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Suggested Citation:"Front Matter." National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for Improving Programs and Services for Children with Disabilities. Washington, DC: The National Academies Press. doi: 10.17226/25028.
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Below is the uncorrected machine-read text of this chapter, intended to provide our own search engines and external engines with highly rich, chapter-representative searchable text of each book. Because it is UNCORRECTED material, please consider the following text as a useful but insufficient proxy for the authoritative book pages.

OPPORTUNITIES FOR IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES Committee on Improving Health Outcomes for Children with Disabilities Amy J. Houtrow, Frank R. Valliere, and Emily Byers, Editors Board on Health Care Services Health and Medicine Division A Consensus Study Report of PREPUBLICATION COPY: UNCORRECTED PROOFS

THE NATIONAL ACADEMIES PRESS 500 Fifth Street, NW Washington, DC 20001 This activity was supported by a contract between the National Academy of Sciences and the U.S. Social Security Administration (#SS00-13-60048/0007). Any opinions, findings, conclusions, or recommendations expressed in this publication do not necessarily reflect the views of any organization or agency that provided support for the project. International Standard Book Number-13: 978-0-309-XXXXX-X International Standard Book Number-10: 0-309-XXXXX-X Digital Object Identifier: https://doi.org/10.17226/25028 Additional copies of this publication are available for sale from the National Academies Press, 500 Fifth Street, NW, Keck 360, Washington, DC 20001; (800) 624-6242 or (202) 334-3313; http://www.nap.edu. Copyright 2018 by the National Academy of Sciences. All rights reserved. Printed in the United States of America Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2018. Opportunities for improving programs and services for children with disabilities. Washington, DC: The National Academies Press. doi: https://doi.org/10.17226/25028. PREPUBLICATION COPY: UNCORRECTED PROOFS

The National Academy of Sciences was established in 1863 by an Act of Congress, signed by President Lincoln, as a private, nongovernmental institution to advise the nation on issues related to science and technology. Members are elected by their peers for outstanding contributions to research. Dr. Marcia McNutt is president. The National Academy of Engineering was established in 1964 under the charter of the National Academy of Sciences to bring the practices of engineering to advising the nation. Members are elected by their peers for extraordinary contributions to engineering. Dr. C. D. Mote, Jr., is president. The National Academy of Medicine (formerly the Institute of Medicine) was established in 1970 under the charter of the National Academy of Sciences to advise the nation on medical and health issues. Members are elected by their peers for distinguished contributions to medicine and health. Dr. Victor J. Dzau is president. The three Academies work together as the National Academies of Sciences, Engineering, and Medicine to provide independent, objective analysis and advice to the nation and conduct other activities to solve complex problems and inform public policy decisions. The National Academies also encourage education and research, recognize outstanding contributions to knowledge, and increase public understanding in matters of science, engineering, and medicine. Learn more about the National Academies of Sciences, Engineering, and Medicine at www.nationalacademies.org. PREPUBLICATION COPY: UNCORRECTED PROOFS

Consensus Study Reports published by the National Academies of Sciences, Engineering, and Medicine document the evidence-based consensus on the study’s statement of task by an authoring committee of experts. Reports typically include findings, conclusions, and recommendations based on information gathered by the committee and the committee’s deliberations. Each report has been subjected to a rigorous and independent peer-review process and it represents the position of the National Academies on the statement of task. Proceedings published by the National Academies of Sciences, Engineering, and Medicine chronicle the presentations and discussions at a workshop, symposium, or other event convened by the National Academies. The statements and opinions contained in proceedings are those of the participants and are not endorsed by other participants, the planning committee, or the National Academies. For information about other products and activities of the National Academies, please visit www.nationalacademies.org/about/whatwedo. PREPUBLICATION COPY: UNCORRECTED PROOFS

