2017 Report to Congress
Young Adults and Transitioning Youth with Autism Spectrum Disorder
References
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Appendix 1
Autism CARES Act of 2014, amending Sec. 399DD(b) of the Public Health Service Act
- REPORT ON YOUNG ADULTS AND TRANSITIONING YOUTH.—
- IN GENERAL.—Not later than 2 years after the date of enactment of the Autism CARES Act of 2014, the Secretary of Health and Human Services, in coordination with the Secretary of Education and in collaboration with the Secretary of Transportation, the Secretary of Labor, the Secretary of Housing and Urban Development, and the Attorney General, shall prepare and submit to the Committee on Health, Education, Labor, and Pensions of the Senate and the Committee on Energy and Commerce of the House of Representatives, a report concerning young adults with autism spectrum disorder and the challenges related to the transition from existing school-based services to those services available during adulthood.
- CONTENTS.—The report submitted under paragraph (1) shall contain—
- demographic characteristics of youth transitioning from school-based to community-based supports;
- an overview of policies and programs relevant to young adults with autism spectrum disorder relating to post-secondary school transitional services, including an identification of existing Federal laws, regulations, policies, research, and programs;
- proposals on establishing best practices guidelines to ensure—
- interdisciplinary coordination between all relevant service providers receiving Federal funding;
- coordination with transitioning youth and the family of such transitioning youth; and
- inclusion of the individualized education program for the transitioning youth, as prescribed in section 614 of the Individuals with Disabilities Education Act (20 U.S.C. 1414);
- comprehensive approaches to transitioning from existing school-based services to services available during adulthood, including—
- services that increase access to, and improve integration and completion of, post-secondary education, peer support, vocational training (as defined in section 103 of the Rehabilitation Act of 1973 (29 U.S.C. 723)), rehabilitation, self-advocacy skills, and competitive, integrated employment;
- community-based behavioral supports and interventions;
- community-based integrated residential services, housing, and transportation;
- nutrition, health and wellness, recreational, and social activities;
- personal safety services for individuals with autism spectrum disorder related to public safety agencies or the criminal justice system; and
- evidence-based approaches for coordination of resources and services once individuals have aged out of post-secondary education; and
- proposals that seek to improve outcomes for adults with autism spectrum disorder making the transition from a school-based support system to adulthood by—
- increasing the effectiveness of programs that provide transition services;
- increasing the ability of the relevant service providers described in subparagraph(C) to provide supports and services to underserved populations and regions;
- increasing the efficiency of service delivery to maximize resources and outcomes, including with respect to the integration of and collaboration among services for transitioning youth;
- ensuring access to all services necessary to transitioning youth of all capabilities; and
- encouraging transitioning youth to utilize all available transition services to maximize independence, equal opportunity, full participation, and self-sufficiency.”
Appendix 2
Authorizing Legislation by Agency and Program
Agency | Program Name (FY 2013 to FY 2016) |
Legislative Authority |
---|---|---|
AgencyU.S. Department of Health and Human Services (HHS) |
Program NameInteragency Autism Coordinating Committee (IACC) |
Legislative AuthoritySection 399CC of the Public Health Service Act (42 USC 280i-2), as amended by the Autism CARES Act of 2014 (P.L.113–157) |
AgencyHHS/Administration for Children and Families (ACF) |
Program NameAdoption and Foster Care Analysis and Reporting System (AFCARS) |
Legislative AuthorityTitle IV-E of the Social Security Act (42 USC §679); 45 CFR 1355.40 et seq. |
Program NameNational Child Abuse and Neglect Data System (NCANDS) |
Legislative AuthorityThe 1988 Child Abuse Prevention and Treatment Act (CAPTA), (42 USC §5104) as amended by the CAPTA Reauthorization Act of 2010 (P.L. 111–320) |
|
Program NameNational Youth in Transition Database (NYTD) |
Legislative AuthoritySection 477 of the Social Security Act (42 USC §677) as amended by the Foster Care Independence Act of 1999 (P.L. 106–169); 45 CFR 1356.80 et seq. |
|
Program NameLongitudinal Studies of Child Abuse and Neglect (LONGSCAN) |
