Source: https://iacc.hhs.gov/publications/report-to-congress/2017/activities.shtml
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Matched Legal Cases: ['art 2', 'art 2', 'art 1', '§300', '§ 35', '§ 8', 'art 4']

Report to Congress 2017 - Federal Agency Activities on Young Adults and Youth with Autism Spectrum Disorder Transitioning to Adulthood - ASD Progress and Expenditures | IACC
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Part 2: Federal Agency Activities on Young Adults and Youth with Autism Spectrum Disorder Transitioning to Adulthood
This part of the Report describes the current federal research, policies, and programs related to the transition period from adolescence to adulthood for persons with ASD. Table 2 provides a summary of these identified federal research, training, and service programs relevant to transition-age youth with ASD, by agency.
It is important to note that many of these programs are not designed specifically to serve or fund research focused on individuals with ASD; however, as general population programs, or as efforts targeted broadly to people with disabilities, these programs do inevitably serve or include transitionage youth and young adults with ASD. Depending on the fundamental goals of the program, they may or may not track ASD status among those they serve or study. It is, thus, not currently possible to know how many youth and young adults with ASD are receiving services and supports from each specific agency.
Information regarding each of these programs follows. An overview of this information is presented in Table 2 at the end of Part 2. Federal policies and legislation that authorize these programs are found in Appendix 2.
The majority of health-related federal research, programs, and services targeted to individuals with ASD are administered through the U.S. Departmentof Health and Human Services (HHS), which has as its mission enhancing and protecting the health and well-being of all Americans. Youth and young adults with ASD may, depending on eligibility requirements, benefit from, and/or participate in, supports and services provided by these programs, either with their families or as individuals. HHS includes 11 operating divisions, nine of which administer programs relevant to this report:
This operating division promotes the social and economic health and well-being of the nation's children and families. ACF collects data through three mechanisms about children/youth in the foster care system where child welfare agencies are required through Title IV-E of the Social Security Act to submit data. However, there are no ACF-sourced metrics that track the number of children/youth in the U.S. foster care and/or the larger child protection and welfare systems who have been diagnosed with Autism/ASD. Nevertheless, valuable information about those involved in ACF programs is provided through ACF reports.
The Adoption and Foster Care Analysis and Reporting System (AFCARS) collects case-level information from state and tribal IV-E (i.e., child protection and welfare) agencies on all children in foster care and those who have been adopted with Title IV-E agency involvement. Examples of data reported in AFCARS include demographic information on the child in care as well as the foster/adoptive parents, the number of removals the child may have experienced, and the current placement setting. ASD is included in a data element called “Other Medically Diagnosed Condition,” and is not specifically identified in the collection of AFCARS data.
The National Child Abuse and Neglect Data System (NCANDS) is a voluntary data collection system that gathers information from all 50 states, the District of Columbia and Puerto Rico about reports of child abuse and neglect. Key findings are published in the Child Welfare Outcomes Reports to Congress and in the annual Child Maltreatment reports. There are no data elements that specifically track whether clients have been diagnosed with Autism/ASD.
The National Youth in Transition Database (NYTD) collects information on youth in foster care including demographic characteristics and the outcomes of youth that have aged out of the child welfare system. This tracking system began in 2010, and the first data were reported in May 2011. States are to collect information in a manner consistent with federal law on each youth who receives independent living services paid for or provided by the state agency that administers the John H. Chafee Foster Care Independence Program (CFCIP) of section 477 of the Social Security Act. States also collect demographic and outcome information on youth in foster care whom the state will follow over time. This information allows ACF to track which independent living services States provide and to assess the outcomes of those participating youth. There is one data element that addresses whether or not a youth received a special education service§§§; however, there is no particular information about a youth’s specific diagnosis.
Three Major Data Collection Projects have been funded in whole or in part by ACF. The data can be accessed through the National Data Archive on Child Abuse and Neglect.
The Longitudinal Studies of Child Abuse and Neglect (LONGSCAN) involved a consortium of research groups initiated in 1990 with grants from the ACF Children’s Bureau and coordinated through the University of North Carolina Injury Prevention Research Center. LONGSCAN is a multi-site longitudinal study of 1354 children identified in infancy or early childhood as being maltreated or at risk of maltreatment. The children who were included in the study were culturally and ethnically diverse and from five distinct geographical areas. Maltreatment data were collected from multiple sources and yearly telephone interviews were conducted. This data set did not specify whether a child had been diagnosed with Autism/ASD.
The National Incidence Study of Child Abuse and Neglect (NIS) has been conducted approximately once each decade beginning in 1974 in response to requirements of the Child Abuse Prevention and Treatment Act. There are four years of data available: 1980 (NIS-1), 1987 (NIS-2), 1996 (NIS-3), and 2006 (NIS-4). NIS studies are designed to estimate more broadly the incidence of child maltreatment nationally. A unique contribution of the NIS has been the use of a common definitional framework for classifying children according to types and severity of maltreatment. Information specifically about Autism/ASD is not collected.
The National Survey of Child and Adolescent Well-Being (NSCAW) contains information about Autism/ASD. NSCAW is a nationally representative, longitudinal survey of children and families who have been the subjects of investigation by Child Protective Services. There have been two cohorts of children enrolled in the survey, which includes data from reports by children, parents, and caregivers; reports from caseworkers and teachers collected in a manner consistent with federal law; and reviews of administrative records. NSCAW also examines child and family well-being outcomes in detail and seeks to relate those outcomes to experience with the child welfare system and to family characteristics. This dataset represents the child welfare population in states that do not require first contact with agencies in order to participate in research studies. The prevalence rate of ASD was 3 percent, or approximately double what it is (1.47 percent) in the general child population according to CDC’s surveillance system (See Part 1). It should be noted that the NSCAW is a survey rather than a surveillance system, and as such uses parent self-report rather than diagnostic evaluation to determine the presence of ASD. However, using a similar self-report methodology, the 2011–2012 National Survey of Children’s Health (NSCH, 2011–2012vii) reported a national prevalence rate of currently diagnosed children with ASD of 1.8 percent, much closer to the official estimate of 1.47 percent derived from CDC’s epidemiological surveillance system. Thus, compared to a data source that also employs parent self-report of diagnosed ASD, the rate of ASD found among children tracked through the nation’s child protective service system is still two-thirds higher than the rate reported in the general population.
The ACL works to increase access to community support systems for older Americans and for people with disabilities across the lifespan. Its main activities and statutory authorities include administration of disability programs that support community living from which young adults with ASD may benefit.
The Administration on Intellectual and Developmental Disabilities (AIDD) administers programs under the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (the DD Act). This Act was authorized to ensure that individuals with developmental disabilities and their families participate in the design of, and have access to, needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life through culturally competent programs authorized under the law. These programs include:
University Centers for Excellence in Developmental Disabilities Education (UCEDD) Research and Service
The Rehabilitation Act of 1973 as amended in 2014 by WIOA, authorizes the following programs:
The Independent Living Services (ILS) Program provides 63 formula grants, based on population, to states and territories to fund independent living services programs and activities for individuals with significant disabilities.
