricians on referring children to Head Start. Results showed that while 80% of general pediatricians discussed childcare placements with the families of preschool-aged children, only 14% of general

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28 pediatricians were able to assist their familie s with the actual process of applying to Head Start. Barriers noted by general pediatricians regarding the la ck of assistance provided to families who were applying to Head Start i nvolved insufficient office time (77%) and a lack of nonphysician office staff to as sist with the process (71%). Considering that a lack of office time a nd non-physician staff ar e frequent barriers for most general pediatricians, service coordinators are often the individuals of choice for connecting children and families with community resources. Guralnick (2000) stated that service coordinators gather initial information from the family seeking intervention services for their child, in addition to other disciplines that the child may have contact with. Also, these coordinators assist with guiding families from the intake period, through the formal assessment period. After developm ental evaluations have been completed, service coordinators are desi gnated to assist with the de velopment of the Individual Family Service Plan (IFSP) and help coordinate and facilitate early intervention services for children and families (Nolan, Young, Hebert, & Wilding, 2005). Some pediatricians (e.g., pediatricians working w ithin a hospital or clinic) have contact with service coordinators who can assist them with referring children to the appropriate community programs. Collaboration with serv ice coordinators is imperative to ensure that the childs care among providers is seamless. However, No lan et al. (2005) examined reports of early intervention service coordinators co mmunication with medical professionals and found the opposite to this exp ectation. Results showed that 83% of the service coordinators noted that physicians did not provide input regardi ng the development of Individual Family Service Plans (IFSPs) fo r children with developmental delays and complex healthcare needs. Overall, it is imperative that general pediatricians are aware of

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29 community programs for children, as well as maintain consistent communication with other childcare providers re garding their insights. Overcoming Barriers American Academy of Pediatrics (AAP) Recommendations The AAP has developed recommendations for all healthcare providers working with infants and young children. These guidelines are to assist general pediatricians and others with screening for developmental delays and intervening with the identified children and their families within the framework of a medical home. It is assumed that as general pediatricians consistently follow th ese guidelines, the presence of barriers will decrease. According to th e American Academy of Pediatrics (2001a), general pediatricians should do the following: 1. Maintain educated about developmental issu es, risk factors, sc reening techniques, and community resources to assist with consultation, referral, and intervention. 2. Acquire the skills needed to administ er and interpret valid and reliable developmental screeners. 3. Develop a strategy for providing periodic scr eening in the context of office-based primary care. 4. Present screening results to families using a culturally sensitive and familycentered approach. 5. Refer children with developmental delays in a timely fashion to the appropriate early intervention/early childhood programs within the community. 6. Determine the cause of delays or consu lt with the appropria te consultant for determination.

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30 7. Maintain relationships with community-bas ed resources and coor dinate care with them through the medical home. 8. Increase parents awareness of develo pmental disabilities and resources for intervention. 9. Be available to families to interpret consultants findings. Additionally, the American Academy of Pediatrics (2001a) proposed three main recommendations that would assist genera l pediatricians in properly identifying and referring children with disabilities and th eir families. The first recommendation involves the screening and evaluation of infants w ith disabilities or who are at risk for developmental delays with the appropriate screening tools. The second recommendation implies that providers should refer children pr omptly for intervention services. The third recommendation suggests that providers obtai n a medical etiologic diagnostic evaluation as appropriate. Current Study Despite the recommended goals that genera l pediatricians are to follow, barriers to working effectively with young children and families continue to exist within pediatric practice. However, there are cases where general pediatricians have overcome these barriers to the early identification and early intervention of children with developmental concerns. The current study sought to identify general pediatricians within the West Central Florida area who have implemented the AAP guidelines. The goal was to determine specific strategies general pediatri cians have been able to implement within their practices to overcome presented barri ers. Additionally, the researcher was interested in understanding wh ich barriers, despite these st rategies, continue to exist

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31 within their practice. Specifically, insight wa s gained from pediatricians regarding their daily practices. Through the use of qualita tive methodology, the re searcher sought to understand the strategies implemented by general pediatricians within various environments, while simultaneously providi ng possible solutions for other general pediatricians who have sought to overcome sim ilar barriers within their respective work environments.

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32 Chapter Three Methodology Theoretical Framework Social research involves a set of concerns or questions regardi ng the orientation of a researcher that supports a particular th eoretical view (Carspecken & Apple, 1992). Within social research, qualitative research specifically focuses on the interpretation of personal experiences, the meaning of social phenomena, and the links among a larger number of attributes across relatively few cases (Bogdan & Biklen, 1992). Pope, van Royen, and Baker (2002) stated that qualitative research questions tend to be exploratory and the sample used is based on predetermined criteria in an effort to include a range of constituencies. Design A mixed-method design was used to addr ess the research que stions as both quantitative and qualitative information were needed. The quantitative information was obtained from the responses on the online su rvey entitled Young Children with Delays and Disabilities. Qualitative information wa s obtained through the development of an interview protocol, based on th e online survey responses. A collective case study approach (Brantli nger, Jimenez, Klinger, Pugach, & Richardson, 2005) was used for the interview por tion of this study to note the experiences of general pediatricians. According to the authors, a collective case study takes place in multiple locations or documents the personalized stories of several similar or distinctive

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33 individuals. Freebody (2003) stated that resear ch utilizing multiple cases can add weight to the results by replicating patterns, which increases confidence in the robustness of the theory. Additionally, the cases within this study were consid ered exploratory, due to the researchers attempt to ascertain information as to which factors have enabled general pediatricians to overcome barriers within their practices. Within this study, the researcher sought to examine the experiences of general pediatricians in an effort to understand their unique and simila r practices via semistructured interviews (Gall, Borg, & Gall, 1996). Bogdan a nd Biklen (1992) noted that semi-structured interviews enable researcher s to obtain comparable data across subjects. These interviews provide the flexibility and unstructured format of open-ended questioning, while also providing direction for the research th at produces focused, qualitative, and textual data at the factor level. Semi-structured interviews can be used to clarify central domains and factors, operati onalize factors into va riables, and develop preliminary hypotheses about a topic. Using a semi-structured format within this study enabled the researcher to ask several specif ic questions, while utilizing follow-up probes to allow for the elaboration of topics. Participant Recruitment and Sampling The AAP is a professional membership organization of 60,000 primary care pediatricians, pediatric medica l sub-specialists, and pediatric surgical specialists who are dedicated to the health, safety, and well being of infants, children, adolescents and young adults. The AAP also is composed of 66 re gionally-based Chapters throughout the United States (American Academy of Pediatrics, 2008 ). One hundred and fift y pediatricians who are members of the Region V Florida Chapter of the American Academy of Pediatrics

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34 (AAP) were selected to participate in an on line survey created by the researcher for the purposes of this study (See Appendix D). Of these 150 individuals, 28 general pediatricians (19%) completed the online su rvey. Sandelowski (1995) stated that an adequate sample size in qualitative inquiry permits a deep, case-oriented analysis, yet results in a new and richly textured understanding of ones experience. Additionally, Sandelowski (1995) suggested that qualitat ive study directed towards discerning the nature of experiences includes approximatel y six participants. Furthermore, Pope, van Royen, and Baker (2002) noted that sample si zes for interview studies tend to be much smaller than those used in quantitative research. For this reason, one pilot participant and six study participants out of 28 who completed the online survey were interviewed due to the amount and complexity of information potentially obtained within each case study (Blaxter, Hughes, & Tight, 2001). Purposive sampling was used to select specific participants who implemented the American A cademy of Pediatrics (AAP) best practices for the identification, diagnosis, referral, and/or case management of children with developmental delays and disabilities. Demogr aphic variation also was utilized in an effort to include a sample of general pediat ricians who worked in multiple settings (e.g., hospital, clinic, etc.), represented both gende rs and a variety of ag e ranges, and ranged in years practice within th e field of pediatrics (Sandelowski, 1995). Procedures The researcher received a pproval to conduct this study through the Institutional Review Board (IRB) Division of Research Inte grity and Compliance at the University of South Florida. After receiving the Boards ap proval to proceed with data collection, the researcher contacted a local pediatrician who al so served as a past representative for the

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35 Region V Florida Chapter of the AAP. This i ndividual provided the researcher with email addresses to enable communication via em ail with the 150 pediatricians who were members of the Region V Florida Chapter of the AAP. An introductory email was sent to the members of the Region V Florida Chapter of the AAP (See Appendix A). This email stated that the pediatrician had been selected to participate in an online survey examini ng his or her experiences with serving young children with developmental delays and disab ilities. Furthermore, the email noted that seven pediatricians would be selected to take part in a face-to-face interview in an effort to gather additional insight regarding their experiences. Phase one: online survey. After consulting with the researchers committee members and the local pediatrician, an online survey was chosen as the most effective method for obtaining reliable feedback from general pediatricians regarding their willingness to participate in this study. The researcher created an online survey that was posted on Survey Monkey, a website known for assisting with the setup and hosting of surveys. This brief online survey entitled Young Children with Dela ys and Disabilities, assisted with gaining preliminary informati on about each pediatrician in an effort to select interview candidates. Considering the Region V Florida Chapter of the AAP consists of all pediatricians (e.g., developmental pediatricians, general pediat ricians, etc.), the re searcher screened the demographic information provided by each individual in the online survey in an effort to only select general pediatricians. This st udy focused on general pediatricians because they specialize in the diagnosis and treatment of a variety of al iments specific to children, including ongoing assessment of growth and development. Overall, this survey inquired

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36 about information regarding demogr aphics, the implementation of AAP recommendations, and the barriers to succe ssfully implementing AAP recommendations. A follow-up email (See Appendix B) was se nt to the 150 pediatricians, both one and two weeks after the initial email was sent to help increase the response rate. This generic email thanked those w ho participated in the onlin e survey and reminded those who had not yet participated to do so. This follow-up email included the following components recommended by Dillman (1978): ti e to previous communication, recognize the importance of the survey, explain why th e completion of the survey is important, discuss the usefulness of th e study and the importance of recipients to the studys usefulness, and provide a reminder in addition to a note of appreciation. The online survey consisted of four sections and took approximately three to five minutes to complete. The first section inquired about each pediatricians demographic information (e.g., practice setting, years in prac tice, specific expertis e, etc.). The second section inquired about the approximate per centage of time each pediatrician spends engaging in specific AAP reco mmendations. The third section identified the common barriers to implementing AAP recommendations. Finally, the fourth section informed the pediatrician that he or she may be selected to participate in an interview to gather additional information. Phase two: selection of interview candidates. Upon receiving completed online surveys, the researcher screened the data for participants who were general pediatricians, and rank ordered each participant by the number of AAP recommendations implemented. The participants were rank or dered according to the number of AAP guidelines followed. The seven general pediatricians (i.e., six study participants and one p ilot participant) who

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37 ranked highest on these guidelines were cont acted for participation within this study, while information from additional candidates was held in the even t of attrition. The individual ranked seventh was chosen as the pilot participant. A total of seven general pediatricians ag reed to participate in a face-to-face interview. One interview part icipant encountered a schedulin g conflict after agreeing to participate on a specific date and was unable to reschedule. Therefore, the researcher selected an additional interview participant who ranked the next highest for following the AAP guidelines from a list of potential partic ipants. As an incentive for participation, each of the seven participants was informed th at he/she would receive a restaurant gift certificate at the culminati on of their interview. Phase three: interview process. The researcher scheduled the interviews via email and/or phone communication with each interview participant. An informed consent document (See Appendix C) explaining the potentia l risks and benefits of participating in the study was provided to each interviewee prior to starting the interview. The participants were required to sign and date the informed consent document noting their willingness to participate. One interview participant was unable to make the face-to-face interview, although preferred to complete the interview via co nference call. In this case, the researcher emailed the informed consent document to the interviewee. In return, the interviewee faxed the researcher a signed in formed consent document and completed the interview via phone. During the interview, the researcher had information regarding the AAP recommendations that the pediatrician had reported consistently implementing for the majority of his/her patients. Additionally, an interview protocol was utilized to facilitate

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38 effective questioning during the interview (S ee Appendix E). The researcher also used the AAP and barrier checklists from the origin al surveys to ask each participant specific questions relative to his or her experience. For example, if th e participant noted overcoming four barriers (e.g., obtain reimbursement for preventive services, administer validated screening tools, score validated screening tools, and refer families to community resources) on the online survey, the researcher formulated the interview protocol to specifically ask the general pediatrician how he or she had overcome these barriers. Additionally, the researcher queried the participant regarding the reasons why he or she had not been able to overcome the re maining barriers. Using this information, the researcher directly asked each interviewee que stions and recorded their responses while using an audiotape and handwritten notes. An example of a prompt used to elicit additional information is, You indicated that you have acqui red the skills needed to administer and interpret valid and reliable developmental sc reeners. Tell me more about how you have been able to acquire these sk ills. Another example of a prompt and follow-up questions asked to gather informa tion for a topic is, Y ou indicated that you refer children with developmental delays in a timely fashion to the appropriate early intervention/early childhood programs within the community. Please explain the process you have implemented in order to do this in a timely fashion. What are the steps you take from well-child visit to referral? How di d you become knowledgeable of the programs within the community? Bogdan and Biklen (1992) stated that when interviewing is the major technique for data collection within a study, a tape reco rder is recommended. As previously stated, the participants were informed that data collection entailed an audiotaped interview

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39 format to enable the researcher to accurately analyze the data. During this interview, the researcher also wrote key words and phrases st ated by the participant as a back up to the tape-recorder. In an effort to validate impl ementation practices, the researcher requested to retain samples of permanent products (e.g., blank charts, screeni ng protocols, etc.). After the interview, each participant was offere d a gift certificate to dinner at a restaurant in the West Central Florida area. The researcher utilized a pilo t participant within this st udy in an effort to assist with familiarizing herself with effective questioning methods. During this interview, the researcher was observed by a research committee member familiar with semi-structured interview methods. Upon completing this interview, the researcher and committee member analyzed the interview process and information obtained. This consultation enabled the researcher to determine the f easibility of the questioning used during the interview and determine whether any parts of the interview process should be revised when conducting future interviews with the remaining participants. The committee member informed the researcher of several areas within the interview in which further information could have been obtained. Specifically, the researcher was instructed on methods of both listening and observing the in terviewee in an effort to ask additional questions that would yield a more thor ough explanation of his or her thoughts. Considering this was the first interview c onducted by the researcher and areas of this interview had not been more fully explore d, the pilot participants data were not combined with data obtained from other ge neral pediatricians w ithin this study. Also, these data were not included in any subsequent analyses.

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40 Data Analysis Prior to data analysis, the researcher tr anscribed the recorded interviews while using Microsoft Words voice recognition so ftware. Using methods proposed by Bogdan and Biklen (1992), the researcher wrote the participants number, date, and page number on each transcription so that e ach segment of text could be verified. Data transcription was completed by speaking words into a microphone that were automatically transcribed by the voice recognition software. Prior to using this program, voice training was necessary to ensure th e accurate transcription. Consequent ly, the researcher was able to listen to the statements recorded, restate th em into the microphone, and view the text on the computer screen for inaccuracies. After transcribing all interviews, the researcher randomly checked 1/3 of the 6 transcripts (i.e., 2 interview transcripts) to further ensure accuracy. Due to discrepancies found in both transcripts (i.e., incorrect words and/or phrases) the researcher further examined each interview transcript and made corrections as necessary. The researcher requested that each interv iewee prepare to revi ew their individual transcript and provide comments/corrections as necessary to ensure the accuracy of the researchers data collection. The interviewees provided f eedback to the researcher regarding their summary of responses via ema il. One interviewee, however, could not be reached despite the researchers attempts via email, phone, a nd standard mail. Therefore, no feedback was obtained regarding this participants transcript. All downloaded/written information and interview transcripts were c oded by number and stored in a locked file cabinet to protect each intervie wees confidentiality. Bogdan and Biklen (1992) stated that a th eme is a concept or theory that emerges

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41 from the researchers data. The researcher pr epared for data analysis by creating coding categories to organize the transcript data into units, while specifical ly attending to words, phrases, patterns of behavior, participants wa ys of thinking, and even ts that repeated and stood out (Bogdan & Biklen, 1992). Coding categor ies are developed to organize data formed from statements about specific settings, human patterns of behavior and ways of thinking, and/or situa tions. The coding categories help to identify information provided about pre-existing topics of concern (e.g., screening, referral, etc.), as well as new information gathered during the interview. Analysis strategies outlined by Krue ger and Casey (2000) were followed. Specifically, each transcript included the pa rticipants number, the date, and page numbers to ensure that each segment of text could be verified. Although the data was naturally organized into categories due to the in terview protocol used to obtain responses, the researcher kept one transcript in tact a nd the other transcript was used for organizing the data into thematic categories. Coding occurred through the us e of multiple colorcoded vertical lines drawn down the left margin of the paper which enabled the researcher to cut individual segments of text from its original transcript to create thematic categories. Using color codes also allowed for coding statements having one or more categories/themes. The researcher attached cu t segments of text from transcripts onto large, individual sheets of paper which represented themes. Afterwards, the researcher wrote descriptive statements of each category which descri bed what was reported by the participants. Additionally, the re searcher presented a list of themes, descriptions, codes, and examples derived from the data to her methods committee member for final review.

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42 For the purpose of this study, item-level an alysis was used to answer the five research questions posited by this research er, while pattern-leve l analysis described trends and linkages that were identified acr oss participants relative to each research question (LeCompte & Schensul, 1999). Once infe rences were developed, the researcher utilized an external auditor to verify whet her these inferences we re logical and grounded in findings (Brantlinger et al., 2005). This ex ternal auditor was a pediatrician who was not informed about this research study, yet was well versed in the literature and had a wealth of experience in wo rking effectively with young ch ildren with developmental delays and disabilities. Feedback provided by the auditor was utilized to make revisions as necessary. At the culmination of this studys analysis, the results were shared with the participants via email. Research Credibility Throughout this study, the researcher empl oyed several credibility measures to ensure that data collected we re reliable and valid. Brantlinge r et al. (2005) stated that these measures are commonly used to indicate that consumers can trust the research. See Table 3 for details on credibility measures chosen for this study.

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43 Table 3. Credibility Measures Credibility Measure Rationale for Inclusion in Study Data Triangulation use of varied data sources Multiple sources (participants) were interviewed to encourage robustness. Audit Trail tracking research process via logs providing information on the date, time, and length of interview, etc. This process was used to document and substantiate that sufficient time was spent to claim dependable and confirmable results. Thick-detailed description reporting sufficient quotes from the participants This process provided evidence for the researchers interpreta tions and conclusions. External Auditor using an outsider to the research to examine if, and confirm that, a researchers inferences are logical and grounded in findings This process strengthened the research by providing confirming or disconfirming feedback to the researchers conclusions, which also added validity to the study. Integrity Check using the participants within the study to determine whether the information gathered via the interview transcripts is accurate This process strengthened the research by determining the accuracy of the data collected and providing an opportunity for clarification.

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44 Chapter Four Results The results of this study have been pres ented in terms of themes, AAP guidelines, and barriers to AAP guidelines that emerged from the analysis of participant interview transcripts. Data were analyzed relative to the American Academy of Pediatrics (AAP) framework regarding recommendations for overcoming barriers to providing quality services for young children with developmental needs (Ameri can Academy of Pediatrics, 2001a). Pediatrician Demographics One hundred and fifty pediatricians who also were members of the American Academy of Pediatrics (AAP) were contacted via email in an effort to encourage their participation in completing the online surve y. A response rate of 19% was obtained as 28 pediatricians completed the online survey. Pedi atricians who were generalists (n=17) and pediatric subspecialists (i.e ., developmental pediatricians) (n=11) participated in completing the online survey. Figure 1 reveals the percenta ge of 28 pediatricians by age range that completed the online survey. According to the results, th e majority (i.e., 39%) of pediatricians who completed this survey were 43 through 53 years of age. Findings indicated by OConnor, and Sharp (2000) via the American Academy of Pediatrics Association for Health Services Research and Health Policy revealed the average age of pediatricians in 2000 as 43 years.

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0 0 7 25 39 29 0 10 20 30 40 50 60 70 80 90 100 21-31 32-42 43-53 54-64 65-75 76 and up Percentage of Pediatricians Age in Years Figure 1. Survey Pa rticipant Demographics Age Figure 2 displays percentages for both male and female pediatricians who completed the online survey. Th e results of this study indica ted a higher percentage of male (i.e., 54%) when compared to female (i.e., 46%) respondents. However, demographic data from 2006 showed a higher pe rcentage of female (i.e., 53%) versus male (i.e., 47%) pediatricians. 45

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54 46 0 10 20 30 40 50 60 70 80 90 100 MaleFemale Percentage of Pediatricians Gender Figure 2. Survey Participant Demographics Gender Of those who completed the online survey, 61% (n=17) were ge neral pediatricians and 39% (n= 11) were pediatric subspecia lists. See Figure 3 for specific details. Demographic data from the American Acad emy of Pediatrics (2001b) show a larger percent of time engaged in general pediatri cs was reported by male (63%) and female (73%) pediatricians, when compared to males (37%) and females (27%) engaged in a subspecialty. Additionally, this information can be comp ared to the data obtained on the online survey within this study. A further analysis of pediatrician and gender type showed a 46

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higher percentage of general pediatricians w ho were male (25%) and female (36%) when compared to subspecialists who were male (28%) and female (3%). Percenta g e of Pediatricians 61 39 0 10 20 30 40 50 60 70 80 90 100 General Pediatricians Pediatric Subspecialist Pediatrician Type Figure 3. Survey Participant Demographics Pediatrician Type According to Figure 4, the highest percentage of pediatricians pa rticipating within this study has worked within the field for at least 20 years (i.e., 43%). This percentage was followed by 15 through 20 years of practice, one through five year s of practice, ten through fifteen years of practice, and five through ten years of practice. Pediatricians who have been in the field for five years or less did not respond to the survey. 47

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14 11 14 18 43 0 10 20 30 40 50 60 70 80 90 100 1 to 55 to 10 10 to 15 15 to 20 20 or more Percenta g e of Pediatricians Years in Practice Figure 4. Survey Participant Demographics Years in Practice Figure 5 displays the percentage of pediat ricians who worked in specific practice settings. The data shown indica te that approximately 40% of pediatricians classified their work setting as other. Examples of this setting are pediatric emergency department, residency program, and academic hospital. Th e private practice setting was the next highest percentage (25%), followed by the hos pital (21%) and clinic settings (14%). 48

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21 25 14 39 0 10 20 30 40 50 60 70 80 90 100 HospitalPrivate PracticeClinic Other Percenta g e of Pediatricians Practice Setting Figure 5. Survey Participant Demographics Practice Setting 49 Figure 6 displays the percentage of pe diatricians by location. The majority of pediatricians responding to the online survey reported practicing within urban areas (68%), followed by suburban areas (32%). Rural settings were not indicated by respondents as an area of pract ice. According to the Ameri can Academy of Pediatrics (2001b) demographic data, pediat ricians typically worked in an urban location (i.e., 48% male; 51% female), followed by suburban (i.e., 37% male; 35% female), and rural (i.e., 15% male; 14% female) locations. A further analysis of demographic data obtained from

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the online survey showed that 43% of male pediatricians and 25% of female pediatricians worked within urban locations. This info rmation was compared to 11% of male pediatricians and 21% of female pediat ricians who reported working in suburban locations. 68 0 32 0 10 20 30 40 50 60 70 80 90 100 Urban RuralSuburban Percenta g e of Pediatricians Location Figure 6. Survey Participant Demographics Location According to Figure 7, 25% of pediatrici ans participating in the online survey worked between 30 and 40 hours, 40 and 50 hours, and 60 and 70 hours per week. A smaller percentage of the sample (14%) worked 40 to 50 hours per week while 11% worked the most hours per week (i.e., at least 70 hours). 50

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25 25 14 25 10 0 10 20 30 40 50 60 70 80 90 100 30-40 40-5050-60 60-70 70 or more Percenta g e of Pediatricians Weekly Hours Figure 7. Survey Participant Demographics Weekly Hours Figure 8 demonstrates the percentage of time pediatricians reported engaging in eight of the nine AAP guidelines. According to the survey data, pediatricians reported that they most frequently (i.e ., 80-100% of the time) refer children with delays in a timely manner, followed by increasing parent awareness of disabilities and resources, 51

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52 interpreting consultant findings to assist families, maintaining relationships with community resources, presenting screening results to families using a culturallysensitive/family-centered approach, determini ng the cause of delays or consulting with others, staying updated on child issues, and acquiring the skills needed to administer and interpret screeners. Furthermor e, most pediatricians (35%) reported that they spend the least amount of time (1-20%) staying updated on issues (e.g., developmental, screening techniques, community resources, etc.). A dditionally, presenting screening results to families using a culturally sensitive/family-centered approach, and acquiring the skills to administer and interpret screen ers were reported as not ap plicable by the majority of pediatricians responding to the online surv ey. See Figure 8 for specific percentages regarding each AAP guideline.

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53 8.7 43.5 43.5 4.3 21.7 30.4 4.3 34.8 21.7 8.7 17.4 13 21.7 30.4 17.4 0 4.3 0 4.3 13 4.3 8.7 13 21.7 4.3 8.7 4.3 8.7 0 0 13 8.7 8.7 4.3 17.4 8.7 8.7 4.3 21.7 17.4 30.4 65.2 26.1 34.8 17.4 8.7 39.1 47.8 0102030405060708090100 Stay updated on issues (developmental, screening techniques, comm. resources, etc.) Aquired skills to administer and interpret screeners Presented screening results to families using culturally sensitive/family-centered approach Referred children with delays in timely manner Determined cause of delays or consulted with others Maintained relationships with communicaty resources Increased parent awareness of disabilities and resources Interpret consultant findings to assist families 81-100% of the time 61-80%of the time 41-60% of the time 21-40% of the time 1-20% of the time N/A Figure 8. 28 Survey Participants Percentage of Time Engaged in Each AAP Percentage of Pediatricians

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Figure 9 illustrates responses provide d for the final AAP guideline inquiring about whether pediatricians have develope d a strategy for providing periodic screening within the context of offi ce-based primary care. Ten pe diatricians (36 %) responded yes 13 pediatricians (47 %) responded no and 5 pediatricians (17 %) did not provide an answer for this question. A A P G u id e l in e I h a v e d e v e lo p ed a s t r a t e gy fo r p ro v i d i n g p er i o d i c s c r e en i n g w i t h i n t h e c o n t ex t o f o f f i c e b a s ed p r i m a r y c a r e 0 2 4 6 8 10 12 14 16 18 20 22 24 26 28 Y e s N o N o r e sp o n se Re s p o n s e t o AAP G u i d e l i n eN u m b er o f I n t e rv i ew P a rt i ci p a n t s Figure 9. 28 Survey Participants AAP Guideline: Providing a Strategy for Periodic Screening 54

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55 Interview Participants Due to this studys focus on generalists, a to tal of six general pe diatricians (out of 11 who responded to the online survey) within th e West Central Florida area were selected to participate in a semi-structured interview. Six generalists were rank ordered by the number of AAP recommendations implemented. The percentage of time spent engaging in each recommendation was consid ered only in the event that general pediatricians reported implementing the same number of AAP r ecommendations. This occurred with two general pediatrician s who reported engaging in eight AAP recommendations. One of these potential participants was unable to attend an interview with the researcher. Consequen tly, the researcher contacted the general pediatrician who was next on the list of rank-or dered survey respondents. The researcher attempted to schedule each participants interview by the number of AAP guidelines reported, although this did not occur with the two participants. Specifically, a general pediatrician who reported following four AAP guidelines was interviewed prior to anothe r general pediatrician who reported following five AAP guidelines. This occurred due to scheduli ng conflicts with the final participant. Additionally, each general pediat rician participated in a f ace-to-face interview with the exception of the final participant who pref erred to conduct a phone interview due to difficulties meeting face-to-face. Interview time frames ranged from 45 minutes to one hour and thirty minutes. See the Audit Trail in Appendix H for additional information on interview dates and time frames. Purposive sampling and demographic vari ation were utilized to select a participant sample that had experience with implementing AAP best practices, practiced

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in a variety of settings, represented both genders and a variety of age ranges, and represented a range of years of experience within the field of general pediatrics. Table 4 provides descriptive information for the six ge neral pediatricians who participated within the interview portion of this study. These data indicate that the majority of interview participants were within the 32-42 age range (50%), were female (67%), had practiced for 10-15 years (50%), currently work within clinic settings (50%), and work between 40 and 50 hours per week (50%). An equal percentage of general pediatricians worked within both urban (50%) and suburban (50%) areas. Table 4. Participant Demographi cs 6 General Pediatricians Interview Participant Age Range Gender Years in Practice Practice Setting/ Location # of hours worked per week One 32-42 Male 10-15 years Academic (and Clinic Setting) /Suburban 40-50 Two 32-42 Female 10-15 years University Affiliated Clinic/Urban 40-50 Three 43-53 Female 20 years or more Private Practice/Urban 30-40 Four 65-75 Male 20 years or more Private Practice/Suburban 30-40 Five 32-42 Female 5-10 years Clinic/Suburban 40-50 Six 43-53 Female 10-15 years Hospital/Urban 50-60 56

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Table 5 denotes the number of general pedi atricians (out of six participants) who reported engaging in each AAP guideline. The ratios ranged from 3 out of 6 (i.e., 50%) to 6 out of 6 (i.e., 100%). See Table 5 for further details. Table 5. Ratios of 6 General Pediatricians Re porting the Facilitation of AAP Guidelines 9 AAP Guidelines Ratio of 6 General PediatriciansOnline Survey Ratio of 6 General PediatriciansInterview Maintain educated about developmental issues, risk factors, screening techniques, and community resources to assist with consultation, referral, and intervention. 6 out of 6 6 out of 6 Acquire the skills needed to administer and interpret valid and reliable developmental screeners. 3 out of 6 3 out of 6 Present screening results to families using a culturally sensitive and family-centered approach. 4 out of 6 6 out of 6 Refer children with developmental delays in a timely fashion to the appropriate early intervention/early childhood programs within the community. 6 out of 6 6 out of 6 Determine the cause of delays or consult with the appropriate consultant for determination. 5 out of 6 6 out of 6 Maintain relationships with community-based resources and coordinate care with them through the medical home. 4 out of 6 0 out of 6 Increase parents aw areness of developmental disabilities and resources for intervention. 6 out of 6 6 out of 6 Be available to families to interpret consultants findings. 5 out of 6 5 out of 6 Develop a strategy for providing periodic screening in the context of office-based primary care. 3 out of 6 3 out of 6 57

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58 AAP Guidelines Interview Findings Using the framework provided by the AAP, nine guidelines have been identified for the developmental screening and survei llance of infants and young children. Within this research, themes and patterns deve loped regarding gene ral pediatricians implementation of these AAP guidelines. Specific quotes are provided to facilitate further understanding of how general pediatricians ha ve implemented these guidelines within their respective work settings. The following sections are organized by themes to best represent the findings from this study. The specific themes include training and continuing education, learning about developmental screeners, using a cu lturally-sensitive/family-centered approach, parent awareness, referring children with dela ys and disabilities, determining the cause of delays and disabilities, connecting with co mmunity resources, barriers to implementing AAP guidelines, and overcoming the barriers to AAP guidelines. The researcher provided thick-detailed descriptions as a credibility measure to report sufficient quotes from each participant. Training and continuing education. The interview began with a discussion concerning the methods by which general pediatricians remain educ ated about various early childhood issues. This i nquiry probed areas such as child development and risk factors, screening techniques, and community resources. Genera l pediatricians within this study provided several practical methods that th ey have and continue to use in order to increase their knowledge base within the aforementioned area s. For example, residency training, although a previous expe rience, was often noted. Mo re current methods include the reading of print and elec tronic sources (i.e., print brochures, websites, journals,

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59 magazines, and email correspondence). Print an d electronic sources were most frequently mentioned by 100% of the participants interv iewed. Listening to lectures via audio digests and while attending meetings, in addi tion to consulting with colleagues also were reported as learning tools. Participants One through Six each provided responses pertaining to their knowledge of child development, risk factors, and screening techniques. Participant One stated the following: I have a special interest in children with special needs so I havein national meetingsC.M.E.s. I might attend some of the workshops and lectures related to special needs like ADHD, children with disabi lities, and stuff like that. As far as resources, the other resources would be through the AAP. Its more like, its the kind of information that I dont seek out it finds me. For example, I am a member of the Council on Children with Disabilities with the AAP, so Im on their listserv. So I might not go into de pth on everything they send, but sometimes they send a listserv which might talk about a certain guideline. And if its something of interest, I might look more in to it. Otherwise, I might just scan it. So, the listserv might be helpful as y ou can pick and choose what you would like to go more deep into. Participant Two stated the following: Usually through reading Pediatrics or the developmental people will send us little brief summaries of whats going on w ith either the AAP recommendations orthats mostly itUsually its just email or summaries of the latest AAP recommendations.

