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Young Adults and Transitioning Youth with Autism Spectrum Disorder

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Young Adults and Transitioning Youth with Autism Spectrum Disorder 2017 REPORT TO CONGRESS Young Adults and Transitioning Youth with Autism Spectrum Disorder Prepared by the: Department of Health and Human Services Submitted by the: National Autism Coordinator U.S. Department of Health and Human Services Cover Design Medical Arts Branch, Office of Research Services, National Institutes of Health Copyright Information All material appearing in this report is in the public domain and may be reproduced or copied. A suggested citation follows. Suggested Citation U.S. Department of Health and Human Services. Report to Congress: Young Adults and Transitioning Youth with Autism Spectrum Disorder. October 2017. Retrieved from the U.S. Department of Health and Human Services website: https://www.hhs.gov/sites/default/files/2017AutismReport.pdf Young Adults and Transitioning Youth with Autism Spectrum Disorder The Autism Collaboration, Accountability, Research, Education and Support Act (Autism CARES Act) of 2014 REPORT TO CONGRESS Submitted by the National Autism Coordinator of the U.S. Department of Health and Human Services August 3, 2017 Table of Contents Interagency Workgroup on Young Adults and Youth with Autism Spectrum Disorder Transitioning to Adulthood ................................................................................................ iv Steering Committee .................................................................................................... iv Members .................................................................................................................. iv OASH Stakeholder Listening Panel Participants ................................................................. vii Part 1: Background on Autism Spectrum Disorder and the Transition to Adulthood ....................... 1 Introduction to Autism Spectrum Disorder ....................................................................... 2 Scope of Need ........................................................................................................... 2 Population Characteristics ........................................................................................ 2 Trends in Health and Well-being ................................................................................ 4 Transition Needs .................................................................................................... 6 Figure 1. ASD Research Funding by IACC Strategic Plan Question ........................................... 8 Challenges and Barriers to Service .................................................................................. 9 Background for this Report ........................................................................................... 10 Legislation ............................................................................................................ 10 Coordination of Autism Activities ............................................................................... 11 Summary of Background Information .............................................................................. 12 Table 1. Participating Federal Agencies in the Interagency Work Group ................................... 13 Part 2: Federal Agency Activities on Young Adults and Youth with Autism Spectrum Disorder Transitioning to Adulthood ................................................................................... 15 U.S. Department of Health and Human Services ................................................................ 15 Administration for Children and Families (ACF) ............................................................. 15 Administration for Community Living (ACL) ................................................................. 17 Agency for Healthcare Research & Quality (AHRQ) ....................................................... 18 Centers for Disease Control and Prevention (CDC) ......................................................... 19 Centers for Medicare & Medicaid Services (CMS) ......................................................... 19 Health Resources and Services Administration (HRSA) ................................................... 21 Indian Health Service (IHS) ....................................................................................... 23 National Institutes of Health (NIH) ............................................................................. 23 Substance Abuse and Mental Health Services Administration (SAMHSA) ........................... 24 U.S. Department of Defense .......................................................................................... 25 Congressionally Directed Medical Research Programs (CDMRP) ....................................... 25 U.S. Department of Education ....................................................................................... 26 Office of Special Education and Rehabilitative Services (OSERS) ........................................ 26 Office for Civil Rights (OCR) ..................................................................................... 30 Promoting the Readiness of Minors in Supplemental Security Income (PROMISE) ................. 31 Institute of Education Sciences (IES) .......................................................................... 31 Office of Postsecondary Education (OPE) .................................................................... 32 U.S. Department of Housing and Urban Development ......................................................... 32 Section 504 .......................................................................................................... 33 Section 811 Supportive Housing for Persons with Disabilities ............................................ 33 U.S. Department of Justice............................................................................................ 33 Educational Opportunities Section (EOS) ..................................................................... 33 Disability Rights Section (DRS) .................................................................................. 33 II 2017 REPORT TO CONGRESS Special Litigation Section (SPL) .................................................................................. 34 Office of Justice Programs (OJP) ................................................................................ 34 Bureau of Justice Assistance (BJA) ............................................................................. 34 U.S. Department of Labor ............................................................................................. 35 Office of Disability Employment Policy (ODEP) ............................................................. 35 Disability Employment Initiative (DEI) ......................................................................... 36 Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities ....................................................................................... 36 U.S. Department of Transportation ................................................................................. 36 Accessible Transportation Technologies Research Initiative (ATTRI) .................................. 36 U.S. Social Security Administration ................................................................................. 37 Supplemental Security Income (SSI) ........................................................................... 37 Demonstrations of Policies ....................................................................................... 38 Work Supports ...................................................................................................... 38 The 2020 Federal Youth Transition Plan ........................................................................... 38 Summary of Current Federal Investments for Transitioning Youth with ASD ............................ 40 Table 2. Federal Activities by Agency Relevant to Young Adults and Youth with Autism Spectrum Disorder Transitioning to Adulthood .................................................................. 42 Part 3: Stakeholder Perspectives ........................................................................................ 47 OASH Stakeholder Listening Session ............................................................................... 47 Gaps in Research .................................................................................................... 47 Gaps in Services and Programming ............................................................................. 50 Public Comments to IACC ............................................................................................ 52 GAO Roundtable Views of Services Needed ..................................................................... 53 Table 3. Key Services Identified by GAO ........................................................................... 53 Summary of Input from External Stakeholders ................................................................... 54 Part 4: Conclusions and Recommendations .......................................................................... 57 Conclusions .............................................................................................................. 57 A Coordinated, Comprehensive Approach to Services and Support .................................... 57 Support Coordinating Across Systems ......................................................................... 59 Family Support .....................................................................................................
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