The The Centers for Independent Living (CILs) Program provides 356 discretionary grants to centers that are consumer-controlled, community-based, cross-disability, nonresidential, private nonprofit agencies to provide independent living services to individual with significant disabilities. One of the Core Services for these centers added under WIOA is the transition to adulthood among youth with significant disabilities aged 14 to 24, who were eligible for an Individualized Education Program (IEP), and who have completed their secondary education or otherwise left school.
The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) funds research on disability and rehabilitation. NIDILRR’s mission includes: (a) generating and promoting the use of new knowledge in order to enable people with disabilities to perform activities of their choice in the community, and (b) expanding society’s capacity to provide full opportunities and accommodations for its citizens with disabilities.
The Assistive Technology Act of 1998 amended in 2004, helps make assistive technology available to people with disabilities so they can more fully participate in education, employment, and other daily activities as full members of their communities. The law covers people of all ages and types of disabilities, and in all environments, including in school and at work.
The State Grant for Assistive Technology Program supports state efforts to improve the provision of assistive technology to individuals with disabilities of all ages through comprehensive, statewide programs that are consumer responsive. The State Grant for Assistive Technology Program makes assistive technology devices and services more available and accessible to individuals with disabilities and their families. The program provides one grant to each of the states, the District of Columbia, Puerto Rico, and territories (American Samoa, the Commonwealth of the Northern Mariana Islands, Guam, and the U.S. Virgin Islands). The State Grant for Assistive Technology Program is a formula-based grant program, and thus there are no grant competitions. The amount of each state’s annual award is based largely on state population.
The State Protection and Advocacy for Assistive Technology (PAAT) Program provides protection and advocacy services to assist individuals of all ages with disabilities in the acquisition, utilization or maintenance of assistive technology services or devices. ACL provides formula grants to Protection and Advocacy agencies established under the Developmental Disabilities Assistance and Bill of Rights Act.
AHRQ produces evidence for the nation focused on health care safety and quality. This HHS operating division supports the following project with direct relevance to young adults and transitioning youth with ASD:
"A Deliberative Approach to Develop Autism Data Collection in Massachusetts" is a health services research grant funded in 2016 that involves a deliberative citizen jury, the majority of which are individuals on the autism spectrum, to provide guidance to the Massachusetts Executive Office of Health and Human Services regarding the creation of a statewide registry for ASD. A patient registry is a collection of standardized information about a group of patients who share a particular condition or experience. When complete, the registry will provide an integrated data system to track diagnosis, treatment, services, and outcomes for individuals with ASD, with the long-term goal of improving coordination of care and disseminating information on best practices. Although not specifically targeted to transitionage youth and young adults, it will, when completed, provide a way to track services and outcomes for this population in Massachusetts.
The CDC protects the health of the U.S. population through surveillance activities and large- responses to significant disease threats. The Children’s Health Act of 2000 mandated that CDC establish autism surveillance and research programs to address the number, incidence, correlates, and causes of ASD and related developmental disabilities.
The Autism and Developmental Disabilities Monitoring Network (ADDM) is overseen by CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD). The purpose of ADDM is to estimate the prevalence of autism among children living in select communities. ADDM has conducted autism surveillance on 8-year-old children who were born in 1992, 1994, 1996, 1998, 2000, 2002, and 2004; children who were born in 1994, 1996, 1998, and 2000 are now between 16 and 24 years of age, and thus may provide a useful source of information for additional research efforts on transition age youth and young adults with ASD. ADDM continues to monitor and report, biannually, the estimated prevalence of autism in network sites throughout the United States.
The Study to Explore Early Development (SEED) is a multi-site, case-control study designed to assess risk factors for children with ASD aged 2–5 years, and characterize behavioral, developmental, and medical features of ASD with the goal of defining potentially etiologically distinct ASD subtypes. In 2007, NCBDDD funded six sites to conduct the first phase of SEED. In 2017, the oldest children enrolled in the first phase of SEED will reach adolescence. The SEED Teen study, which is currently under development, seeks to investigate the health and functioning, healthcare utilization, and educational attainment, of children 12–15 years old with ASD, as compared to those without ASD, as well as family impacts of having a child with ASD.
The National Health Interview Survey (NHIS) provides information on the health of the civilian noninstitutionalized population of the U.S., and is one of the major data collection programs of CDC’s National Center for Health Statistics (NCHS). The NHIS was authorized through the National Health Survey Act of 1956, and its data are used to monitor trends in illness and disability; track progress toward achieving national health objectives; identify barriers to accessing and using appropriate health care services; and evaluate federal health programs.
CMS is committed to strengthening and modernizing the nation’s health care system to enhance quality, accessibility and improved outcomes in the most cost effective manner possible.
The Federal Medicaid program is a state-federal partnership in which Medicaid provides health coverage to millions of Americans, including eligible low-income adults, children, pregnant women, elderly adults and people with disabilities. Medicaid is administered by states, according to federal requirements. The program is funded jointly by states and the federal government. Each state has a Medicaid State Plan where the state sets forth its coverage of certain mandatory and optional eligibility groups and mandatory and optional services.
Medicaid’s Early and Periodic Screening, Diagnostic and Treatment (EPSDT) requires the states to provide medically necessary services authorized in section 1905(a) of the Social Security Act to Medicaid beneficiaries under the age of 21. This benefit requires screening services as well as physical, mental, vision, hearing, and dental services for persons under age 21 that are needed in order to correct or ameliorate a physical or mental condition.
Medicare is the federal health insurance program for people who are 65 or older, certain younger people with disabilities, and people with End- Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant).
The Children’s Health Insurance Program (CHIP) provides health coverage to eligible children, through both Medicaid and separate CHIP programs. CHIP is administered by states, pursuant to federal requirements.
The Medicaid Health Home State Plan Option authorized under the Affordable Care Act (Section 2703), allows states to design Health Homes to provide comprehensive care coordination for Medicaid beneficiaries with chronic conditions. States will receive enhanced federal funding during the first eight quarters of implementation to support the roll out of this new integrated model of care; thereafter they will receive their regular service match rate.¶¶¶ Health Home services include 1) Comprehensive Care Management; 2) Care Coordination and Health Promotion; 3) Comprehensive Transitional Care, including appropriate follow-up, from inpatient to other settings; 4) Patient and Family Support (including authorized representatives); 5) Referral to Community and Social Support Services, if relevant; and 6) use of health information technology to link services, as feasible and appropriate. CMS guidance indicates services must be person and family-centered, include self-management support to individuals and their families, and provide access to individual and family support services. Individual and family supports could include providing caregiver counseling or skills to help the individual improve function, obtaining information about the individual’s disability or conditions, and navigating the service system. In addition, individual and family supports help families identify resources to assist individuals and caregivers in acquiring, retaining, and improving self-help, socialization, and adaptive skills and provide information and assistance in accessing services such as self-help services, peer support services, and respite services. These supports and services are available to those who meet the eligibility requirements, including youth and young adults with ASD.
Additional Autism-related Policies have been published on the CMS website.
The Center for Medicaid and CHIP Services has published information on Medicaid home and community based services including guidance. States may provide HCBS optionally to certain populations, and they manage their own waiting lists. CM S is available to provide technical assistance to states on the various coverage authorities for treatment of ASD, including state plan and HCBS waiver authorities.