Legislative AuthorityThe 1988 Child Abuse Prevention and Treatment Act (CAPTA), (42 USC §5101 et seq.) as amended by the CAPTA Reauthorization Act of 2010 (P.L. 111–320) |
|
Program NameNational Incidence Study of Child Abuse and Neglect (NIS) |
Legislative AuthorityP.L. 93–247; P.L. 98–457 (1984); Child Abuse Prevention, Adoption, and Family Services Act of 1988 (P.L. 100–294); The Child Abuse, Domestic Violence, Adoption and Family Services Act of 1992 (P.L. 102–295); The Keeping Children and Families Safe Act of 2003 (P.L. 108–36) |
|
Program NameNational Survey of Child and Adolescent Wellbeing (NSCAW) |
Legislative AuthorityThe Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (P.L. 104–193) |
|
AgencyHHS/Administration for Community Living (ACL) |
Program NameAdministration on Intellectual and Developmental Disabilities (AIDD) |
Legislative AuthorityDevelopmental Disabilities Assistance and Bill of Rights Act of 2000 (P.L. 106–402) |
Program NameIndependent Living Services (ILS) Program |
Legislative AuthorityTitle VII, Chapter I, Part B of the Rehab Act, as amended by the Workforce Innovation and Opportunity Act of 2014, 29 USC §§796e-796e-3 |
|
Program NameCenters for Independent Living (CILs) Program |
Legislative AuthorityTitle VII, Chapter I, Part C of the Rehab Act, as amended by the Workforce Innovation and Opportunity Act of 2014, 29 USC §§ 796f-796-f-6 |
|
Program NameNational Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) |
Legislative Authority29 USC §§ 760–766 |
|
Program NameState Grants for Assistive Technology Program |
Legislative AuthorityAssistive Technology Act of 1998, as amended by the Assistive Technology Act of 2004 (P.L. 108–364). |
|
Program NameState Protection and Advocacy Systems for Assistive Technology (PAAT) program |
Legislative AuthorityAssistive Technology Act of 1998, as amen |
|
AgencyHHS/Agency for Healthcare Research and Quality (AHRQ) |
Program NameProject: “A Deliberative Approach to Develop Autism Data Collection in Massachusetts” |
Legislative AuthorityTitle IX of the Public Health Service Act (42 USC 299–299c-7) as amended by P.L. 106–129 |
AgencyHHS/Centers for Disease Control and Prevention (CDC) |
Program NameAutism and Developmental Disabilities Monitoring Network (ADDM) |
Legislative AuthoritySection 399AA of the Public Health Service Act (42 USC 280i), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
Program NameStudy to Explore Early Development (SEED) |
Legislative AuthoritySection 399AA of the Public Health Service Act (42 USC 280i), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
|
Program NameNational Health Interview Survey (NHIS) |
Legislative AuthoritySection 399AA of the Public Health Service Act (42 USC 280i), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
|
AgencyHHS/Centers for Medicare & Medicaid Services (CMS) |
Program NameFederal Medicaid program |
Legislative AuthorityTitle XIX of the Social Security Act |
Program NameEarly and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit |
Legislative AuthorityTitle XIX of the Social Security Act |
|
AgencyHHS/Health Resources and Services Administration (HRSA) |
Program NameLeadership Education in Neurodevelopmental and Other Related Disabilities (LEND) |
Legislative AuthoritySection 399BB of the Public Health Service Act (42 USC 280i-1), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
Program NameLeadership Education in Developmental-Behavioral Pediatrics (DBP) |
Legislative AuthoritySection 399BB of the Public Health Service Act (42 USC 280i-1), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
|
Program NameInterdisciplinary Technical Assistance Center (ITAC) |
Legislative AuthoritySection 399BB(e)(2) of the Public Health Service Act (42 USC 280i-1(e)(2)), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
|
Program NameAutism Research Networks Program |
Legislative AuthoritySection 399BB(f) of the Public Health Service Act (42 USC 280i-1(f)), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
|
Program NameR40 Autism Research Program |
Legislative AuthoritySection 399BB(f) of the Public Health Service Act (42 USC 280i-1(f)), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
|
Program NameNational Survey of Children's Health (NSCH)/ National Survey of Children with Special Health Care Needs (NS-CSHCN) |
Legislative AuthoritySection 501(a) of Title V of the Social Security Act |
|
Program NameState Systems Grants |
Legislative AuthoritySection 399BB(b)(6) of the Public Health Service Act (42 USC 280i-1(b)(6)), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
|
Program NameState Public Health Autism Resource Center (SPHARC) |
Legislative AuthoritySection 399BB of the Public Health Service Act (42 USC § 280i- 1), as amended by the Autism CARES Act of 2014 (P.L. 113–157) |
|
Program NameTitle V Maternal and Child Health (MCH) Services Block Grant Program |