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60 Participant Three stated the following: I not only read medical magazines, but sometimes you learn even more from the lay press than in medical magazines because some medical people are in Mecca and they are totally disconnected from reality. Participant Four stated the following: By articles, reading periodicals and journals, American Academy of Pediatrics Pediatrics in Review and other pediatric journals. Participant Five stated the following: Usually, I use Pediatrics in Review which is a journal that I get once a month. Ill not read it in depth, but Ill thumb through to see what catches my interest Thats the biggest. I get some AAP emails from time to time that send me to links on the AAP site. Participant Six stated the following: I attend conferences, read arti cles, and attend Grand Rounds. Continuing education community resources. General pediatricians within this study provided methods by which they stay ed ucated about resources for children and families located within the community. Participants Three, Four, Five, and Six reported that they stay educated about community resources by either ne tworking or consulting with other professionals. Sta ff members (e.g., nurse, social worker, etc.) were also described as taking responsib ility for gathering information. Also, one general pediatrician reported that she has received brochures from community resources in her area.

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61 Participant Three stated the following: That one is a little bit harder. Usually, I learn about community programs through the mailI receive a lot of cards that we arewe have compiled a list of psychologists and mental health counselors that we like or that accept insurance. We had a nurse here whose child had se vere psychiatric problems and she took special interest in finding out resources that were available and that was her cup of teato do all this stuff. So we have that. Participant Four stated the following: We have several pediatrician s in our group. We talk with each other and we have meetings. Ill say, Ive run into this problemhave you run into that yet? and theyll say, Yeah, Ive found this source was good. Other pediatricians in the community and in our group are helpful with that. Participant Five stated the following: I dont know if I stay as up-to-date as I indicated on the survey. I get the brochures that they send from EIPHOT DOCs is one of them. Participant Six stated the following: We have resources in the hosp ital such as a social worker. Participants One and Two e xpressed difficulty when asked about their ability to stay up-to-date regarding community resources available to young children. Although Participant Three provided methods by whic h she engages in the guideline, she also described engaging in this recommen dation as her weakest point.

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62 Participant One stated the following: Local resources sometimes are very ha rd. I find it challenging to know what resources are out there. Participant Two stated the following: For the community resources, usually we find out more of those on our own. Participant Three stated the following: I would say thats my weak est point. Its very hard to keep up with the community resources but unfortunately there are not too many good community resources unless you have money. Thats the reality of life. Unless you have money, the resources are terrible. Learning about and using developmental screeners. During the interview, general pediatricians were asked the manner by which th ey have acquired skills to administer and interpret valid and reliable de velopmental screeners. They also were queried regarding their ability to develop a strategy for provi ding periodic screening in the context of office-based primary care. Participants One, Two, and Three each provided information supporting these two themes. Specifically, Participants One and Two noted their residency training as one sour ce, in addition to attending lectures. Participant Three reported that she often reviews periodicals (e.g., Pediatric News) and has researched free screening tools from the internet that she has incorporated into her practice. Furthermore, Participants One, Two, and Three discussed using valid developmental screeners within their respective settings. Participant One stated the following: we administer the Ages and Stages questionnaires. We administer some of the

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63 developmental questions based on the Denver screening. So, those were acquired during residency. We used to use the Denve r at that time and now the Ages and Stages became more popular its easier. Participant Two stated the following: The primary one we use, well, weve taken the Denver which weve been trained on and weve abstracted some of the majo r questions from it and thats what we have on our normal well child visit check s that we show residentsso weve learned how to use the Denverand the Ages and Stages questionnaire. Those are the two main ones we use for screening. The ASQ was actually, [doctor] taught us how to use itand lectures alsoShe was actually doing a research study bringing the ASQ into different clinics to see if we could improve the amount of screen ing being done by the residents. So, she taught the residents and us through lectur es, how to administer the ASQ and how to score it. Participant Three stated the following: Yes, let me show you what I use. This is Pediatric News a newspaper published by the American Academy of Pediatrics that keeps me updated with pediatric news. Sometimes I read articles that are very helpful and I save them. For example, this article from last year discussed how to screen specifically for Autism and depression and directed us to a web site (brightfuture.org) which these forms could be downloaded for free and used in the practice. I immediately implemented those forms and started using day to day. I downloaded the MCHAT (a screening tool for the detecti on of early autism), BECK (a screening

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64 tool for depression) and this PEDIATRIC INTAKE FORM that I found extremely helpful during my initial intake of a patient with behavioral or academic problems. Participants Four and Five did not men tion the methods by which they learned to use screening tools. Additionally, both participants stated that they eith er prefer not to use screening tools or have chosen not to incorporate these tools into the office visit due to time and staff constraints. Additionally, Partic ipant Six reported that she does not use developmental screeners as part of he r role within the hospital setting. Participant Four stated the following: I dont use a lot of screening techniques. I have not been one that uses those. I have not found them very helpful. Theyre time consuming and I dont have a lot of time to do them, and when Im through, Im not sure what Ive accomplished other than what I see when I examined the patient and talked to the mom. I used to use it when I first started. I really didnt find them that useful. I just went on clin ical evaluation because they really didnt add much. Participant Five stated the following: Weve tried to do it here and we elected not to. Its kind of a unique situation where its like I was with my partner and we work exclusively with medical studentsseeing patients and then making su re their work is correct and theyre generally much slower. So, it wasnt a f easible situation to turn over the rooms quick enough. I have one nurse to do everything. So, I cant even ask her to do that.

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65 Participant Six stated the following: Im an in-patient doctor. Pediatricians re fer to me. I see maybe, at most, twenty patients a day which is eighty to one hundr ed patients per week. I am a Pediatric Hospitalist. Children dont come to us for developmental issues. They typically come for something else. Determining the cause of delays and disabilities General pediatricians within this study indicated the methods they use in an e ffort to determine the causes of delays and disabilities. As previously mentioned, gene ral pediatricians engage in a series of activities, known as developm ental surveillance, which assi st them in understanding the nature of a childs developmental concerns. Some of the activities include, but are not limited to, engaging in periodic screeni ng by using questionnaires and completing observations over time. The data also indicate d that when general pediatricians are in need of assistance to determine a childs conc erns, consultation then takes place. Each of the six general pediatricians reported consulting with other profe ssionals. Specifically, they reported consulting with some indivi duals to determine the cause of delays, and others to obtain additional information regarding a childs functioning. General pediatricians mentioned consulting with deve lopmental pediatricians, specialists (e.g., neurologists), teachers, school nurses, social workers, and/or school psychologists. However, the most contact was noted am ong health professionals and teachers. Participant One stated the following: Sure, I think for the most part, as long as I dont think the delay is something coming because of prematurity or being a normal type ofwell, usually a delay is not normal but if the child is otherwise normal and has been gaining milestones,

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66 but for one reason or another theyre a little bit behind but actually making headway and I found a reason like maybe mom was not paying attention to him or he is with the babysitter a nd hes left oftentimes laying down do he doesnt really get enough motor stimulation or somethi ng to fix, then I might not consult initially with someone. I might try some of the suggestions that I talked about, like giving her handouts or examples of some things to do. Now, if she tried that and it didnt work, or the child has other, maybe neurological problems like the physical exam is abnormal, the kids not cognitively appropriate, it looks like he may be a little retarded or looks like the child has some syndrome, all of those we definitely have referred most of the time. I even would refer to development like [doctor] for more of the normal stuff. But when it becomes abnormal, we require more than just [doctor]. Like maybe neur ology or genetics or other specialists to be involved. So, sometimes mostly I gue ss were going back to how severe the delay is to determine going to a specialis t and whether there are any associated abnormalities that could be contributing to the delay. So the delay is there but is everything else normal or are there othe r neurological probl ems, genetics, or dysmorphic problems? When asked whether he typically consults with others or simply refers patients on to the resource, Participant One remarked: Most of the time we refer so we can allow them to manage at the same time. But, we are still their primary, so most of these consultants we refer to keep us informed by sending us copies of the visit. Some of them especi ally in the case of neurological problems, they need more th an a one time visit and most of the time

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67 it may not be fixed. They may be st arted on some seizure medication or something. For those, we usually want the neurologist to keep monitoring, or the psychiatrist, especially if medication. The researcher further asked if he has ev er consulted with individuals within the school system on the behalf of a child. Participant One replied: Yeah, the only thing I can th ink of is more for ADHD or more for, if were trying to advo cate for a child to get tested through the school system for a disability more than like developmental delays. Its more for behavior or stuff like that. If we think that maybe there are some modifications that th e school or teacher could do, or sometimes we get a note from th e teacher that says that this kid needs to be tested or whateverThe teacher would send a note with the parent So we call back to say, What do you mean, give us an example because sometimes some modifications for some ADHD kids, like putting them in front of the classroom to keep their attention, you know, things like that we may request that the teacher do. The other thing, for testing, if the child needs to be tested and the delay is long, sometimes I might get th e social workerour social worker is really good. He even goes to the school and a couple of times he even stays in the class to see whatlike if it was disr uptive behaviorhe would watch what happens to help the family and teachers. Participant Two stated the following: Some of them are relatively straightforw ard and others, if theyre premature, theyre at a much higher risk for de velopmental delay. If they have a chromosomal abnormality, like Downs S yndrome or another more obvious where

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68 you can look at them and go Oh yeah, theyve got X chromosomal problem, etc. then it makes it pretty easy to determine their cause. If they dont have an obvious cause, sometimes we do some bloodwork looking for a chromosome abnormality. We may send them to genetics to look for a chromosomal problem. ...If theres no cause and they look like a healthy, normal child but you can tell theres a developmental delay anyway, then we may send them to a developmental pediatrician like [doctor] to try and figure out better whats causing their delays. Sometimes we dont know a true sourcetheres no cause that we know. But theyre still delayed so they still need services either way. Participant Three stated the following: Oh, I know my limits. I know that if I have a child with an antisocial personality, I cant handle thator a child thats depre ssed. Or, if I try to treat someone with ADD and it doesnt workmanic depression, bi polar disorders, the ones that just blow a fuseI cannot do it. You have to go a psychiatrist. When asked if she has ever worked with school personnel in addition to teachers, Participant Three responded with the following: Well, they send me those forms and if they write downand sometimes its a big if I have timeif they write down pleas e feel free to contact, sometimes I do. Thats especially if the childs not doing well. But, we do not have the time or the resources. I dont have anybody I can pay to call and see how they are doing in schooland I cannot charge for services like that. So I am limited financially. Now if they call me, I always return their call.

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69 The researcher further asked if anyone fr om the school system has ever sought her for consultation, Partic ipant Three replied: School psychologists. There was a part icularly good school psychologist who used to call me to tell me that a medicat ion was not working or that the child was having other problems. She was very good. She left that school and I havent heard from the new one. In my fourteen years in practice, maybe two or three guidance counselors and school psychologists have reached out to me, but very fewIts one thing when the parents tell you and another thing when you know whats really going on. Participant Four stated the following: I send them to the neurologist because for many of the developmental problems, there is no etiology that we can put our finger on for many of them. After we do a routine workup, we dont find a reason. Its hard to put your finger on what the problem is. Theres one family that has a child that Im thinking of now that weve sent to numerous places all over the country and has a marked developmental delay. Nobodys been able to put a name on it and theres been an unknown etiology. Hes seen world-class ne urologists and geneticists and hes been treated at the USF program. So me of them you just cant find out. Participant Four also was asked if he ha s consulted with individuals within the school system or vice versa. He responded: With the school system, its more of them through the parents really. My contact with the school system is mostly with kids having ADHD, which I have decided that I dont do. Its a very complex probl em and I have just gotten out of doing

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70 ADD. But when I was doing that, they were contacting me through the parents indirectly, trying to get the kid on medicati on. It could be the t eacher or the school psychologist who thought the kid needed to be on medication. Frankly, feel that a lot of kids are labeled ADHD and put on medication when they shouldnt be on medication. Most of the kids are behavior problems in school so they want to calm them down so that they are not disrupting in sc hool. That seems to be their goal. Thats how it comes across. As long as a kid doesnt cause trouble in the classroomthats our main goal. And the parents just want the problem to go away. Give the child a pill and make the problem go away and they dont want to do all the other things that are required. You know, youve got to make sure that the child gets their homework done every nigh t. Youve got to make sure that the child is taking his medicationparents many of them just want the easy solution. Participant Five stated the following: Time and accessibility are issues. Other prof essionals are really hard to get a hold of. I dont blame her, thats just how it is. Shes really the one person that I know I can get a hold of. The researcher asked who Participant Five was making reference to and she replied: [Developmental pediatrician.] Shes r eally the only one that I know. There is another one who deals with autism, but I cant rememb er his name. His program is entirely pay upfrontno insurance. So, none of my patients can really afford it.

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71 Its like five hundred something do llars for the initi al assessment. Participant Six stated the following: This doesnt really happen in this se tting. A time crunch makes it difficult to do this because theres difficulty reaching the patients doctors. Further probing regarding consultation w ithin the school system generated the following response: Ive consulted with teachers and school nurses at times regarding children. Referring children with delays and disabilities. In an effort to transition families from the assessment stage to referral stage, e ach of the six general pediatricians reported that their referral options (e.g., specific community resources), first, are based on the age of the child and type of concern. Second, pare nts are provided with resources that they can follow up with themselves. However, in cases where the child is in need of immediate intervention and/or the parents are experiencing challenges with scheduling an appointment date, the general pediatricians within this study often interject in an effort to expedite the referral process. Examples in clude making follow-up calls to the referred agency, writing a prescription for testing, refe rring to another res ource (e.g., school age clinic) if services cannot be provided quickly by the referred agency, and utilizing the resources of a site-based social worker to assist with expediting the process. Participant One stated the following: Now, if at any point they need a referral for one reason or another, if they have developmental problems, usually the referra l will happen that day. They [parents] get the referral, and it also depends on th e age. If they are less than three years old, then they qualify to go to the Early Step s at least 1 visit th e initial visit. So,

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72 we write the referral and the parents bring it to the front desk. At the front desk based on, I think, if they are less than tw o years old they actually send them to Early Steps. If they are older, then it becomes based on, if were not doing it through the school, Speech or PT or some thing like that, then we would work through their insurance and see if, for ex ample, they have Medicaid, where would they go. They would give them a list or a phone number to call. Occasionally, we have pressing time where you want this kid seenits the first time weve seen them, they are really behind, and they can t afford to wait another three months for an appointment. Then we might end up making a phone call for them and weve tried to get our social workers to facilitate that. Now if they have more global delays, like if the physical exam is abnormal, they may actually qualify for CMS Child rens Medical Services because if they have cerebral palsy, for example, then we would actually use the social worker to get that done through the CMS system and get a caseworker who would actually help the family. Most of the tim e, those kids will need more than one referral. They would need to see neurology, and other people, so the CMS worker would help them through that. Participant Two stated the following: Usually weve got an order for developmenta l clinic or Child Find or Early Steps, or something like that. The only other way well sometimes do it is if theyre a little bit older, well write an order for the school to do testing. But, Im sure for the people who do that, theres tons of kids and it takes a long time and the squeaky parent gets the testing first. So, theres a lot of our kids who just kind of

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73 fall through the cracks because the parents ar e unable to do it for whatever reason. The school is too overwhelmed so its six months or later. Participant Three stated the following: As I said, I use all the screening tec hniques and I use my questionnaires and before you leave Ill give you one. When I use those questions and I feel its something I cannot handle, I give them my list. Say I have a doctor or psychologist here who takes most insurance and hes pretty good. I can send a lot of patients to him and he can screen them and I know about FDLRS for children with Speech impairments and I refer them there. I refer a lot of kids for physical therapy for fine motor concerns. Participant Four stated the following: Ok. Theres a problem and if the child is under three, most of the time we send him to the early developmental program. Thats a good resource for me. We start there. If theyre over three, then we have to do it more because at USF theyll see the child and then refer to areas of other needs. Frequently, theyll need to see the Endocrinologist, Neurologist, and Geneticist They have all of those there at USF so they can serve as the center and refer out and then I have to do that here over three and Child Find is a good place to start. Theyll do hearing, vision, and developmental assessment and then if they re specific proble ms like neurological problems, I have various neurologists th at I refer to. USF c linic does under three year old referrals. Theyre so good at doing it, unless that parent requests that I do it.

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74 Participant Five stated the following: Well, we assess them at every well-child check and we just have a few questions, four or five, within the developmental ar eathe social, fine motor, gross motor, language, and theres just a few screening questions that we do. Also, I ask if there are any parental concer ns as well. If there are a couple areas that look like there are some issues on the developmental screen as part of the well-child check, or if there are some parental concerns that I see, I usually refe r pretty immediately because I think its a little difficult for my patients to get in because theres so many patients and not so many doctors in this area. Thats it for the zero to three. If theyre older than three and not in kindergarten, then I use the FDLRS program. When theyre in school, its the school. Participant Six stated the following: depending on the level of disability or developmental delay, well refer them to say, Early Steps, so they can get the intake here in the hospital and be sent out for outpatient work. If any concerns are found, we refer im mediately to different resources as needed such as parent programs, neurology, Early Steps and FDLRS are good resourcesspeech therapists and genetics as well. Using a culturally-sensiti ve/family-centered approach. The interview participants were queried concerning the manner by which they interact with families and provide results using a culturally-sensitive and fa mily-centered approach. Once asked this question during the interview, three participan ts (i.e., those who answered this question negatively on the online survey) stated that they were unfamiliar w ith the definition of

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75 these concepts. After providing follow-up probes (See Appendix E), however, it was found that each of the six general pediatricians indicated strategies they use to facilitate this AAP guideline. Examples provided by gene ral pediatricians included the modeling of strategies, utilizing translators and other translation services drawing concepts, providing brochures in the parents native language, and holding informal discussions in an effort to learn about ones culture and/ or to present verbal information in a simplified manner. Participant One stated the following: Depending on if theyre Spanish, usually th e residents have one -half day a week in clinic. So, what we try to do is have at least everyday one resident who speaks Spanish so there is somebody there that speaks Spanish. Now if its something totallylike Japanese or whatever, some times weve used staff if theres anybody who speaks those languages. Weve also used AT&T translation on the phone. Thats usually it. We have some Creole and mostly Hispanic. Participant Two stated the following: We do have a lot of bilingual families and we have Spanish-speaking staff who translates for us. We have a Creole-sp eaking person but the other languages we have more trouble with. So if theyre bilingual and were not sure, that usually comes up more with the communication issues Theyre going to be bilingual later and therefore theyre delayed and theres so me controversy about that so we try to get them to a bilingual speech therapist or someone who can assess at least in their native language are they ok or not. For the less educated, we try to explain it in as basic language as we can.

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76 Participant Three stated the following: I try to be sensitive with anybody. Well, Im Spanish so if its a Spanish family, Im speaking Spanish. I try to learn the b ackground of my patients as much as I canwhere they are from, etc. We have a lot of Bosnians. They come here and they are Muslim. For example, if their belie f is that the girls are inferior, I will not go for that. I will try to present it in a sensitive way, but I do not know how to answer that question. ...I have a father with a very low IQ and hes really trying hard. I talk to him and I let him know that this person is taking a dvantage of him and that he should do this, but theres not much you can do. But ye s, I try to go to their level. I never explain things in medical terms. I explain things with comparisons. For example, when Im explaining an immune diseas e, which is a difficult concept to understand, I tell them that you have an army and the army is your immune system and we have different branches such as the army and navy. I explain how each system works and the job of each cel l. An example I use the most when Im trying to explain to a child that he has ADD, I ask them if they play sports. They usually say Yes, and then they say something like soccer. Then I ask what would happen if they showed up to a game and their coach didnt show up? No parentsjust the kids. Then he would sa y that they wouldnt know what to do. Then I say, Who do you think is your body s coach? and hell say My brain. Then I say that when he wakes up he is like a soccer team without a coach. Everybodys thereall the components are th ere but theres no one telling them what to do. So, I say that sometimes we ha ve to wake up the brain so that in the

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77 morning when we wake up and go to class, the brain is not as leep. Then you can pay attention. It was just by talking to people and saying, Why do you do that. For example, we have a lot of Indians from India a nd I ask them why they put the cord around the babys belly and why do they put the dot on their forehead and what does this mean and things like that. I just ask b ecause I want to know why they do that. Participant Four stated the following: Those areas are difficult to deal with. You do the best you can to try to explain to them in terms that theyre going to unde rstand. If its an English thing, I even have looked for somebody in the building that speaks Spanish and there is one of our nurses who is good at speaking Spanish. The toughest one I ever had was a Ja panese family who spoke almost no English. I couldnt get anybody to transl ate so I struggled and that family, fortunately, didnt have a de velopmental problem. It was just ear aches and sore throats. I dont know what I would have done if it was a developmental problem. For that family I would have had to go out into the community. Those folks did have a relationship with other Japanese people within the community and one time we were discussing a problem and the parents didnt understand and they gave me the name of a friend to call and talk to and I communicated through that 3rd party. It was just people that they kne w in the community that they were close with and thats kind of the way I appro ach itBut most of the time I can find someone to interpret for me.

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78 Participant Five stated the following: Well, in terms of the language barrier, thats a difficult one because none of my staff speak Spanish. But, there are receptionists that we can find to help translate, which I know is not the best situation. I also draw a lot of pictures to help them understand also when they apply. Thats about it. I had a family from Sierra Leon and they spoke French. We used Google Translation to communicate with the patient. You can put it in English and it will translate it to whatev er languageIt made it a very long visit [laughing]. Asthma. Ill draw the lungs and the airw ays and how they cons trict. Ill draw reflux. Participant Six stated the following : I draw a lot. Im a visual person so I use drawings to help them understand. For example, if someone has a urinary tract infection, I will draw the kidneys and explain how they function to help the parent understand. We also use Spanish handouts that we give the families who speak Spanish. Some of our residents may be able to help translate. Parent awareness. Each general pediatrician within this study indicated his or her course of action when attempting to educate and increase a parents awareness of their childs functioning. General pediatricians ofte n facilitated discussions with parents to assist with this goal. Rati ng scales were mentioned as indirect teaching tools which question parents about age-specific milestone s that, if typically developing, their child should be able to do. Additional methods of increasing parent aw areness include the

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79 implementation of a parent-child reading program (i.e., Reach Out and Read), the provision of handouts, books, and websites, and the demonstrati on of strategies to help a childs development within the home environment. Participant One stated the following: Well, most of the time if we, for example, lets say for the kid who needed more stimulation to talkone is giving them examples. If the kid is behind on speech and needed some more reading time or book time, we participate in the Reach Out and Read program. So, from six months on, we have books through a grant that we basically provide to the ki d at the end of the visit to encourage parents to read to their kid. Now, as far as if a child has developm ental problems and we need to refer and have to present thosemost of the time some of those kids parents may not really suspect it but they ha ve other kids and realize th at their child was able to walk earlier or was talking by now. Or, they might bring it up anyway so they might be suspecting something. We may say, Yes, youre absolutely right. It looks like he or she should be doing more. If its something mild that they can work with at home, we just give them examples of what they can do or handouts by saying, Heres some other ways you can stimulate them more. But if theyre really delayed and they need to be refe rred, we basically explain to them what Early Steps is and they get to see a doctor and physical therapist or speech. Sometimes, depending on the parents reactions like if they feel that it is one more thing they must do, sometimes I reassure them by telling them to go for the first visit because they may evaluate thei r child and decide that hes ok. Or, they

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80 might need a few times a week therapy, but you dont need to come to the center. We can teach you what to do at home. So, I reassure them and encourage them to go to the first evaluation so they dont ne glect their appointm ent. I say that it might be just a one time thing or you mi ght need to take your child a couple of times a week for therapy. Or, if your child s in a school, they mi ght do their initial assessment and they might recommend that the therapist in the school does the therapy two times per week. So its usually through handouts, examples, demonstrations, etc. When we find a disability in a child, we talk to them about the different options and therapies. In cases of ADHD, we gi ve them a lot of ha ndouts on behavioral management and information on books for parents to read about ADHD, like a list of books and ADHD websitesSo its real ly more through verbal education or tangible things like hand outs or websites. Participant Two stated the following: I think the ASQ has helped a lot of ou r families because they go through and say, Oh, my kid should be able to do this or that and they may not have realized it before when we asked them the developm ental questions, just as part of the screening. They say, Oh, I didnt know my kid should be able to do that or hes already doing that. The other, not as direct as screenin gwere involved with the Reach Out and Read program here so we give child ren six months to five years old developmentally appropriate books and we encourage parents to read with the child. As were doing that we say this will help the child read better. Early

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81 literacy increases their ch ance of doing well at school So, we bring up that component of it as well, a little bit less directly. Participant Three stated the following: Im big in preventingI give them this big speech on how to, from day one, start structuring the house. The babys life needs to be structured. The baby needs to learn how to sleep. The baby needs to soothe himself. I talk to parents about the different developmental stages and how children learn behavior. The first five years is imprinting, the second five is mostly imitation, and then comes socialization. I am big on the imprinting part because they need to learn that no means no and yes means yes. Dont make a promise you cannot keep and dont make a threat you cannot follow through with. Be consistent and dont fight every single battle. When you do decide to fight you need to win. I tell them they need to do that before the age of three because after this age, it becomes more difficult. I am very big on that so, with the early children I try prevention a lot. I tell them not to fight over eating habits a nd not to give the child too much power. Sometimes I give the speech and the pare nt decides that Im not the type of pediatrician they like. They go to one of my partners and they come back in about four or five years with a rotten child and they want me to fix it and its too late. But, I tell them this is what they can do. I follow many children from birth to young adulthood. My goal is to prevent them from getting in trouble and that the parent maintains an open channel of co mmunicationI do a lot of parent training but thats because I like it. Most parents here know more than we do because they know their child has

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82 problems and they have gone to the internet and learned ever ything there is to know about that. Then you have the parents that you have to tell them to go to the school because they are enti tled to this and that. Participant Four stated the following: Most of the time the moms are suspicious and if I see something Ill ask if theyre concerned about something and theyll say, Yeah, Im glad you brought that up. I watch to make sure that theres trul y a problem before I bring it up because I dont want to put something in moms mind that shouldnt be there. But, most of the time they know and as you start to bring it up, they jump at the chance to talk about it. Then Ill say how about we go over to USF and get evaluated. Theyll do some tests and some blood workup and de pending on what they find, they may do more. Or, they may say that they havent found any concerns. Participant Five stated the following: Were part of the Reach Out and Read program so I have a grant to give out books at every well-child visit. I really emphasize even more than normal, reading to them. If they indicate wants by poin ting, I tell the parent s to verbalize the words several times before they give the child what they want by pointing. In the rooms, there are brochures they ca n take for ADHD and stuff like that. Participant Six stated the following: I explain the best I can what the concerns are and we have several resources such as Early Steps and FDLRS and others that we refer to as concerns arise. As a part of increasing parent awareness, general pediatricians also were asked about their ability to interpret reports from other consultants (e.g., speech language

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83 therapists, psychologists, etc.). With th e exception of Partic ipant Five, general pediatricians typically expressed their compet ence when interpreting reports for families. Some reported that they simply review the results, while others provided the manner in which they hold these discussions. Phrases su ch as, I interpret the findings in a reassuring way, I think about how I woul d want it interpreted, and When I was a patient, I held on to everything the doctor sa id denote a need for a sensitive approach when providing results to parents. The following responses were noted as methods used by general pediatricians to assist parents w ith the awareness and co mprehension of their childs concerns. Participant One stated the following: We go over it with them, like especially when the testing happens in the school and we get back the report with all the scores like the verbal score, assessment score, and usually there is an impressi on and usually they want to know what it means. So, we go over it with them. Participant Two stated the following: Every so often the family will bring in a report from the psychologist or therapist and theyll say Here. So, well go thr ough it and say they seem to be finding this and what they really want is for y our child to get thera py or to see an ENT doctor or whatever it is to help the child. When asked if she has been able to a ccurately interpret reports from other professionals for the parents of her young patie nts, Participant Three indicated, Yes. Participant Four stated the following: I get that all the time. A litt le girl got an MRI and they told them it was abnormal.