Recent CMS guidance on the implementation of the Community First Choice State Plan Option a home and community-based benefit package available to states to promote community integration, can be found online.
CMS offers information about person-centered planning on its website.
States may also offer Medicaid Health Homes as an optional benefit, to provide care coordination for beneficiaries with certain chronic conditions.
Some mental health services are available through Medicare.
HRSA focuses on improving health equity among all Americans through access to care and a skilled health workforce, with special consideration for underserved populations. Through its Maternal and Child Health Bureau, HRSA supports the following programs and initiatives to address ASD through education, early detection, and intervention:
The Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) grant program provides medical, allied health professionals, family members, and self-advocates with interdisciplinary, graduate-level training that emphasizes family-centered care, the medical home, and lifespan issues. The primary goal of LEND is to train health professionals to improve the health of children who have, or are at risk of developing, neurodevelopmental disabilities including ASD. LEND programs may include activities focused on transition activities for youth with ASD and other developmental disabilities.
The Leadership Education in Developmental-Behavioral Pediatrics (DBP) program trains developmental-behavioral pediatricians (i.e., fellows), pediatricians and primary care providers, and other health and allied health professionals through its training and continuing education programs. DBP training programs provide didactic and clinical-based training and continuing education events on all aspects of care for children and adolescents with ASD, including transition from pediatric to adult care and services. DBP grantees support activities related to transition for youth with ASD and other developmental and behavioral issues in a variety of ways, including providing training and technical assistance on transition to families, community service providers, adolescent and adult medical providers, educational institutions; developing resources on transition, and conducting research on transition.
The Interdisciplinary Technical Assistance Center (ITAC) supports LEND and DBP programs by providing technical assistance, disseminating information and resources, and promoting collaboration among Autism CARES grantees.
The Autism Research Networks Program funds five interdisciplinary research networks that serve to connect leaders in ASD research with health care providers, policy makers, and children and their families. The Networks form a common research platform for identifying autism research priorities, conducting ASD research, building capacity by mentoring junior researchers in the field, developing toolkits for parents and providers and guidelines for standards of care, increasing public awareness, and improving ASD service delivery. Of the five research networks receiving funds from 2014 through 2016, two have covered transition topics through their research studies and research-related activities.
The R40 Autism Research Program supports field-initiated empirical research through two funding mechanisms that together advance the evidence base on the health and well-being of children and adolescents with ASD with a special focus on underserved populations. The R40 Autism Field-Initiated Innovative Research Studies (Autism FIRST) Program supports research on interventions designed to improve health and healthcare service delivery systems. The R40 Autism Secondary Data Analysis Research (Autism- SDAR) Program funds secondary analysis studies using existing national databases. Among the 22 R40 Autism Research grantees first funded in 2013 to 2015, three projects focused on transition for youth with ASD.
Both the 2009–2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) and the 2011-2012 National Survey of Children’s Health (NSCH) include measures of the health and well-being, including transition planning, for adolescents with ASD. The national surveys identify households with one or more children under 18 years old. The NS-CSHCN and the NSCH are being redesigned and will become a single survey that will be conducted annually. Both the content and methodology of this combined survey have been refined in 2016 to ensure that it meets future needs of data users. The first public release of data is scheduled for summer 2017.
The State Systems Grants support efforts to build more comprehensive, coordinated State-based systems of care for individuals with ASD, with a special emphasis on medically underserved populations. Although the state grants focus primarily on early identification of ASD and placement in early intervention services, at least 5 of the 14 state grantees active between 2014 and 2016 reported activities related to transition for youth with ASD.
The State Public Health Autism Resource Center (SPHARC) provides ongoing technical assistance to the state grantees funded under the 2014 Autism CARES Act and facilitates collaboration and coordination among the state grantees and other Autism CARES program areas.
The Title V Maternal and Child Health (MCH) Services Block Grant Program (Section 501(a) of Title V of the Social Security Act) intends “to improve the health of all mothers and children consistent with the applicable health status goals and national health objectives….” Administered through well-established Federal/State partnerships, States have broad discretion in implementing programs that meet their specific priority needs. The MCH Block Grantees are public health programs that are responsible for assessing needs in their state for the entire MCH population and prioritizing programs to meet those needs. States and jurisdictions use their Title V funds to design and implement a wide range of MCH and Children with Special Health Care Needs (CSHCN) activities.
The Got Transition/Center for Health Care Transition Improvement is a cooperative agreement between HRSA and the National Alliance to Advance Adolescent Health. Focused on special health care needs broadly, Got Transition has developed clinical resources on transition from pediatric to adult health care, including the Six Core Elements of Transition (6 core elements) that define the basic components of transition support. These core elements, available in English and Spanish, are consistent with 2011’s “Clinical Report on Health Care Transition,” which was jointly developed by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians. The 6 core elements have been shown to be an effective quality improvement intervention model.
IHS administers health programs and services for American Indians and Alaskan Natives.
The IHS Telebehavioral Health Center of Excellence (TBHCE) provides technical assistance, implementation, training, and evaluation support for remote health care, and serves isolated American Indian/Alaska Native (AI/ AN) communities and areas with limited or no access to behavioral health services. The TBHCE is consolidating the Indian Children’s Program and revitalizing its national scope. The role of the TBHCE is to support providers via education, consultation, and other learning resources. This includes national training on Autism, Fetal Alcohol Spectrum Disorders, Pervasive Developmental Disorders, Intellectual Deficits, Childhood Traumatic Brain Injury, Learning Disorders, and others. These trainings are available to any providers and have free continuing medical education units (CME)/continuing education units (CEU) attached. The TBHCE also provides free, biweekly, pediatric neuropsychological consultation for any IHS, Tribal, or Urban provider encountering these issues.
The IHS Indian Children’s Program conducts ASD-focused provider education through the TBHCE, including bi-weekly provider consultation for ASD and other neurobiological issues as well as ongoing care across the lifespan for those with ASD.
NIH is the nation’s medical research agency.
The National Institute of Mental Health (NIMH) funds a small portfolio of research grants related to individuals on the autism spectrum in the period from youth transitioning to adulthood. Several grants within this portfolio are part of a special program targeting this area. The 2013 update of the IACC Strategic Plan for Autism Spectrum Disorder Research identified access to and effectiveness of ASD services as a research priority, with a particular emphasis on the needs of transition-age youth and adults. In response, NIMH issued the Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) Request for Applications (RFA), which solicited pilot studies to develop and preliminarily test such services, with an emphasis on creating strategies that are deliverable and effective in diverse communities and care systems. In 2014, the institute funded seven pilot studies of service delivery models for these age groups. It is anticipated that, after completion of this pilot work, the principal investigators will apply for support to conduct full scale tests of effectiveness of the new service strategies, with studies structured to enable rapid dissemination and implementation of the services that show positive outcomes. Among these seven projects, four are focused on developing service strategies that will plan and support the transition from secondary school to adult service systems, and three on developing and testing strategies to establish and maintain engagement in community support, achieve vocational and employment success, improve social functioning, and other services aimed at supporting independent living. To address the ongoing need for empirically based service models, NIMH re-issued the RFA in 2016 and is now in the process of funding five additional pilot studies.