Legislative AuthoritySection 501(a) of Title V of the Social Security Act |
|
Program NameGot Transition/Center for Health Care Transition |
Legislative AuthoritySection 502(a)(1) of Title V of the Social Security Act |
|
AgencyHHS/Indian Health Service (IHS) |
Program NameIHS Telebehavioral Health Center of Excellence (TBHCE) |
Legislative AuthoritySnyder Act, 25 USC § 13, and 25 USC § 1665a |
AgencyHHS/National Institutes of Health (NIH) |
Program NameNIMH Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) Initiative |
Legislative AuthoritySections 301 and 405 of the Public Health Service Act as amended (42 USC 241 and 284) and under Federal Regulations 42 CFR Part 52 and 45 CFR Part 75 |
Program NameGrants funded through NIMH and NICHD extramural research programs |
Legislative AuthoritySections 301 and 405 of the Public Health Service Act as amended (42 USC 241 and 284) and under Federal Regulations 42 CFR Part 52 and 45 CFR Part 75 |
|
Program NameProject SEARCH |
Legislative AuthorityA public-private partnership program in which NIH participates; there is no legislative authority for this program, but some of the partner agencies are authorized to deliver services under various legislative authorities |
|
AgencyHHS/Substance Abuse and Mental Health Services Administration (SAMHSA) |
Program NameChild Mental Health Initiative (CMHI) |
Legislative AuthoritySections 561- 565 of the Public Health Service Act, as amended |
Program Name“Now Is The Time” Healthy Transitions Program (NITT-HT) |
Legislative AuthoritySection 520A of the Public Health Service Act, as amended |
|
Program NameNow Is the Time Technical Assistance (NITT-TA) Center |
Legislative AuthoritySection 520A of the Public Health Service Act, as amended |
|
AgencyU.S. Department of Defense (DOD) |
Program NameAutism Research Program (ARP) within the Congressionally Directed Medical Research Programs (CDMRP) |
Legislative AuthorityConsolidated Appropriations Act of 2016 (P.L. 114–113) |
AgencyU.S. Department of Education (ED)/Office of Special Education and Rehabilitative Services (OSERS) |
Program NameIDEA Formula Grant Program |
Legislative AuthorityPart B of the Individuals with Disabilities Education Act (IDEA), 20 USC §§1401, 1411–1419 |
AgencyED/Office of Special Education and Rehabilitative Services (OSERS) |
Program NameIDEA Discretionary Grant Program |
Legislative AuthorityPart D of the Individuals with Disabilities Education Act (IDEA), 20 USC §§ 1450–1482 |
Program NamePromoting the Readiness of Minors in Supplemental Security Income (PROMISE) |
Legislative AuthorityFiscal Year 2012 Consolidated Appropriations Act (P.L. 112–74); the Department of Defense Military Construction and Veterans Affairs and Full-Year Continuing Appropriations Act 2013 (P.L. 113–6); and, the Appropriations Act of 2014. |
|
Program NameVocational Rehabilitation State Grants |
Legislative AuthorityTitle I of the Rehabilitation Act of 1973, as amended by Workforce Innovation and Opportunity Act of 2014, 29 USC §§ 701 - 733 |
|
Program NameAmerican Indian Vocational Rehabilitation Services Program |
Legislative AuthorityPart C of Title I of the Rehabilitation Act of 1973, as amended by Workforce Innovation and Opportunity Act of 2014, 29 USC § 741 |
|
Program NameState Supported Employment Services Program |
Legislative AuthorityTitle VI of the Rehabilitation Act of 1973, as amended by Workforce Innovation and Opportunity Act of 2014, 29 USC §§ 795g – 795m |
|
Program NameRehabilitation Training Program |
Legislative AuthoritySection 302 of the Rehabilitation Act of 1973, as amended by Workforce Innovation and Opportunity Act of 2014, 29 USC § 772 |
|
Program NameDemonstration and Training Programs |
Legislative AuthoritySection 303 of the Rehabilitation Act of 1973, as amended by Workforce Innovation and Opportunity Act of 2014, 29 USC § 773 |
|
Program NameParent Information and Training Program |
Legislative AuthoritySection 303 of the Rehabilitation Act of 1973, as amended by Workforce Innovation and Opportunity Act of 2014, 29 USC § 773 |
|
AgencyED/Office for Civil Rights (OCR) |
Program NameEnforcement of Section 504 which prohibits discrimination on the basis of disability in programs or activities that receive federal financial assistance from ED |
Legislative AuthoritySection 504 of the Rehabilitation Act of 1973, 29 USC § 794 |
Program NameEnforcement of Title II of the ADA non-discrimination on the basis of disability in public elementary, secondary and postsecondary schools |
Legislative AuthorityThe Americans with Disabilities Act of 1990, as amended, 42 U.S.C. §§ 12131–12134 |
|
AgencyED/Institution of Education Sciences (IES)/National Center for Special Education Research (NCSER) |