COMMITTEE ON IMPROVING HEALTH OUTCOMES FOR CHILDREN WITH DISABILITIES AMY HOUTROW (Chair), Associate Professor of Physical Medicine and Rehabilitation and Pediatrics, University of Pittsburgh School of Medicine PAULA ALLEN-MEARES, Professor of Medicine, Executive Director, Office of Health Literacy, College of Medicine, University of Illinois at Chicago JAY BERRY, Physician, Boston Children’s Hospital, Assistant Professor of Pediatrics, Harvard Medical School CLAIRE BRINDIS, Professor of Pediatrics and Health Policy, University of California, San Francisco STEPHEN M. CAMARATA, Professor, Hearing & Speech Sciences, Vanderbilt University WENDY COSTER, Professor and Chair, Boston University Department of Occupational Therapy MARYANN DAVIS, Associate Professor, Director, Department of Psychiatry, University of Massachusetts Medical School ELENA FUENTES-AFFLICK, Professor and Vice Chair of Pediatrics, University of California, San Francisco JAMES E. MARTIN, Zarrow Family Professor, Department of Educational Psychology, University of Oklahoma JAMES PERRIN, Professor and John C. Robinson Chair in Pediatrics, Harvard Medical School RAMESH RAGHAVAN, Professor and Associate Dean for Research, Rutgers University School of Social Work KARRIE SHOGREN, Professor, Department of Special Education, Kansas University Center on Developmental Disabilities RUTH E. K. STEIN, Pediatrician and Professor of Pediatrics, Albert Einstein College of Medicine/Children’s Hospital at Montefiore MAUREEN VAN STONE, Associate Director, Maryland Center for Developmental Disabilities, Kennedy Krieger Institute JOHN WALKUP, Chair, Department of Psychiatry, Ann and Robert H. Lurie Children’s Hospital of Chicago DAVID WITTENBURG, Director, Health Research and Senior Researcher, Mathematica Policy Research Staff FRANK VALLIERE, Study Director KAREN HELSING, Senior Program Officer EMILY BYERS, Associate Program Officer (from June 2017) LAURA VERCAMMEN, Research Associate (through April 2017) ANNALEE GONZALES, Senior Program Assistant SHARYL NASS, Director, Board on Health Care Services Consultant HOWARD GOLDMAN, Professor of Psychiatry, School of Medicine, University of Maryland at Baltimore v PREPUBLICATION COPY: UNCORRECTED PROOFS

Reviewers This Consensus Study Report was reviewed in draft form by individuals chosen for their diverse perspectives and technical expertise. The purpose of this independent review is to provide candid and critical comments that will assist the National Academies of Sciences, Engineering, and Medicine in making each published report as sound as possible and to ensure that it meets the institutional standards for quality, objectivity, evidence, and responsiveness to the study charge. The review comments and draft manuscript remain confidential to protect the integrity of the deliberative process. We thank the following individuals for their review of this report: Christina D. Bethell, Johns Hopkins Bloomberg School of Public Health Stephen L. Buka, Brown University School of Public Health E. Jane Costello, Duke University Medical Center Crayton A. Fargason, University of Alabama at Birmingham and Children’s of Alabama Mark L. Gross, U.S. Department of Justice (Retired) Kelly J. Kelleher, Nationwide Children’s Hospital Ryan Kellems, Brigham Young University Valerie Mazzotti, University of Oregon Mary Jane (MJ) Mulcahey, Thomas Jefferson University Michelle R. Munson, New York University Mark Olfson, Columbia University Medical Center Rhea Paul, Sacred Heart University Walton Schalick, University of Wisconsin Donald M. Steinwachs, Johns Hopkins University Although the reviewers listed above provided many constructive comments and suggestions, they were not asked to endorse the conclusions or recommendations of this report nor did they see the final draft before its release. The review of this report was overseen by Georges Benjamin, American Public Health Association, and Sara Rosenbaum, The George Washington University. They were responsible for making certain that an independent examination of this report was carried out in accordance with the standards of the National Academies and that all review comments were carefully considered. Responsibility for the final content rests entirely with the authoring committee and the National Academies. vii PREPUBLICATION COPY: UNCORRECTED PROOFS