In addition to the projects supported under the NIMH ServASD initiative, NIH also supports four other projects that focus on young adults with autism transitioning to adulthood. In 2015, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) began funding a prospective longitudinal study focused on accurately describing ASD in adulthood as well as the transition to adulthood, and to identify mechanisms that contribute to positive and negative outcomes in individuals with ASD and their families. NIMH supports three other projects that address transitioning to adulthood for young adults with ASD. Topics addressed in these grants include: examining how biological stress response combines with behavioral functioning and environmental resources to influence the transition to adulthood and positive outcomes for young adults with ASD; testing the effectiveness of a school-based intervention targeting executive function in college-bound youth with ASD; and development and evaluation of a skill-building resource to support teens with autism on relationship skills and dating.
In addition to the above projects focused on transitioning youth and adults with ASD, NIH funds cross-disability programs for transition-age youth, including ASD. In 2010, NIH became a site for the international Project SEARCH (PS) program, a public-private partnership program that includes support by private organizations as well as government partners. This is a one-year Transition Program for young adults with intellectual and developmental disabilities who are either in their last year of high school or are recent high school graduates. The program helps individuals develop the tools necessary for employment, as well as skills needed for self-determination, management and self-advocacy. Project SEARCH is a unique, business-led program and takes place entirely at the workplace. Total workplace immersion facilitates a seamless combination of classroom instruction, career exploration, and hands-on training through worksite rotations. The primary objective is for these young people to be “employment ready” upon graduation from the program. This means they have demonstrated the skills and abilities to secure paid employment. Since NIH began participating in this program in 2010, 17 NIH institutes have been involved as training worksites and 8 have hired graduates upon completion of the program. Project SEARCH does not subdivide data by diagnosis of ASD, but nationally, 50–70 percent of transition age youth who graduate from Project SEARCH have been diagnosed with ASD.
SAMHSA works to advance the behavioral health of the nation through reducing the impact of substance abuse and mental illness on America’s communities.
The Child Mental Health Initiative (CMHI), commonly referred to as the "System of Care" grant program, intends to improve behavioral health outcomes for children and youth (0–21 years of age) with serious emotional disturbances (SED) and their families. Since 2011, cooperative agreements have focused on the wide-scale operation, expansion, and integration of the system of care approach by creating sustainable infrastructure and services. Grantees are required to support the provision of mental health and related recovery support services to children and youth with SED and those with early signs and symptoms of serious mental illness, and their families. Activities include development of sustainable financing and cross-agency collaboration; creation of policy and infrastructure; development and implementation of evidence-based and evidence-informed services and supports; and capacity for training and workforce development. Since its inception in 1993, 331 cooperative agreements have been awarded to states, tribes, territories, and local jurisdictions. Currently, SAMHSA funds 91 grantees with four-year awards (awarded in 2013, 2014, 2015, and 2016).
The "Now Is The Time" Healthy Transitions Program (NITT-HT) intends to improve access to treatment and supportive services for youth and young adults aged 16–25 that either have, or are at risk of developing, a serious mental health condition. SAMHSA has awarded NITT-HT grants to 16 states to provide outreach and engagement processes, as well as access to effective clinical and supportive interventions, for youth and young adults with, or at risk of developing, serious mental health conditions, or co-occurring mental health and substance use disorders. The Now Is the Time Technical Assistance (NITT-TA) Center provides training and technical assistance (T-TA) for NITT-HT grantees.
Additional Information about CMHI and NITT-HT
Both the CMHI and NITT-HT programs serve youth with a co–occurring diagnosis of at least one SED and ASD. For CMHI, 2.7 percent of all youth served fall into this category. Of these 958 youth, all were enrolled in communitybased service programs, with roughly 21 percent being referred from school and early education programs.
All NITT-HT sites are required to have a transition team that coordinates a seamless transition of services for youth and young adults. These teams maximize coordination between provider agencies, youth and family organizations, and educational and vocational institutions, and support the sharing of resources between systems. Similarly, the CMHI sites are required to develop governance structures that are comprised of service providers, family organizations and youth groups.
The NITT-HT serves youth and young adults ages 16–25 and CMHI program serves youth ages 0–21. Within the CMHI program some Grantee communities have chosen to focus on youth and young adults of transition age. As such, these programs require linkages to comprehensive services such as post-secondary education programs, peer support services, vocational training and other services needed by the participating youth. However, because the funding for these programs is tied specifically to SEDs, youth and young adults must have co-occurring diagnoses in order to receive services. When youth do not have co-occurring diagnoses and only have an ASD diagnosis, they are referred to appropriate services within the community.
The CDMRP is within the Department of Defense (DoD) and originated in 1992 via a Congressional appropriation to foster novel approaches to biomedical research.
The Autism Research Program (ARP) within the CDMRP funds innovative research designed to advance the understanding of ASD, leading to improved outcomes. One of the nine areas of interest (psychosocial research) of the ARP funds studies investigating factors that promote success in key transitions to independence for individuals living with ASD. Other areas of research include behavioral interventions, pharmaceutical interventions, biological and infectious risk factors, biomarkers, family well-being, complementary and alternative medicine, heterogeneity/subgrouping, and co-occurring conditions.
The U.S. Department of Education (ED) promotes the achievement and preparation of U.S. students by fostering educational excellence and ensuring equal access to education. To meet these goals, two offices within ED (OSERS and OPE) support programs that help educate children and youth with disabilities and provide for the rehabilitation of youth and adults with disabilities, respectively. Another office within ED (IES) supports independent research to improve the lives of individuals with disabilities, and a fourth office (OCR) has enforcement responsibility to protect individuals with disabilities against discrimination.
OSERS supports programs that assist States and school districts in educating children and youth with disabilities, provides for the rehabilitation of youth and adults with disabilities, and supports discretionary grant programs to improve the lives of individuals with disabilities. Through its two main components, the Office of Special Education Programs (OSEP) and the Rehabilitation Services Administration (RSA), OSERS guides and supports a comprehensive array of programs and projects that support individuals with disabilities, including individuals with ASD. OSEP administers the Individuals with Disabilities Education Act (IDEA), and RSA administers the Rehabilitation Act of 1973, as amended by the Workforce Innovation and Opportunity Act of 2014 (WIOA).
The Individuals with Disabilities Education Act (IDEA) Part B, consists of the Grants to States and Preschool Grants Programs. Under IDEA Part B, States and school districts must identify, locate, and evaluate children with disabilities, as defined in 34 CFR §300.8 of the Part B regulations, who need special education and related services, regardless of the severity of their disability, and must make a free appropriate public education (FAPE) available to all eligible children. FAPE includes special education and related services, provided at no cost to the parents, in conformity with an individualized education program (IEP). Autism is one of the 13 disability categories under IDEA. The IEP is a written document developed, reviewed, and revised at a meeting of the IEP Team, which includes the student’s parents along with school officials, and the student, whenever appropriate. The IEP includes, among other information, the special education, related services, and other supports that the child requires in order to receive FAPE. Under IDEA, beginning with the first IEP to be in effect when the child turns 16, and updated annually thereafter, a student’s IEP must include appropriate measurable postsecondary goals based upon age appropriate transition assessments related to training, education, employment, and, where appropriate, independent living skills; and the transition services (including courses of study) needed to assist the student in reaching those goals. 20 U.S.C. 1414(d)(1)(A)(i)(VIII). Under 34 CFR 300.320(b) of the IDEA Part B regulations, postsecondary goals and the transition services needed to assist the child in reaching those goals could be included in the IEP of IDEA-eligible students younger than age 16, if determined appropriate by the IEP Team.