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84 There were problems and mom called and asked me to interpret it for her. Frequently, when Ive referred them to so meone like a specialist and they found a problem, they come back to me for reassurance and interpreta tion. I interpret the findings in a reassuring way so they unders tand that theres a problem but we can fix it. They come back to me because Ive been there all along. They trust me more than the high powered guy who obvi ously knows a lot more about the disease and treatment, but I get feedback fr om the specialist and then feed it to the parents. They hear the same thing from me that they heard from the specialist, but because I know the family and Ive been with the family, its different. I try to present it to them positively no matter how difficult the results are and talk them through the steps. Participant Five stated the following: I will get whatever assessment thats been done across the street. So I get that and sometimes they will bring in school pe rformance report cards or letters from teachers and the concerns that they have. After further probing, Participant Five repor ted that she feels uncomfortable when she must interpret reports typically comi ng from the child development or school settings. Participant Five stated the following: In terms of some of the various developm ental testing that gets done, I dont feel extremely confident in being able to in terpret it and discuss it intelligently. Participant Six stated the following: I put myself in their place. Before I wa s a doctor, I think about how I would want

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85 it interpreted. I see parents and they are waiting for the doctor. When I was a patient, I held on to everything the doctor sa id. I help explain lab results to parents but I dont always get reports. But as a primary care physician, Ive helped patients read speech language reports a nd other reports. I just give them the bottom line. Connecting with community resources. General pediatricians within this study reported several ways by which they maintain relationships with community-based resources while continuing to care for their young patients. First, the mere act of consistently referring to a resource has st rengthened this relationship. Second, general pediatricians stated that they receive assistance from staff me mbers (e.g., social worker or pastoral care) to maintain th is connection. Third, it was repor ted that holding a leadership role within the community and having a re lationship with public school personnel also have assisted with implementing maintaining th is goal. Participant Six, due to her setting (i.e., hospital) and specific job requirements, did not report any activ ities regarding this guideline. Participant One stated the following: As for the screening techni ques, I dont think Ive had more opportunity to do them. Im not too far up to date on new things because, like I said, we dont practice using them. If I were in the co mmunity where there were no Early Steps, I would have to use it more and Id be more familiar. Those are the things you end up referring. Participant Two stated the following: Being on the Board of Directors for [org anization], I know the people there.

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86 Sometimes Ive called them as well and found kids that we need help with and see if we can get them in sooner or see what else we can do for them. Those are the primary mechanisms that I use. Participant Three stated the following: One of our patients is a school board person and she is fantastic and I call her too. I tell her I have a kid with this problem a nd ask what I can do. And she tells me to tell them to give her a call or write me or fax me and Ill look at the case. Participant Four stated the following: Ill use Child Find a lot and I use the Early Development Program over there Child Find is a good place to start. They ll do hearing, vision, and developmental assessment... Participant Five stated the following: theres no point person. The social worker was hired to work with adolescent physicians in the HIV program. Hes just a great resource of all the community resources so, when I really have a problem, I call him. Participant Six stated the following: we have access to a social worker and pastoral care to talk to families and comfort them. Barriers to Implementing AAP Guidelines. According to the online survey enti tled Young Children with Delays and Disabilities and the protocol used during th e interview process, general pediatricians were further asked their beliefs about barrie rs to the implementation of AAP guidelines within their respective se tting. An analysis of the data showed that barriers have hindered

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general pediatricians from receiving reimbur sement for preventive care, administering and scoring screening tools, referring families to community resources, receiving staff assistance during developmental surveillance, and budgeting for the cost of screening tools. However, these same barriers have b een overcome, according to statements made by other general pediatricians within this study. In particular, referring families to community resources was considered a barrier by one out of six general pediatricians. Additionally, scoring valid scre ening tools was perceived as a barrier by four out of six general pediatricians. The remaining four barriers (i.e., administering valid screening tools, assigning office staff to assist with developmental su rveillance, financing the cost of standardized instruments, and obtaining reimbursement for preventive services) were perceived as the greatest barri ers for five out of six general pediatricians, respectively (See Table 6). Table 6. Ratios of 6 General Pediat ricians Reporting Ex isting Barriers My office staff is currently able to Ratio of 6 General Pediatricians: Online Survey Data Ratio of 6 General Pediatricians: Interview Data administer valid screening tools 1 out of 6 3 out of 6 score valid screening tools 2 out of 6 3 out of 6 assign office staff to assist with developmental surveillance 1 out of 6 2 out of 6 finance the cost of standardized in struments 1 out of 6 3 out of 6 refer families to community resources 5 out of 6 6 out of 6 obtain reimbursement for preventive services 1 out of 6 1 out of 6 Overcoming Existing Barriers to AAP Guidelines General pediatricians within this st udy provided informa tion regarding the 87

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88 barriers they have overcome w ithin their respective settings as well as those they continue to face on a daily basis. Using each interview participants online survey results, the researcher questioned genera l pediatricians by probing them to provide information as to how they have overcome barriers and why barri ers continue to either exist or not exist within their settings. Barriers to administering and sc oring valid screening tools. The interview participants were first asked about barriers to admi nistering and scori ng valid screening tools. Participants Four, Five, and Six re ported on the online survey and during their interviews that these two barriers continue to exist. As previously noted, Participant Four stated that he chooses not to use developmen tal screeners, Participant Five reported that she is faced with time constraints and limited st aff, and Participant Six indicated that she does not use developmental screeners as part of her role within the hospital setting. Additionally, Participants One and Three reported administering and scoring valid screening tools as co ntinuing barriers for them, although they simultaneously provided information as to how they have attempted to overcome these barriers. Participant Two was the only general pediatrician who reported overcoming these two barriers in both the online survey and during the interview. When asked about ways they have been ab le to effectively administer and score valid screening tools, Participants One, Tw o, and Three commented on the feasibility of administration, scoring, and interpretation of sc reening tools, the effectiveness of using questionnaires that screen for multiple concerns, and their ability to develop creative strategies for increasing assessment time. Although Participant One did not indicate that his office staff had overcome the barrier of

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89 administering screening tools, he provided the following remarks during the interview: maybe weve figured out a way in the processwhen to do it in the visitfinding a good time so its not really an additional time. Putting it somewhere in the visit where there is d ead time or downtime to really fill it. I think what also helps is havi ng the residents, other than the fact that they already know how to do it, it is also a time wh ile the patients are waiting for the nurse, etc., so residents can do that stu ff. So, theres good time management. Participant One also reported during the interview that he lacks the skills needed to administer more sophisticated developmental screening tools. Participant One stated the following: I dont have the expertise to administer, other than the Vanderbilt and a few other ones, other sophisticated t ools because its time consuming because we need to be trained. Participant Two commented on the feasibility of administering and scoring screening tools: we have part of the Denver on all well child visits and we give the ASQ to families at certain visitsThe ASQ is pretty easy to do and the Denver we extrapolated, just the small portions, we get out answer s pretty quickly...Residents also assist with asking ques tions at well child visits. by handing it to the parents, they usually fill it out before they get to the room while they are waiting for the doctorat least these things are done and then scoring for ASQ is pretty quick. Participant Three did not indicate overcoming the barriers of administering and scoring

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90 screening tools on the online survey, although she provided de tailed information during the interview about how she e ffectively implements these tasks within her setting: I also use the Vanderbilt ADHD questionnair e to screen for ADHD. It does have very simple questions that not only sc reen for possible ADHD, but it also screens for anxiety and oppositional defiant syndromeIts a scale and very easy to score. the reality is that you have to see X amount of patients an hour or else you dont make a living. So, I had to find some creative ways of being able to give them a little bit more time while still seeing patients. Sometimes I do use the forms for them to fill out. I see a couple more patients for ear ache, sore throat, go back and read itok, now I need thisso the flow keeps going and Im still going back and forth to that room. Barriers to assigning staff to assist with developmental surveillance. Regarding the barriers faced when assigning office staff to assist with developmental surveillance, the main factor which has assisted the interv iew participants in achieving this goal is having medical residents to assist. Participants One, Three, Four, Five, and Six each indicated this as a continui ng barrier for them on the onlin e survey, while Participant Two reported that her staff has overcome th is barrier. Furthermore, Participant One (despite the fact that he stated this as a barrier on the onlin e survey), Participant Two, and Participant Six each reported how they ha ve attempted to achieve this goal. Participant One stated the following: I think what also helps is ha ving the residents, other than the fact that they already know how to do it, it is also a time wh ile the patients are waiting for the nurse,

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91 etc., residents can do that stuff. Participant Two stated the following: Residents also assist with asking questions at well child visits. Participant Six stated the following: Yes, we do a birth history and everything. But one of those is a full developmental history and then we do a physical exam. Our residents also help with this. Participant One also perceived assigning office staff to assist with developmental surveillance as a continuing c oncern, although he previously described how his staff has been able to overcome this barrier on the online survey. Participant One attributes continuing concerns with this barrier to multiple staff duties. Participant One stated the following: Its a barrier in our setting because, one, we have so many physicians and residents and parents alr eady wait so long between th e registration and theyre waiting to be checked in and the staff is busy doing too many things and to add one more thing for them to do is probably still a barrier for us. But for others I know, its do-able if you have a small prac tice with two nurses and three doctors or something. So you could probably train the nurse to ask those questions. Participants Three, Four, and Five repor ted reasons for this barrier continuing to exist within their work environment. The number of staff and time management were indicated as challenges to assi gning staff to assist with de velopmental surveillance. Participant Three stated the following: Not enough staff or time for additional things.

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92 Participant Five stated the following: in terms of support staff, I have one nurse to do everything. So I cant even ask her to do that. we work exclusively with medical st udents seeing patients and then making sure their work is correct and theyre generally much slower, so it wasnt a feasible situation to tu rn over the rooms quick enoughI only have two rooms. Additionally, Participant Four noted that he does not have a need for additional staff to assist with developmental surveillance. After clarifying that this is not a barrier for him because he is able to do these activities himself, Participant Four responded by saying: Correct. I do my own. Participant Six reported that assigning office staff to assist with developmental surveillance is not an activ ity that occurs within her specific setting. Barriers to budgeting for instrument costs. Regarding the task of budgeting for the cost of standardized instruments, Particip ants One, Three, Four, and Five reported this as a barrier on the online surv ey. Participant Two, however, did not indicate this as a barrier on the online survey and provided further information during the interview. Overall, general pediatricians within this st udy reported their ability to obtain inexpensive and free tools via the internet, create thei r own tools based on existing measures, and obtain tools through grant studies. The following quote from Participant One shows the challenges faced when having to pay for the cost of screening t ools. As a result, Participant One reported

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93 creating screening tools from standardized versions to assist with screening. Participant One stated the following: We couldnt use the Conners because we had to order them from the company and pay for them and who is going to pay for them? I mean, I might get reimbursed for the screening visit but th eyre more expensive. We collect for Medicaid in a 10-15 minute visit anyway. So thats why we ended up going with the Vanderbilt and we created our own sheets based on the Vanderbilt. Participants One and Two further stated that they have obtained valid screeners via a grant study that was conducted within their area: Participant One stated the following: So I guess we overcame it in some way and maybe some other ways like, I think the Ages and Stages questionnaires, I thi nk we order them, bu t I think initially [doctor] paid for the questionnaires from her grant for a study. Participant Two stated the following: [Doctor] has a grant that shes doing and she will bring us ASQsits not a very expensive test to do. Participant Three, however, provided inform ation on how she has obtained free materials for screening concerns via the internet: This article from last year discussed how to screen specifically for Autism and depression and directed us to a web s ite (brightfuture.org) which these forms could be downloaded for free and used in the practice. I immediately implemented those forms and started using day to day. I downloaded the MCHAT (a screening tool for the detecti on of early autism), BECK (a screening

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94 tool for depression) and this PEDIATRIC INTAKE FORM that I found extremely helpful during my initial intake of a patient with behavioral or academic problems. Participants Four, Five, and Six do not to use developmental screeners within their respective settings. Th erefore, budgeting is not an issue for them. Barriers to referring families to community resources. One general pediatrician, Participant Five, reported on the online survey that referring families to community resources continues to be a barrier. Howe ver, all six general pediatricians provided feedback on how they have attempted to overcome this barrier. Responses included having additional staff members to take on this responsibility. Specifi cally, Participants One, Two, Three, Five, and Six mentioned thei r access to a social worker, case manager, nurse, and/or pastoral care to assist with gathering information, referring families to community resources, and providing support services. Participant One stated the following: I think one way is through our social wo rker going to the school and advocating for testing a child or providing therapy. Th e other thing I think Early Steps is the community resource that we use a lotwe have a connection with the university and Early Steps and [doctor] is really part of our [uni versity] position so it makes it a little easier. Participant Two stated the following: We have a case manager who is able to ge t a lot of the resour ces taken care of for our familiesthrough our case manager well send them for developmental screeningSo we write an order for our case manager, who then based on their

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95 insurance, sends them to the appropriat e locationShe identifies the resources for us that their insurance pays for and if it looks more global, well send them to Early Steps. Participant Three stated the following: We had a nurse here whose child had se vere psychiatric problems and she took special interest in finding out resources that were available and that was her cup of teato do all this stuff. So we have that. Participant Five stated the following: theres no point person. The social work er was hired to work with adolescent physicians in the HIV program. Hes just a great resource of all the community resources so, when I really have a problem, I call him. Participant Six stated the following: we have access to a social worker and pastoral care to talk to families and comfort them. Participant Four reported that he is able to consult with his peers regarding community resources for children and families: We have several pediatrician s in our group. We talk with each other and we have meetings. Ill say, Ive run into this problemhave you run into that yet? and theyll say, Yeah, Ive found this source was good. Other pediatricians in the community and in our group are helpful with that. Barriers to obtaining reimbu rsement for preventive care. All general pediatricians, with the exception of Particip ant Five, reported on th e online survey that obtaining reimbursement for preventive care rema ins difficult. Participants One, Two,

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96 Three, Four, and Five honed in on the challenges with reimbursement that they continue to face. Participant Six noted that reimbursement for preventive care is not a concern within her setting. Participant One stated the following: Some places may not reimburse you for administering a psychological test because youre not a psychologist. They only allow you certain codes so you cant bill for something even if youre trained to do it. So, I think if you can do some of the tests yourself, it might be faster and more convenient to the family because you could do it right there. You dont have to wait twelve weeks to get seen by someone. But training, reimbursement and time can be a problem. if you dont have better resources in the community and if you know how to do it yourself, its going to add 20 minutes to your visit and youre not going to get reimbursed for it regardless. So, even if you schedule this child and say come tomorrow because I have this waiting room full of kids to see and I need another 20 minutes to do an assessment, youre not going to get paid for it. The insurance company wont pay for it because its preventi ve service or they decide they wont pay for it. So, thats another barrier. Participant One also provided a possible so lution that would assist with obtaining reimbursement for preventive care: an example Ill give is we just started doing varnishes because the AAP wanted us to do oral health as a primary care physician. In North Carolina and some other states, maybe there are 30 states in the country, Medicaid actually reimburses physicians for a CPT code thats a D code for Dentist to apply

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97 varnish. Before Medicaid wouldnt do it a nd theres been some lobbying from the dental society to allow pediatricians to submit those codes and get reimbursed and Medicaid wont do it just because you re not the specialist. Even though the fluoride varnish application is like painting teeth, in some communities and schools, school nurses could do it. You dont even need a physician to do it. So, I could see even on the flip side even if somebody in an office who knows how to administer some of those sophisticated test s and is willing to pa y for that, if they cant get reimbursed, they might not do it Participant Two stated the following: Insurance companies will sometimes limit the number if tests or theyll limit the number of providers that we can refer our kids to and if theyre too far away for our families and they cant get there, they may only pay for ten speech therapy visits and the kid needs a lot more than th at and we cant get paid for it. So, then were trying to either send them to so me other community resource to try to hopefully get it paid for or get it for free or get it done through the school where it doesnt cost anything, but getting th e testing can be quite a barrier Participant Three stated the following: Because they dont pay for the amount of time. Some kids need an hour but theyre not going to pay for it. I cannot ch arge for an hour worth of mental health. Mental health is something that the insurance company wont pay for period. Participant Four stated the following: More families cant afford insurance. They cant get Medicaid because they make too much money. So, those families are having a hard time just getting in for

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98 routine checkups and sometimes immunizations. Just basic things can be a problem. The vaccine for children problem is a real help if a family has no insurance. I can use Vaccine for Children to get vaccine s. They dont like to go to the health department because theres a stigma associated with going to the health department. But just to come in for a ch eckup is expensive, es pecially if you dont have insurance. While Participant Five reported that obtaini ng reimbursement for preventive care is not a barrier within her setting due to interval-s cheduled well-child checks, she did mention concern for immunization reimbursements: The first one technically is at the two week visit, but we usually see kids before then out of the hospital. Then two months four months, six months, nine months, one year, fifteen months, eighteen months and then two years and every year thereafter. There have just been some issues w ith immunization reimbursement that it doesnt even cover our cost some times. If the immunization co st is one hundred dollars and the insurance gives us one hundred dollars back, that doesnt cover any overhead such as the cost to admi nister, space for re frigeration, etc. Additional barrier: low socio-economic status (SES). At the culmination of each interview, the researcher asked general pediatricians to inform her of any barriers that had not been discussed. Participant Two stated that families from low SES backgrounds often face difficulties that create barriers to r eceiving effective care for their children. Participant Two mentioned changes in addres ses and telephone numbers and a lack of

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99 transportation as examples. The remaining participants did not provide information regarding additional barriers. Participant One stated the following: Referring really is a pain because a lot of our families are from low socioeconomic status and sometimes theyll make up addresses, phone numbers, or their cell phone will be good for an hour afte r their visit then its gone. So, youre trying to contact them again and send them to the speech therapist or heres your appointment for this and they never get the letter. They dont understand it, they ignore it, or transportation is broken down so they cant get to the appointment They have two other kids that had issues at the same time so that kid fell to the wayside. So, thats the most frustrating pa rt. Not only referring, but getting them to the actual place on a consistent basis. Its often very difficult for our families. I have one kid, its been six months now that we had referred him to the speech therapist and audiologist f our different times and the mother said shes never gotten letters, never gotten phone calls, we refer again and the same thing again. This kid is behind. Hes been behind si x months! I dont know what else I can do except try to get the case manager and her hooked up at the same time. Hopefully they have the same number for 45 minutes. Unfortunately, this issue is very real and thats probably the mo st frustrating thing. Additional barrier: genera l pediatricians beliefs. The researcher noted that negative perceptions held by general pediatricians within this study regarding developmental screeners and/or while dealing wi th childrens behavioral issues can serve as possible barriers towards the implemen tation of AAP guidelines. The barrier of

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100 perception arose due to Participants One and Four providing statements regarding the use of developmental screening t ools within their settings. Participant One stated the following: Its almost like me doing someone else s jobif its not re quired then you dont do it. Participant Four stated the following: I dont use a lot of screening techniques. I have not been one that uses those. I have not found them very helpfulTheyre time consuming and I dont have a lot of time to do them, and when Im through, Im not sure what Ive accomplished other than what I see when I examined th e patient and talked to the mom. I used to use it when I first started. I really di dnt find them that useful. I just went on clinical evaluation because th ey really didnt add much. The researcher further questioned Particip ant Four concerning his interactions with individuals within the school system. Participant Four provided information about hi s concerns while working with parents and school staff in the process of id entifying children with AD/HD: My contact with the school system is mostly with kids having ADHD, which I have decided that I dont do. Its a very complex problem and I have just gotten out of doing ADD. But when I was doing th at, they were contacting me through the parents indirectly, tryi ng to get the kid on medicati on. It could be the teacher or the school psychologist who thought the kid needed to be on medication. Frankly, I feel that a lot of kids ar e labeled ADHD and put on medication when they shouldnt be on medication.

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101 Most of the kids are behavior problems in school so they want to calm them down so that they are not disrupting in school. That seems to be their goal. Thats how it comes across. As long as a kid doesnt cau se trouble in the classroomthats our main goal. And the parents just want the problem to go away. Give the child a pill and make the problem go away and they don t want to do all the other things that are required. You know, youve got to make sure that the child gets their homework done every night. Youve got to make sure that the child is taking his medicationparentsmany of them just want the easy solution. The researcher probed Participant Four in an attempt to gather further insight about his beliefs as to why parents may wa nt the easy solution. An example proposed by the researcher during this probe was the lack of education. However, Participant Four clar ified his professional belief s with the following remarks: Its more like a lack of involvement. Really, theyre not involved with their children as before. They go to daycare and they go to work, and both parents work, and moms not home. I think that s a big problem. Im sure ADHD didnt just developits been there all al ong. But mom was home, you had family support and there was discipline. A lot of these attention defic it disorder children can be disruptive. But, if there was pret ty strong discipline an d structurethats the way weve made it in the past Im su re. Many probably didnt graduate from high school, they quit when they were 16, but they all seemed to make it. They all were citizens that were valuable to the community. But the family structure is no longer there. Theres no disc ipline to go to school and if they are disruptive,

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102 theres not much the teacher can do but call the pediatrician to try to put him on a pill to control him. I was very displeased with that. I decided that I wasnt going to be a refill Adderall doc tor. Luckily, when I did, we have a child psychiatrist that I refer my school behavior proble ms to. I dont abandon them, but I have found a place to go. Summary of Findings The findings within this ch apter demonstrate itemand pattern-level analyses of the responses provided during the survey a nd interview process. Demographic data obtained within this study reported trends by the specific age ra nge, gender, setting, location, and weekly hours of each interviewee. According to this data, the majority of interviewees were: middle aged, female, have practiced for 10-15 years, are employed predominantly within clinic settings, and work 40-50 hours per week. Furthermore, the interviewees reported work ing within both urban and suburban locations equally, although no general pediatricians reported work ing within a rural lo cation. Additionally, the one general pediatrician who worked in a hospital setting (i.e., Participant Six) reported her inability to engage in AAP guidelines and overcome barriers less when compared to her peers. Although Participant Six provided information on several topics during the interview, she was the only general pediatrician who reported that specific activities did not occur within her role in the hospital setting. An item-analysis of the interviewees responses to each AAP guideline showed that each of the six general pediatricians re ported strategies they implement to maintain their knowledge regarding child development issues, determine the cause of delays, refer children in a timely manner to intervention resources, present information to families

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103 using a culturally-sensitive and family-centere d approach, and increase parent awareness and comprehension of their childs current f unctioning and concerns. Half (i.e., three out of six) of the interviewees reported engaging in activities to increase their knowledge about administering and interpreting developm ental screeners while their peers reported either not using developmental screeners with in their setting (e.g., hospital), not having the interest, and/or not havi ng the time to use developmen tal screeners within their respective settings. Most general pediatricians (i.e., five out of six interviewees) reported their ability to interpret consultants findings for parents when needed. Additionally, five out of six general pediatrician s reported that they have maintained a connection with community resources via the referral process, assistance from staff members, and their relationship with other profe ssionals within the community. However, no interviewees provided information regarding their ability to maintain relationships with community resources while, simultaneously coordinating ca re with them through the medical home. Several themes identify the areas in wh ich general pediatricians have developed effective strategies for implementing AAP gui delines and overcoming common barriers. These themes are training and contin uing education, learni ng about and using developmental screeners, determining the cau se of delays and di sabilities, referring children with delays and disabilities, us ing a culturally-sensitive/family-centered approach, and parent awareness. See Table 7 for additional information regarding themes, descriptions, codes, and examples.

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104 Table 7. Themes, Descriptions, Codes, and Examples Themes Descriptions Codes Examples Training and Continuing Education Methods by which general pediatricians stay updated about child development issues, risk factors, etc. Meetings Print Media Internet/Email Consultation with colleagues Training Receive brochures from community resources PREP Pediatrics Review and Education Program Residency Reading lay press and medical magazines Attend national meetings/conferences, workshops, lectures/grand rounds Phone calls Journals Online articles Websites Email Correspondence/AAP listserv Audio Digest Brochures Learning About and Using Developmental Screeners Methods by which general pediatricians have gained skills to administer and use developmental screeners Residency Training Independent Learning Grant Study Reading articles Buying/downloading tools from websites Attending Lectures

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105Using a CulturallySensitive/FamilyCentered Approach Methods by which general pediatricians have communicated information with parents using a culturallysensitive/familycentered approach Modeling Print Media Translators Discussions Drawings Draw picture of UTI infection, asthma Demonstrate to parents how to interact with their child Discuss with child (and parent) ADHD Utilize the friend of a family (e.g., Japanese) to help with communication Utilizing Spanishspeaking residents/staff members Provide handouts in native language Google Translation Pastoral Care Explaining concepts in basic terms Learning about culture/background Parent training Determining the Cause of Delays and Disabilities Methods by which general pediatricians determine the cause of delays/disabilities Screening and Surveillance Consultation Make observations, conduct interviews, and administer screening tools Consult with professionals (e.g., developmental pediatricians, neurologists, teachers, social workers and school psychologists) Referring Children with Delays and Disabilities Methods by which general pediatricians engage in the referral process with community resources Transitioning Children Social worker follows up with the school for testing, classroom interventions, etc. Provide parents with phone numbers Fax/send referral Write prescription for testing

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106Assist parent with finding additional resources if current resources (e.g., psychologist) is unavailable Make a follow-up call to speed process of getting seen by developmental pediatrician, etc. Send to developmental pediatrician if the school is unable to test immediately (for schoolage children) Connecting with Community Resources Methods by which general pediatricians stay connected with community resources while managing (through the medical home) Staff assistance Leadership role in community Social worker visits school to advocate for testing Staff member stays updated on resources Serve in a leadership role for child-centered organizations Parent Awareness Methods by which general pediatricians increase parent knowledge Interventions/Therapies Print and Internet resources Questionnaires Programs Discussions Discuss interventions and therapies that can be done within the home Provide handouts, books, websites on behavioral management, ADHD, etc. Completing the ASQ has helped parent awareness Interpreting Reports Reach out and Read program Discuss parental rights within school system, etc. Discussions with parents about child development

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107 An analysis of barriers showed that all six general pediatricians reported that their staff is able to refer families to community re sources, whether they are able to provide the information themselves or a staff member assist s. Three out of six interviewees indicated that their staff is able to administer and scor e valid screening tools, as well as afford the cost of these tools. Finally, two general pediatricians reported their ability to assign office staff to assist with developmental surveillance and one general pediatrician indicated her ability to obtain reimbur sement for preventive services. Table 8. Overcoming Existing Barriers Objective Barriers Solutions Provided by General Pediatricians Administer and Score Valid Screening Tools Insufficient office time to administer standardized instruments Lack of nonphysician staff to assist Perception that screening tools are not necessary or someone elses job Residents assist with administering and scoring screening tools Use tools that are easy to administer and score (e.g., ASQ, Vanderbilt, etc.) Have parents fill out screeners while waiting for the doctor, nurse, etc. Make the use of screening tools mandatory Obtain Staff Assistance with Developmental Surveillance Lack of nonphysician staff to assist with developmental surveillance due to job demands and/or time constraints Residents assist with developmental surveillance Budget for the Cost of Standardized Instruments High cost of instruments Down load screening tools for free via the internet Use inexpensive screening tools Obtain screening tools for free via participation in grant studies Refer Families to Community Resources Lack of knowledge of community resources Staff members assist with supporting families and connecting them to resources

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108 Additional information about barriers was obtained by the general pediatricians within this study. While all interviewees reported difficu lties with reimbursement for preventive care, one general pediatrician (i.e., Participant One) provided a possible solution to this concern using dentistry as a model for change. One general pediatrician (i.e., Participant Two) indicated the diffi culties experienced while serving low SES children and families. Furthermore, one genera l pediatrician (i.e., Participant Four) stated his continued frustration with guiding parents and teachers through the assessment and intervention process for children suspect ed of having AD/HD. See Table 9. Table 9. Continuing Barriers Objective Barriers Possible Solutions Provided by General Pediatricians Obtaining reimbursement for preventive care Lack of reimbursement from insurance companies for preventive service Using billing codes for reimbursement of preventive care Allow general pediatricians to submit reimbursement codes for preventive care procedures similar to the D code used for fluoride varnishes typically applied by Dentists Serving Families from Low Socio-Economic Status (SES) backgrounds Transportation difficulties Address and phone number changes Families have difficulty affording insurance Not provided Working with Parents and Educators for the Assessment and Intervention of AD/HD Belief that parents and educators want children diagnosed with ADHD/ADD as the easy solution Not provided

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109 A final analysis of the interview respons es showed that general pediatricians could be categorized into one of two groups. Specifically, Participants One, Two, and Three provided detailed res ponses indicative of their ex tensive knowledge of the AAP guidelines and experience with the consistent implementation of these guidelines. Participants Four, Five, and Six expressed greater difficulty with implementing AAP guidelines as compared to their colleague s. These concerns may be attributed to a variety of factors, such as time, available personnel, and training in using developmental screeners. Regarding Participan t Six, her pattern of responding is primarily attributed to her particular work setting (i.e., hospital) Based upon these findings, this researcher believes that each participants responses we re authentic and representative of their personal experiences, perspectives, and practice environments.

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110 Chapter Five Discussion The researchers position regarding this study is that the interview participants have found methods of assisting children in need, despite the obstacles faced. However, these obstacles could be less prevalent if increased collabora tion among disciplines occurred, in addition to systemic changes. Also, these changes could lead to increased consistency and effectiveness in providing ea rly identification and intervention services for young children with delays and/or disabilities. The purpose of this study was to gain a more comprehensive understanding of the st ruggles and triumphs general pediatricians have encountered in their efforts to follow best practices while serving young children having delays and/or disabiliti es. An additional objective of this study was to determine the barriers overcome and those that continue to pose difficulties. A final goal of this research was to engage genera l pediatricians in a discussion about their relationships with professionals both within and outside the health field. Research Questions Five research questions were posited in an effort to determine the extent to which AAP guidelines are successfully implemented by a sample of general pediatricians. It was found that all general pediatricians within this study, regardless of setting, were able to report their engagement in some, if not all AAP guidelines. Specific strategies, procedures, and thought processes for overcomi ng barriers were relayed to the researcher by each general pediatrician for a variety of topics and concerns. The following section

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111 addresses each of the resear ch questions for this study, fo llowed by a discussion of the findings. Research Question One: What strategies and procedures are gene ral pediatricians implementing (e.g., using developmental screeners to identify childrens needs, referring children in a timely manner to intervention services within the community, etc.) to effectively screen, diagnose, refer, and/or case manage children with developmental dela ys and disabilities? Implementing AAP guidelines. The implementation of all nine AAP guidelines (i.e., strategies and procedures) was demons trated throughout this study. Therefore, this sample of general pediatricians was able to engage in successfully screening, diagnosing, referring, and case managing young children with developmental concerns. These strategies ranged from engaging in independent activities (e.g., keepi ng abreast of current issues and literature within the field of pe diatrics, seeking knowle dge about administering screening tools, etc.) to activities requiring the assistance of other professionals (e.g., referring children to resources with the assi stance of a social worker, consulting with professionals regarding a childs concerns, etc.). However, concerns were noted by the participants regarding the usefulness, time factors, and finances available to conduct of developmental screening tools, developmenta l surveillance, reimbursement, working with low SES families, the interpretation of consultants reports, and working with families and educators to diagnose and intervene with children having (or suspected of having) a diagnosis of Attention-Deficit/H yperactivity Disorder (AD/HD). Research Questions Two, Three, and Four: What specific barriers have general pediat ricians encountered, how have they overcome

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112 these barriers, and which barri ers continue to prevent gene ral pediatricians from the ability to effectivel y screen, diagnose, refer, and/ or case manage children with developmental delays and disabilities? Developmental screening and surveillance. Although general pediatricians within this study reported that resi dency training, independent le arning, and participating in grant studies are methods by which they have learned about and implemented the use of developmental screeners within their settings there are some concerns that exist. For example, once residency training is complete, opportunities for systematic and structured learning opportunities quickly decrease. Add itionally, opportunities to obtain and use developmental screeners via pa rticipation in gran t studies and/or through independent research efforts to increase ones learning are not widespr ead and appear to be happenstance events. Consequently, access to more sy stematic and structured training sessions on developmental screening tools and tec hniques may be required to increase the uniformity of learning for general pediatricians. Despite the research supporting the use of validated screening tools, some interview participants remained unable to use these tools within their settings due to barriers (e.g., time constraints), or they c hoose not to use them. Additionally, some general pediatricians reported creating officebased checklists or abbreviated versions of tools that may have compromised sensitivity, specificity, validity, and reliability when detecting developmental concerns. A modified version of the Denver, for example, is a tool that was mentioned throughout this study. First, Tervo (2003) stated that cautious use is recommended for the Denver II because it may not detect concerns specific to cerebral palsy in a child's first 12 months of life. Furthermore, Tervo explained that office

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113 checklists arent recommended, because they do not frequently identify developmental or behavioral concerns. Therefore, it is impor tant that general pediatricians have an understanding of a tools ability to effectively detect con cerns before implementing its use and refrain from modifying the format of the tool. These factors (e.g., reliability, sensitivity, etc.) also would apply to screening tools that are obtained for free via the internet. The Modified Checklist for Autism in Toddlers (M-CHAT) and Beck Depression Inventory were mentioned as tool s obtained through the internet. However, there are likely several other tools that ma y be downloaded from the internet whose reliability, validity, specificity, and sensitiv ity are unknown. Prior to using these tools in practice, general pediatricians should be aware of which tools are appropriate for use. Modifying a tool not only compromises its psychometric properties (e.g., sensitivity, validity, etc.), but also makes it difficult to engage in accurate and repeated measures of a childs development. Using appr opriate screening tools in their entirety can assist all current and subsequent professi onals (e.g., medical, educational, etc.) in accurately assessing a childs developmental gr owth. Additionally, the use of appropriate tools across professionals would decrease th e chances of parents and/or caregivers receiving unexpected information regarding their childs developmental patterns. This discussion, however, can lead to another important question: How can screening tools be used when some general pediatricians are una ble to afford them within their settings? General pediatricians within this study repor ted that using low-cost screening tools (e.g., ASQ), obtaining free tools via th e internet, and/or particip ating in gran t studies are methods by which they have obtained screening tools.