Preface With support from the Social Security Administration (SSA), the National Academies of Sciences, Engineering, and Medicine convened the ad hoc Committee on Improving Health Outcomes for Children with Disabilities. My colleagues on the committee and I were tasked with producing a comprehensive consensus report on programs and services available to children with disabilities. This report was to provide findings and conclusions that would inform future policy, practice, and research and thereby contribute to improving health and functioning outcomes for all children with disabilities, with a particular emphasis on children who receive Supplemental Security Income (SSI) benefits. While the committee felt the enormity of this task, we were privileged to convene as an interdisciplinary team of experts to assess the benefits of programs and services for children with disabilities and to identify opportunities for improving service delivery. There is no universally accepted definition of childhood disability. Different conceptual frameworks are used by clinicians, researchers, agencies, service providers, and people with disabilities to understand disability and define disability for purposes of program inclusion, classification, and monitoring. This variability posed a challenge for the committee, as it does for children with disabilities and their families, researchers in the field, and policy makers. The committee recognizes that the nature and severity of disability are not determined solely by underlying medical conditions, but are a function of interaction with the physical world, opportunities, policies, available supports, and social role expectations for children. Therefore, the committee defined disability as “an environmentally contextualized health-related limitation in a child’s existing or emergent capacity to perform developmentally appropriate activities and participate, as desired, in society.” The differing definitions of disability on a programmatic level may be appropriate for service allocation and delivery, but the lack of a consistent conceptual framework guiding a harmonized approach to disability solidifies divisions among services and introduces hurdles for families who must navigate between agencies and programs that provide health, education, employment, social, emotional, and financial supports. Various barriers in these arenas often impede the trajectory of a child with disabilities toward independence, autonomy, success, and happiness in adulthood. Programs and services for children with disabilities are not organized for ease of use, and families affirm the challenges of navigating the various systems involved. Notably, there is no one “system” of care for children with disabilities, no organized, unified assemblage of programs and services. The lack of a cohesive network or system means that opportunities to intervene and improve health and functioning are often missed. ix PREPUBLICATION COPY: UNCORRECTED PROOFS

x IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES The issues of access and unequal access were constant themes during the committee’s deliberations. Although ample evidence shows that specific treatments and models of service delivery improve outcomes, dissemination and uptake of these treatments and care models are inadequate. Additionally, many programs and services fail to conduct rigorous outcomes research, and their results may not be generalizable beyond the populations they serve. Substantial workforce issues exist as well. Wait times to see some types of providers and to receive certain services can be extensive. Consequently, children in less well-resourced communities often cannot access care that would benefit them. For example, children in rural areas frequently must travel considerable distances to access needed services. Thus, their families need to plan several hours for travel, take time off work and away from other family members, and pay transportation expenses they would not face if services were available in their communities. And sometimes, the best care is simply out of reach, especially when insurance companies limit coverage for out-of-network health services. Insurance coverage is paramount to ensuring access to needed health care services for children with disabilities, regardless of whether that insurance is privately acquired through a parent’s workplace or publicly provided. If children with disabilities and their families are to fully reap the benefits of the available health care treatments and services, insurance should be continuous, cover needed services and providers, and not be financially burdensome to families. Although considerable gains in insurance adequacy have been realized in recent years, ongoing uncertainties remain; these uncertainties carry important implications for the health and functioning of children with disabilities. Ideally, the negative impacts of children’s health conditions and disabilities on their well- being would be minimized by high-quality, evidence-based health care in a family-centered medical home. This medical home would lie within a cohesive health neighborhood that included individualized, goal-directed, well-organized, culturally competent, and appropriately delivered treatments, services, educational interventions, and supports that did not burden families financially and were easy to access and use. Further, society would offer ample opportunities for children with disabilities and their families to thrive. Under the best circumstances, children would be supported in reaching their full potential, and families would not experience the negative consequences often associated with disability, such as work loss, chronic stress, poor health, and economic instability. In a fully inclusive and supportive society, the shame associated with disability would not exist; children with disabilities would not disproportionately be the victims of bullying, child abuse and neglect, sexual assault, and other forms of violence; and they and their families would be able to access the supports they needed when they needed them. However, it is essential to acknowledge that even in the best of circumstances, many children with disabilities, especially those with the most severe disabilities, including those on SSI, will remain limited in their ability to do everything other children are able to do because not all disability or the associated health conditions can be fully ameliorated or cured. Thus, the continued need for services and supports for children with disabilities should not be viewed as programmatic failure, but instead as an opportunity to further optimize care delivery and improve outcomes. Children receiving SSI are a small but important subset of children with disabilities. To be eligible for SSI, in addition to meeting income criteria, a child must have “a medically determinable physical or mental impairment, which results in marked and severe functional limitations, and which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.” To qualify, the child must have an PREPUBLICATION COPY: UNCORRECTED PROOFS