Part D (National Activities to Improve Education of Children with Disabilities) of the IDEA authorizes discretionary grants for evaluation activities to support better implementation and assessment outcomes, demonstrations, technical assistance and dissemination, technology and personnel development, and parent-training and information centers. These grants are designed to improve early intervention, educational, and transitional results for children with disabilities, as well as to help state and local educational agencies strengthen their educational systems for children with disabilities.
Personnel Preparation in Special Education provides grants that prepare master’s-level personnel (special educators, related services providers) to serve children with disabilities. Applicants may choose to focus their preparation on autism. From FY2014 through FY2016, OSEP funded four grants that specifically focused on preparing personnel to support youth with autism to transition from school-based services to postsecondary goals.
The Autism Focused Intervention and Resource Modules (AFIRM) project has recently released 15 new learning modules. The AFIRM modules are designed to help practitioners learn the step-by-step process of planning for, using, and monitoring evidence-based practices of children with ASD from birth to 22 years of age. The AFIRM modules, available for free, include case examples that demonstrate the evidence-based practice in use and interactive assessments, so learners can assess their understanding of the content.
The Center for Parent Information and Resources, and the Parent Technical Assistance Centers (PTACs) provide families with information regarding a range of topics related to the educational, developmental, and transitional needs of their children with disabilities, including the range, type, and quality of options, programs, services, technologies, practices and interventions. PTIs provide information as requested by families to help them support the transition of all youth with disabilities, including those with ASD, from school-based services to postsecondary options. Additionally, PTIs support youth, including youth with ASD, in building their self-advocacy skills. The Center for Parent Information and Resources developed an inter-related series of parent guides, “Getting Ready for When Your Teen Reaches the Age of Majority,” regarding the transition to adult life. Although not specific to youth with autism, the series addresses the development of independent decision-making in youth with disabilities as they and their parents navigate the age of majority and legal adulthood. The series covers decision-making generally and in more detail regarding finances, independent living, and health. ED’s document, "A Transition Guide to Postsecondary Education and Employment for Students and Youth with Disabilities," revised May 2017, is also available for use as a resource.
The Rehabilitation, as amended by WIOA in 2014, seeks to empower individuals with disabilities to maximize employment, economic self-sufficiency, independence, and inclusion in and integration into society. Through several different programs discussed below, the Rehabilitation Act supports comprehensive and coordinated vocational rehabilitation for individuals with disabilities through direct services, training and technical assistance to VR personnel, model demonstration projects, and parent training centers.
The State Vocational Rehabilitation Services Program provides formula grants to States to support a wide range of vocational rehabilitation services designed to help individuals with disabilities, including students and youth with disabilities, prepare for and engage in gainful employment consistent with their strengths, resources, priorities, concerns, abilities, capabilities, interests, and informed choice. The program authorizes a continuum of services, such as pre-employment transition services, transition services, job placement services, other vocational rehabilitation (VR) services, and supported employment services for students and youth with disabilities, including those with autism, as appropriate, to obtain competitive integrated employment. Eligible individuals are those who have a physical or mental condition that results in a substantial impediment to employment, who can benefit from VR services for employment, and who require VR services to achieve an employment outcome. Priority is given to serving individuals with the most significant disabilities. Youth with ASD may meet eligibility criteria for VR services. In FY 2015, 10,317 individuals with ASD between ages 16 and 24 received VR services.
Pre-employment transition services a	are offered through VR as an early start in preparing students with disabilities, who are eligible or potentially eligible for VR services, for the transition from school to work, including obtaining knowledge and experiences that will help inform their postsecondary education, training, and employment choices. Eligible students are those who are not younger than the earliest age for the provision of transition services under the IDEA (16 years old) or if the State elects a lower minimum age for the provision of pre-employment transition services, not younger than that minimum age and not older than 21 years old or if the State provides for a higher maximum age for the receipt of services under IDEA, not older than that maximum age, and is eligible for and receiving special education and related services under Part B of IDEA or is a student who is an individual with a disability for purposes of section 504. Pre-employment transition services include: job exploration counseling; work-based learning experiences, which may include in-school or after school opportunities, or experience outside the traditional school setting (including internships) provided in an integrated environment to the maximum extent possible; counseling on opportunities for enrollment in comprehensive transition or postsecondary educational programs at institutions of higher education; workplace readiness training to develop social skills and independent living; and instruction in self-advocacy, (including instruction in person-centered planning), which may include peer mentoring. Students may also receive group services prior to or after submitting an application for VR services that increase the student’s opportunities to participate in activities, such as group tours of universities and vocational training programs; employer site visits to learn about career opportunities; and career fairs coordinated with workforce development and employers.
Individualized transition services or other individualized VR are available to youth or young adults with ASD after they have been determined eligible for VR services, under an approved individualized plan for employment (IPE). Transition services are outcome-oriented services designed to facilitate the movement from the receipt of services from schools to the receipt of services from VR agencies, and/ or as appropriate, other state agencies. Transition services are also designed to facilitate movement towards post-school activities, including postsecondary education and vocational training that lead to employment outcomes in competitive integrated employment or supported employment. Examples of transition services provided in accordance with an approved IPE include travel expenses, vocational and other training services, employment development activities, job search and placement services, and job coaching. When developing the IPE, the student or youth with the disability may choose from any employment goal that meets the definition of an “employment outcome” for purposes of the VR program. This means the employment goal must be one in competitive integrated employment (including customized employment and self-employment) or supported employment.
The Supported Employment for Individuals With the Most Significant Disabilities, Title VI-B State Grants provides grants to assist states in developing and implementing collaborative programs with appropriate entities to provide programs of supported employment services for individuals, including youth, with the most significant disabilities who require supported employment services to achieve employment outcomes. Supported employment is competitive integrated employment, including customized employment, or employment in an integrated work setting in which an individual with a most significant disability is working on a short-term basis toward competitive integrated employment that is individualized and customized, consistent with the strengths, abilities, interests, and informed choice of the individual. Supported employment is for individuals with most significant disabilities for whom competitive integrated employment has not historically occurred, or for whom competitive integrated employment has been interrupted or intermittent as a result of a significant disability and who, because of the nature and severity of their disability, need intensive supported employment services and extended services after transitioning from supported employment. Supported employment services are based on a determination of the needs of an eligible individual as specified in an Individualized Plan for Employment (IPE) and are provided by the state VR agency for a period of not more than 24 months, except that period may be extended, if necessary, in order to achieve the employment outcome identified in the IPE. A key supported employment service is job coaching. A job coach provides intensive training and other support to an individual to learn and remember job tasks, expected work behaviors and to develop positive working relationships with their co-workers. Other supported employment services may include transportation, or services outside of the job relating to attendance or arriving to work on time.