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114 General pediatricians within this study also reported difficulties with assigning office staff to conduct developmental surveillance. However, some participants reported completing this activity within their settings th rough the use of medical residents. Although medical residents are not typically available to ge neral pediatricians in nonacademic settings, it is essential that medical residents are provide d with opportunities for participating in developmental surveillan ce that includes admini stering and scoring screening tools. This experien ce will ultimately increase their confidence in using these tools throughout their career s. Additionally, it is equally important that general pediatricians who do not have access to medical residents are provided with alternative methods of obtaining assistance with devel opmental surveillance. For those general pediatricians within this study who had access to medical residents, the task of using screening tools during developmental survei llance was manageable. However, general pediatricians often reported that assigning other office staff to assist with this goal tends to be more difficult. It is possible that some of the general pediatricians who elected not to use developmental screeners may have felt th at the task is unmana geable due to their inability to obtain assistance from others (e.g., medical residents, office staff, etc.). This concern could be further remediated via, for example, professi onals-in-training (e.g., pediatric school psychologist interns) who are familiar with administering and interpreting developmental screening tools a nd may be required to obtain experience in multiple settings through their graduate programs. Other individuals (e.g., volunteers) also may be trained to use these screening t ools, which would assist general pediatricians with conducting developmental surveillance. Connecting with community resources. General pediatricians within this study

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115 often reported their ability to refer children and families to community resources via the assistance of a staff member, through major co mmunity resources such as Child Find, or through their own efforts. However, the participants ability to follow-up with these community resources to maintain their awareness of intervention effects and child development tends to be a much more difficult task. To require general pediatricians to initiate communication with and keep track of each community resource that their patients are involved with appear s to be a complicated task. Fo r example, time constraints and reimbursement concerns would not enab le general pediatrici ans to successfully engage in this task. However, professionals working within these community resources could help to keep general pediatricians informed by developing a system of communication in which they periodically send the childs parent and/or general pediatrician (with parent pe rmission) reports or brief su mmaries of the childs most recent assessments, therapies, concerns and/or improvements. Reimbursement. Insufficient reimbursement for preventive care is a prevalent concern across general pediatricians with in this study. The American Academy of Pediatrics (2005) published a Developmental Screening/Testing Coding Fact Sheet for primary care pediatricians, which lists the sp ecific codes for developmental screening, surveillance, and assessment. It also provides a list of the assessment tools, appropriate documentation for testing tools, and sample tool s for use. Increased awareness of this and similar fact sheets would assist general pediatricians in obtaining reimbursement. However, in the event that insurance companies are continuing to withhold reimbursement for preventive services (e.g., developmental screening), increased lobbying is needed through the appointment of well-informed individuals who can

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116 effectively represent the current issues, so lutions, and projected outcomes on the behalf of general pediatricians and other professiona ls invested in these concerns. The fluoride varnish example provided by a general pediatrici an within this study provides a model for how obtaining reimbursement can be done effectively. Research completed by Lewis, Lynch, and Richardson (2005) reported medical professionals initial reactions to administering fluoride varnishes to low-income patients. One interviewee stated, Why arent the dentists doing it ? Why are you asking physicians to do yet one more thing? These questi ons may reflect the thoughts of general pediatricians regarding the use of developm ental screeners. As the current study has shown, general pediatricians are already us ing developmental screeners and have found ways to manage their time effectively. However, for those who are not using these screeners due to, for example, unfamiliarity or insufficient time to administer them, observing a colleague in action may lessen these concerns. Lewis, Lynch, and Richardson (2005) furthe r noted interviewees comments after observing a fluoride application. One participant stated, We sa w that it wasnt hard to do, didnt take very long to do, gave us mechan ics, showed us what to use, and showed us the billing codes, so how we can bill for it These statements demonstrate the benefits of modeling when presenting a new c oncept to individuals who often have time constraints on a daily basis and are unaware of how doing one more thing is possible. Low SES families. Families from low SES backgrounds are often faced with obstacles which make navigating through daily life a difficult task. Likewise, general pediatricians indirectly encount er these obstacles when attemp ting to effectively care for families living in poverty. Transportation diffi culties, address and phone changes, and a

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117 familys ability to afford insurance (regardle ss of SES status) were provided as barriers within this study. Offering solutions that addr ess these issues may be the most difficult, considering a familys financial status is beyond a general pedi atricians immediate control. However, there may be so me alternatives worth pondering. General pediatricians may elect to imple ment innovative interventions such as mobile care vans and community screeni ngs to access low SES families who have difficulty obtaining consistent medical care for their children. Fo r example, Campos (2008) reported that the Ronald McDonald Ca re Mobile Program uses pediatric faculty, medical students, pediatric re sidents, nurse prac titioner students and nursing students to visit schools and shelters on a re gular basis. These individuals provide medical and dental services to underserved children within a community located in West Central Florida. Also, general pediatricians within this st udy often made reference to Child Find as a referral source during this st udy. Similar to the screeni ngs conducted by Child Find, general pediatricians could partner with local agencies, colleagues, and/or other professionals to provide services such as developmental, vision, and hearing screenings to families in need. Another option, although less popular at this time, would be for general pediatricians to make housecalls to unders erved families. A study conducted by Ingram et al. (1999) showed that physic ians typically made housecalls for elderly patients, cancer patients, trauma patients, and patients havi ng transportation difficulties. The researchers further stated that issues such as the l ack of insurance reimbursement and time spent making housecalls were concerns for thes e practitioners. However, Thompson (2002) reported that his practice is growing due to the technological advant ages found in todays

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118 society. Difficulty reaching families from low SES backgrounds was noted as a concern by a general pediatrician within this study. Specifically, families with children having developmental concerns demonstrated difficu lty with obtaining consistent care due to financial concerns, transpor tation concerns, and/or othe r stressors. Although several factors need to be fully examined and a ddressed to assist phy sicians with making housecalls, this concept may serve as an alternative for reaching families experiencing difficulties associated with their SES backgr ound, such as transportation. Furthermore, housecalls could benefit the childr en of parents who have diffi culties due to their elderly status (e.g., grandparent), a phys ical disability, and/or illn ess. Making housecalls may be an area of interest for those general pedi atricians who are interested in using an alternative method to assist in providing continuous care to some of our most vulnerable children. Additionally, improving the affordability of medical insurance for all children continues to be a nationwide focus that, once achieved, would assist families with receiving proper and consistent me dical care for their children. Interpreting reports. Although most general pediatrician s within this study did not indicate the process of interpreting consultants findings as a concern, it was stated by one general pediatrician as an area of insecurity. It is possible that other general pediatricians are experiencing similar feelings, especially when asked to interpret reports from professionals such as developmental pe diatricians or psychologists. This may be due to the fact that assessments used often contain various methods of reporting outcomes (e.g., percentiles, age/gr ade equivalents, stanines, a nd standard scores) (Canter, 1998) and technical jargon unfam iliar to general pediatrici ans. To assist general

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119 pediatricians with obtaining further knowledge on the interpretation of scores and overall reports, it may be beneficial to create brief trainings a nd/or articles dedicated to explaining how to accurately interpret reports from other disciplines. This, too, would help to ensure that general pediatricians fu lly understand the status of their patients medical, developmental, behavioral, and/or me ntal health while facilitating the medical home. Research Question Five: In what ways are general pediatricians collaborating with othe r professionals (e.g., developmental pediatricians, teachers, school psychologists, etc.) in an effort to effectively screen, diagnose, refer, and/or case manage children with developmental delays and disabilities? Working with educators and families. One general pediatrician provided information on how he has collaborated with te achers and parents in an effort to assist children suspected of having AD/HD. This individual also expressed frustration while addressing these concerns. Specifically, the be lief that parents and educators want an easy solution to behavior problems, such as administering a pill , was mentioned. As seen in the example provided within this study, this belief ha s caused one general pediatrician to refer these concerns to a ps ychiatrist instead of addressing them. This belief and frustration, if held by other general pediatricians, also may influence their decision to refer potenti al AD/HD cases. These concerns are valid and may require additional education for parents and educators alike. Foremost, the Diagnostic a nd Statistical Manual of Mental Disorders (DSM-IV-TR) (American Psychiatric Association, 2000) describes AD/HD as a

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120 childhood disorder which causes developmentall y inappropriate levels of inattention and/or hyperactive-impulsive behavior. These behaviors appear before the age of seven and continue for more than six months. To m eet the criteria for diagnosis, there also must be evidence of clinically significant impairment in a childs social or preacademic/academic functioning in more than one setting. Diagnosis prior to the age of six should be carefully debated, considering childre ns tendency to be active during the early childhood years. Differential diagnoses also should be made to rule out other possible concerns. Finally, parents and educators n eed an understanding of the benefits of intervention planning and implementation. In particular, medication usage is enhanced when other interventions (e.g., social skills training, envir onmental re-structuring, etc.), classroom behavior management strategies, a nd discipline are provide d within the school and home environments. Collaboration with other professionals. General pediatrici ans reported their ability to collaborate with other profe ssionals throughout this study. Examples of collaboration provided by the general pedi atricians involved cal ling a colleague for guidance and/or working with a site-based social worker to obtain additional information about a child. In this case, ge neral pediatricians reported th eir ability to share knowledge with other professionals and work together towards a common goal. Other examples of collaboration that were mentioned by genera l pediatricians were obtaining information from teachers, school nurses, and few sc hool-affiliated social workers, guidance counselors and school psychologist s regarding a childs status. In these instances, general pediatricians often equated collaboration with giving and/or receiving information. Oftentimes, the professional would contact the general pediatrician in an effort to initiate

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121 communication, considering gene ral pediatricians are often unable to dedicate large amounts of time to contacting (via phone) other professionals. Furthermore, general pediatricians would not get reimbursed for th ese efforts even if time permitted. Although collaboration was often explained as effective, it also was described as rare, especially when working with certain professionals within the school setting. Finally, general pediatricians within this study often reported their ability to interact with other profes sionals and community resources for the concerns of young children. However, contradictory results were noted when comparing survey and interview responses for the AAP guideline addressing their ability to maintain relationships with comm unity-based resources and coordinate care with them through the medical home. Specifically, four out of six part icipants indicated on the survey that they were able to implement this guideline. However, after conducti ng interviews with each of the six general pediatricians, it was found th at none of the participants provided supportive information for this guideline. General pediatricians reported maintaining relationships with community resources, yet none of the participants reported doing this while simultaneously coordinating care for their patients through the medical home. Instead, general pediatrician s typically described collabo ration as providing and/or receiving information from community resources and ot her specialists. Sandler et al. (2001) noted that general pe diatricians are to pr ovide leadership for the medical home and as a member of the ear ly intervention team. This leadership role requires consistent communication, problem-s olving, and goal setting among the childs family, therapists, and service providers. An examination of all data provided during each interview shows that general pediatricians are implementing the five components of a

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122 medical home reported by Strickland et al. (200 4) to the best of their ability. However, experiencing no difficulty in obtaining needed referrals is one of the five components (proposed by Strickland et al.) of the medical home that remains a barrier. Additionally, general pediatricians provided numerous test imonies of how they have insufficient time and office personnel to assist with tasks. This, too, would continue to make the implementation of the medical home difficu lt. Furthermore, reimbursement for care coordination is not available to assist with implementing the medical home. Given this description, it appears th at collaboration of this magnit ude may have been more difficult for the general pediatricians participating in this study to achieve. Additional dialogue and/or training in how to coordinate care with community-base resources through the medical home may be beneficial. However, the American Academy of Pe diatrics (2006) provided information on parents expectations of th eir childs medical home. Speci fically, parents expect the medical home to address their childs continuous and comprehensive care, to be interested in their childs development thr oughout childhood and adol escence, to identify their childs developmental strengths and weaknesses, and to be knowledgeable of available community resources to facilitate referrals. It was found that the general pediatricians within this study (with the excepti on of the hospital-based participant due to role differences) are meeting parents expectations for providing their childs medical home. Limitations Limitations were apparent within this study and should be addressed for future research. One limitation of this study is reduced external validity. Because the

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123 participants were drawn from the AAP, result s from this analysis may only be viewed in light of general pediatrician s who are also members of this organization. Additionally, a small number of general pediatricians were interviewed for this qualitative study. While this sample size enabled the researcher to examine each case as it pertains to the hypotheses and research questions, it did not enable broad generalizations to be made for all general pediatricians (re gardless of AAP membership). Tellis (1997) noted this by stating that in analytic generalization, the fo cus is to compare the case studys results to the previously developed th eory, not a population. Considering the general pediatricians were recruited for participation within this study due to their ability to follow best practi ces, it is possible that they responded in an overly positive manner during the interview. Yin (1994) stated that responding to questions in a manner that is socially desirable creates response bias. Although, the researcher attempted to address social desirability in res ponding by assuring the interviewees that th eir responses would remain anony mous. Despite the limitation of social desirability in respondi ng, the researcher obtained rich data both positive and negative in nature. There are a few possibili ties for why this occu rred. First, general pediatricians may have viewed the interview as an opportunity to express their thoughts and frustrations in a confidential setting. Also, completing the online survey and reviewing the studys purpose within subsequent emails may have enabled general pediatricians to obtain a great er understanding of the study an d prepare for the interview. Additionally, the researcher communicated to general pediatricians via emails and informed consent that they had been selected to participate in an interview due to their reputation for following best practices fo r serving young children. This, too, may have

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124 increased the comfort level of these general pediatricians when responding to interview questions. Another limitation is that the participants may not have remembered certain information as they were questioned. Additionally, a semi-structured interview was employed within this study, which may ha ve caused the researcher to lose an understanding of how each interviewee woul d have structured the topic themselves (Bogdan & Biklen, 1992). A final limitation re garded the use of a phone interview to record the responses of one participant. Although this was a method preferred by the participant due to difficulties scheduling a face-to-face meeting, interviewing in person could have allowed the researcher to obs erve additional cues (e.g., body language) to facilitate a deeper discussion regarding her experiences. Also, technical difficulties occurred during this interview (i.e., phone recep tion) which caused the researcher to rely on written notes more than the audio recording. Moving Forward Assisting General Pediatricians Despite these limitations, the researcher sought to explor e the specific topics and domains presented within the developed interv iew protocol, in an effort to support the research questions and goals. Utilizing an interview format enabled the researcher to maintain a targeted focus on each case, and pr ovided insight into cases that helped to produce some causal inferences (Tellis, 1997). Specifically, this study provided insight on how the participants have been able to adhere to AAPs recommended practices and what particular issues have in terfered with this adherence. Much of the literature has focused on barriers which prevent general pedi atricians from engagi ng in best practices when assisting children with developmental co ncerns. However, the results obtained from

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125 this study could potentially serve as a guide fo r other general pediatricians with similar demographics and/or practice concerns. Additionally, barriers that continue to exist for these general pediatricians were noted in an effort to decipher between concerns that can be remediated within the gene ral pediatricians practice a nd concerns which may require additional supports (e.g., changes in policy, co llaborating with other professionals, etc.). General pediatricians are implementing seve ral strategies to assist children and families, despite several limiting factors. Th eir efforts are to be commended, considering the time limit and number of children that must be seen on a daily ba sis to ensure their livelihoods and the smooth functioning of their particular work setting. However, a fundamental point must be made general pediatricians cannot su ccessfully serve young children and their families without the assistance of policy makers, in addition to parents, educators, other healthcare providers, a nd specialists throughout the community and within school environments. E ach individual (i.e., the parent educator, other healthcare providers, and specialists throughout the comm unity) can play an important role in helping to create cohesiveness in the care provided to young children. Research on the medical home paradigm highlights the im portance of coordinating services among providers to prevent the fragmentation of care whether medical or psychosocial. Specifically, professionals within early ch ildhood daycares/facilities and elementary schools (serving prekindergarten and kindergar ten populations) also can participate in promoting this cohesiveness by facilitating s ite-based health progr ams or full service schools which provide prevention and early in tervention for childrens health concerns, as well as for problems that arise as a resu lt of experiencing hea lth concerns (e.g., preacademic, academic, emotional, and behavioral concerns). The school-based professional

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126 serves as part of a multidisciplinary team whose focus includes providing child advocacy, direct service (e.g., intervention developmen t and implementation), health promotion consultation, coordination of services, a nd the development of programs. The schoolbased professional also can work with other professionals both with in and outside (e.g., general pediatricians) the building to accomplish these various goals (Power, DuPaul, Shapiro, & Parrish, 1998). One professional, th e school psychologist, ca n play a vital part in assisting this team with effectively serv ing children, especially those children who are victims of poverty and underinsurance. The School Psychologist as a Facilitator of Collaboration School psychologists are skilled in the areas of prev ention, assessment, intervention, and consultation. Additionally, school psychologists work within a variety of settings such as schools and medical facili ties such as hospitals and pediatric clinics (Power & Bradley-Klug, 2006). School psycholog ists also serve as liaisons between teachers, administration, parents, commun ity resources, medical professionals, and specialists within the sch ool and other settings. Similar to the general pediatricians role as facilitator within the medical home concept, the role of the school psychologist work ing with pediatric issues is to assist with the home-school-community connection. Particul arly, school psychologi sts can facilitate the coordination and connection of families w ith school-based services, medical health services, and mental health services to positively impact a childs development and learning (Sheridan & Ellis, 2006). Power a nd Bradley-Klug (2006) recommend using an approach to address childrens health -related needs that includes servicing all children. This approach consists of implementing prevention efforts for children based on their

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127 need for health-related supports. Additionally, this approach encourages the provision of early, moderate, and crisis intervention effort s based on a childs severity of concerns. Sheridan and Ellis (2006) further stated th at the school psychologist should assist by helping to educate health care professi onals regarding school concerns, school professionals regarding health care concer ns, and families regarding ways they can effectively collaborate with both entities. Pediatric school psychologists are adequately skilled in health issues and coul d help facilitate this process. Other professionals, such as nurses and social workers would al so be of valuable assistance. Warger (2001) stated that the purpose of full-service schools is to address all concerns affecting the lives of at-risk children. This is typically done by providing services to children with di sabilities who typically come from impoverished families and/or who have physical, mental, or le arning concerns. This is accomplished by providing easily-accessed servic es to children when problems are first identified. Blank, Melaville, and Shah (2003) summarized th e research on community schools and found significant gains in academic achievement, impr oved family stability and involvement in their childs school, improved school climate, effective use of school buildings, and increased security and pride in neighbor hoods. The concept of full-service schools may be most beneficial in iden tifying and providing services to younger children and their families who are connected with early ch ildhood centers and daycares. This would promote the earliest and most beneficial prevention, assessmen t, and intervention effects for young, at-risk children. The School Psychologists Role in D eveloping and Implementing Policy The current study showed that general pedi atricians are best ab le to follow AAP

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128 guidelines for serving young children having delays when provided with adequate training materials and opportunities, in additi on to opportunities for collaboration within and across disciplines. School psychologists can play a key role in assisting this process at its foundation policy development. To assist with policy development, school psychologists are encouraged to begin initia ting discussions with general pediatricians (those practicing and within academia) that would assist both disciplines in understanding each others perspectives and experiences re lated to servicing young children. This would be an appropriate time for school psychologist s to educate general pe diatricians about the expanding role of school psychology, in addi tion to the vast skills held by these professionals. After developing rappor t with the medical community, school psychologists can focus their efforts on assis ting with the design and implementation of research that is geared towards solving concerns within both disciplines, as these concerns relate to young children. The goal of having school psychol ogists assist with research development and implementation w ould be to provide a more comprehensive view of the problems faced by a variety of st akeholders and possible solutions to these problems, as well as develop plans of action and evaluation. School psychologists understanding of the change process involving both individuals and larger systems would provide general pediatricians with valuable support as they prepar e to develop novel and revised guidelines and initiatives, and methods of accountability that enable their adoption of and adaptation to change. Through this process, school psychologists could support their field as well as the medical field with overcoming barriers and making lasting change. With a firm foundation base d on research and inclusive of multiple disciplines and perspectives within disc iplines, effective policy development and

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129 implementation will occur. Implications for Practice Although this studys focus began with a discussion about general pediatricians, the importance of collaboration among indivi duals within the child s home, school, and broader community environments must be underscored. The old African proverb states, It takes a village to raise a child and as tim e evolves, this statement continues to hold true. Family life is not as it was fifty year s ago, and children and families are currently faced with barriers that are preventing them fr om receiving the basic necessities of life. With that being said, professionals are a nd will continue to be challenged with the assignment of collaborating in an effort to assist our most needy children and families. It is imperative that we keep this focus if we truly believe that all children can learn and no child should be left behind. Consider ing the limited resources and overwhelm experienced by several disciplines, a collabo rative effort is necessary. Therefore, healthcare professionals, mental health pr ofessionals, early childhood and elementary school educators, rehabilitation specialists, families, and many other stakeholders are equipped with the knowledge and skills needed to positively impact our nations children. School psychologists are uniquely trained to collaborate with others to address the developmental, learning, mental health, and behavioral concerns of children. The following are a list of general recommendations that each participant within a childs life (other than general pediatricians) can implement to assist with effectively communicating/collaborating with other professionals to serve young children and families in need.

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130 General Recommendations for Parents and Caregivers: Ask questions to all professionals about your childs development and current functioning on a regular basis. Ask for examples of ways to promote your childs development within the home and/or school settings. Keep your childs general pediatrici an informed about the evaluations, procedures, and therapies your child has received. General Recommendations for Other He althcare Providers and CommunityBased Specialists: With parent permission, provide updates of recent evaluations, procedures, therapies, etc. that have been complete d for the general pediatricians review. Inform parents of ways they can sup port their childs functioning within the home and/or school environments. General Recommendations for Educators: Keep parents informed about their child s progress within the school setting. Inform parents when concerns arise for their child. Also, when these concerns arise, seek counsel from members of your schools or childcare centers problem-solving team first This will provide th e opportunity for conducting assessments and developing appropriate interventions for implementation and monitoring prior to diagnosing a child with a disability. General Recommendations for School Psychologists: With parent permission, update the childs general pediatrician on screenings, evaluations, and/or interventions completed.

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131 Work with the schools problem-solving team to address concerns for young children. Also, educate the school sta ff regarding the implementation of effective problem solving when working with children. This is an important duty for school psychologists, consideri ng the traditional test and place role of school psychologists is being repla ced by a Response to Intervention (RTI) approach to assessment and intervention. Educate parents regarding th eir rights, expectations for their child, and ways to become involved with their childs education As a result of interview data obtained w ithin this study, specific recommendations also have been provided for other healthcare providers and commun ity-based specialists, educators, and school psychologists. Additional Recommendations for Other Health-Care Providers and CommunityBased Specialists: Consult and/or inform general pediatricians of concerns that may arise regarding the childs health or ge neral functioning during visits. Conduct developmental, vision, hearing, dental, and/or other screenings within the childs home or community settings to assist with gathering assessment data for early intervention planning. Additional Recommenda tion for Educators: Conduct developmental screenings within the school or childcare setting. Additional Recommendations for School Psychologists: Assist with the development and impl ementation of public screening efforts within the community

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132 Educate school staff regarding school procedures (e.g., Exceptional Student Education (ESE) guidelines), in add ition to assessment and intervention strategies. Educate medical professionals on unde rstanding and inte rpreting reports, using standardized screening tools, and understanding school procedures and the law (e.g., Other Health Impaired category of special education, Section 504 Plan, etc.) Work within the school and/or non-traditional settings to assess the developmental functioning of young child ren and create plans for early intervention. Collaborate with other stakeholders to participate in community outreach efforts (e.g., free, public screenings) that help to identify young children having potential delays and disabilities. Assist with developing policies in co llaboration with general pediatricians and/or other disciplines to promote stra tegies for the early identification of children having developmental concerns. Future Research Regarding the limitations noted within th is study, the researcher has developed several recommendations for future research. In an effort to increase generalizability to the larger population of general pediatricians, it is suggested th at this study and/or similar research studies utilize a larger sample si ze of individuals who ar e members of the AAP. Additionally, in the ev ent that future qualitative studi es are conducted, the researcher should first consult with genera l pediatricians prior to conduc ting interviews to determine

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133 how they would structure the topic of AAP gui delines and barriers themselves. This may provide even richer data that address th e specific topics of c oncern held by general pediatricians. Additionally, af ter conducting interviews with general pediatricians and allowing them to review transcripts, res earchers are encouraged to ask a follow-up question (i.e., Since the interview, is th ere anything you would like to add?). This follow-up question will provide the intervie wee an opportunity to share additional information. Finally, face-to-face interv iews are recommended instead of phone interviews in order to capture the verbal and nonverbal communi cation patterns of the interviewees. Additional recommendations for future research also should be noted. Specifically, it is suggested that future re search examine the f easibility of general pediatricians use of developmental screen ers within multiple settings. As mentioned previously, general pediatrician s who are unsure of or refuse to use these screeners may benefit from observing a colleague or other professional model the administration of them and/or have access to additional personnel (e.g., medical residents, school psychology interns, volunteers, etc.) to help them incorporate the usage of these tools within their environments. The use of comput er technology also should be considered to assist with the completion of developmental screeners and the pr ovision of anticipatory guidance during the visit. Furthermore, an examination of general pediatricians characteristics, thought processes, and readiness to adopt change would provide an understanding of the individuals who are most/l east resistant to proposed changes (e.g., new policies, guidelines, etc.) and the specific strategies that must be developed to facilitate an

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134 acceptance of change. Regarding children from low SES backgrounds, a pilot study examining the effectiveness of providing alte rnative methods of receiving medical care for this population of children who often lack access to the medical home should be examined. Also, studies examining the deve lopment and implementation of full-service schools/early childhood centers w ithin communities are another area in which continued research would be beneficial. Finally, there is a need for policy research to determine the impact of health-related and h ealth insurance policies on the services and service delivery provided by general pediatricians and other healthcare professionals. Conclusion This study sought to determine how gene ral pediatricians have overcome the many barriers faced within their daily settings as they strive to provide services for young children with delays and disabilities. The us e of both formal and informal strategies and/or supports by general pediatricians has shown their resilience and dedication to helping children and families. Every professional has or will face barriers within his or her career; therefore, it is necessary to emphasize the benefits of collaboration across disciplines as a method for overcoming thos e obstacles that cannot be eradicated individually. This study demonstrates how implementing a multidisciplinary, collaborative approach can a ssist general pediatricians a nd other professionals with maintaining best practice, overcoming ba rriers, and ultimately providing the most beneficial early identificati on and intervention services to at-risk children and their families.

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135 List of References American Academy of Pediatrics (2001a). Developmental su rveillance and sc reening of infants and young children. Pediatrics, 108, 192-196. American Academy of Pediatrics (2001b). Pediatrician demographics and practice characteristics. Retrieved June 7, 2008, from http://www.aap.org/workforce/demo graphics2001.ppt#259,1, Pediatrician Demographics and Practice Characteristics. American Academy of Pediatrics (2002). Medical home initiatives of the children with special healthcare needs project adviso ry committee. The medical home. Pediatrics, 110, 184-186. American Academy of Pediatri cs (2005). Pediatricians re ported practices regarding developmental screening: Do guidelines work? Do they help? Pediatrics, 116, 174-179. American Academy of Pediat rics (2006). Identifying infants and young children with developmental disorders in the medical home: An algorithm for developmental surveillance and screening. Pediatrics, 118 (1), 405-420. American Academy of Pediatrics (2008). Membership FAQs Frequently Asked Questions. Retrieved July 7, 2008, from http://www.aap.org/member/faqPublic.htm American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). Washington, D.C. Berk, L. (2000). Child development (5th ed.). Needham Heights, MA: Allyn & Bacon. Blanchard, L.T., Gurka, M.J., & Blackman, J. A. (2006). Emotional, developmental, and behavioral health of American children and their families: A Report from the 2003 National Survey of Childrens Health. Pediatrics, 117 (6), 1202-1212. Blank, M., Melaville, A., & Shah, B. (2003). Making the difference: Research and practice in community schools Washington, DC: Coalition for Community Schools, Institute for Educational Leadership. Blaxter, L., Hughes, C., & Tight, M. (2001). How to research (2nd ed.). Philadelphia, PA: Open University Press.