PREFACE xi extreme limitation or at least two limitations that are marked in the areas of acquiring and using information, attending and completing tasks, interacting and relating with others, moving about and manipulating objects, caring for oneself, and health and physical well-being. In January 2018, 1.2 million children, representing 1.6 percent of the total child population, received SSI because of disability. This percentage is much lower than population estimates of childhood disability for two important reasons. First, to receive SSI, children must be income-eligible and meet SSA’s strict definition of severe disability, and second, not all children who are eligible for SSI apply for and are served by the program. It is important to note that the services, supports, and programmatic needs of the children receiving SSI are greater and more intense relative to those of the general population of children with disabilities because their disabilities are more severe. Mental health–related disabilities, which include such neurodevelopmental conditions as autism and intellectual disability under SSA’s rubric, make up a majority of the disabilities among both children in general and those receiving SSI. Therefore, this report devotes considerable attention to mental health services. The committee notes that the service delivery for mental health care is often separate from the rest of health care, which creates a false dichotomy between mental and general health. Mental health is health. Physical health conditions can influence mental health and vice versa, and physical and mental health conditions often co-occur. Thus, better service integration would help diminish the stigma associated with and improve access to mental health treatment. Additionally, the committee found that certain characteristics of all types of programs and services, such as being goal-directed, individualized, and coordinated with other services, improve their success. While the committee acknowledges the enormous diversity of programs and services with varying objectives and impacts and our inability to catalogue them all, we identified numerous actionable opportunities to help improve the health and functioning of children with disabilities. The committee also found in reviewing the evidence that intervening early has larger and more lasting impacts on improving health and functional capacity for children with disabilities. Intervening early can also be more cost- effective and can help avoid more costly interventions, such as inpatient hospital stays. I would like to express my personal gratitude for the skills and dedication of the individual committee members and for their collective expertise, enthusiasm, and energy. Furthermore, this report could not have been produced without the able support of the staff of the National Academies, particularly Frank Valliere, Emily Byers, Annalee Gonzalez, Karen Helsing, Laura Vercammen. On behalf of the committee, I would also like to thank Howard H. Goldman for his participation and sage advice. Lastly, our sponsor agency, SSA, and its staff were instrumental not only in funding this initiative but also in articulating their vision for the impact of this report: improving outcomes for children with disabilities. It is my hope that the committee’s efforts will help advance service delivery for this important and vulnerable population. Amy Houtrow, Chair Committee on Improving Health Outcomes for Children with Disabilities PREPUBLICATION COPY: UNCORRECTED PROOFS