The American Indian Vocational Rehabilitation Services (AIVRS) program (Title I, Section 121) is a discretionary grant program in which the Department of Education makes grants to the governing bodies of Indian Tribes located on federal and state reservations (and consortia of such governing bodies) to pay 90 percent of the costs of vocational rehabilitation services for American Indians who are individuals with disabilities living on or near such reservations. The grants are made for a period of 5 years, and applications of grantees that have been previously funded under the program receive priority consideration. These grants allow tribal governments to serve American Indian youth and young adults with disabilities, including those with ASD, in a way that is culturally sensitive to their own tribal practices as long as they also meet the assurance that they provide rehabilitation services that are, to the maximum extent feasible, comparable to rehabilitation services provided by the state VR agency to other individuals with disabilities.
Under the Rehabilitation Training program (Title III, Section 302), the Department provides discretionary grants to States and public or non-profit agencies and organizations (including institutions of higher education) to pay part of the costs of projects to provide training, traineeships and related activities, including the provision of technical assistance, that are designed to assist in increasing the numbers of, and upgrading the skills of, qualified personnel (especially rehabilitation counselors) who are trained in providing vocational, medical, social and psychological rehabilitation services.
Under the Demonstration and Training Programs (Title III, Section 303), the Department provides discretionary grants to States and public non-profit agencies and organizations to pay all or part of the costs of projects to demonstrate ways to facilitate the provision of vocational rehabilitation services leading to an employment outcome in an integrated setting.
Under Parent Information and Training Programs (Title III, Section 303(c)), the Department makes discretionary grants to private non-profit organizations for the purpose of establishing programs to provide training and information to enable individuals with disabilities, and the parents, family members, guardians, advocates or other authorized representatives of the individuals to participate more effectively with professionals in meeting the vocational, independent living, and rehabilitation needs of individuals with disabilities.
OSEP and RSA fund the National Technical Assistance Center on Transition (NTACT). OSEP’s Technical Assistance funds and RSA’s Rehabilitation Long Term Training Program funds support NTACT’s efforts to assist state education agencies, local education agencies, state VR agencies and other VR service providers to implement evidence-based and promising practices to ensure students with disabilities (including those with autism) stay in school, progress in school, and graduate with knowledge, skills, and supports needed to succeed in postsecondary education and employment.
The OCR has enforcement responsibilities to resolve complaints and conduct compliance reviews involving disability discrimination under two federal anti-discrimination laws: (a) Section 504 of the Rehabilitation Act of 1973 (Section 504); and (b) Title II of the Americans with Disabilities Act of 1990 (Title II). Section 504 prohibits discrimination on the basis of disability in programs or activities receiving federal financial assistance. Title II prohibits discrimination on the basis of disability by public entities, regardless of receipt of federal financial assistance. In the education context, OCR shares enforcement responsibility for Title II with the U.S. Department of Justice. 28 C.F.R. § 35.190(b)(2). OCR is responsible for resolving complaints, conducting compliance reviews, and providing guidance, technical assistance and other forms of public education involving disability discrimination under Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act of 1990, as amended. OCR is responsible for resolving complaints, conducting compliance reviews, and providing guidance, technical assistance and other forms of public education involving disability discrimination under Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act of 1990, as amended.
Section 504 provides a broad spectrum of protections against discrimination on the basis of disability, including the right to a free, appropriate public education (FAPE). All elementary and secondary school students who are individuals with disabilities as defined by Section 504 and need FAPE are entitled to FAPE. Under Section 504, FAPE is the provision of regular or special education and related aids and services that are designed to meet the individual educational needs of students with disabilities as adequately as the needs of students without disabilities are met and that satisfy certain procedural requirements related to educational setting, evaluation and placement, and procedural safeguards. An individualized education program (IEP) developed and implemented in accordance with the IDEA is one means of meeting the Section 504 FAPE standard.
The PROMISE program is an interagency collaboration of the U.S. Departments of Education, Health and Human Services, Labor, and the Social Security Administration. Under this five-year initiative administered by the Department of Education, six state agencies have partnered to develop and implement model demonstration projects (MDPs) that provide coordinated services and supports designed to improve the education and career outcomes of youth with disabilities receiving supplemental security income (SSI), including services and supports to their families. It is anticipated that the evaluation examining outcomes of the PROMISE program will lead to improvements in short- and long-term outcomes encompassing both service-delivery outcomes (assessment of youth and family needs and greater coordination and use of services), and youth and parent outcomes (expectations, self-determination, education, employment, public assistance, and income).
IES supports statistics, research, and evaluation programs to inform education practice and policy, and disseminates this information to educators, parents, policymakers, researchers, and the public. Within IES, the National Center for Special Education Research (NCSER) supports a comprehensive program of education research designed to expand knowledge and understanding of infants, toddlers, and children with disabilities and those at risk for disabilities. The National Center for Education Evaluation and Regional Assistance (NCEE) conducts evaluations of education programs supported by federal funds, including special education services authorized under the IDEA. The National Center for Education Statistics (NCES) collects and analyzes data related to education. The National Center for Education Research (NCER) supports research that addresses the nation’s most pressing education needs, from early childhood to adult education. This includes supporting research in postsecondary and adult education for individuals with disabilities. The work of IES that contributes to understanding the transition of students with autism is described below.
In 2012, NCSER funded the Center on Secondary Education for Students with Autism Spectrum Disorders (CSESA) to develop and test a comprehensive, school-based intervention to improve the cognitive, communicative, academic, social, behavioral, functional, and transition outcomes of secondary students with ASD. CSESA also disseminates information regarding evidencebased practices and reviews of research.
Through the Special Education Research Grants Program competition, NCSER has awarded 28 field-initiated research projects to date on the topic of Transition Outcomes for Secondary Students with Disabilities since 2016. All of these research grants include students with or at risk for disabilities in the samples; however, only one of these studies to date focuses exclusively on students with ASD.
Through the Special Education Studies and Evaluation program, NCEE supports several large-scale research studies focused on students or youth with disabilities, including those with autism. In early 2017, NCEE released baseline reports from the National Longitudinal Transition Study 2012, based on a nationwide sample of 12,000 transition-aged youth, including students with autism.
NCES conducts several national longitudinal studies. Beginning in 2017–18, the Middle Grades Longitudinal Study will follow a cohort of students through the middle grades, collecting information on various education topics, including special education services and transition supports. The study includes a focal sample of students with autism within this nationally representative sample.
OPE works to strengthen the capacity of colleges and universities to promote reform, innovation and improvement in postsecondary education, promote and expand access to postsecondary education, increase college completion rates for America’s students, and broaden global competencies that drive the economic success and competitiveness of the United States.
The Model Transition Programs for Students with Intellectual Disabilities Into Higher Education (TPSID) provides grants to institutions of higher education or consortia of institutions of higher education to enable them to create or expand high quality, inclusive model comprehensive transition and postsecondary programs for students with intellectual disabilities, which may include certain forms of autism. Funds from this program also support a national Coordinating Center, which develops evaluation standards for TPSID grantees and provides technical assistance, information, and opportunities for communication among institutions with postsecondary programs for students with intellectual disabilities. The current TPSID Coordinating Center is Think College, a project of the Institute for Community Inclusion at the University of Massachusetts Boston. According to the 2016 annual report from Think College, autism is the second most common disability among students in TPSID programs after intellectual disability; approximately 26 percent of TPSID students identify as having autism. The National Coordinating Center for Transition and Postsecondary Programs for Students with Intellectual Disabilities provides TPSID grantees with resources on a variety of topics, including transition and postsecondary education, some of which include information on students with autism.