Program NameIES-NCSER Special Education Research Grants/Transition Outcomes for Secondary Students with Disabilities |
Legislative AuthorityPart E of the Education Sciences Reform Act of 2002, 20 U.S.C. 9567 -9567b |
AgencyED/IES/National Center for Education Evaluation and Regional Assistance (NCEE) |
Program NameIES-NCEE Special Education Studies and Evaluations |
Legislative AuthoritySection 664 of the Individuals with Disabilities Education Act (IDEA), 20 U.S.C. 1464 |
AgencyED/IES/National Center for Education Statistics (NCES) |
Program NameIES-NCES Middle Grades Longitudinal Study |
Legislative AuthorityPart C of the Education Sciences Reform Act of 2002, 20 U.S.C. 9541–9545 |
AgencyED/Office of Postsecondary Education (OPE) |
Program NameModel Transition Programs for Students with Intellectual Disabilities into Higher Education (TPSID) |
Legislative AuthoritySection 767 of the Higher Education Act (HEA) of 1965, as amended, 20 USC 1140g |
AgencyU.S. Department of Housing and Urban Development (HUD) |
Program NameAccessibility for and rights of persons with disabilities with regard to housing |
Legislative AuthorityAmericans with Disabilities Act |
AgencyU.S. Department of Labor (DOL) |
Program NameGuideposts for Success |
Legislative Authority
|
Program NamePathways to Careers Demonstration Grants |
Legislative AuthoritySection 169(c) of the Workforce Innovation and Opportunity Act (P.L. 113–128) |
|
Program NameEmployment First |
Legislative AuthoritySection 609 of the Rehabilitation Act of 1973, as amended by section 461 of Workforce Innovation Opportunity Act (WIOA) |
|
Program NameDisability Employment Initiative (DEI) |
Legislative AuthoritySection 169, subsection (b), of the Workforce Innovation and Opportunity Act (P.L. 113–129) |
|
Program Name2016 Final Report from the Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities |
Legislative AuthoritySection 609 of the Rehabilitation Act of 1973, as amended by Section 461 of the Workforce Innovation and Opportunity Act (WIOA) |
|
AgencyU.S. Department of Transportation (DOT) |
Program NameAccessible Transportation Technologies Research Initiative (ATTRI) |
Legislative AuthoritySection 6002(a) of the Fixing America's Surface Transportation Act of 2015 (FAST Act), (23 USC §516(a)), (P.L. 114–94) |
AgencyU.S. Social Security Administration (SSA) |
Program NameSupplemental Security Income (SSI) |
Legislative Authority42 USC 401–434 and 1381–1383 |
Program NameSocial Security Disability Insurance (SSDI) |
Legislative Authority42 USC 401–434 and 1381–1383 |
Other Federal Policies that May Apply To Young Adults with ASD
The following were also identified by IWG members as federal policies and programs that, as programs targeted to the general population or across disabilities, may also be potentially relevant to youth and young adults with ASD; however, they were not expanded upon in the Report. None of these programs specifically target youth and young adults with ASD but are available to those who meet eligibility criteria.
- The Higher Education Opportunity Act
- Section 1915(i) home and community-based services (HCBS) under the Social Security Act, as amended by the Affordable Care Act (ACA)
- The following parts of the ACA
- Section 2402(a)
- Section 4302 of the ACA on population surveys and data collection by federally funded health and health care programs
- Section 5401 to increase funding to the Centers of Excellence to support health disparities research
- Medicaid expansion
- Denying insurance coverage to people who have pre-existing conditions or charging higher premiums to individuals
- Reauthorization of HHS Office of Minority Health
- No Wrong Door/ADRC (ACL grant program)
- CMS SMDL on Habilitation Services in the State
- Ticket to work
- Medicaid buy-in
- Workforce Innovation and Opportunity Act (WIOA)
- Title I of WIOA authorizes the provision of career planning for eligible individuals. Career planning offers a person-centered approach to coordinate necessary support services before and after job placement.
- Title VII of WIOA (CILS) includes a new core service for Independent Living for Youth with Disabilities not in school. It facilitates the transition of youth who are individuals with significant disabilities, who were eligible for individualized education programs under section 614(d) of the Individuals with Disabilities Education Act (20 U.S.C. 1414(d)), and who have completed their secondary education or otherwise left school, to postsecondary life. (Sec. 7(17)(E) of the Act, 29 U.S.C. 705(17)(E)). Some youth transition activities not covered under the new core services (i.e., for those in school/ not eligible for IEPs, etc.) may be included within the other four core services, Sec. 7 (17) (A-D) of the Act, 29 U.S.C. 705(17)(A-D), as well as within the Independent Living Services in Sec. 7(18), 29 U.S.C. 705(18).