Acknowledgments The study committee and the Health and Medicine Division project staff take this opportunity to recognize and thank the many individuals who shared their time and expertise to support the committee’s work and inform its deliberations. This study was sponsored by the Social Security Administration. We thank Gina Clemons, Joyanne Cobb, Joanna Firmin, Thomas Mulherin, David Weaver, and Susan Wilschke for their guidance and support. The committee benefited greatly from discussions with the individuals who presented at and attended the committee’s open sessions: Johanna Bergan, Gary Blau, Allen Brown, Catherine Fowler, Darcy Gruttadaro, Arun Karpur, Michele Lawler, Peter E. Leone, Laura Owens, Kirstin Painter, Susan L. Parish, Laurie Powers, Rylin Rodgers, Carol G. Ruddell, Carol M. Schall, Debra Waldron, and Linda C. Wolfe. The committee is grateful to these presenters for volunteering to share their expertise, knowledge, data, and opinions not only with the committee but also with the members of the public who participated in the committee’s open sessions. The committee also appreciates the efforts of numerous individuals who assisted project staff in identifying the presenters. Further, we acknowledge the many staff within the Health and Medicine Division who provided support in various ways to this project, including Daniel Bearss, Cyde Behney, Patrick Burke, David Butler, Rick Erdtmann, Jennifer Flaubert, Greta Gorman, Nicole Gormley, Dana Korsen, Rebecca Morgan, Elisabeth Reese, Bettina Ritter, Lauren Shern, Julie Wiltshire, and Taryn Young. The committee extends great thanks and appreciation to the Health and Medicine Division board director who oversaw the project: Sharyl Nass, Director of the Board on Health Care Services. Finally, Rona Brière and Alisa Decatur are to be credited for the superb editorial assistance they provided in preparing the final report. xiii PREPUBLICATION COPY: UNCORRECTED PROOFS

Contents ACRONYMS AND ABBREVIATIONS xix SUMMARY S-1 1 INTRODUCTION 1-1 Study Charge and Approach, 1-1 Study Scope, 1-4 Definitions, 1-6 Navigating This Report, 1-8 References, 1-10 2 CONCEPTUALIZING CHILDHOOD DISABILITY 2-1 Operational Definitions of Disability and Related Concepts, 2-1 Contemporary Conceptual Understanding of Childhood Disability, 2-11 Case Studies, 2-23 Summary, 2-27 References, 2-28 3 HEALTH AND FUNCTIONING OUTCOMES FOR CHILDREN WITH DISABILITIES 3-1 Health Outcomes, 3-2 Social and Human Capital Development Outcomes, 3-4 Chapter Conclusions, 3-11 References, 3-12 4 HEALTH CARE PROGRAMS AND SERVICES 4-1 The Health Care Landscape for Children with Disabilities, 4-2 Specialized Health Care Services and Programs for Children with Disabilities, 4-14 Programs Supporting Access to and Quality of Health Care Services, 4-29 Chapter Conclusions, 4-39 References, 4-41 xv PREPUBLICATION COPY: UNCORRECTED PROOFS

xvi IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES 5 SOCIAL AND HUMAN CAPITAL DEVELOPMENT: SCHOOL-BASED PROGRAMS AND SERVICES 5-1 The Educational Landscape for Children with Disabilities, 5-2 Special Education Services for Children with Disabilities, 5-7 School-Based Transition Services, 5-18 Chapter Conclusions, 5-24 References, 5-26 6 SOCIAL AND HUMAN CAPITAL DEVELOPMENT: PROGRAMS AND SERVICES OUTSIDE OF THE SCHOOL SYSTEM 6-1 Vocational Rehabilitation and Pre-Employment Programs and Services, 6-2 Independent and Integrated Community Living Programs, 6-14 Advocacy Services and Programs, 6-18 Economic Support Programs, 6-24 Chapter Conclusions, 6-27 References, 6-28 7 CONCLUSIONS 7-1 Chapter-Specific Conclusions, 7-2 Characteristics that Contribute to the Effectiveness of Programs and Services, 7-6 Gaps and Limitations, 7-9 Opportunities for Improving the Provision of Services and Supports, 7-19 Opportunities for Improving Data and Research and Informing Decisions About SSA Involvement, 7-25 References, 7-29 APPENDIXES A PUBLIC SESSION AGENDAS A-1 B GLOSSARY B-1 C DESCRIPTIONS OF DATA SOURCES C-1 D LEGISLATION TO SUPPORT POSTIVE OUTCOMES FOR D-1 CHILDREN WITH DISABILITIES E BIOGRAPHICAL SKETCHES OF COMMITTEE MEMBERS E-1 PREPUBLICATION COPY: UNCORRECTED PROOFS