The U.S. Department of Housing and Urban Development (HUD) works to strengthen the housing market in order to bolster the economy and protect consumers; meet the need for quality affordable rental homes; utilize housing as a platform for improving quality of life; and build inclusive and sustainable communities free from discrimination. The U.S. Department of Housing and Urban Development (HUD) administratively enforces several civil rights laws prohibiting housing discrimination, including the Fair Housing Act, Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act (ADA). With few exceptions, the Fair Housing Act covers housing throughout the country.
Section 504 provisions apply to recipients of HUD financial assistance, including the Community Development Block Grant, Public Housing, Multifamily, Housing Choice Voucher, and other programs. HUD’s Section 504 regulations (at 24 CFR § 8.4c) permit exclusion of non-disabled persons from the benefits of a program if the program is limited by federal statute or executive order to individuals with disabilities, and also permits exclusion of a specific class of individuals with disabilities from a program if the program is limited by federal statute or executive order to a different class of individuals. However, HUD does not have disability-specific programs, such as housing specifically for persons with autism-spectrum disabilities.
Section 811 program, HUD provides funding to develop and subsidize rental housing with the availability of supportive services for very low- and extremely low-income adults with disabilities.
The U.S. Department of Justice (DOJ) ensures fair and impartial administration of justice for all Americans. Within DOJ, the Civil Rights Division works to uphold the civil and constitutional rights of people with disabilities, including people with autism spectrum disorder and other developmental disabilities. The Division coordinates the activities of the various federal agencies that have obligations under Section 504 and Title II of the Americans with Disabilities Act. The Civil Rights Division collaborates with other federal agencies to promulgate guidance for schools, localities and state agencies to guarantee equal opportunity for all people, including people with disabilities.
Educational Opportunities Section (EOS)
EOS enforces anti-discrimination statutes and court decisions in elementary and secondary schools and institutions of higher education, including the ADA, Section 504 of the Rehabilitation Act, the Equal Educational Opportunities Act (EEOA), Title VI of the Civil Rights Act, and upholds rights under the 14th Amendment to the U.S. Constitution in educational settings.
The Supportive School Discipline Initiative (SSDI) was created by DOJ and ED to address the use of disciplinary policies and practices that push students out of school and into the justice system, which tend to disproportionately impact students with disabilities. The initiative supports school discipline practices that foster safe, inclusive and positive learning environments while keeping students in school.
In 2014, DOJ and ED released a School Discipline Guidance Package to assist states, districts and schools in developing practices and strategies to enhance school climate, and ensure those policies and practices comply with federal law.
Disability Rights Section (DRS)
DRS enforces Titles I, II and III of the ADA and administers the ADA. The Section uses the broad tools of the ADA to achieve equal opportunity for people with disabilities in the United States. The Section also coordinates the activities of the federal agencies under Section 504 of the Rehabilitation Act and Title II of the ADA. Key concepts that are common to the Department’s section 504 and ADA regulations include: reasonable accommodations/modifications; program accessibility; and effective communication.
Guidance on the Application of the Integration Mandate of Title II of the Americans with Disabilities Act and Olmstead v. L.C. to State and Local Governments' Employment Service Systems for Individuals with Disabilities was released in 2016 and explains the requirements of the ADA integration mandate and Olmstead as applied to employment service systems for individuals with disabilities, which includes youth with autism spectrum disorders in transition from secondary school.
Guidance on Testing Accommodations was released in 2015 to ensure that people with disabilities who are taking standardized gateway examinations for the purpose of gaining entry to high school, college, or graduate programs, or for those attempting to obtain professional licensure or certification for a trade, have the opportunity to fairly compete for and pursue such opportunities by requiring testing entities to offer exams in a manner that is accessible to people with disabilities and does not measures a person’s disability, but instead measures the individual’s aptitude or achievement level.
Guidance on Effective Communication was released in 2014 to ensure that state and local governments and businesses and nonprofit organizations that serve the public communicate with people with vision, hearing, or speech disabilities in a manner that is equally as effective as their communication with people without disabilities.
In collaboration with ED’s Office for Civil Rights and Office of Special Education and Rehabilitative Services, DOJ’s Civil Rights Division released Frequently Asked Questions on Effective Communication for Students with Hearing, Vision, or Speech Disabilities in Public Elementary and Secondary Schools in 2014 to address the obligation of public schools to meet the communication needs of students with disabilities.
Special Litigation Section (SPL)
SPL enforces Title II of the ADA, the Civil Rights of Institutionalized Persons Act, and Section 14141 of the Violent Crime Control and Law Enforcement Act of 1994. The Section’s work has addressed conditions at health care facilities for individuals with disabilities, the rights of individuals with disabilities to live in their communities and not facilities, and the appropriate diversion of individuals with disabilities from the criminal justice system.
DOJ Office of Justice Programs (OJP)
OJP provides leadership to federal, state, local, and tribal justice systems through national dissemination of state-of-the art knowledge and practices, and the provision of grants for the implementation of crime fighting strategies.
BJA provides leadership and assistance to local criminal justice programs that improve and reinforce the nation’s criminal justice system. BJA works to reduce and prevent crime, violence, and drug abuse and to improve the way in which the criminal justice system functions. In 2013 BJA funded The Arc of the United States, Inc.’s project for the National Center on Justice and Disability, to build a national resource center to address challenges the justice system faces when it encounters people with disabilities in the areas of law enforcement, courts, and corrections. The Center’s “Pathways to Justice” initiative works to increase capacity of criminal justice professionals to respond to individuals with disabilities by providing training, technical assistance, and education. The Center brings together professionals from the disability and criminal justice fields to share expertise and provides training using a team approach, with the goal of becoming the go-to resource in their community or state on issues related to criminal justice and disability.
The U.S. Department of Labor (DOL) works to improve full access to gainful employment opportunities for all Americans, including Americans with disabilities. DOL also supports career pathways for youth and adults through its support for workforce development and job training programs.
ODEP in DOL developed the Guideposts for Success in conjunction with its grantee, the National Collaborative on Workforce and Disability for Youth. The Guideposts for Success is an evidence-based policy and practice framework for serving all youth, including youth with disabilities. The Guideposts indicate that all youth, including those with significant disabilities, should receive high quality supports and services in the areas of: career exploration and development, school-based preparation, family involvement, youth leadership and development, and connecting activities.
The Pathways to Careers Demonstration Grants support researching, developing, testing and evaluating innovative approaches to providing comprehensive, coordinated, and integrated inclusive education and career development services to youth and young adults with disabilities ages 14–24, including youth and young adults with significant disabilities. The grants are also intended to increase institutional capacity within the community college system by building an evidence base of policies and practices that are most effective in helping youth and young adults with disabilities to thrive in community college settings.