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136 Bogdan, R. and Biklen, S. (1992). Qualitative research for education: An introduction to theory and methods. Needham Heights, MA: Allyn and Bacon Brantlinger, E., Jimenez, R., Klinger, J., Pugach, M., & Richardson, V. (2005). Qualitative studies in special education. Council for Exceptional Children, 71, 195-207. Campos, L. (2008). School Board Awards Pediatrics fo r Ronald McDonald Mobile Care Program. Retrieved June 13, 2008, from University of South Florida, USF Health Web site: http://hscweb3.hsc.usf.edu/health/now/?p=498 Canter, A. (1998). Understanding test scores Retrieved May 9, 2008, from http://www.wyandotte.org/SpecialEd/understanding_test_scores.htm Carspecken, P. & Apple, M. (1992). Critical qualitative research: Theory, methodology, and practice. In M.D. Lecompte, W. L. Millroy, & J. Preissle (Eds.), The Handbook of Qualitative Research in Education (pp. 448-505). San Diego, CA: Academic Press. Centers for Disease Contro l and Prevention (2005). Child development and public health. Retrieved October 7, 2005, from http://www.cdc.gov/ncbddd/child/development.htm. Charman, T. (2003). Screening and surveillance for autism spectrum disorder in research and practice. Early Child Development and Care, 173, 363-374. Cooley, C. (2004). Redefining primary pediatri c care for children w ith special health care needs: the primary care medical home. Current Opinions in Pediatrics, 16, 689-692. Crockett, D. (2004). Critical is sues children face in the 2000s. School Psychology Review, 33, 78-82. Dillman, D.A. (1978). Mail and telephone surveys: The total design method New York: John Wiley & Sons. Duncan, G. & Brookes-Gunn, J. (1997). Consequences of growing up poor. New York, NY: Russell Sage Foundation. Dworkin, P. (2001). Developmental screening: (Still) expecting the impossible? Pediatrics, 89, 1253-1255. Fagan, T.K. & Wise, P.S. (2000). School Psychology: Past, Present, and Future. Bethesda, MD: National Associat ion of School Psychologists.

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137 Frazer, C., Emans, J., Goodman, E., Luoni, M ., Bravender, T., & Knight, J. (1999). Teaching residents about development and behavior. Archives of Pediatrics and Adolescent Medicine, 153, 1190-1194. Freebody, P. (2003). Qualitative research in educa tion Interaction and practice. Thousand Oaks, CA: SAGE Publications, Inc. Gall, M. D., Borg, W. R., & Gall, J. P. (1996). Educational research: An introduction. White Plains, NY: Longman. Gartin, B.C. (2005). IDEA 2004 The IEP. Remedial and Special Education, 26 (6), 327331. Glascoe, F. (2000). Early detection of developmental and behavioral problems. Pediatrics in Review, 21, 272-280. Glascoe, F. (2003, May). Developmental/behavioral screenin g: How to do it efficiently and cost-effectively and why. Powerpoint presented at the May 2003 Institute for Leaders in CSHCN Programs Workshop, Vanderbilt University. Glascoe, F. & MacLean, W. (1990). How parents appraise their childs development. Family Relations, 39, 280-283. Guralnick, M. (2000). Interdisciplinary clinical asse ssment of young children with developmental disabilities. Baltimore, MD: Paul H. Brookes Publishing Co. Halfon, N., Inkelas, M., Abrams, M., & Stevens, G. (2005). Quality of preventive health care for young children: Strategies for improvement New York, NY: The Commonwealth Fund. Halfon, N., Regalado, M., McLearn, K ., Kuo, A., & Wright, K.(2003). Building a bridge from birth to school: Improv ing developmental and behavioral health services for young children. (Report No. PS 031226) New York, NY: US Department of Education. (ERIC Document Reproduction Service No. ED475639) Halfon, N., Regalado, M., Sareen, H., Inkelas, M., Reuland, C., Glascoe, F., & Olson, L. (2004). Assessing development in the pediatric office. Pediatrics, 113, 19261933. Halle, T.B., Kurtz-Costes, B. & Mahoney, J. L. (1997). Family Influences on School Achievement in Low-Income, African American Children. Journal of Educational Psychology, 89 (3), 527-537.

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138 Ingram, C.J., Obrien-Gonzalez, A., Main, D.S., Barley, G., & Westfall, J.M. (1999). The family physician and house calls: A survey of Colorado family physicians. Journal of Family Practice, 48 (1), 62-65. King, T. & Glascoe, F. (2003). Developmental surveillance of infants and young children in pediatric primary care. Current Opinion in Pediatrics, 15, 624-629. Knopp, C. & Krakow, J. (1983). The developmen talist and the study of biological risk: A view of the past with an eye toward the future. Child Development, 54, 10861108. Krueger, R.A. & Casey, M. (2000). Focus Groups. A Practical Guide for Applied Research (3rd ed.). London: Sage Publications. Lebaron, C., Rodewald, L., and Humiston, S. (1999). How much time is spent on wellchild care and vaccinations? Archives of Pediatrics and Adolescent Medicine, 159, 482-485. LeCompte, M. & Schensul, J. (1999). Analyzing and interpreting ethnographic data in 5 ethnographers toolkit. Walnut Creek, CA: Altamira Press. Lewis, C., Lynch, H., and Richardson, L. ( 2005). Flouride varnish use in primary care: What do providers think? Pediatrics, 115 69-76. Mack, K.G. (2004). Are school psychologists engaging in parent involvement activities at the elementary school level?: A national study Unpublished specialist's degree thesis, University of South Florida, Tampa. Morris, P. & Gennetian, L. (2003). Identifyi ng the effects of income on childrens development using experimental data. Journal of Marriage and Family, 65, 716729. National Center for Medical Home Initiativ es for Children with Special Needs (2003, November). The medical home and early intervention programs. Retrieved October 7, 2005, from http://www.medicalhomeinfo.org. Nickel, R., Cooley, C., McA llister, J., & Samson-Fang, L. (2003). Building medical homes for children with special health care needs. Infants and Young Children, 16 (4), 331-341. Nickel, R. & Desch, L. (2000). The physicians guide to ca ring for children with disabilities and chronic conditions. Baltimore, MD: Paul H. Brookes Publishing Company. Noble, K. G., Norman, M.F., & Farah, M.J. (2005). Neurocognitive correlates of socioeconomic status in kindergarten children. Developmental Science, 8, 74-84.

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139 Nolan, K., Young, E., Hebert, E., & Wilding, G. (2005). Service coordination for children with complex healthcare needs in an early intervention program. Infants and Young Children, 18 161-170. OConnor, K.G. & Sharp, S. (2000 ). Changes in practice charac teristics of pediatricians. Paper presented at the 200 Academy for Health Services research and Health Policy Meeting. Abstract retrieved May 2, 2008, from http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102273102.html Palfrey, J.S., Sofis, L.A., & Davidson, E.J. (2004). The pediatric alliance for coordinated care: Eval uation of a medical home model. Pediatrics, 113 (5), 1507-1516. Perrin, E. (1999). Commentary: Collaboration in pediatric primary care: A pediatricians view. Journal of Pediatric Psychology, 24, 453-458. Peterson, C. & Luze, G. (1996). School psychology and early childhood services: A look at what is happening in one state. (Report No. H029F-40-08-1). Washington, D.C.: Department of Education. (ERIC Document Reproduction Service No. ED400478) Pollitt, E. (1994). Poverty and child developm ent: Relevance of research in developing countries to the United States. Child Development, 65, 283-295. Pope, C., van Royen, P., and Baker, R. ( 2002). Qualitative methods in research on healthcare quality. Quality and Safety in Healthcare, 11 (2), 148-152. Power, T.J.& Bradley-Klug, K. (2006, March). Pediatric school psychology: Opportunities and perspectives on training and practice. Paper presented at the meeting of the National Association of School Psychologists, Anaheim, CA. Power,T.J., DuPaul,G.J., Shapiro, E.S., & Parrish, J.M. (1998). Role of the school-based professional in health -related services. In L.Phelps (Ed.), Health related disorders in children and adolescents (pp.15-26). Washington, D.C.: American Psychological Association. Prieto, G. (2002). Pediatric evaluation of the child at risk for potential developmental disabilities. Powerpoint presented at the Miam i Childrens Hospital, Miami, FL. cine, 153, 1154-1159. Sandall, S., McLean, M., & Smith, B. (2000). DEC recommended practices in early intervention/early child hood special education. Longmont, CO: Sopris West. Sandelowski, M. (1995). Focus on qualitati ve methods: Sample size in qualitative research. Research in Nursing and Health, 18, 179-183.

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140 Sandler, A., Brazdziunas, D., Cooley, C., dePije m, L., Hirsch, D., Ka stner, T., Kummer, M., Quint, R., Ruppert, E., Anderson, W., Crider, B., Burgan, P., Garner, C., McPherson, M., Michaud, L., Yeargin-Allsopp, M., Cartwright, J., & Johnson, C. (2001). Role of the pediatrician in fam ily-centered early intervention services. Pediatrics, 107, 1155-1157. Sanghavi, D.M. (2005). Taking well-child care into the 21st century. A novel, effective method for improving parent knowledge using computerized tutorials. Archives of Pediatrics and Adol escent Medicine, 159 (5), 482-485. Scarborough, A., Hebbeler, K, & Spiker, D. (200 6). Eligibility Charact eristics of Infants and Toddlers Entering Early In tervention Services in the United States. Journal of Policy and Practice in Intellectual Disabilities, 3 (1), 57-64. Sheridan, S.M. & Ellis, C. (2006, March). Pediatric school psychology : Opportunities and perspectives on training and practice. Paper presented at the meeting of the National Association of School Psychologists, Anaheim, CA. Sices, L. (2007). Developmental Screening in Primar y Care: The Effectiveness of Current Practice an d Recommendations for Improvement. Boston Medical Center, Boston Univ ersity School of Medicine. Sices, L., Feudtner, C., Mclaughlin, J., Dr otar, D., & Williams, M. (2004). How do primary care physicians identify young child ren with developmental delays? A national survey. Pediatrics, 113, 274-282. Silverstein, M., Grossman, D., Koepsell, T., & Ri vara, F. (2003). Pedi atricians reported practices regarding early educat ion and head start referral. Pediatrics, 111, 13511357. Silverstein, R. (2005, January). A users guide to the 2004 IDEA Reauthorization (P.L. 108-446 and the conference report). Paper presented at the meeting of the Consortium for Citizens with Di sabilities, Washington, DC. Strickland, B., McPherson, M., Weissman, G., van Dyck, P., Huang, Z.J., & Newacheck, P. (2004). Access to the medical home: Results of the national survey of children with special healthcare needs. Pediatrics, 113 (5), 1485-1492. Tellis, W. (1997). Introduction to case study. [Electronic Version]. The Qualitative Report, 3(2). Retrieved May 2, 2008, from http://www.nova.edu/ssss/QR/QR32/tellis1.html Tervo (2003). Identifying patterns of de velopmental delays can help diagnose neurodevelopmental disorders. A Pediatric Perspective, 12 (3) 1-6.

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141 Thompson, S. (2002). Medical practice melds past with future Retrieved June 7, 2008, from http://www.doctorsmakinghousecalls.com/news/news_02.php. Walsh, S., Smith, B.J., & Taylor, R.C. (2000). IDEA requirements for preschoolers with disabilities: Challenging behavior. Reston, VA: Council for Exceptional Children, Division for Early Childhood. Warger, C. (2001). Research on full-service school s and students with disabilities. Arlington, VA: ERIC Clearinghouse on Disabilities and Gifted Education. (ERIC Digest ED 458749). Wilen, J. (2003). Ready for school: The case for including babies and toddlers as we expand preschool opportunities. (Report No. PS 031558). Chicago, IL: Ounce of Prevention Fund. (ERIC Document Reproduction Service No. ED480821) Yarbrough, K. (2001). Step by step: Incorporating developmental screening into programs and services for young childr en. Birth-2-3 best practices. (Report No. PS 030081). Chicago, IL: Ounce of Prevention Fund (ERIC Document Reproduction Service No. ED462155) Yin, R. (1994). Case study research: Design and methods (2nd ed.). Beverly Hills, CA: Sage Publishing.

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142 Appendices

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Appendix A Introductory Email Dear AAP Member, You have been selected to participate in a survey after consulting with Drs. Carol Lilly and Lynnette Ringenberg who are both past representatives to the Region V Florida Chapter of the AAP. They have assisted me with identifying pediatricians within the West Florida area who have a reputation for following best practices for serving young children. Please go to https://www.surveymonkey.com/s.asp?u=745322426510 to complete a brief (3-5 minute) survey regarding AAP best practices and barriers to implementing these recommendations. Upon your completion of this survey, I will be selecting 7 pediatricians to participate in an interview. My goal is to provide other pediatricians with information on how you have overcome obstacles in identifying children with developmental delays and disab ilities. In addition, I would like to collect information on those areas that continue to pos e as challenges for pedi atricians to follow best practice guidelines. If you agree to participate in an interview, it w ould be my goal to gain insight into the practices youve implemented while identifying and referring young children with developmental delays and disabilities, as well as discover what has helped you become successful when working with this population. This interview will take approximately 1 143

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144 Appendix A (Continued) hour and will be audiotaped to ensure the correct transcrip tion of responses. Additionally, I would like to meet briefly with each interviewee at a later date to make certain that my summarization and interpretation of responses is accurate. Restaurant gift certificates will be provided to the 7 pediatricians at the culmination of their interviews. You are free to contact either myself or my doctoral chair, Kathy Bradley-Klug, Ph.D., with any questions or comments. You can reach Dr. Bradley-Klug at (813) 974-9486 or kbradley@tempest.coedu.usf.edu I thank you in advance for taking time out of your busy schedule to assist me with my research. Kahlila Mack, Ed.S. Doctoral Candidate University of South Florida Note: All survey and interview results will remain confidential and there will be no identifying information published with the results.

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Appendix B Follow-up Email Dear AAP Member, To those who have already completed th e survey, thank you very much for your feedback. If you have not completed the surv ey, please take a few minutes in the next few days to complete it. I greatly appreciate your feedback. Here is the information about the survey: Please go to https://www.surveymonkey.com/s.asp?u=745322426510 to complete a brief (3-5 minute) survey regarding AAP best practices and barriers to implementing these recommendations. Upon your completion of this survey, I will be selecting 7 pediatricians to participate in an interview. My goal is to provide other pediatricians with information on how you have overcome obstacles in identifying children with developmental delays and disab ilities. In addition, I would like to collect information on those areas that continue to pos e as challenges for pedi atricians to follow best practice guidelines. This interview will take approx imately 1 hour and will be audiotaped to ensure the correct transcription of responses. Additionally, I would like to meet briefly with each interviewee at a later date to make certain that my summarization and interpretation of responses is accurate. Restaurant gift certif icates will be provided to each of the 7 pediatricians at the end of their individual interviews. 145

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146 Appendix B (Continued) You are free to contact either myself or my doctoral chair, Kathy Bradley-Klug, Ph.D., with any questions or comments. Y ou can reach Dr. Bradley-Klug at (813) 9749486 or kbradley@tempest.coedu.usf.edu I thank you in advance for taking time out of your busy schedule to assist me with my research. Kahlila Mack, Ed.S. Doctoral Candidate University of South Florida Note: All survey and interview results will remain confidential and there will be no identifying information published with the results.

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147 Appendix C Informed Consent Document This Study: The present research study will be ex amining the experiences of general pediatricians who have been recommended as successful in following the American Academy of Pediatrics (AAP) guidelines for practice when iden tifying and promptly referring young children with de velopmental delays and disa bilities. You have been chosen as an interview candidate by the resear cher, with the assistance of Drs. Carol Lilly and Lynnette Ringenberg who are both past representatives to the Region V Florida Chapter of the AAP. They have assisted th e researcher with identifying pediatricians within the West Florida area who have a reputation for following best practices for serving young children. It is this researchers goal to discuss with you how you have overcome some of the barriers faced by general pediatricians working with young children, as well as those barrie rs that continue to exist, despite your efforts. This information will be compiled and used to a dd to the literature involving successful practice strategies implemented in concor dance with AAP guidelines. Voluntary Participation: Your participation is comple tely voluntary, therefore giving you the right to withdraw from the study at a ny time or not to participate at all. By signing this informed consent document from th e Institutional Review Board (IRB) of the University of South Florida, you are agreei ng to participate in this research. Risks: There are no known risks as a resu lt of participating in this study. Benefits: By taking part in this study, you will increase the knowledge base of the pediatric and other child -related fields regarding pediatricians successful engagement in identifying and referring children with developmental delays a nd disabilities.

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148 Appendix C (Continued) Additionally, this knowledge you provide will as sist the field with considering ways in which other professionals may collaborate with general pediatricians in an effort to eliminate the barriers faced. Payment: You will be given a gift certificate in the amount of $30.00 to a restaurant in the West Florida area upon completion of the interview with the researcher. Confidentiality of Your Responses: Authorized research personnel, employees of the Department of Health and Human Services, and the USF Institutional Review Board and its staff and any other indivi duals acting on behalf of USF may inspect the records from this research project. Your individual res ponses will not be shared with school system personnel, healthcare personnel, or anyone ot her than Dr. Kathy Bradley-Klug, my major professor. Your interview transcript will be assigned a code number to protect the confidentiality of your res ponses and will be kept in a locked file cabinet. What Ill Do With Your Responses: The results of this study may be published. However, the data obtained from you will be summarized and/or combined with data from other individuals in the publication. The published results will not include your name, email, or any other personally identifying information. Questions? If you have any questions about this study, please call my major professor, Kathy Bradley-Klug, Ph.D. at 813-974-9486. If you have any questions about your rights as a person who is taking part in a resear ch study, you may contact a member of the IRB Division of Research Integrity and Compliance at the Univers ity of South Florida at 813974-5638. I thank you in advance for your participation.

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149 Appendix C (Continued) Signature of Participant: ____________________________ Date: _____________

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Appendix D Online Survey Young Children With Delays and Disabilities This survey will take 3-5 minutes of your tim e. All responses will be sent over a secure, encrypted internet connection. Additionally, your responses will be compiled with other pediatricians' responses, therefore, protecting your confidentiality. Demographic Information Any identifying information that you provide will be protected and ONLY viewed by the researcher. 1. Name (will not be revealed in analysis) 2. Email address (please type th e address this survey was sent to) 3. 21-31 years 32-42 years 43-53 years 54-64 years 65-75 years 76 years and older O O O O O O 4. Gender Male O Female O 5. Type of pediatrician general pediatrician O pediatric subspecialist O Survey website: https://www.surveymonkey.com/s.asp?u=745322426510 Note: Items marked * indicate a choice is needed to com p lete the online surve y 150

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6. Years in practice (check one) 1-5 years O 5-10 years O 10-15 years O 15-20 years O 20 years or more O 7. Practice Setting (check one) Age O Hospital O Private Practice O Clinic O Suburban 8. Practice Setting (check one) O Urban O Rural O Suburban 9. Approximately how many hours do you work per week? (check one) 30-40 O 40-50 O 50-60 O 60-70 O 70 or more O American Academy of Pediatri cs (AAP) Recommendations Please note the PERCENTAGE OF TIME per week you have implemented each of the following AAP recommendations for th e majority of your patients. If you have not implemented a recommenda tion, please note N/A as your response. Note: Each drop down menu on the onlin e survey has the following options: N/A; 120%; 21-40%; 41-60%; 61-80%; 81-100% 1. I have maintained and updated my know ledge about developmental issues, risk factors, screening techniques, and community resources to assist with consultation, referral, and intervention. Appendix D (Continued) 2. I have acquired the skills needed to ad minister and interpret valid and reliable developmental screeners (e.g., De nver, Ages & Stages, etc.). 151

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* 3. I have presented screening results to families using a culturally sensitive and familycentered approach. Appendix D (continued) 4. I have referred children with developm ental delays in a timely fashion to the appropriate early intervention/early childhood programs within the community. 5. I have determined the cause of delays or consulted with the appropriate individual for determination. 6. I have maintained relationships with community-based resour ces and coordinated care with them through the medical home. 7. I have increased parents' awareness of developmental disabilities and resources for intervention. 8. I have offered guidance to families by interpreting consultants findings. American Academy of Pediatrics (AAP) Recommendationscontinued For the following recommendation, INDICATE YES OR NO. 1. I have developed a strate gy for providing periodic screeni ng in the content if officebased primary care. Common Barriers to AAP Recommendations Please identify the barriers that you have been able to overcome at any time within your practice. Please CHECK ALL THAT APPLY. 152

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* 1. My office staff is currently able to... O obtain reimbursement for preventive services O administer valida ted screening tools O score validated screening tools O refer families to community resources O assist with developmental surveillance O budget for the cost of standardized instruments Interview You may be chosen to participat e in a face-to-face in terview. In the event that this occurs, please indicate possible days a nd times (including non-patient or administrative days) that this would be most feasible. 1. Best day(s) of the week for possible interview contact (ch eck all that apply) O Monday O Tuesday O Wednesday O Thursday O Friday O Saturday O Sunday 2. Best time of the day for possible inte rview contact (check all that apply) Morning Afternoon Evening O O O You have reached the end of th e survey. Thank you for your time. Appendix D (Continued) A ppe n d ix D (co ntin ued) 153

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154 Appendix E Interview Protocol Participant # ________ Thank you for volunteering to participate in this research study today. The purpose of this interview is to help me understand the experiences that you have had within your practice when identifying young children with developmental delays and disabilities early, and referring these child ren to early intervention services. Specifically, I am interested in knowing how you have been able to consistently follow some of American Academy of Pediatrics recommended practices when working with young children. The results of this study will poten tially help other physicians learn strategies that you have implemented to overcome some of the comm on barriers faced by general pediatricians (e.g., lacking knowledge/training in the administration and scor ing of validated screening tools, lacking knowledge of community resources for intervention services, etc.). Additionally, the field of school psychology will be informed regarding ways to collaborate with general pediatri cians in an effort to provide children with the best start to their early educational years. You have been selected for partic ipation in this study because you have demonstrated success in following AAPs best practices within your practice. Your story will be recorded in order for me to review at a la ter time to ensure that I am capturing what you are sharing in an accurate an d representative manner. Keep in mind that there are no right or wr ong answers; I am simply hoping to learn more about your experiences, particularly those related to ove rcoming barriers within your practice when

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155 Appendix E (Continued) engaging in identification and referral activ ities of young children with developmental concerns. Before we begin, lets set a few ground rules. This interview will last up to 60 minutes. We will really try to respect these time lim its considering your busy schedule. Also, I will be speaking as little as possible, in an effort of fo cusing on prompting you for more information and clarification as you tell your ex periences and perceptions. If at any time you feel uncomfortable, please in form me and we can move to the next question. Finally, on a later date I will be requesting a follow-up meeting with you to review your responses and ensure their accuracy. Do you have any ques tions or concerns at this time? Ok, lets begin. Please tell me about your st ory and experiences as a pediat rician at name of practice. The researcher will use a combination of clar ification and paraphrasing in order to ensure the accurate understanding of the pediatricians story. In addition to asking the primary research question, the research er will ask the parent an open-ended follow-up question about topics specified below. For each area, the researcher will ask: Tell me more about _______ or There are a couple of other things I wa s wondering about. Tell me more about _______

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156 Appendix E (Continued) Interview Topic Domains and Prompts Question 1 You indicated on the online survey that you have been able to consistently maintain educated about deve lopmental issues, risk factors, screening techniques, and community resources to assist with consultation, referral, and intervention. -The first is child developmental issues. Tell me more about how you have been able to do this. -The second is child risk factors. Tell me more about how you have been able to do this. -The third is screening techniques. Tell me more about how you have been able to do this. -The fourth is knowledge of community resour ces to assist with consultation, referral, and intervention. Tell me more about how you have been able to do this. Question 2 You indicated that you have acquired th e skills needed to administer and interpret valid and reliable de velopmental screeners. Tell me more about how you have been able to acquire these skills. Question 3 You indicated that you have been able to develop a strategy for providing periodic screening in the context of office-based primar y care. What strategy have you developed? How did you de velop this strategy? Question 4 You indicated that you present scre ening results to families using a culturally sensitive and family-centered approach. Please provide an example of how

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157 Appendix E (Continued) you have provided this information effectively. Probe: For example, what is you have a mother who is minimally competent in English? What do you do? Question 5 You indicated that you refer children with developmental delays in a timely fashion to the appropriate early in tervention/early childhood programs within the community. Please explain the process you have implemented in order to do this is a timely fashion. What are the steps you take from well-child visit to referral? How did you become knowledgeable of the pr ograms within the community? Question 6 You indicated that you are able to determine the cause of delays or consult with the appropriate c onsultant for determination. Please provide an example of how you are able to connect with other hea lthcare professionals/consultants regarding your patients. Question 7 You indicated that you have been ab le to maintain relationships with community-based resources and coordinate care with them through the medical home. How have you been able to do this? Question 8 You indicated that you have been able to increase parents awareness of developmental disabilities and resources for intervention. Please explain how you have been able to do this within your practice. Question 9 You indicated that you have been able to assist families with interpreting reports or feedback from other practitioners Please explain how you make this happen. NOTE: For each AAP recommendation not endor sed by the general pediatrician, the

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158 Appendix E (Continued) researcher will state the following: I noticed that you did not indicate that you have been able to Please explain your views on why this is the case. Question 10 I am going to read through a list of barriers and I want you to either inform me that the item is a barrier you ha ve yet to overcome, or explain how you have managed to overcome the barrier. a. Obtain reimbursement for preventive services b. Administer validated scr eening tools (e.g., direct asse ssment or parent report) c. Score validated screening tools d. Refer families to community resources for intervention e. Assign office staff to assist with developmental surveillance f. Finance the cost of standardized instruments Follow-up Question: Are there any other barriers you encounter? Probe: How have you a ddressed these barriers? Question 11 The final question regards your co ntact with other professionals who work with children having developmental delays and disabilities. Which professionals do you refer to when you identify a child? Can you/do you collaborate with other professionals?

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159 Appendix F Request to Review Transcript Dear ____________, On ________, I conducted an interview with you regarding your experiences working with children having developmental delays and disabilities. At that time, we discussed your experiences with implementing AAP guide lines and your views on existing barriers. Attached to this email is the transcript from your interview. As explained to you at the time of the interview, your transcript does not include any identifying information. I am asking that you take a few minutes of your time to review this attachment to determine if the interview was accurately transcribed. Please send a reply email informing me of any changes that are need ed. You may provide comments on changes within the reply email. Please respond with your feedback via email by _______. I will be in contact with you in the near fu ture to review my study's results as I am preparing to defend my dissertation this summer. Again, I thank you for your assistance and time. Best regards, Kahlila Mack, Ed.S. School Psychology Doctoral Candidate University of South Florida

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160 Appendix G Transcripts Participant Number: 1 Interview Date: 3/21/07 Key: Interviewers responses in bold, pediatrician responses in normal typeset. Im going to be referring a lot to the onlin e survey that you filled out. Question oneyou indicated in the survey that you h ave been able to keep up to date about developmental issues, risk factors, screenin g techniques, community issues, etc. Let me ask you firstwhen talking about child development issues, how have you been able to increase your knowledge about that topic? I think one way is toI have a special interest in children with special needs so I have in national meetings, C.M.E.s. I might attend some of the workshops and lectures related to special needs like ADHD, children with disabi lities, and stuff like that. As far as resources, the other resources would be through the AAP. Its more like, its the kind of information that I dont seek out it finds me. For example, I am a member of the Council on Children with Disabilities with the AA P, so Im on their listserv. So I might not go into depth on everything they send, but sometimes they send a listserv which might talk about a certain guide line. And if its something of interest, I might look more into it. Otherwise, I might just scan it. So, the listserv might be helpful as you can pick and choose what you would like to go more deep into. Local resources sometimes are very hard. I find it challenging to know what resources are out there. Sometimes we know what is available in our own backyard at USF or

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161 Appendix G (Continued) Early Steps. Once the kids are over that age and not yet in school, or even sometimes when they are in school, it might take a while to get the children in the system. It might take a few months before parents are aware of whats out there. So, its sometimes hard to find what is available even local. Youre talking about community resources? Yes, community resources. Ok, so, are you saying that you have it und er control when it comes to the resources affiliated with USF or Early Steps, but it becomes a little more difficult to access resources outside of those? Yes and I think, you know, the national guidelines, because I dont practice development I dont consider myself an expert in applying them. Its just that, some of them I have more experience with applying them because some of them I know more about because of the volume of patients that I see. For example, the ADHD toolkit that the AAP came up with I use a lot. But, so me of the more sophisticated developmental testing that Early Steps does, I might be fam iliar with the test itse lf but we dont really use them. Youre actually hitting on a question regarding screening techniques. How would you say that youve increased your knowledge about the different screening techniques...through the same methods that you mentioned to me or other methods?