Boxes, Figures, and Tables BOXES 1-1 Statement of Task, 1-2 1-2 Working Definitions, 1-7 2-1 Children with Medical Complexity, 2-7 3-1 Sample Health Outcome Measures, 3-3 3-2 Sample Outcome Measures: Education, Daily Living Skills, and Communication and Social Skills, 3-6 3-3 Sample Outcome Measures: Self-Determination, Employment and Earnings, Community Participation, and Independent Living, 3-10 4-1 Models for Integrating Mental Health with Primary Care, 4-6 4-2 Core Principles for Patient- and Family-Centered Care of the American Academy of Pediatrics, 4-9 4-3 Selected Programs for Promoting Positive Mental, Behavioral, and Social Outcomes, 4-19 4-4 Special Olympics Fitness and Health Programs, 4-25 4-5 Examples of Approaches to Improving Health Outcomes for Children with Disabilities in State Disability and Health Programs Funded by the Centers for Disease Control and Prevention (CDC), 4-35 5-1 Person-Centered Planning, 5-5 5-2 Tiered Support Models, 5-8 5-3 Selected Peer Support Programs, 5-11 5-4 School-Based Mental Health Delivery Model of the National Center for Mental Health in Schools, 5-17 5-5 Definition of Transition Services Under the Reauthorized Individuals with Disabilities Education Improvement Act (2004), 5-21 5-6 Self-Determined Learning Model of Instruction, 5-24 6-1 Marriott: Bridges from School to Work Program, 6-6 6-2 Promoting Readiness of Minors in Supplemental Security Income (PROMISE), 6-8 6-3 Selected Local Employment Programs for Youth with Disabilities, 6-14 xvii PREPUBLICATION COPY: UNCORRECTED PROOFS

xviii IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES 6-4 Project HEAL, 6-22 6-5 Long Island Advocacy Center, 6-23 7-1 Chapter 3 Conclusions, 7-3 7-2 Chapter 4 Conclusions, 7-4 7-3 Chapter 5 Conclusions, 7-5 7-4 Chapter 6 Conclusions, 7-5 FIGURES 2-1 Prevalence of Childhood Disability Based on Selected Definitions, 2-11 2-2 International Classification of Functioning, Disability, and Health (ICF) Framework, 2-12 2-3 Interplay of Services and Programs, Personal Characteristics, Environmental Factors, and Child Health Outcomes, 2-14 2-4 “One Child”: A Boy’s View of His Daily Interactions as Drawn by His Mother, 2-19 TABLES 2-1 SSI Recipients, by Diagnostic Group and Age, December 2016, 2-3 2-2 Diagnoses by Age, SSI/Disability Enrollees within Medicaid Claims Data, 2010, 2-4 2-3 Number of Children and Students Served Under IDEA, Part B, in the United States, Outlying Areas, and Freely Associated States, by Age Group and Disability Category, 2-6 2-4 Prevalence of Chronic Conditions Associated with Limitations in Usual Activities for U.S. Children under Age 18, 2001–2011, 2-9 3-1 Body Structures and Their Functions Identified in the International Classification of Functioning, Disability, and Health, 3-2 4-1 Descriptions of Core Attributes of the Patient-Centered Medical Home, 4-8 4-2 Applications of Assistive Technology Devices, 4-17 4-3 Evidence-Based Psychotherapeutic Treatments Identified by the Society of Clinical Child and Adolescent Psychology, 4-23 5-1 Predictors of Positive Postschool Outcomes for Children with Disabilities, 5-19 6-1 Needs of Children and Youth, Including Those with Disabilities, Delineated in Guideposts for Success, 6-4 6-2 Summary of Promising Interventions: Transition and Employment, 6-11 PREPUBLICATION COPY: UNCORRECTED PROOFS