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162 Appendix G (Continued) Yes, and I think these are mostly the only me thods. As for the screening techniques, I dont think Ive had more opportunity to do th em. Im not too far up to date on new things because, like I said, we dont practice using them. If I were in the community where there were no Early Steps, I would have to use it more and Id be more familiar. Those are the things you end up referring. Alright. The second question isyou stated that you gained the skills needed to administer and interpret reliable developmen tal screeners. Is that related to the information we just reviewed? How did you acquire this information? How did you learn the skills to administer and/or interpret the tools that you use? I think that I was referring to the ADHD toolkit. Some of the AAP guidelines that were created, they came up with new guidelines on autism and stuff like that. I would say more like the diagnoses are base d on diagnostic criteria for autism, rather than doing the actual testing myself. Like, we administer the Ages and Stages questionnaires. We administer some of the developmental quest ions based on the Denver screening. So, those were acquired during residency. We used to use the Denver at that time and now the Ages and Stages became more popular its easier. So the Ages and Stages is one questionnaire that you use, and the Denver is not? Yes the Ages and Stages. The Denver, we dont use it anymore. We have our preprinted sheets in the clinic for well visits and there is a section on development that has the questions, does your child smile, does your child roll over, these questions were actually developed from the Denver. Our sheets are aged-based, so if Im seeing a patient

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163 Appendix G (Continued) who is on a six month old visit, we have a sh eet with developmental questions on that six month old sheet which are based on what a si x month old should do based on the Denver. So even though its not a formal Denver asse ssment, it has screeni ng questions and if somebody fails, or, mom says, yeah he does all th e motor stuff but not the language stuff, then you worry that maybe the child needs to be referred to speech so they can work with you and your child. Also, most of our questions, act ually all of our questions ar e between parentheses. For example, does your child say baba and dada, has an L in between which tells us that it is for language so at least we can make sure, vi sually if the child fails like five out of fifteen questions. You can see visually that mo st of the five are clustered into fine motor so we would seek occupational therapy. Is there some kind of a formula or criteri a set in addition to using clinical judgment? You mean like whether a child needs to fail a certain amount before referring? Yes. I think its more of a judgment call becau se sometimes it depends on the childs age because it is a spectrum so if the sheets sa y a six month old should do this but everything else being normal, maybe, for example, you have a mom who was worried because her child doesnt speak, she doesnt say words, and based on the sheet, she is supposed to. Then as you dig more into it, everything else shows that she is really developmentally fine actually more advance d. So, it was more because she s actually getting so much

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164 Appendix G (Continued) attention that she doesnt need to ask for anything she needs. Before she points to anything shes getting it. So, it actually wasnt a lack of s timulation but it was too much babying that, we actually explai ned to mom that if you give it to her she ca n say doll and let her repeat. We said we would wait a few more months to see. So, sometimes its not an automatic referral. Its rea lly individualized by the child. I understand. Like, if you have a premie baby and sometimes people forget that they were born premie because theyre now six months old. So tec hnically, if they are st ill two months behind on doing things yet everything else is still prog ressing, the little gap could be just because they are prematureand sometimes people forget that also. So, when we say this patient or this kid is ok on everything but she doesnt do this, then we go to the questions. If everything else is fine, for example, she wa s not a premie, we put them in a different category and then we would give them a chance, given the benefit of the doubt. So, since were on that topic, Im just going to jump ahead. Help me visualize what a well-child visit would look like from the moment they come in. I know everyone is different, but what kinds of things would you consider constants? You know, from when they [patients] come in to the poin t when they may be referred for services outside of your care. Well, during the well-child visits in our se tting, usually the reside nts go see the patients first, and our sheets are actually designed so they have the same kind of trigger. So, they

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165 Appendix G (Continued) start with what we call an interval hi story. You knowhas anything happened since weve last seen you? We saw your baby two months ago anything in between? Was he in the hospital? Was he sick? So, thats th e interval history. After that, we go over what we call the health maintenance, including que stions on diet, elimin ation, how much they sleep, who lives at home, socialyou know, almo st like screening quest ions. Then there are the developmental questions where we talk about the milestones. Then the residents do a full physical exam. Then, based on the hi story, the physical, the other side of the sheet is what we call anticipatory guidance also with age specific topics on each sheet that gives the residents an idea of things to di scuss at that age. S o, if theyre seeing a two month old, the stuff thats going to be on top would be talking more about fever, talking about taking the temperature, remembering to talk about, maybe sleep and stuff like that. If they are seeing a six month old or nine month old, there would be more safety stuff. You know, talking about child proofing the hous e because the child is mobile and stuff like that. And then, after that we would talk about shots if they need shots and things. Now, if at any point they need a referral for one reason or another, if they have developmental problems, usually the referral wi ll happen that day. Th ey [parents] get the referral, and it also depends on the age. If th ey are less than three years old, then they qualify to go to the Early Steps at least 1 visit the initial visit. So, we write the referral and the parents bring it to the front desk. At the front desk based on, I think, if they are less than two years old they actua lly send them to Early Steps. If they are older, then it becomes based on, if were not doing it through the school, Speech or PT or something

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166 Appendix G (Continued) like that, then we would work through their insurance and see if, for example, they have Medicaid, where would they go. They would give them a list or a phone number to call. Occasionally, we have pressing time where you want this kid seen its the first time weve seen them, they are really behind, and they cant afford to wait another three months for an appointment. Then we mi ght end up making a phone call for them and weve tried to get our social workers to facilitate that. Now if they have more global delays, like if the physical exam is abnormal, they may actually qualify for CMS Childrens Medical Se rvices because if they have cerebral palsy, for example, then we would actually use the social worker to get that done through the CMS system and get a caseworker who woul d actually help the family. Most of the time, those kids will need more than one re ferral. They would need to see neurology, and other people, so the CMS worker would help them through that. You mentioned the Ages and Stages. Tell me how your staff have been able to acquire the skills needed to administer and interpret this tool, as well as any other ones. The Vanderbilt? Yes how have you and your staff done this? We use the Vanderbilt assessment for ADHD. We used to use the Conners scales and actually I think the Genesis Clinic still has the Conners that they use sometimes. Here we have the Vanderbilt partly because it wa s an AAP endorsed initiative when they did the ADHD toolkit and that was how we learned it actuallyit was for the ADHD toolkit.

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167 Appendix G (Continued) We actually ended up going with the Vanderbil t because it was not copyrighted. So, we actually revised it on form and copied itversus the Conners. We would have to buy them and pay for the actual triplicates a nd its a little bit harder to score. Now the Conners, I learned it through my resi dency because thats what we used to do during residency. The Ages and Stages, it was not very common during my residency. I ended up learning it though, with [doctor], one of the developmental specialists. For work sometimes with [doctor], she was more based at All Childrens and she was doing a project on the Ages and Stages for the reside nts. While the residents were doing their rotations they would learn it but they wouldnt apply it in clin ic. They would learn it in the developmental rotations, but when they we nt to the clinic, part ly because we didnt know it, the faculty did not know it, and it wa s not part of what we do during the well visit because we had questions from the Denve r that was part of our screening. So she was testing to see if the residents applied it in their clinics. For example, would they catch things earlier? So, she was reviewing charts afterwards to see how many referrals they made based on the Ages and Stages. Actually, now its b ecoming more popular but we only target certain age groups. What age groups? We started out with the six months, nine months, and twelve months but I think we expanded it to the eighteen months. So, its six to eighteen I guess now. So basically we know what it entails, but the residents learne d it on developmental rotation. But really, the Ages and Stages is the easier one because it is more parent-driven. You dont have to

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168 Appendix G (Continued) do a whole lot better than l ooking at the data and interpre ting it. So, we do the Denver for development which is part of our forms, our history forms, and we do the Ages and Stages for certain age groups, and for ADHD we use the Vanderbilt. When it comes to actually using these in th e clinic, what issues have you found that have interfered with the flow? For the Vanderbilt, we give them the questionnaire and they take it home. Theres a teacher and parent questionnaire, but for the Ages and Stages we had to figure out where to fit it in that flow in the clinic. The best thing that was decided was that when the parents signed in, most of the time there is always a waiting time afte r they go to the front desk before the nurse calls them. So, while th ey are waiting in the waiting room they will start filling that out. But still, sometime s it may extend the visit a little because many times parents are called and theyre not ready yet. They havent finished filling it out. So, sometimes they would finish it when the residents go to another room after seeing the baby, they will finish it and th en well look at it. So, even looking at it is another extra time. So, definitely that and having the sta ff remember which ages to put in the charts. Sometimes the first few weeks, we didnt catch it and we forgot to put those forms in the chart. So, interpretationit happens when? Now, interpretation happens towards the end with the resident after they staff. Sometimes maybe the child is waiting for the nur se to come give their shots and at that time the residents are looking at it with us and deciding if the kid needs a referral.

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169 Appendix G (Continued) Majority of kids are fine and rarely need it so usually it doesnt ex tend things too much. But then the ones who need it, it does because you think youre done and all of a sudden you realize that the kid needs this. That happe ns pretty much with a lot of other things, like if you find the kid has bad vision. By the time the nurse does the vision and then comes back and says, you know this kid is 20/70 on their vision, then theyll write the referral and it takes a little time. But, I th ink the key is finding a time thats already within that time, like the waiting room...to have the parents do itfinding the time in that without adding additional time to the day. My next question actually hits on this. On the survey you indicated that youve been able to develop a strategy for providi ng periodic screening. We talked about the forms that you use and the modified Denver. Do you think I would be able to get a copy of any of these forms? Sure, absolutely. Ok, thank you. On the next one, you indicated that you present screening results to families using a culturally sensitive and fa mily centered approach. Can you give an example of how you provided th is information to families? Sure. Well, most of the time if we, for exam ple, lets say for the kid who needed more stimulation to talkone is giving them exam ples. If the kid is behind on speech and needed some more reading time or book time, we participate in the Reach Out and Read program. So, from six months on, we have books through a grant that we basically provide to the kid at the end of the visit to encourage parents to read to their kid. Each

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170 Appendix G (Continued) upper grade book we have in Spanish so the kids who are from Hispanic backgrounds also read in that language. We also, for older kids over five, we have a box that faculty bring used books for the kids because the gran t doesnt cover over five years. Also, we have volunteers through the Reach Out and Read program. They are high school students who actually, while the kids are in the waiting room, will actually sit and read for them and demonstrate to the family sometimes, just to role model for them. Now, as far as if a child has developmental problems and we need to refer and have to present thosemost of the time some of those kids parents may not really suspect it but they have other kids and realize that their ch ild was able to walk ea rlier or was talking by now. Or, they might bring it up anyway so th ey might be suspecting something. We may say, Yes, youre absolu tely right. It looks like he or sh e should be doing more. If its something mild that they can work with at home, we just give them examples of what they can do or handouts by saying, Heres so me other ways you can stimulate them more. But if theyre really delayed and they need to be re ferred, we basically explain to them what Early Steps is and they get to se e a doctor and physical therapist or speech. Sometimes, depending on the parents reactions, like if they feel that it is one more thing they must do, sometimes I reassure them by te lling them to go for the first visit because they may evaluate their child and decide that hes ok. Or, they might need a few times a week therapy, but you dont need to come to the center. We can teach you what to do at home. So, I reassure them and encourage them to go to the first evaluation so they dont neglect their appointment. I say that it might be just a one time thing or you might need

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171 Appendix G (Continued) to take your child a couple of times a week for therapy. Or, if your childs in a school, they might do their initial assessment and they might recommend that the therapist in the school does the therapy two times per week. So its usually through handouts, examples, demonstrations, etc. Okand how about if its an individual who has a language barrier? How do you present results to them? Depending on if theyre Spanish, usually the resi dents have one-half day a week in clinic. So, what we try to do is have at least everyday one resident who speaks Spanish so there is somebody there that speaks Spanish. Now if its something totallylike Japanese or whatever, sometimes weve used staff if theres anybody who speaks those languages. Weve also used AT&T translation on the phone. Thats usually it. We have some Creole and mostly Hispanic. Another question is that you indicated th at you refer children with developmental delays in a timely fashion to the appropri ate early intervention or early childhood programs within the community. Can you explain that process to me, although some of it may be redundant? If theres an issue where weve discovered th at a kid needs to be referred, we write the referral that day and then bring it to the front desk, and the front desk, based on their insurance would actually direct them to the place to go. Most of the time they would give the parents a phone number to call and make the appointment. And we actually fax the referral to that place.

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172 Appendix G (Continued) I usually tell the families, if theyre child is a school aged-child, that I know that different schools have different waiting li sts. So I would say, if a child needs IQ testing or psychological testing, I usually write it on a prescription. So its not a referral form. But, they can take it to the school and have them try to schedule the child. If the childs really delayed and needs help immediately, I wo uld say that if they [parent] find out that its going to be more than a month or two, just come back because we might have other community resources or well send you for one time to [doctor] and then the school can pick up later. So sometimes its empowering the family to go to the school because its an entitlementthe child is entitled to it. Bu t if its going to be five months before your school tests him, we can maybe help you ca ll the school. Sometimes weve done that where the social worker follows up with the sc hool and asks if the child can be moved up a little bit. But if we cant go anywhere, I would say come back and dont wait the five months because if we dont see you until later yo ure child will need more help. We try to say if it is beyond a certain amount of tim e that well give the family, usually I tell them, six to eight weeks which is a reasonable time. If its more than that I would say to come back and we could look at other resources. So youre saying from the moment you notice something is not quite right, a referral is made and you guys would even call and try to expedite the process? Yes, we try to expedite the process. Ok.

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173 Appendix G (Continued) And depending on the urgency of it, absolutely. De finitely, like if we run into behavioral problems. For example, we had a kid last week who, I think he was diagnosed with ADHD, but also he started having violent behavior kicking the te acher, kicking the mom, people were scared of him at school and he was a little kidseven years old. And mom called so many times, I mean like, communication with mom everyday. Because we would give her like, try this an d shed call back a nd say she called the psychologists number and the psychiatrists num ber that we gave her and they cant see him. The earliest they can see him is in a month and she cant really do that. So we had the social worker call for her. So definite ly, depending on the urgency, we try to expedite the process. Ok. You also indicated that you are able to determine the cause of delays or consult with the appropriate healthcare profession al or another consultant to help you determine that. In general, what do you do to determine the cause of delays? Or, since weve talked about that twice already [laughing], how do you determine when you need to consult with another health care professional or another person? Sure, I think for the most part, as long as I dont think the delay is something coming because of prematurity or being a normal type ofwell, usually a delay is not normal but if the child is otherwise normal and has been gaining milestones, but for one reason or another theyre a littl e bit behind but actually making he adway and I found a reason like maybe mom was not paying attent ion to him or he is with the babysitter and hes left oftentimes laying down do he doesnt really get enough motor stimulation or something to fix, then I might not consult initially with someone. I might try some of the

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174 Appendix G (Continued) suggestions that I talked about like giving her handouts or examples of some things to do. Now, if she tried that and it didnt work, or the child ha s other, maybe neurological problems like the physical exam is abnormal, the kids not cognitively appropriate, it looks like he may be a little re tarded or looks like the chil d has some syndrome, all of those we definitely have referred most of th e time. I even would refer to development like [doctor] for more of the normal stuff. But when it becomes abnormal, we require more than just [doctor]. Like maybe neurol ogy or genetics or other specialists to be involved. So, sometimes mostly I guess were go ing back to how severe the delay is to determine going to a specialist and whether there are any associat ed abnormalities that could be contributing to the delay. So the de lay is there but is ev erything else normal or are there other neurological problems genetics, or dysmorphic problems? So, in these situations have you found yoursel f consulting with these people or just referring on so that they can now take the steps to manage? Most of the time we refer so we can allow them to manage at the same time. But, we are still their primary, so most of these consultant s we refer to keep us informed by sending us copies of the visit. Some of them especially in the case of neurological problems, they need more than a one time visit and most of the time it may not be fixed. They may be started on some seizure medication or some thing. For those, we usually want the neurologist to keep monitoring, or the psychiat rist, especially if medication is involved. Speaking of consulting with others, have you ever consulted with individuals within the school system on the behalf of a child? If so, with who and how has this been

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175 Appendix G (Continued) done? Yeah, the only thing I can thi nk of is more for ADHD or more for, if were trying to advocate for a child to get tested through the sc hool system for a disability more than like developmental delays. Its more for behavior or stuff like that. If we think that maybe there are some modi fications that the school or teacher could do, or sometimes we get a note from the teacher that says that this kid needs to be tested or whatever. So we call back to say, What do you mean, give us an example because sometimes some modifications for some AD HD kids, like putting them in front of the classroom to keep their attention, you know, things like that we may request that the teacher do. The other thing, for testing, if the child needs to be tested and the delay is long, sometimes I might get the social worker our social worker is really good. He even goes to the school and a c ouple of times he even stays in the class to see whatlike if it was disruptive behaviorhe would watc h what happens to help the family and teachers. So, youre saying the social worker woul d even go to the school or you may sometimes get a call from a teacher talking about certain issues The teacher would send a note with the parent. Are there any other people in the school sy stem that youve had any experience with regarding a student? No. Ok. You have access to a social worker, do you have access to other professionals

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176 Appendix G (Continued) here at your clinic? No, I wish we had a nutritionist, but we dont. We have a social worker in the same building. CMS is here so some of the case wo rkers for some of the children with special needs and some of the children with chronic diseases who are actually CMS patients, usually some of the guys upstairs are actually the caseworkers. So, we request their help sometimes for assistance with their patients. I understand. We have a couple more. You indicated that youve been able to maintain relationships with community ba sed resources and coordinate with them through the medical home. Give me some f eedback on how youve been able to do this. I think one is through our social worker goi ng to the school and a dvocating for testing a child or providing therapy. The other thing, I think of Early Step s as the community resource that we use a lot because, hopefully we can pick those patients up before theyre three years old. Hopefully we dont miss th e boat on them and most of those kids actually get referred first through Early Step s. Thats mostly our connection to community resources. I guess the other one that we use sometimes isoccasionally we have behavioral problems other than ADHD. Or, it could be ADHD confounded with something else. You know, conduct or oppositional defiant, or a ggressive behavior. We might establish that there might be based on the social hist ory, maybe lets say ther e was a divorce in the family or other stressors that maybe the kid and the family might benefit from therapy. So we send them to some of the mental health agencies in the community. Like that kid

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177 Appendix G (Continued) whose mom called, we had original ly given her the number to the Crisis Center so if she was really in a bind. The other thing that we use sometimes dependi ng on the insurance, sometimes we use some of the USF mental health if they are on their plan. We have a lot of our patients on Medicaid so we are forced to send them to certain places rather than others. Ok. You also indicated that you have been able to increase parents awareness of developmental disabilities and delays a nd resources for intervention. We might have touched on it a little bit but tell me how youve increased their awareness. When we find a disability in a child, we ta lk to them about the different options and therapies. In cases of ADHD, we give them a lot of handouts on behavioral management and information on books for parents to read about ADHD, like a list of books and ADHD websites. We also talk about, like if a child turns out to have certain developmental problems because of a syndrome. For example, Downs Syndrome, wehopefully not just usand maybe the genetics people would talk to them more about some resources in the community to help them understand more about it. So its really more through verbal education or tangible things like handouts or websites. You also indicated that youve been able to assist families by interpreting reports or feedback from other practi tioners. Lets say you get a report fromor your patient brings in a report from the neurologist or someone. How do you go about handling that situation?

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178 Appendix G (Continued) We go over it with them, like especially when the testing happens in the school and we get back the report with all th e scores like the verbal score, assessment score, and usually there is an impression and usually they want to know what it means. So, we go over it with them. Same thing like I said with ADHD. When we give them the Vanderbilt, usually we dont give them any medication the first time. We say we need to evaluate your child and get the feedback from the te acher and parent so bring those backso when we score them we go over it with th em. We say, based on those scores, your child does not meet the criteria for ADHD. Yes, pr obably he or she is disruptive in school but lets find out why. Otherwise, send him to the psychologist. Maybe there are IQ problems. So, basically by looking at them again we would set another appointment to go over those. But thats if th ey bring the report themselves. Now, sometimes the report will come to us and the child is not scheduled for a visit. Usually those reports come to the nurse, the nurses pull the file chart, a nd any outside communication for the residents and doctors in the acute clinic. They go thr ough them and have to sign off on it. But, it does not need follow upit just gets filed. Th e next time the child comes, whoever sees them will review the chart. If the next appoi ntment is next week, then the report will be left alone and filed and the person may rece ive a note to review the report. Or, its explained to them over the phone that they will need to come in to discuss this. If theres something in the report that you dont understand, what do you do?

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179 Appendix G (Continued) Sometimes we call the person who sent the repor t. Sometimes we might call the family to see if they are scheduled to see the neurolog ist again. Then, wed ask them to get the information from the neurologist because if th ey have questions, we cant answer them anyway. We encourage them to discuss it wi th them and encourage the family to write questions down before going to the next appointment. Ok. This is the last question I have for you. Im going to read through a list of barriers that are in the literature. First, Im going to start with the things you stated that you and your pr actice have been able to overcome. Then, Im going to ask you why you think some of the other barriers still exist. You indicated that youve been able to score validated screening tools so this is not a barrier for you. Tell me a li ttle about why this is not a barrier. We talked about the residency students being apart of the process, so they helped out a lot. Right. Is there anything else that has helped this not become a barrier? We get better at it as we do it. Like I said, maybe weve figured out a way in the processwhen to do it in the visitfinding a good time so its not really an additional time. Putting it somewhere in the visit where th ere is dead time or downtime to really fill it. I think what also helps is having the residents, other than the fact that they already know how to do it, it is also a time while th e patients are waiting for the nurse, etc., so residents can do that stuff. So, theres good time management. The other one that you said is not a barrier is referring families to community

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180 Appendix G (Continued) resources for intervention. We talked about the social worker bein g very key in this process along with Early Steps. Yes, that we have a connection with the univers ity and Early Steps and [doctor] is really part of our USF position so it makes it a little easier. The other four that you didnt mention, I want to get your feedback on why they are still an issue. The firs t one is providing reimbursement for preventive services why is this a barrier? Because sometimes if a child doesnt ha ve the right funding and even if youve established that this is the right place to go for therapy, if that place doesnt get reimbursed for what they do, theyre not going to take that child. And the parent might not want to pay out of pocket. It might be very expensive for them to pay out of pocket so basically they end up not goi ng. Or, it could be a barrier to us because we figure that we dont want the parents to end up with the bill and theres no other place to send them so were stuck. Just because insurance X doesnt have that therapy in place on their plan and its the only therapy place available in ou t area, lets say, it becomes a barrier to providing them preventive service. Sometimes it becomes very hard and I think th ats why our social worker helps because it becomes very time consuming to try to search and findits like where do you begin to findyou have to start calling every single place and ask if they take Medicaid. Sometimes I try to put a lit tle bit of the res ponsibility on the in surance company by having the family tell the insurance company that their doctor said they need to see this

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181 Appendix G (Continued) specialistgive me a number. Now, if th ey say theres no body on the plan, then it becomes an issue definitely a big barrier. B ecause either you have to try to appeal to the insurance company which really becomes more time consuming for everybody and it might not work. So, I think reimbursement is a big thing. The other thing that ties into reimbursement is if you dont have better resources in the community and if you know how to do it yourself, its going to add 20 minutes to your visit and youre not going to get reimbursed for it regardle ss. So, even if you schedule this child and say come tomorrow because I have this waiting room full of kids to see and I need another 20 minutes to do an assessment, youre not going to get paid for it. The insurance company wont pay for it because its preventive service or they decide they wont pay for it. So, thats another barrier Some peopleits not the case in our situation, because we have Early Stepsbut in some communities some people would not want to do it at all. I understand. Another one that you indi cated as a barrier is administering validated screening tools. Tell me what you re interpretation of that was and why it is a barrier. What I meant is more for us to be able to do it ourselves rather than referring. I dont have the expertise to administer, other than the Vanderbilt and a few other ones, other sophisticated tools because its time consuming b ecause we need to be trained. Its almost like me doing someone elses job. So, its still a barrier becaus e educationbecause it could be something general pediatricians shou ld be able to do but if youre not in

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182 Appendix G (Continued) residency training, its not a standa rd that all residents do it. So, if its not required then you dont do it. Now you could learn it on your own but that me ans youd have to invest time to go to a course and invest time in your practice t ooand are you going to get reimbursed? Some places may not reimburse you for administering a psychological test because youre not a psychologist. They only allow you certain codes so you cant bill for something even if youre trained to do it. So, I think if you can do some of the tests yourself, it might be faster and more convenient to the family because you could do it right there. You dont have to wait twelve weeks to get seen by so meone. But training, reimbursement and time can be a problem. Not every community has an Early Steps. Maybe in some communities, the pediatrician has to act as a psychologist, ps ychiatrist, this and that. But how much training they get in residency, when they get out I dont think theyre ready to do sophisticat ed tests. They could do the common ones. They might inte rpret some tests that somebody has done, but they might not be able to administer them. And then, even if they know how or they train themselves how, they might not get the time or reimbursement to do it. We have two more barriers to discuss. On e is assigning office staff to assist with developmental surveillance. Tell me about why this is a barrier. Some private practices, the screening questions we have from the Denver, they actually, to save time for the physician, the nurse or somebody in the office while theyre checking the patient, they go through that list with the family when the child gets to the room. All

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183 Appendix G (Continued) the doctor has to say is You failed three out of fifteen, lets talk a bout those only. Or, the staff does it or the staff gives it as a quest ionnaire like what we do with the Ages and Stagesbut more like give it to everybody a nd not just certain age groupsor these Denver questions. But they have to do it in an understandable language and then they fill it and then the staff can make sure it makes it to the chart. When the child gets to see the doctor, then the chart makes it to the doctor and the doctor scans it by looking. Its a barrier in our setting because, one, we have so many physicians and residents and parents already wait so long betw een the registration and theyre waiting to be checked in and the staff is busy doing too many things and to add one more thing for them to do is probably still a barrier for us. But for othe rs I know, its do-able if you have a small practice with two nurses and three doctors or something. So you could probably train the nurse to ask those questions. Ok. And the last barrier is financing the cost of standardized instruments. Lets talk about the instruments you already use, since you spoke abou t the more in-depth instruments that you dont use. For example, the Connerswe couldnt use th e Conners because we had to order them from the company and pay for them and whose going to pay for them? I mean, we might get reimbursed for the screening visit but th eyre more expensive. We collect for Medicaid in a 10-15 minute visit anyway. So thats why we ended up going with the Vanderbilt and we created our own sheets based on the Vanderbilt. So I guess we overcame it in some way and maybe some other ways like, I think the Ages and Stages

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184 Appendix G (Continued) questionnaires I think we order them, but I think initially [doctor] paid for the questionnaires from her grant for the study. Bu t I can see it as a ba rrier especially if somebody doesnt know the Vanderbilt and they were only trained on the Conners like we were and theyre in a practice and pa ying for that might be costly. Now the sophisticated ones, Im sure a lot of them are with a fee. So, I can see that, being other than the fact that people, even if they know, thats not what they do everyday, some reimbursement might not come to them because theyre not the specialist. Its like now, an example Ill give is we just started doi ng varnishes because the AAP wanted us to do oral health as a primary care physician. In No rth Carolina and some other states, maybe there are 30 states in the country, Medicaid actually reimburses physicians for a CPT code thats a D code for Dentist to apply varnish. Before Medicaid wouldnt do it and th eres been some lobbying from the dental society to allow pediatricians to submit those codes and get reimbursed and Medicaid wont do it just because youre not the specialist. Even t hough the fluoride varnish application is like painting teeth, in some communities and sc hools, school nurses could do it. You dont even need a physician to do it. So, I could s ee even on the flip side even if somebody in an office who knows how to administer some of those sophisticated tests and is willing to pay for that if they cant get reimbursed, they might not do it just because they might not get reimbursed because its a sophisticated te st and youre not a licensed mental health professional to do it. Ok. That is very informative. Are there any other barriers that youve thought of

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185 Appendix G (Continued) that I might have not talked about that youve noticed on a regular basis which interfere with your service to young ch ildren with developmental problems? No, I think the big ones you hit on. I think trai ning is a big thing and I really think in pediatrics, a lot of what pediat ricians do is development. In the whole three years, theres only one month required for development so technically youre supposed to keep doing what you learn that month the rest of your three years. But I think th at its nice to have the community support. We have the luxury of an Early Steps but it has the drawback that we can be dependent on or we can refer so it makes me think are we over-referring things that maybe we should be able to take care of? Are we maybe not feeling the need to learn new things because somebody else coul d learn it and do it? So Id say training is a big thing and time. A lot of those devel opmental issues take time and now we do like an ADHD visitjust to be ADHD. You can discuss it as part of any other visit and now its like when you see ADHD, it needs a visit by itself and I think time is a factor. Ok. That is the end of the interview. I really appreciate your time.

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186 Appendix G (Continued) Participant Number: 2 Interview Date: 3/22/07 Key: Interviewers responses in bold, pediatrician responses in normal typeset. We can now begin with the first question. Ok. Im going to be referring to the online survey that you filled out throughout this interview. The first question that I want to ask you isyou indicated on the onlin e survey that youve been able to keep up-to-date about developmental issues, risk factors, screening techniques, community resources, etc. If we could go on e by one, how have you been able to keep up-to-date with child development issues? Usually through reading Pediatri cs or the developmental people will send us little brief summaries of whats going on with either the AAP recommendations orthats mostly it. Who are the developmental people? Primarily, [doctor] is one of the developmen tal pediatricians at USF and All Childrens, so shes been working with us mostly. So, shell frequently send us stuff. What kinds of material does she send? Usually its just email or summaries of the latest AAP recommendations. How do you receive information regarding risk factors, screening techniques, community resources, etc.? For the community resources, usually we find out more of those on our own. So we send them to either Child Find or through our cas e manager well send them for developmental

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187 Appendix G (Continued) screening. Thats mainly how we find out about those. The risk factors usually through the AAP as welland I for got what the other one was The other one was screening techniques. Same thing. Usually through the AAP. And when you say through the AAP, what do you mean? The American Association of Pediatrics sometimes theyll have articles through Pediatrics. And as far as community resources, are you saying that Child Fi nd is the place that will tell you about resources? Usually they do or Early Steps. We usually se nd our kids there and th en they can help us direct the kids to the resources. Theyre two different things because Early Steps is up to three and Child Find is school-aged kids. Another question you indicated was that youve acquired the skills needed to administer and interpret valid and reliable developmental screeners. First, what kind of developmental screeners do you use? The primary one we use, well, weve taken the Denver which weve been trained on and weve abstracted some of the major questions from it and thats what we have on our normal well child visit checks that we show residentsso weve learned how to use the Denverand the Ages and Stages questionnaire Those are the two main ones we use for screening. How have you and your staff acquired the sk ills for administering and interpreting

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188 Appendix G (Continued) these two particular screeners? The Denver, I was taught in residency how to do it. The ASQ was actually, [doctor] taught us how to use itand lectures also. So you said [doctor] taught you. How did that come about? She was actually doing a research study bringing the ASQ into different clinics to see if we could improve the amount of screening be ing done by the residents. So, she taught the residents and us through lectures, how to ad minister the ASQ and how to score it. Its pretty self explanatory. Basically you can hand it to the parent. Its about five pages of can your child do this, this, or this. You check it off, you write the score in and then you put a little circle into the box and if they are in the white pa rt, theyre good. If theyre in the black part, they get referred. Its pretty self-explanatory. A lot of our daycares have used it. Like a daycare will send us an Ages and Stages that theyve done on our kids and I know theyre not developmental pediatricians either. Its pretty straightforward. For all users? Yes. How have you increased the time needed to administer and interpret these screeners at your site? I dont think weve increased the time, but by ha nding it to the parents, they usually fill it out before they get to the room while they are waiting for the doctor. So, that gives usat least these things are done and th en scoring for ASQ is pretty quick. So you give the ASQ to the parent?

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189 Appendix G (Continued) Yes, the staff up front, when they first check in, if theyre at different ages they will have the Ages and Stages Questionnaire and hand it to them and say please fill this out while youre waiting for the doctor. And the interpretation happens when? Usually if the resident sees it, theyll give it to us and well go over it before we go back into the room for me to supervise them or while Im supervising them, Ill notice it, grab it and go through it very quickly beca use its very quick to score. And the Denver, is that more for develo pmental surveillance during well child checks? Yes. As I said, weve just abstracted thes e right onto the well-ch ild visits so theres probably 60 questions that the re sidents ask the parents as pa rt of the well child checks. If theres a form, would I be able to have a copy of it? Well, theyre at different ages. Do you need one of each or just a sample? Just a sample of whatever you can give. Thats not a problem. I appreciate that. Ok, you indicated on the survey that youve been able to develop a strategy for providing periodic screening in the context of of fice-based primary care. We just touched on that a little bit so I will move on to the next question. Another one is that you indicated that you refer children with developmental delays in a timely fashion to the appropriate ea rly intervention/early childhood programs within the community. Can you explain to me the process that you use, from the

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190 Appendix G (Continued) moment the child is in your office to, even tually going to a program? What are the constants that are involv ed in that process? The main thing that we do is that we run an order for our case manager to send the child either to Early Steps or Child Find or FDLR S depending on how old they are. Or, if we think it looks to be just a communication prob lem, well refer them directly to a speech therapist and an audiologist. Or, if it looks like problem solving, well send them to an occupational or physical therapis t. So we write an order for our case manager, who then based on their insurance, sends them to the appropriate location. So is the case manager the person used to help? Correct. She identifies the resources for us that their insurance pa ys for and if it looks more global, well send them to Early Steps. Do you ever make any suggestions to patients about certain community resources, and if so, how do you have that knowled ge? For example, what if youre not referring to Early Steps? Well I am a little biased in that my child ha d some developmental delays and he had been taken care of at Achieve Tampa Bay and ther es also Easter Seals next door, and UCP near Tampa General. So its some of the th ree local ones that Im pretty well aware of their resources and two of them are local to here. So I figure if families can get here, they can probably get down the street. So does the case manager help with that? Exactly.