Acronyms and Abbreviations AAC augmentative/alternative communication AAP American Academy of Pediatrics ABA applied behavior analysis ABLE Achieving a Better Life Experience Act of 2014 ACA Patient Protection and Affordable Care Act ACICIEID Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities ACL Administration for Community Living ADA Americans with Disabilities Act ADHD attention-deficit hyperactivity disorder AFDC Aid to Families with Dependent Children AHRQ Agency for Healthcare Research and Quality AIDD Administration on Intellectual and Developmental Disabilities APA American Psychological Association ARC Annual Report to Congress ASD autism spectrum disorder ASPE Office of the Assistant Secretary for Planning and Evaluation of the Department of Health and Human Services ASPIRE Achieving Success by Promoting Readiness for Education and Employment ATS assistive technology services CBT cognitive-behavioral therapy CDC Centers for Disease Control and Prevention CDR Community Disability Review CFR Code of Federal Regulations CHIP Children’s Health Insurance Program CHIPRA Children’s Health Insurance Program Reauthorization Act of 2009 CIL Centers for Independent Living CMC children with medical complexity CMHC Community Mental Health Centers CMS Centers for Medicare & Medicaid Services COPAA Council of Parent Attorneys and Advocates, Inc. CSHCN children with special health care needs DD Act Developmental Disabilities Assistance and Bill of Rights Act xix PREPUBLICATION COPY: UNCORRECTED PROOFS

xx IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES EAHCA Education for All Handicapped Children Act ED Department of Education EDW EDFacts Data Warehouse EPSDT Early and Periodic Screening, Diagnostic, and Treatment ERIC Education Resources Information Center ESA education savings account FAPE free and appropriate public education FPIT Federal Partners in Transition FPL federal poverty level FY fiscal year GAO Government Accountability Office GED General Equivalency Diploma HCBS home and community-based services HHS Department of Health and Human Services HIPAA Health Insurance Portability and Accountability Act of 1996 HIV human immunodeficiency virus HRSA Health Resources and Services Administration HUD Department of Housing and Urban Development ICF International Classification of Functioning, Disability, and Health ID/DD intellectual disability or developmental disability IDEA Individuals with Disabilities Education Act IEP individualized education program IFSP individualized family service plan IOM Institute of Medicine IPS individual placement and support services IRS Internal Revenue Service JAMA Journal of the American Medical Association KFF Kaiser Family Foundation LEA Local Education Agency LEND Leadership Education in Neurodevelopmental and Related Disabilities LIAC Long Island Advocacy Center LRE least restrictive environment MAX Medicaid Analytics eXtract Study MCHB Maternal and Child Health Bureau MCO managed care organization MDD major depressive disorder PREPUBLICATION COPY: UNCORRECTED PROOFS