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191 Appendix G (Continued) Exactly what does the case manager do or what is their training? Are there any special degrees that they need to have? I dont know the answer to that. Ok. I was wondering if he or she was a social worker or Shes not a social worker. Shes like a well-tr ained office assistant bu t better trained than that. So, shell take extra classes so she can manage other people doing it as well. Its mostly on the job training. We do have a soci al worker but shell do more if theres a mental health issue or housing or transporta tion or something much bigger than that. The more routine developmental screening stuff she doesnt usually get involved with. So typically the social worker is not involved in these processes. Not usually unless there is an additional compon ent like a mental health issue that weve tried going to mental health and were not ge tting anywhere, then she may get involved. Some of the kids may have comorbidity. Its like theyll have bipolar and developmentaleven with ADHD we see so mu ch of it and were pretty good at getting the resources for them. But sometimes if th eyre still having difficulties then shell get involved. I see. You also indicated that youre able to determine the cause of delays or consult with the appropriate healthcare profession al or another professional, whoever they may be, for determination. In general, wh at do you do to determine the cause of delays and then how do you know if you need to consult with someone else?

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192 Appendix G (Continued Some of them are relatively straightforward a nd others, if theyre pr emature, theyre at a much higher risk for developmental delay. If they have a chromosomal abnormality, like Downs Syndrome or another more obvious where you can look at them and go Oh yeah, theyve got X chromosomal problem, etc. then it makes it pretty easy to determine their cause. If they dont have an obvious cause sometimes we do some bloodwork looking for a chromosome abnormality. We may send them to genetics to look for a chromosomal problem. If theres no cause and they look like a h ealthy, normal child but you can tell theres a developmental delay anyway, then we may send them to a developmental pediatrician like [doctor] to try and figure out better whats causing their delays. Sometimes we dont know a true sourcetheres no caus e that we know. But theyre still delayed so they still need services either way. How do you go about consulting with other people? Usually weve got an order for developmental clinic or Child Find or Early Steps, or something like that. The only other way well sometimes do it is if theyre a little bit older, well write an order for the school to do testing. But, Im sure for the people who do that, theres tons of kids and it takes a long time and the squeaky parent gets the testing first. So, theres a lo t of our kids who just kind of fall through the cracks because the parents are unable to do it for whatever re ason. The school is too overwhelmed so its six months or later.

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193 Appendix G (Continued) Have you ever received any calls from an yone in the school system any staff member on the behalf of children or vice versa? Pretty rarely in either direction. On ce in a while but its pretty rare. Who are those professionals that youve had contact with? The teachers we get a little more communicati on with because of th e Conners scales for ADHD. So, sometimes well get letters from teachers. Thats not that uncommon. Maybe once or twice a month we ll get a letter or note from the teacher saying Help. Thats probably the main people that we get in touch withand Im tryi ng to think if Ive ever heard from a school psyc hologistthats rare. Probably not. Maybe a social worker once, but again thats really rare. Ok. You indicated that youve been able to maintain relationships with communitybased resources and coordinate care with them through the medical home. Again, it kind of touches on what we were talking ab out before basically you have that case manager that helps connect people with resource. Being on the Board of Directors for [organiz ation], I know the people there. Sometimes Ive called them as well and found kids that we need help with and see if we can get them in sooner or see what else we can do for them Those are the primary mechanisms that I use. The next one that you indicated is that youve been able to increase parents awareness of developmental disabilities a nd resources for intervention. How have you been able to do that?

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194 Appendix G (Continued) I think the ASQ has helped a lot of our families because they go through and say, Oh, my kid should be able to do this or that a nd they may not have realized it before when we asked them the developmental questions, just as part of the scre ening. They say, Oh, I didnt know my kid should be able to do that or hes already doing that. How does that conversation proceed? Dependssometimes itll turn into Oh nohe cant do any of those things and they didnt realize that he was supposed to be able to do it. So well sa y hes delayed and try to get him some resources like therapy to try and help with that. Other times theyll say Oh no hes perfectly fine, leave him alone, I dont want any therapy, hes fine. And sometimes it will take several visits of Hes still behind to say Yes, this is a problem and I am willing to address it. Other times itll be that the parent will say that theyre behind but we as general pediat ricians dont see it ourselves so well have them screened. Or, they dont tell us anything about it but then they go to get th em screened on their own. Then Ill get a therapy letter saying that the kid is getting services when none of this came up at our exam and I just saw him a month ago. So sometimes I dont even know where these meetings are coming from. But the daycares initiating them or the parent claims we said something during the office visit that we may not have noted. Sometimes Im never sure where that happens but as much as possible we try to work with the families and say, Yes, they do seem to be delayed or theyre premature or They do seem at risk for delay so even though theyre doing great now, lets send them for a screening so theyre hooked up in case, as they get older, some things show up that

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195 Appendix G (Continued) werent showing up now. Are there any other ways that you inform them about developmental delays and what they need to do to help them? The other, not as direct as screening, we re involved with the Reach Out and Read program here so we give children six m onths to five years old developmentally appropriate books and we encourag e parents to read with the child. As were doing that we say this will help the child read better. Early literacy increases their chance of doing well at school. So, we bring up that component of it as we ll, a little bit less directly. Ok. Another one that you indicated is that youve been able to assist families with interpreting reports and feedback from ot her practitioners or other professionals. How does this happen? Every so often the family will bring in a report from the psychologist or therapist and theyll say Here. So, well go through it and say they seem to be finding this and what they really want is for your child to get ther apy or to see an ENT doc tor or whatever it is to help the child. One item that you did not indicate was that you present screening results to families using a culturally sensitive and family cen tered approach. What was your thinking behind not indicating this? I wasnt quite sure what you meant to be honest. I can provide an example for you. That would be helpful. The patient population here is very mixed. We have 50% African

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196 Appendix G (Continued) American, 30% Latino, and 10% White so we have the gamut of some well educated and mostly not well educated. So, I feel like Im working with that gr oup anyway but I dont feel like I tailor it for each population except for translation services maybe Ok, here are a couple examples. What if you run into a family whose native language is not English or what if you run into a family who has been poorly educated and has difficulty understanding ce rtain concepts? How do you help them understand? How do you help that fa mily that doesnt speak English? We do have a lot of bilingual families and we have Spanish-speaking staff who translate for us. We have a Creole-speaking person but the other languages we have more trouble with. So if theyre bilingual and were not sure, that usually comes up more with the communication issues. Theyre going to be bi lingual later and theref ore theyre delayed and theres some controversy about that so we try to get them to a bilingual speech therapist or someone who can a ssess at least in th eir native language are they ok or not. For the less educated, we try to explain it in as basic language as we can. Sometimes weve tried multiple times and we just cant get through. Sometimes I sort of force the issue and say, Why dont we just send them to the therapist because I may be wrong. They may be perfectly fine and maybe they can test them more and as the parents watch the testing then they may say Oh, theyre not doing what I thought they could do. Sometimes it gets to that level and sometime s I cant get anywhere and the family just refuses and I cant make them test a child at this age unless I call DCF which is what I dont like to do. So, usually I tell the family next time if theyre still delayed that he still

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197 Appendix G (Continued) hasnt done these things that we wanted hi m to do, Can we get him tested please. So, are you saying that you try to break th e information down, verbally, as much as possible? Right and during our exam if the childs not doing it well show them what we want the child to do. Well be like, O h look, he should be sitting. We try to sit him and hell flop over and we then say, Hes old enough, he should be able to do thiswe need to have him tested to make sure he knows how to do what hes supposed to do. Or, Hes two and hes still not speaking and other two year olds are doing th is. I cant understand anything he says and you cant either. So, sometimes it involves showing them what their child is not doing. How about if theres a parent who cant read? Does that ever interfere? Probably, we dont really ask about literacy skills of our parents as much as we should, so that is probably some of the cause. The last section that I wanted to talk about with you is the list of barriers. I will first talk to you about the ones that you felt were not barriers and have you explain to me why they are not barriersadministering validated screening toolsthis is not a barrier for you why? Because we have part of the Denver on all we ll-child visits and we give the ASQ to families at certain visits. So, hopefully wev e addressed getting it done. Residents also assist with asking questions at well-child visits. Scoring the validated screening tools? Why is this not a barrier?

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198 Appendix G (Continued) The ASQ is pretty easy to do and the Denver we extrapolated, just the small portions. We get our answers pretty quickly. Referring families to community re sources, why is this not a barrier? We have a case manager who is able to get a lot of the resources taken care of for our families, but its not perfect. Some fall th rough the cracks. We send them letters and they dont get them. They changed their phone number and didnt tell us. So its kind of a mixed barrier but we tend to address it as best as we can. Assigning office staff to assist with de velopmental surveillancewe talked about that a bit already and why thats not a barrier. And financing the cost of standardized instruments like the ASQ, which is pretty much the only one you use [Doctor] has a grant that shes doing and she will bring us ASQs. Its not a very expensive test to do. The one that you left off was attaining reim bursement for preventive service. Why is or why does this continue to be a barrier? Insurance companies will sometimes limit the number if tests or theyll limit the number of providers that we can refer our kids to a nd if theyre too far away for our families and they cant get there, they may only pay for ten speech therapy visits and the kid needs a lot more than that and we cant get paid for. So, then were trying to either send them to some other community resource to try to hopefully get it paid for or get it for free or get it done through the school where it doesnt cost anything, but getting the testing can be

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199 Appendix G (Continued) quite a barrier. How successful are you guys when you r un into these barriers posed by the insurance companies and youve had to find other methods Thankfully for the little ones, Early Steps is available and the older kids there have Child Find or FDLRS. So we usually get them star ted somewhere but in the school system they often dont have enough therapists for the kids so we have kids supposed to be getting speech therapy two times per week who only get it once per week or maybe not at all because there isnt anybody. Were not as suc cessful as wed like to be. We know that there are kids who are not getti ng the services that they need. Are there any other barriers that we have no t discussed...barriers that you run into on a regular basis which disrupt the whole process of screening, identification, and referring kids? Referring really is a pain because a lot of our families are from low socio-economic status and sometimes theyll make up addre sses, phone numbers, or their cell phone will be good for an hour after their visit then it s gone. So, youre tryi ng to contact them again and send them to the speech therapist or heres your appointment for this and they never get the letter. They dont understand it, they ignore it, or tran sportation is broken down so they cant get to the appointment They have two other kids that had issues at the same time so that kid fell to the wayside. So, thats the most frustrating part. Not only referring, but getting them to the actual place on a consistent basis. Its often very difficult for our families. I have one kid, its been six months now that we had referred him to the speech therapist

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200 Appendix G (Continued) and audiologist four different times and the mo ther said shes never gotten letters, never gotten phone calls, we refer again and the same thing again. This kid is behind. Hes been behind six months! I dont know what else I can do except try to get the case manager and her hooked up at the same time. Hopefully they have the same number for 45 minutes. Unfortunately, this issue is very real and thats probably the most frustrating thing. Thank you for your time. This int erview has been very informative.

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201 Appendix G (Continued) Participant Number: 3 Interview Date: 3/29/07 Key: Interviewers responses in bold, pediatrician responses in normal typeset. You indicated on the online survey that you ve been able to ke ep up-to-date about developmental issues, risk factors, screenin g techniques, and community resources. First, lets talk about child development issues. Tell me how youve been able to keep up-to-date and increase your knowledge in this area. Well, I read a lot. I read th e PREP which is a Pediatric Educational Program from the AAP. PREP stands for Pediat rics in Review. Also, gra nd rounds at All Childrens and, Im personal friends with a coupl e specialists in town and I do consult with them a lot. How about child risk factors? Are there any additional ways you stay up-to-date? Well, child risk factorsI am a mother of th ree boys, so my personal experience is one. I not only read medical magazines, but sometim es you learn even more from the lay press than in medical magazines because some me dical people are in Mecca and they are totally disconnected from real ity. I haveI did not go to pr ivate practice straight from residency. I worked for the Public Health fo r four years in Liberty City which is a very poor African American area of Miami where most of the 1980s riots occurred. So, I worked there for four years in that community so I learned a lot there. After that, I became an assistant professor of Pediatrics in Loma Linda University in California. Part of my job there, not only was teaching and doi ng private practice, but also I was part of

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202 Appendix G (Continued the Child Protective Team, a team that spec ializes in diagnosing child abuse I was specifically involved in the sexual abuse aspect. During those years, I had to read about the risk factors and the peaks when children get abused the most. I had to testify in court all the time. So, I needed to know those. Th en I moved here and I decided just to go to private practice because that job was too stressful. So, would you say that your experience is atypical, considering youve worked in those different environments? Yes, very atypical from the regular pediatrici an who just went straight from residency into private practice like this. Its just completely different. This is a practice that covers middle class to high middle class and very educ ated people. Sometimes they read more than you do. Theyre up-to-date on everything. The other population I used to deal with was very poor, uneducated, immigrantsI sp eak Spanish so I was working with the Spanish community a lot. They have a lot of very strange ways of approaching health issues. Can you elaborate on that? Well, depending on cultures, for example in the Mexicans communities, you may see a child with some dark lines here [pointing to the abdominal area)] and what they do is they pass a coin because they believe th at will keep evil spirits away. Somebody may confuse that with abuse and its not abuse. Its just things they do. The Haitians have voodoo and you had to make sure they are not giving one of their mixtures to their children. So, right now Im in a practice where most people have the same background as

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203 Appendix G (Continued) I have and they treat their ki d the same way I treat my kids So, its easier and in those other communities, you had to keep up with the culture that you were dealing with and with the new wave of immigrant that was coming because that was my job and I needed to know what they were doing. So in keeping up with these cultural differences, you were It was just by talking to people and saying, Why do you do that. For example, we have a lot of Indians from India and I ask them why they put the cord around the babys belly and why do they put the dot on their forehead and what does this mean and things like that. I just ask because I want to know why they do that. So, it sounds like youre ta king an interest in them. Yeah, I want to know why they do that. Ok. Another component involved your keeping up with screening techniques. Yes, let me show you what I use. This is Pediatric News, a newspaper published by the American Academy of Pediatrics that keeps me updated with pediatric news. Sometimes I read articles that are very helpful and I sa ve them. For example, th is article from last year discussed how to screen specifically fo r Autism and depression and directed us to a web site (brightfuture.org) which these form s could be downloaded for free and used in the practice. I immediately implemented thos e forms and started using day to day. I downloaded the M-CHAT ( a screening tool fo r the detection of early autism), BECK (a screening tool for depression) and this PEDIATRIC INTAKE FORM that I found

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204 Appendix G (Continued) extremely helpful during my initial intake of a patient with behavioral or academic problems. When did you start using these? I read about this about a mont h or two ago. I dont use it on every single patient but I use it on some patients for which I am concerned. You know when you have been a pediatrician for a long time(Ive been a pedi atrician for almost twenty two years) you immediately perceive that theres something wrong with this child Then you have to confirm your suspicions. I screen the patients by using these forms. Also, everybody with behavioral problems in this office, usually makes the appointment with me. I also use the Vanderbilt ADHD questionnaire to screen for ADHD. It does have very simple questions that not only screen for possibl e ADHD, but it also screens for anxiety and oppositional defiant syndromeIts a scale and very easy to score. [Looking at both protocols] Is it both English and Spanish? Yes, but we dont use the Spanish version because this is mostly an Anglo practice. The part thats in Spanish is for resources. Sometim es you give this to parents to explain what needs to be done involving the teacher and at home. The AAP developed this so pediatricians could get a little be tter with the mental health si tuation that we have. Its very difficult to send a kid to do a screen. Insurance doesnt pay for it and parents dont like to pay for itand then youre stuck. Wh at do you do with this child who is not performing in school or hes not talking? By using these tools, you can say, Ok. I have a problem and then you have a better indication of what to do.

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205 Appendix G (Continued) The parents usually come and sa y their child is not doing well in school. They make an appointment to discuss the academic underachieve ment. Then I hear what they have to say and sometimes its not ADHD. I have a questionnaire I developed that screens for environment problems. I specifically want to know if the child goes to sleep on time, if the child has a structured environment, who liv es in the house, if theres violence in the house or are we dealing with a developmenta l issue that is impeding this childs performance. Then I skim through it. Im looking for a medical reason that would impair the child from performing. Once I determine there is not an obvious medical or environmental reason for the childs difficulties I hand out the Vanderbilt Questionna ires. You give a questionnaire to the parent and I tell parents to give the teachers a stamped enve lope addressed to me so the teacher can be open about whats going on with the child. Then I score them. I am not a behavioral pediatrician or a psychiatrist. I do not pres cribe antidepressants or antianxiety medication. But, I do prescribe fo r ADHD. I dont have the ability to do psychotherapy. Im not a psychologist so I dont want to get into that. I do screen for these mental issues and direct the parents to the appropriate specialist. Sometimes I may find that the child is very depressed and they do not have ADHD. Depression is what needs to be treated so that the child pe rforms in school. The other day during an Academic Underperformance evaluation I admi nistered the BECK screen for depression. A score of six indicated a child may be depr essed. My patient scored twelve. So, I informed the parents right away that their chil d is very depressed. I st ressed the fact that

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206 Appendix G (Continued) this is not a transient, teenage thing and that the child needed immediate psychological and psychiatric evaluation. Had I not used this form, the child would not have gotten the help he so desperately needed. Many patients are underperformi ng due to substance abuse. If I am evaluating a child with new onset of symptoms (ie: academic difficulties) and the child has been diagnosed as ADHD by a Psychologist, I tell them I will not treat them unless they give me a drug screen thats negative. Im not going to give more pills for them to sell out there. So, if they want to get treated by me, they need a negative drug screenand Im not going to do it. Ill tell their parent s to do it on a Monday or Tuesday afternoon or after a vacation. I do have certain rules on how to proceed w ith ADHD therapy in this group of patient. How about the parents of younger children? Are you seeing similar concerns with ADHD? Well, younger children dont go to school. S o, theyre not having any problems with performance. Im very big on discipline a nd not everybody agrees with me So when I get a new baby, I tell the pa rent that, to avoid problemsbecause Im big in preventingI give them this big speech on how to, from day one, start structuring the house. The babys life needs to be structur ed. The baby needs to learn how to sleep. The baby needs to soothe himself. I talk to parents about the di fferent developmental stages and how children learn behavior. The fi rst five years is imprinting, the second five is mostly imitation, ad then co mes socialization. I am big on the imprinting part because they need to learn that no means no a nd yes means yes. Dont make a promise

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207 Appendix G (Continued) you cannot keep and dont make a threat you cannot follow through with. Be consistent and dont fight every single battle. When you do decide to fight you need to win. I tell them they need to do that before the age of three because after this age, it becomes more difficult. I am very big on that so, with th e early children I try prevention a lot. I tell them not to fight over eating habits and not to give the child too much power. Sometimes I give the speech and the parent decides that Im not the type of pediatrician they like. They go to one of my partners and they come back in about four or five years with a rotten child and they want me to fix it and its too late. But, I tell them this is what they can do. I follow many children from birth to young adulthood. My goal is to prevent them from getting in trouble and that the parent maintains an open channel of communication. That sounds like there are stages of parent training that you go through. Yes. I do a lot of parent training but thats because I like it. And with those young children, earlier you talked about some screening measures that you use, but these [pointing] apply to the younger ones too right? Thats the autism one. And also the intake fo rm thats for the environment. If I do the intake and I realize the mother had been abus ed or her boyfriend abuses her, of course this child is not going to do well in school. We have to fix the environment. I cant tell mom to kick the boyfriend out, but I can direct mother to orga nizations that may help her such as CASAS. Treating a child for ADHD without addressing the abuse problem will not help at all.

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208 Appendix G (Continued) What are the methods you use fo r developmental surveillance? Well, we haveI have to get a computer to show you. I do it this way because its easy for me to score it. I can score it ju st by looking at it. These are the Vanderbilt Questionnaire. These questions screen for Oppositional Defiantthese are for anxietyand this is the teachers. Theres a similar one for the parents and we also have a follow-up we use to monitor progress. Now for surveillance, we have a computeri zed system of charts and Im going to open my sons so I dont break HIPPA laws. If Im doing a physical exam and my son is a toddler, I would put male-infant. Appropriate developmental questions will pop out in the screen and then I choose, lets say, month old child. This child should be pulling to stand, be sitting up, standing for a co uple of seconds, starting to combineSo, I start asking if their child is doing this. If they say no, she or he doesnt, then I may say we have a problem and I woul d do a more thorough evaluation. Soif the child is eighteen months I will as k if he can walk backwards and can he run. He should say at least three words. Actua lly, this is a little bit too nice because by eighteen months they should be saying more th an three words. But, the minimum should be three words. Then I always have a pen to see if the child scribble s or eats it. Like at five years, before entering school, you know, I tell them Im going to play games with them or we jump and we write and I make them make a drawing of themselves because that brings a lot of information on how they hold the pen. They thi nk that theyre playing games and having fun but Im doing a thorough developmental evaluationIf the child

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209 Appendix G (Continued) refuses to play the games or if they do not hold the pen appropriately that may indicate red flags and I may referr them for further testing. I have sent a couple of kids to occupational therapy that would have fallen through the cracks have we not played the drawing games. So EMR helps a lot. How did using this computer come about? Because thats where the medical records are going. Electronically, we dont use chart records. So, tomorrow I have those [pointing] patients and when they come, I will see all their information. Regarding the form that you gave me, when and where are the parents filling them out? Here? At home? The teacher and parent evaluate for the Vande rbiltthey have to do it at home. The autism, depression, and family intake we do here. I keep them busy. Instead of waiting in a room theyre given some paperwork and they feel that they havent waited that long. By the time theyre done with that, I come in. Sometimes I send their child outthe reality is that you have to see X amount of patients an hour or else you dont make a living. So, I had to find some creative ways of being able to give them a little bit more time while still seeing patients. Sometimes I do use the forms for them to fill out. I see a couple more patients for ear ache, sore th roat, go back and read itok, now I need thisso the flow keeps going and Im still go ing back and forth to that room. Another item involved you keeping update d about community resources. How are you able to do this?

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210 Appendix G (Continued) That one is a little bit hard er. Usually, I learn about community programs through the mail. The actual community resources? Yes. The resources [looking around], I dont kn ow if I have anything here. I receive a lot of cards that we arewe have compiled a list of psychologists and mental health counselors that we like or that accept insuran ce. We had a nurse here whose child had severe psychiatric problems and she took spec ial interest in findi ng out resources that were available and that was her cup of teato do all this stuff. So we have that. I would say thats my weakest point. Its very hard to keep up with the community resources but unfortunately there are not too many good community resources to unless you have money. Thats the re ality of life. Unless you ha ve money, the resources are terrible. Mostly, I learn from experience or from my friends. I have friends whose kids have been in a lot of trouble and they send them to special programs. These parents inform back whether that program worked or whether this one was not good. Learning about programs that way works well. Some times the brochure tells you that all the services are available, but in reality it does not work like that. However if theres a weakness, especially for me, it is that I am not aware of all the community resources we have out there. Im just aware in general and if its an academic issu e, Ill have to direct them to go to school and ask them what is avai lable. One of the reasons I like to screen for autism is because I know there are a lot of programs for autistic children that can help. Ive seen major improvement of children who ar e autistic or borderline autistic if you ge

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211 Appendix G (Continued) them early and you intervene earl y, especially with their speech. And you said you refer to the schoolhave you ever worked with anyone in the school? We talked about the teachers a little. Well, they send me those forms and if they write downand sometimes its a big if I have timeif they write down please feel free to contact, sometimes I do. Thats especially if the childs not doing well. But, we do not have the time or the resources. I dont have anybody I can pay to call and see how they are doing in schooland I cannot charge for services like that. So I am limited financially. Now if they call me, I always return their call. Does anyone from the school reach out to you? Sometimes. Who? School psychologists. There was a particularly good school psychologist who used to call me to tell me that a medication was not working or that the child was having other problems. She was very good. She left that sc hool and I havent heard from the new one. In my fourteen years in practice, maybe two or three guidance counselors and school psychologists have reached out to me, but very few. Overall, was the outcome beneficial? Yes. Extremely beneficial because then I know the reality. Its one thing when the parents tell you and another thing when you know whats really going on. Sometimes

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212 Appendix G (Continued) you have to take everything with a grain of salt because I had a specific child, probably super ADD, who was in an Emotionally Handi capped class and everybod y there is so bad and the teacher writes him down like hes an an geland hes not, I can see hes active. Im thinking that the teacher is overwhelmed with horrible ca ses there, so hes not that bad. So, she marks it in comparison to the others. If a teacher is sending me an envelope, from an EH program, I know what may be happening. Its important to live in the community that you serve, and its important to know the schools. Private school teachers tend to be more open about communicating with you than public schools. The classes are smaller, usually the teachers know the pare nt, they live in the same communityits a community school. So theres more involvement or more interest in that child because the child may be the teachers neighbor or the teachers sons best friend. The public school teachers could care less [laughing]. We have a lot of patients who are teachers and theyre wonderful, but they re overwhelmed. They cantand besides, I think what makes a school better is the community. If you live in the community you teach or you practice in, you know the people, you know where they live, wh at school they go to, their family, and you know their problems. You know this child is acti ng out and you know the husband is a little bit violent and its very hard to know that if you dont live in the community. Im sure youre studying this, but why do Catholic schools with such terrible budgets and they dont even have teachers that are accredit ed, why is it that they do such a good job? Because they are a community school and the teachers there live in the same community

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213 Appendix G (Continued) and the teacherstheyre your neighbors. My ki ds went to Catholic school and if one of them got out of line, I was getting a phone call. Its your community and you dont want to see the kids in your community go astray. I understand. You also indicated that youv e been able to pres ent screening results to families using a culturally sensitive a nd family centered approach. Talk a little about how youve been able to do that. Give me an example. I try to be sensitive with a nybody. Well, Im Spanish so if its a Spanish family, Im speaking Spanish. I try to l earn the background of my patient s as much as I canwhere they are from, etc. We have a lot of Bosnians They come here and they are Muslim. For example, if their belief is that the girls are inferior, I will not go for that. I will try to present it in a sensitive way, but I do not know how to answer that question. If you had a parent who has limited educat ion, how would you go about explaining the results to him or her? I have a father with a very low IQ and hes re ally trying hard. I talk to him and I let him know that this person is taking advantage of him and that he should do this, but theres not much you can do. But yes, I try to go to th eir level. I never explain things in medical terms. I explain things with comparisons. For example, when Im explaining an immune disease, which is a difficult concept to understa nd, I tell them that you have an army and the army is your immune system and we have different branches such as the army and navy. I explain how each system works and th e job of each cell. An example I use the most when Im trying to explain to a child th at he has ADD, I ask them if they play

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214 Appendix G (Continued) sports. They usually say Yes, and then they say something like soccer. Then I ask what would happen if they showed up to a game and their coach didnt show up? No parentsjust the kids. Then he would say th at they wouldnt know what to do. Then I say, Who do you think is your bodys coach? and hell say My brain. Then I say that when he wakes up he is like a soccer team without a coach. Everybodys thereall the components are there but theres no one tel ling them what to do. So, I say that sometimes we have to wake up the brain so that in the morning when we wake up and go to class, the brain is not slee p. Then you can pay attention. The next one I wanted to talk about wasyou indicated that youre able to refer kids with developmental issues in a timely fashion. What are the steps that you take when you know something is goi ng on and you have to refer? As I said, I use all the screening techniques and I use my questionnaires and before you leave Ill give you one. When I use those que stions and I feel it s something I cannot handle, I give them my list. Say I have a doctor or psychologist here who takes most insurance and hes pretty good. I can send a lot of patients to him and he can screen them and I know about FDLRS for children with Speech impairments and I refer them there. I refer a lot of kids for physical therapy for fine motor concerns. Another question that you indicated is that you are able to determine the cause of delays or consult with the appropriate healthcare professional. You told me that you do screenings to determine this. So ho w do you determine whether you need to consult with a healthcare professional or someone else.

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215 Appendix G (Continued) Oh, I know my limits. I know that if I have a child with an antisocia l personality, I cant handle thator a child thats depressed. Or, if I try to treat someone with ADD and it doesnt workmanic depression, bipolar disorder s, the ones that just blow a fuseI cannot do it. You have to go a psychiatrist. Ok. You also indicated that youve been able to increase parent awareness of developmental disabilities and resources. We talked about the resources you referred them to, and again, how are you able to keep them informedup-to-date on what their child needs? Most parents here know more than we do because they know their child has problems and they have gone to the internet and lear ned everything there is to know about that. Then you have the parents that you have to te ll them to go to the sc hool because they are entitled to this and that. On e of our patients is a school boa rd person and she is fantastic and I call her too. I tell her I have a kid with this problem and ask what I can do. And she tells me to tell them to give her a call or write me or fax me a nd Ill look at the case. And how about if a family co mes in and gives you a repor t from someone else? Do you generally find yourself able to interpret those reports? Yes. Ok. Were at the barrier section and weve gone over a lot of these. Im going to read through the barriers and I want you to tell me why it is or is not still a barrier for you. You indicated that obtaining reimbursement fo r preventive services is a barrier.

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216 Appendix G (Continued) Tell me why. Because they dont pay for the amount of time. Some kids need an hour but theyre not going to pay for it. I cannot charge for an hour worth of mental healt h. Mental health is something that the insurance company wont pay for period. Do you know why? Thats insurance. Thats the law I guess. Here are a few others that you mentio ned as barriers, although through our conversation its sounding like you have overcome them. They are administering and scoring valid screening tools, assigning office staff to assist with developmental surveillance, and financing the cost of sta ndardized instruments. Youve been very resourceful in finding and using screening tool s online, etc. Youve also figured out ways to incorporate the completion of thes e tools at home or while the parents are waiting. Therefore, you can assess children and you are not worried about the costs associated with administering tests. Oh and you also have the computer which assists with gathering developmental inform ation. The only other existing barrier would be assigning office staff to assist with developmental surveillance. Why is this? Not enough staff or time for additional things. Okand referring families to community resources was not considered a barrier because of the assistance youve received from a nurse who has worked on finding resources.