ACRONYMS AND ABBREVIATIONS xxi MDP model development program MHPAEA Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008 MLP medical–legal partnership MST Multi-Systemic Therapy MTSS Multi-Tiered System of Supports NAMI National Alliance on Mental Illness NASDDDS National Association of State Directors of Developmental Disabilities Services NCBDDD National Center on Birth Defects and Developmental Disabilities NCCJD National Center on Criminal Justice and Disability NCD National Council on Disability NCHMIS National Center for Mental Health in Schools NCIL National Council on Independent Living NCMLP National Center for Medical–Legal Partnership NCS-A National Comorbidity Survey–Adolescent Supplement NCSER National Council for Special Education Research NCSL National Conference of State Legislatures NHANES National Health and Nutrition Examination Survey NHIS National Health Interview Survey NIDA National Institute on Drug Abuse NIDILRR National Institute on Disability, Independent Living, and Rehabilitation Research NIH National Institutes of Health NIMH National Institute of Mental Health NJ DOE New Jersey Department of Education NOM national outcome measure NRC National Research Council NSCH National Survey of Children’s Health NS-CSHCN National Survey of Children with Special Health Care Needs NSDUH National Household Survey on Drug Use and Health NSTTAC National Secondary Transition Technical Assistance Center NTACT National Technical Assistance Center on Transition NTT Neuromotor Task Training OCR Office for Civil Rights OSG Office of the Surgeon General OYA Oregon Youth Authority P&A State Protection and Advocacy System PA physical activity PAAT Protection and Advocacy for Assistive Technology program PADD Protection and Advocacy for Individuals with Developmental Disabilities program PALS Peer Assisted Learning Strategies PREPUBLICATION COPY: UNCORRECTED PROOFS

xxii IMPROVING PROGRAMS AND SERVICES FOR CHILDREN WITH DISABILITIES PBHCI Primary and Behavioral Health Care Integration Grant Program PBIS positive behavioral interventions and supports PCC patient-centered care PCMH patient-centered medical home PIP performance improvement project PRA Project Rental Assistance PROMISE Promoting Readiness of Minors in Supplemental Security Income PRWORA Personal Responsibility and Work Opportunity Reconciliation Act of 1996 PTSD posttraumatic stress disorder RCT randomized controlled trial RSA Rehabitation Services Administration RTI response-to-intervention SAMHSA Substance Abuse and Mental Health Services Administration SBIRT screening, briefing, and referral to treatment SDLMI Self-Determined Learning Model of Instruction SGA substantial gainful activity SHAB School Health Advisory Board SMI serious mental illness SRCD Society for Research in Child Development SRS social rehabilitation service SSA Social Security Administration SSDI Social Security Disability Insurance SSI Supplemental Security Income STI sexually transmitted infection SUD substance use disorder TA technical assistance TAGG Transition Assessment and Goal Generator TANF Temporary Assistance for Needy Families TEFRA Tax Equity and Fiscal Responsibility Act TWWIIA Ticket to Work and Workforce Incentives Improvement Act of 1999 UCEDD University Centers for Excellence in Developmental Disabilities in Education, Research, and Service UNC University of North Carolina Centers of Excellence UWI University of the West Indies VR vocational rehabilitation WDB Workforce Development Board WHO World Health Organization WIOA Workforce Innovation and Opportunity Act PREPUBLICATION COPY: UNCORRECTED PROOFS

ACRONYMS AND ABBREVIATIONS xxiii YTD Youth Transition Demonstration PREPUBLICATION COPY: UNCORRECTED PROOFS

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Opportunities for Improving Programs and Services for Children with Disabilities Get This Book
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Although the general public in the United States assumes children to be generally healthy and thriving, a substantial and growing number of children have at least one chronic health condition. Many of these conditions are associated with disabilities and interfere regularly with children’s usual activities, such as play or leisure activities, attending school, and engaging in family or community activities. In their most severe forms, such disorders are serious lifelong threats to children’s social, emotional well-being and quality of life, and anticipated adult outcomes such as for employment or independent living. However, pinpointing the prevalence of disability among children in the U.S. is difficult, as conceptual frameworks and definitions of disability vary among federal programs that provide services to this population and national surveys, the two primary sources for prevalence data.

Opportunities for Improving Programs and Services for Children with Disabilities provides a comprehensive analysis of health outcomes for school-aged children with disabilities. This report reviews and assesses programs, services, and supports available to these children and their families. It also describes overarching program, service, and treatment goals; examines outreach efforts and utilization rates; identifies what outcomes are measured and how they are reported; and describes what is known about the effectiveness of these programs and services.

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