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217 Appendix G (Continued) Right. Ok, this has been a wonderful intervie w and I thank you for your time today.

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218 Appendix G (Continued) Participant Number: 4 Interview Date: 4/6/07 Key: Interviewers responses in bold, pediatrician responses in normal typeset. On the online survey, you indicated that youre able to ke ep up-to-date about developmental issues, risk factors, screenin g techniques, and community resources. The first is child development issues. Ho w do you stay abreast with those concerns? By articles, reading periodicals and journals, American Academy of Pediatrics, Pediatrics in Review, and other pediatric journals. Are there any other methods you use? We use going to meetings where lectures are given. Like next week Im going to a seminar at Ft. Myers hospital its a two-day seminarand theyll be various topics discussed there and well get continuing me dical education. So I do the audio digest, journals, and seminars. The other one was child risk factors are there any additional ways that you keep up with those? No, thats about the way I do it. Screening techniques how do yo u find information on that? I dont use a lot of screening techniques. I have not been one that uses those. I have not found them very helpful. Can you expound on that? Theyre time consuming and I dont have a lot of time to do them, and when Im through,

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219 Appendix G (Continued) Im not sure what Ive accomplished other than what I see when I examined the patient and talked to the mom. I used to use it when I first started. I really didnt find them that useful. I just went on clinical evalua tion because they really didnt add much. And how do you keep up with your kn owledge about community resources? We have several pediatrician s in our group. We talk with each other and we have meetings. Ill say, Ive run into this problemhave you run into that yet? and theyll say, Yeah, Ive found this source was good. Other pediatricians in the community and in our group are helpful with that. We have one pediatrician here who is very interested in developmental problems, attention deficit di sorder, autism, and many of those types of conditions. He really enjoys and has made a special effort to become well educated and gain expertise in that area. If I have a question, Ill go over and talk to him and ask What school does this or Ill use Child Find a lot and I use the Early Development Program over there. But if I want somethi ng specific for a specific problem, Ill ask if theyve found the psychologist that really hones in on that ar ea and thats the way I keep up and find out about those special issues. Our nurse keeps a list of numbers for resources like Child Find and others. Ok. You also indicated that you presen t screening results to families using a culturally-sensitive and fami ly-centered approach. Please provide an example of how youve been able to communicate this information to families. Well, I try to be sensitive to cultural b ackgrounds. Again, I dont use a lot of those Denver developmental things.

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220 Appendix G (Continued) For example, I dont know what kind of clie nt base you have here, but say in the past you ran into a client who had limited English profic iency or limited education? Those areas are difficult to d eal with. You do the best you ca n to try to explain to them in terms that theyre going to understand. If its an English thing, I even have looked for somebody in the building that speaks Spanish an d there is one of our nurses who is good at speaking Spanish. The toughest one I ever had was a Japanese family who spoke almost no English. I couldnt get anybody to translate so I struggled and that fam ily, fortunately, didnt have a developmental problem. It was just ear aches and sore throats. I dont know what I would have done if it was a developmental probl em. For that family I would have had to go out into the community. Those folks did have a relationship with other Japanese people within the community and one time we were discussing a problem and the parents didnt understand and they gave me the name of a friend to call and talk to and I communicated through that 3rd party. It was just people that they knew in the community that they were close with and that s kind of the way I approach it For that particular situation, did it ta ke you a while before contacting that 3rd party? Yes. He was working. But most of the time I can find someone to interpret for me. Ok. Another question is that you indicated that you refer children with developmental delays in a timely fashion to the appropriate early intervention or early childhood program within the communi ty. You just stated that you have

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221 Appendix G (Continued) resources that you refer children to. Can you explain the process you have in this particular practice? Ok. Theres a problem and if the child is under three, most of the time we send him to the early developmental program. Thats a good reso urce for me. We start there. If theyre over three, then we have to do it more because at USF theyll see the child and then refer to areas of other needs. Frequently, theyll need to see the Endocrinologist, Neurologist, and Geneticist. They have all of those there at USF so they can serve as the center and refer out and then I have to do that here over three and Child Find is a good place to start. Theyll do hearing, vision, and developmental assessment and then if theyre specific problems like neurological prob lems, I have various neurologists that I refer to. USF clinic does under three year ol d referrals. Theyre so good at doing it, unless that parent requests that I do it. I understand. You also indicated that you re able to determine the cause of delays or consult with the appropriate healthcare professional. In general, what do you do to determine the cause of delays? I send them to the neurologist because for ma ny of the developmental problems, there is no etiology that we can put our finger on for many of them. Af ter we do a routine workup, we dont find a reason. Its hard to put your finger on what the problem is. Theres one family that has a child that Im thinking of now that weve sent to numerous places all over the country and has a marked developmental delay. Nobodys been able

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222 Appendix G (Continued) to put a name on it and theres been an unknown etiology. Hes seen world-class neurologists and geneticists a nd hes been treated at the USF program. Some of them you just cant find out. When youre doing your routine wo rkup, what does that entail? Sometimes you do blood work, sometimes you do ge netics, and check and make sure that theyre growing and getting the proper nutrition. Its just a process of evaluating the patient. How do you implement developmental surveillance? Most of the time the moms are suspicious and if I see something Ill ask if theyre concerned about something and theyll say, Yeah, Im glad you brought that up. I watch to make sure that theres truly a pr oblem before I bring it up because I dont want to put something in moms mind that shouldnt be there. But, most of the time they know and as you start to bring it up, th ey jump at the chance to talk about it. Then Ill say how about we go over to USF and get evaluate d. Theyll do some tests and some blood workup and depending on what they find, they may do more. Or, they may say that they havent found any concerns. Going back to consultation, we talked about different pediatricians and their areas of expertise within your group. While stay ing on the consultation topic, do you ever consult with other healthcare professional s directly or just refer your patients to them? Yes I do. If I have a concern or if Im havi ng a problem getting a child in, Ill sometimes

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223 Appendix G (Continued) call her or one of his or her folks. Sometimes its hard to get an appointment so if I call sometimes it helps. In addition to that, are you able to consul t with individuals within the school system or vice versa? With the school system, its more of them th rough the parents really. My contact with the school system is mostly with kids ha ving ADHD, which I have decided that I dont do. Its a very complex problem and I have just gotten out of doing ADD. But when I was doing that, they were contacting me thr ough the parents indirec tly, trying to get the kid on medication. It could be the teacher or the school psychologi st who thought the kid needed to be on medication. Fr ankly, feel that a lot of kids are labeled ADHD and put on medication when they shouldnt be on medication. How do they present themselves to you? Most of the kids are behavior problems in sc hool so they want to calm them down so that they are not disrupting in sc hool. That seems to be their goal. Thats how it comes across. As long as a kid doesnt cause troub le in the classroomthats our main goal. And the parents just want the problem to go away. Give the child a pill and make the problem go away and they dont want to do a ll the other things th at are required. You know, youve got to make sure that the child gets their homework done every night. Youve got to make sure that the child is taking his medicationparentsmany of them just want the easy solution. Is it a lack of education?

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224 Appendix G (Continued) Im not sure if its a lack of education. Its more like a lack of involvement. Really, theyre not involved with their children as before. They go to daycare and they go to work, and both parents work, a nd moms not home. I think thats a big problem. Im sure ADHD didnt just developits been ther e all along. But mom was home, you had family support and there was discipline. A lot of these attention defi cit disorder children can be disruptive. But, if there was pretty strong discipline and structurethats the way weve made it in the past Im sure. Ma ny probably didnt graduate from high school, they quit when they were 16, but they all seemed to make it. They all were citizens that were valuable to the community. But the fa mily structure is no longer there. Theres no discipline to go to school and if they are disr uptive, theres not much the teacher can do but call the pediatrician to try to put him on a pill to control him. I was very displeased with that. I decided that I wasnt going to be a refill Adderall doctor. Luckily, when I did, we have a child psychiatrist that I re fer my school behavior problems to. I dont abandon them, but I have found a place to go. I understandOk, you also indicated that youve been able to increase parent awareness of developmental disabilities a nd resources for interventions. What are your methods for educating parents? Just things that we talk about. Look for th is problemyoure going to run into problems here and there. Thats it generally. Do parents call you to ask questions?

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225 Appendix G (Continued) Sure, I have one child thats a teenager and Ive been taki ng care of him since he was two. He injured his spinal cord, had asthma, scoliosis, all the problems with being a paraplegica wheelchairHes at the point now where he has a dog who helps him. The dog can open the door and tu rn out the lights. So, Ive kind of grown up with him and hes been an education for me. You also indicated that youve been able to assist families with interpreting reports from other practitioners I get that all the time. A little girl got an MRI and they told them it was abnormal. There were problems and mom called and asked me to interpret it for her. Frequently, when Ive referred them to someone like a specialis t and they found a problem, they come back to me for reassurance and interpretation. I interpret the findings in a reassuring way so they understand that theres a problem but we can fix it. They come back to me because Ive been there all along. Th ey trust me more than the high powered guy who obviously knows a lot more about the dis ease and treatment, but I get feedback from the specialist and then feed it to the parents. They hear the same thing from me that they heard from the specialist, but because I know the family a nd Ive been with the family, its different. I try to present it to them positively no matter how difficult the results are and talk them through the steps. I understand. Another question noted that you have not been able to acquire the skills needed to administer and interpret valid and reliable developmental screeners, but we discussed that you dont find value in using the screeners I just dont use them so Im not trying to keep up with them.

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226 Appendix G (Continued) Rightthe other one was that youve not been able to provide a strategy for periodic screening in the context of office based primary care. Well I thought you were talking about developmental tests. I do a screening every time a child comes in for developmental problems, check upsstuff like that. Do you use any protocols that youve created? No. Now Im going to go through a list of ba rriers and have you tell me why they continue to exist as barriers for you. One barrier is obtaining reimbursement for preventive services. Just funding in general is sometimes a problemfor folks who dont have insurance or who have inadequate insurancejust funding. And for what different reasons is f unding a barrier to preventive care? More families cant afford insurance. They cant get Medicaid because they make too much money. So, those families are having a hard time just getting in for routine checkups and sometimes immunizations. Just basic things can be a problem. The vaccine for children problem is a real he lp if a family has no insurance. I can use Vaccine for Children to get vacc ines. They dont like to go to the health department because theres a stigma associated with going to the health department. But just to come in for a checkup is expensive, especi ally if you dont have insurance. The insurance companies will pay a percentage for a certain level of care. The doctors and clinics all over the country keep raising the price and the insurance companies pay a

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227 Appendix G (Continued) percentage so they have to keep raising the price of the service so that they can make a living and pay their health. But, that drives the office visit price for the people who dont have insurance so high until they cant afford it. If you dont have insurance, theres no way I can say that I wont charge them the sa me price as those who do have insurance. The price of getting medical care has gone out of sight. The cost of a day in the hospital can be three, four, five grand. Theres nobody who can afford that. I seeokour last barrier is assigning o ffice staff to assist with developmental surveillance. I realize that this is not a barrier for you because you do it yourself. Correct. I do my own. Financing the costs of standardized instru ments is not an issue because you stated that you have your own methods of doing this without using instruments. Is there any other information that youd like to add at this time? No, thats about it. Ok, great. Thank you so much for your time.

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228 Appendix G (Continued) Participant Number: 5 Interview Date: 4/17/07 Key: Interviewers responses in bold, pediatrician responses in normal typeset How many hours per week do you see children? Thirty-twoat least. The first question you indicated on the online survey is that youve been able to keep up-to-date on developmental issues, risk fa ctors, community resources, etc. How do you keep up-to-date about things in your career? Usually, I use Pediatrics in Review which is a journal that I get once a month. Ill not read it in depth, but Ill thumb through to see what catches my interest. Is it typically journals or are there any other methods that you gain information? Thats the biggest. I get some AAP emails from time to time that send me to links on the AAP site. Is that free? You have to pay for that. And would that include information on ri sk factors, screening techniques, child development issuesall that stuff? Is that how you stay updatedthrough journals and emails. Yes. Ok, and how about community resources? How do you stay up-to-date on those? I dont know if I stay as up-to-date as I indicat ed on the survey. I ge t the brochures that

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229 Appendix G (Continued) they send from EIPHOT DOCs is one of them. Another one that you indicated was that you refer children with delays in a timely fashion to the appropriate early interven tion. Can you tell me how that comes about? What procedures do you use before getting to referral? Well, we assess them at every well-child chec k and we just have a few questions, four or five, within the developmental areathe soci al, fine motor, gross motor, language, and theres just a few screening questions that we do. Also, I ask if there are any parental concerns as well. If there are a couple areas that look like there are some issues on the developmental screen as part of the well-ch ild check, or if there are some parental concerns that I see, I usually refer pretty im mediately because I think its a little difficult for my patients to get in becau se theres so many patients and not so many doctors in this area. To get into? EIP for a full assessment. Is that one of your main referral sources? Yes. Thats it for the zero to three. If th eyre older than three and not in kindergarten, then I use the FDLRS program. When theyre in school, its the school. How have you maintained your relationshi p with community resources? Is there a point person here? Is it with those brochures that you informed me of? Yeah, theres no point person. The social worker was hired to work with adolescent physicians in the HIV program. Hes just a gr eat resource of all th e community resources

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230 Appendix G (Continued) so, when I really have a problem, I call him. How have you been able to increase parent awareness of developmental delays and disabilities? How do you educate them as they are with you? In what way? Say I come in with my child and you noti ce toe walking or low tonehow would you educate me about the issue and what I may need to do at home as well? I dont know that I wouldbecause I dont know whats going on yet. Can you think of an instance where you had known whats going on? Say that theres a language delaywere part of the Reach Out and Read program so I have a grant to give out books at every wellchild visit. I really emphasize even more than normal, reading to them. If they indi cate wants by pointing, I tell the parents to verbalize the words several times before they give the child what they want by pointing. In the rooms, there are brochures they can take for ADHD and stuff like that. You didnt indicate the usage of the de velopmental screeners. Why is that? Other than what those questions are on each well child that are age relevant developmental questionsthere is the Ages and Stages I think it is, and they do that down at 17 Davis. Weve tried to do it here and we elected not to. Its kind of a unique situation where its like I was with my part ner and we work exclusively with medical studentsseeing patients and then making su re their work is correct and theyre generally much slower. So, it wasnt a feas ible situation to turn over the rooms quick enough.

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231 Appendix G (Continued) So, time was an issue? Yesand I cant even, in terms of support staff. I have one nurse to do everything. So, I can t even ask her to do that. You did not indicate that you were able to determine the cause of delays or consult with the appropriate professionals. Time and accessibility are issues. Other profe ssionals are really hard to get a hold of. I dont blame her, thats just how it is. Shes really the one person that I know I can get a hold of. Your partner? [Doctor]. Shes really the only one that I know. There is another one who deals with autism, but I cant remember his name His program is entirely pay upfrontno insurance. So, none of my patie nts can really afford it. Its like five hundred something dollars for the initial assessment. You didnt indicate that youve been able to assist families with interpreting reports or feedback from other practitioners. Was this a statement that doesnt really occur for you? Do families bring in reports from someone else and ask you to explain it? I will get whatever assessment thats been done across the street. So I get that and sometimes they will bring in school performa nce report cards or letters from teachers and the concerns that they have. In terms of some of the vari ous developmental testing that gets done, I dont feel extremel y confident in being able to interpret it and discuss it intelligently. Would that information come fr om child development setting?

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232 Appendix G (Continued) That or the school setting. Ok. Here, you indicated that you were not ab le to develop a strategy for providing periodic screening. Is that accurate because we just talked about how you typically screen kids? I guess I was thinking more of like the formal Ages and Stages and stuff like that. Other than the set of, I think its about nine questions on the well-child check, then I guess thats it. Do you guys have a protocol for that? Its just a form and the questi ons are appropriate for each age. Another one that you indicated is that you are unable to present screening results to families using a culturally-sensitive or family-centered approac h. I didnt understand that. For example, what if you have a family th at did not speak English? Or, what if you had a family who just did not understand you and youre trying to make it more concrete for them? How do you approach those instances when you have to really help them try to understand whats going on? Well, in terms of the language barrier, that s a difficult one because none of my staff speak Spanish. But, there are receptionists th at we can find to help translate, which I know is not the best situation. I also draw a lot of pictures to help them understand also when they apply. Give me an example of something you may have drawn for a parent to help them

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233 Appendix G (Continued) understand. In the developmental realm or Anything in general. Asthma. Ill draw the lungs and the airways and how they constrict. Ill draw reflux. And how about developmental pictures? Thats about it. I had a family from Sierra Leon and they spoke French. We used Google Translation to communicate with the patient. You can put it in English and it will translate it to whatever language. So, your patient would write thei r response in their language? Yes, and it would translate to English. It made it a very long visit [laughing]. My student showed me that. Ok. There were a lot of barriers listed at the end of the online survey. You indicated which ones remain barriers for you. On e stated obtaining reimbursement for preventive services. Youre able to do th is. How did that come about within this environment? Youre talking about reimburse ment for well-child checks? Yes. I verify the patients insurance. Well, they re supposed to before the patient comes in. Then we have the billing slip s and it gets submitted to th e insurance. I dont know how much we collect on it but we certainly file for those claims. Now, when we say well child I want to make sure that I understand. Would that be

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234 Appendix G (Continued) considered preventive? Yes, like immunizations, we do that. Ok, I wanted to make sure. Can you list the types of preventive services? Sure. The first one technically is at the two week visit, but we usually see kids before then out of the hospital. Then two months four months, six months, nine months, one year, fifteen months, eighteen months, and then two years and every year thereafter. And you said immunizations are one of the preventive types of care? Yes. There have just been some issues w ith immunization reimbursement that it doesnt even cover our cost some times. If the im munization cost is one hundred dollars and the insurance gives us one hundred dollars back, that doesnt cover any overhead such as the cost to administer, spa ce for refrigeration, etc. Weve gone over the other barriers in ou r conversation. We talked about the screening tools and you stated that you do nt particularly use any at this site because you refer outand of course you ca nt score them if you dont have them. We also talked about the community resources and you indicated to me that you use two in particular, but you also have the social worker for additional help. Hes not technically for us, I just use him for emergencies. Ok. Then assigning office staff is difficult because of limited staff, limited time, and Limited space. limited space.

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235 Appendix G (Continued) Yes, I only have two rooms. Financing the cost of standardized instrume nts is not an issue because you dont use them here. Are there any barriers that you ve run into that have prevented you from doing your job more effectivel y that I have not mentioned? That you havent mentioned? Those are the bigges t ones. My timeI have to see the patient so I can turn over the room. I have 30 minutes for a well-child check and that includes my student going in and getting the history and the physical, and then coming out to present the patient to me. I then go back and repeat the exam, my nurse comes in and administers vaccinations, and then th eres a dialoguebut then youre behind. That sounds like a hectic schedule that you deal with daily. Well, this interview has been very informative. Thank you.

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236 Appendix G (Continued) Participant Number: 6 Interview Date: 4/23/07 Key: Interviewers responses in bold, pediatrician responses in normal typeset. What do you do and how often do you work with children and families on a weekly basis? Im an in-patient doctor. Pediatricians refer to me. I see maybe, at most, twenty patients a day which is eighty to one hundred patient s per week. I am a Pediatric Hospitalist. Children dont come to us for developmental issues. They typically come for something else. Usually, its just part of our physical intake form. Y ou know it asks if a two month old is tracking, etc. So, for every patient that comes in, we do a post medical history, family history, etc. Then from that, if we pick something up then usua lly the referral is to neurology or the developmental specialist, [ doctor], where we have Early Steps. So depending on the level of disability or devel opmental delay, well refer them to say, Early Steps, so they can get the intake here in th e hospital and be sent out for outpatient work. So, in summary, children come to you for various reasons, but you have an intake form and you look at past medical hi story, family history, feeding history, gestational informationevery type of history to gain further information. Yes, birth history and everything. But one of those is a full developmental history and then we do a physical exam. Our residents also help with this. You indicated on the online survey that you have been able to keep up-to-date about developmental issues, risk factors, screen ing techniques, and community resources

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237 Appendix G (Continued) to assist with consultation, referral, and intervention. How have you done this? I attend conferences, read articles, and atte nd Grand Rounds. We have resources in the hospital such as a social worker. Also, I adopted a child with special needs. It takes compassion to have a child with concerns. You did not indicate that you present screening results to families using a culturallysensitive and family-centered approach. Tell me your thoughts about this particular topic. For example, how h ave you worked with a family that had limited education or did not speak English? I draw a lot. Im a visual person so I use drawings to help them understand. For example, if someone has a urinary tract infection, I will draw the kidneys and explain how they function to help the parent understa nd. We also use Spanish handouts that we give the families who speak Spanish. Some of our residents may be able to help translate. We also have Pastoral Care for families who are experiencing a very tough time with their loved ones within the hospital. I seeyou also indicated that you refer ch ildren with developmental delays in a timely fashion to the appropriate early intervention or early childhood programs within the community. Please explain the process you have implemented in order to do this is a timely fashion. We have a protocol for testing for disabil ity or developmental delay. We have our physical intake form and we collect informa tion regarding past medical history family

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238 Appendix G (Continued) history, feeding, gestation histor y, birth history, and a full deve lopmental history. This is very thorough. If any concerns are found, we refer immediately to different resources as needed such as parent programs, neurology, Early Steps and FDLRS are good Speech therapists and Genetics as well. You also indicated that you are able to dete rmine the cause of delays or consult with the appropriate healthcare professional or consultant for determination. How do you go about doing this? This doesnt really happen in this setting. A time crunch makes it difficult to do this because theres difficulty reaching the patients doctors. How about within the school system? Ive consulted with teachers and school nurses at times regarding children. You didnt indicate that you have acqui red the skills needed to administer and interpret valid and reliable developmenta l screeners. Does this occur in your setting? No. Would that be the same answer for providi ng a strategy for periodic screening in the context of office-b ased primary care? Yes. How about maintaining relationships with community-based resources and coordinating care with them through the medical home. Does this happen within this setting?

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239 Appendix G (Continued) No it doesnt. You indicated that you have been able to increase parents awareness of developmental disabilities and resources fo r intervention. Please explain how you have been able to do this. I explain the best I can what the concerns are and we have several resources such as Early Steps and FDLRS and others that we refer to as concerns arise. You indicated that you have been able to as sist families with interpreting reports or feedback from other practiti oners. Please explain how this may occur at your site. I put myself in their place. Before I was a doctor, I think about how I would want it interpreted. I see parents and they are waiting for the doctor. When I was a patient, I held on to everything the doctor said. I help explain lab results to parents but I dont always get reports. But as a primary care physician, Ive helped patients read speech language reports and other reports. I just give them the bottom line. I understand. Ok, I am going to read through a list of barriers and I will start with the barrier that you indicated that you ve overcome within your setting. This barrier is referring families to community resources for intervention. You did not consider this to be a barrier. Why is that? Because we have access to a social worker a nd pastoral care to talk to families and comfort them. The other barriers I will briefly read through but I realize that they may not apply to your hospital setting. One barrier is assigning office staff to assist with

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240 Appendix G (Continued) developmental surveillance. Does this occur? No. How about financing the cost of standardiz ed instrumentsDoes this occur in your setting? No. Obtaining reimbursement for preventive se rvicesDoes this occur in your setting? No. Administering validated screenin g toolsDoes this occur? No. Scoring validated screening tools? No. Are there any barriers that I have not mentio ned that make it difficult for you to serve children and their families? YesProviding hospital care to illegal migran t workers. Medicaid pending pays for illegal aliens to get care in the hospital, but they dont get Medicar e. Then theres the issue of primary care, which has to see seve ral patients per day to keep their practice goingand the insurance companies dont pay. Alright. Well, if that is it, I really app reciate your time speaking with me given your hectic schedule. Thanks so much.

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Appendix H Audit Trail Participants Interview Criteria for Inclusion in Interview Participant One Interview Date: 3/21/07 Time Frame: 1 hr 30 min Setting: Face-to-Face Interview Reported following 9 AAP Guidelines on Online Survey Participant Two Interview Date: 3/22/07 Time Frame: 1 hr Setting: Face-to-Face Interview Reported following 8 AAP Guidelines on Online Survey Participant Three Interview Date: 3/29/07 Time Frame: 1 hr 20 min Setting: Face-to-Face Interview Reported following 8 AAP Guidelines on Online Survey Participant Four Interview Date: 4/6/07 Time Frame: 1 hr Setting: Face-to-Face Interview Reported following 7 AAP Guidelines on Online Survey Participant Five Interview Date: 4/17/07 Time Frame: 55 min Setting: Face-to-Face Interview Reported following 4 AAP Guidelines on Online Survey Participant Six Interview Date: 4/23/07 Time Frame: 45 min Setting: Phone interview (could not meet face-toface due to scheduling conflicts; preferred phone interview) Reported following 5 AAP Guidelines on Online Survey 241

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242 Appendix I Bracketing Interview I am Kahlila Mack, school psychology doctoral student at the University of South Florida. I currently work with elementar y, middle, and high school students within a large county in the state of Florida. I am orig inally from an urban c ity in New Jersey and I moved to Florida after deciding to pursue hi gher education at a pr ivate college. After graduating with a bachelors degree in psyc hology, I was accepted into the University of South Floridas school psychology program. During my matriculation through USFs gr aduate program, I have had numerous experiences working with young children and th eir families. My first experience was as an assistant supervisor of a summer reading program created for families within the local community. The focus was to assist the parents with learning strategies for engaging their children in reading fluency and compre hension. I helped to supervise undergraduate teacher education student volunteers who, along with myself, worked directly with the families to discuss and model ways to enhance their childrens reading skills. School practicum assignments were addi tional experiences th at Ive had with young children during my early graduate career These experiences gave me my initial understanding into the needs of young children (i.e., primarily kindergarten through first grade) within the school setti ng. I typically observed and in teracted with these children in a manner that allowed me to begin learni ng to build rapport with the children, assess the childrens academic and behavioral skills implement interventions, and consult with parents and a variety of school staff.

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243 Appendix I (Continued) My next experience working with young children came with my employment as a graduate student within the public school distri ct. During this time, I worked with Child Find on a Pre-K assessment team which complete d assessments of children three to five years old who were suspected as having developmental concerns. This was a multidisciplinary team which consisted on a speech pathologist, social worker, and school psychologist. Each member conducted ev aluations within thei r specific expertise in an effort to produce a wholistic pict ure of the childs concerns and needed interventions. Several children were referre d to the team after attending a developmental screening offered free to all families who attend. I, along with other educators and community agencies, worked these monthly sc reenings. This experience provided me with additional insight on th e developmental concerns of young children and the various resources available for interven tion planning and development. As I worked with Child Find and at th e monthly developmental screenings, I simultaneously worked at a local agency cal led the Early Intervention Program (EIP). This setting provided me with experiences th at allowed me to collaborate with other disciplines such as developmental pediatrici ans, service coordinators, and other school psychologists. At EIP, young children, birth th rough three years, were referred to this site as well to assess their developmental concerns. After these profound and enlightening expe riences, I worked at a local mental health institute where I was matched with families of young children having developmental disabilities and displaying ch allenging behaviors. During this time, I worked with the children within their ho me and preschool settings to assist with

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244 Appendix I (Continued) developing interventions with their caregivers. Working with families in such a manner gave me an even closer look into the daily struggles that they often face. During this time, I was challenged to go beyond my textbook knowledge and think creatively in an effort to help the families I had now become a part of. My previous experiences have shaped the way I view young children and families to this day. I am now on my school psychol ogy internship at two el ementary schools and two alternative schools for middle and high school students who have been expelled from the public school system due to frequent a nd/or severe behavior concerns. Although there is a significant difference between thes e two types of schools, I have begun to see a trend emerge. After reviewing several altern ative school students school records, I have noticed that many of their early school years (e.g., kindergarte n and first grade) consisted of academic failure. The school progress notes and psychology reports that I reviewed for these students later school years c ontinued to show academic concerns and, oftentimes, coexisting behavior concerns. This has caused me to ask the question, D id my alternative sc hool students show any signs of delays, disabilities, or othe r concerns before they entered the school system? If so, Could all of this have been prevented? There are numerous reasons why a child may not show improvement af ter receiving academic and behavioral interventions within the school system (e.g., frequent school moves, frequent absences, etc.). However, my interest had been sparked as I conti nued to ponder on ways families of young children who are at risk for developmental delays and disabilities could be assisted as early as possible through a coll aboration of professionals. I had the honor

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245 Appendix I (Continued) of working among many great professionals who service young ch ildren effectively, despite the obstacles th at make their job challenging. I was interested in learning about how they have thought outside the box in an effort to provide ex cellent care to young children and families. I also was concerned about how we all, as multiple disciplines, could continue to collaborate in an effort to help children and families. Therefore, my research begins with a discussion of general pediatricians, whose ar ea of discipline often has the most interaction with young children and families as compared to other disciplines.

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About the Author Kahlila Genese Mack was born and raised in Paterson, New Jersey. She obtained her Bachelors degree in Psychology from Bet hune-Cookman College, now Bethune-Cookman University. She graduated from the University of South Florida and received her Doctoral degree in School Psychology.


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ABSTRACT: General pediatricians are typically the first professionals to detect the early developmental concerns of young children during their infant and toddler stages. When concerns are identified by the general pediatrician, best practice encourages the referral of young children for further assessment and/or intervention. Due to these factors, this study focused on the methods general pediatricians use in their efforts to implement the American Academy of Pediatrics (AAP) guidelines for the developmental surveillance and screening of young children. Furthermore, this study focused on the barriers faced by general pediatricians and the solutions they have developed to overcome these barriers in their efforts to assist young children with developmental delays and disabilities. Twenty-eight pediatricians who also were members of the Region V Florida Chapter of the AAP provided responses to survey data inquiring about the implementation of AAP guidelines within their settings.Six of the survey respondents were general pediatricians who each participated in a semi-structured interview to gain further insight into their implementation of the AAP guidelines. Additionally, existing barriers were examined to determine the strategies general pediatricians developed to overcome them. The results showed that each of the six general pediatricians reported their engagement in some, if not all recommended AAP guidelines. The general pediatricians shared specific examples of how this was done, which provided valuable data for other general pediatricians who desire to learn effective strategies for implementing AAP guidelines. The interview responses addressed several themes, including training and continuing education, learning about and using developmental screeners, determining the cause of delays and disabilities, referring children with delays and disabilities, using a culturally-sensitive/family centered approach, and increasing parent awareness.General pediatricians also reported how they have overcome the barriers (e.g., limited time and staff members) to following AAP guidelines, as well as barriers that continue to exist (e.g., insufficient reimbursement for preventive care, difficulties serving children from low-income families, etc.). Although this study focused on how general pediatricians have overcome obstacles, multidisciplinary collaboration was emphasized as an integral factor needed to achieve the earliest identification and intervention implementation for young children with developmental concerns.
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