Employment First is a policy framework for systems change that is centered on the premise that all citizens, including those with significant disabilities, are capable of fully participating in competitive integrated employment (CIE) and community life. ODEP manages the Employment First State Leadership Mentoring Program (EFSLMP) with 14 participating states. Through EFSLMP, ODEP provides training and technical assistance to these states to assist with their development and implementation of holistic systems change. EFSLMP also assists states in sharing information, resources, and recommendations for implementing Employment First policies and practices. The objectives of the EFSLMP are to provide mentoring, intensive technical assistance and training from a national pool of subject matter experts and peer mentors to core states as they transform existing policies, service delivery systems, and reimbursement structures to reflect an Employment First approach. EFSLMP also facilitates virtual training and knowledge translation on effective practices, facilitates dialogue on shared experiences related to effectuating Employment First policies and practice, links participating states with current federal initiatives that are focused on promoting state-level systems-change conducive to Employment First objectives, and evaluates the impacts of the investments in state Employment First systems change efforts over time to identify common challenges faced by state governments and validate innovative strategies and effective practices that lead to the successful implementation of Employment First objectives.
DEI is a collaborative of ODEP and DOL’s Employment and Training Administration to increase the capacity of the national American Job Center network to provide services to job seekers with disabilities. Since 2010, DOL has awarded grants totaling $126 million to 49 DEI projects in 28 states in order to improve workforce development services for job seekers with disabilities, including those with significant disabilities. The most recent DEI projects have incorporated a focus on career pathways and alignment with the Workforce Innovation and Opportunity Act of 2014.
The Advisory Committee on Increasing Competitive Integrated Employment for Individuals with Disabilities was established under the Rehabilitation Act of 1973, as amended by the Workforce Innovation and Opportunity Act (WIOA) of 2014, to advise in three areas:
Ways to increase competitive integrated employment (CIE) opportunities for individuals with intellectual or developmental disabilities (I/DD) or other individuals with significant disabilities;
The use of a certificate program carried out under Section 14(c) of the Fair Labor Standards Act (FLSA) for the employment of individuals with I/DD or other individuals with significant disabilities; and
The Committee was established in September 2014 according to the provisions of the Federal Advisory Committee Act (FACA), which helps ensure the independent nature of the Committee in providing advice and recommendations to the Administration. The primary purpose of the work of the Committee was to address issues and make recommendations to improve the employment participation of people with I/DD and others with significant disabilities by ensuring opportunities for CIE. The Final Report of the committee can be accessed online.
The U.S. Department of Transportation (USDOT) works to ensure transportation that is fast, safe, efficient, accessible and convenient to improve the quality of life of people in the United States.
ATTRI is a joint USDOT initiative, co-led by the Federal Highway Administration (FHWA) and the Federal Transit Administration (FTA), with support from the Intelligent Transportation Systems Joint Program Office (ITS JPO) and the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), and other public and private organizations. Working with these organizations, ATTRI leverages technologies and innovations from disability research and development activities to improve accessible transportation for travelers with disabilities, and to extend these benefits to all travelers.
ATTRI research focuses on the needs of three stakeholder groups (people with disabilities, veterans with disabilities, and older adults) and four functional disabilities (visual, hearing, cognitive, and mobility) within these groups. ATTRI is in the process of developing technological solutions to lower or remove the transportation barriers that affect these stakeholder groups with the specified functional disabilities.
ATTRI leverages recent advances in vehicle, infrastructure, and pedestrian-based technologies, as well as accessible data, mobile computing, robotics, artificial intelligence, object detection, and navigation. The technology is enabled by wireless communications that connect travelers and their mobile devices with other travelers, vehicles, and infrastructure. The technologies used by ATTRI provide access to real-time situational data sources, including data specific to transportation, municipalities, and points of interest, as well as crowd-sourced information and accessibility data.
ATTRI is being implemented in three phases: 1) exploratory and user needs research; 2) innovation, prototype development, and testing; and 3) demonstration. The first phase is now complete, and ATTRI is focusing on activities for the second phase and is currently working on developing four transformative applications:
Smart way finding and navigation systems;
Pre-trip concierge and virtualization;
Shared use, automation and robotics; and
Safe intersection crossings.
Connected and automated vehicles, as well as robotics and automation technologies are playing a larger role in transportation and logistical applications, such as moving people to desired destinations. Robotics applications are being developed that provide concierge services within transportation networks, including transportation terminals and home, work, healthcare, and other destinations. Similarly, the use of robotics technologies in smart city/ community infrastructure provides people with disabilities with a wide variety of potential uses. These technologies provide universally integrated and virtually connected environments, allowing individuals to plan and execute their travel logistics before they leave home.
The solutions explored by ATTRI and other related research programs at the USDOT are expected to bring new systems and tools to make independent travel possible for travelers with eligible disabilities, including those on the autism spectrum.
SSI through the Social Security Administration (SSA) provides supplemental income for those with ASD who file disability claims and meet certain severity criteria. The required level of severity for ASD may be met when the following requirements are determined by a licensed physician:
Qualitative deficits in verbal communication, nonverbal communication, and social interaction; and
Significantly restricted, repetitive patterns of behavior, interests, or activities.
These medical criteria must cause serious limitation in at least two, or very serious limitation in at least one, of the following areas of mental functioning:
Understanding, remembering, or applying information;
Concentrating, persisting, or maintaining pace; and
Children with ASD may be eligible for SSI disability benefits if their family’s income and assets are not above the SSI limits. An adult with ASD can apply for SSI or Social Security Disability Insurance (SSDI). However, SSDI is available only to those with a work history from jobs that paid Social Security taxes. An adult child of a parent receiving Social Security retirement or disability benefits (a child more than 18 years old who has had autism before turning age 22) can receive SSDI benefits on the earning record of the parent.
Demonstrations of Policies
Under the SSA include the Youth Transition Demonstration, as well as the interagency PROMISE program described in the Department of Education section. These include a distribution of individuals mirroring the underlying distribution of disabilities observed in SSI and SSDI. The Social Security Administration also supports analyses of SSI and SSDI beneficiaries that may focus on specific impairments or the broader population.
Available to children and youth, including children with ASD, through the Social Security Administration include:
The Student Earned Income Exclusion allows youth under age 22 who are regularly attending school to exclude up to $1,790 (in 2017) of earned income per month from countable income when determining SSI benefit amount, up to an annual maximum of $7,200.
The Red Book contains a comprehensive list of resources that can help youth as they transition to adulthood. In 2016, SSA began mailing a brochure to all youth receiving SSI ages 14–17 informing them that SSA will review their eligibility for continued SSI benefits at age 18 using the disability rules for adults. The brochure also identifies the SSA and non-SSA services and supports that may help prepare for a successful transition to adult life.
Federal Partners in Transition (FPT) is an interagency policy workgroup led by DOL, bringing together several partner agencies including but not limited to DOL, ED, HHS, and SSA. Formed in 2005, the group has identified several policy priorities to achieve the goals described in The 2020 Youth Transition Plan: A Federal Interagency Strategy, and to improve transition outcomes for youth and young adults with disabilities, including:
Facilitating access to quality health care and health care insurance;
Promoting collaboration, coordination, and cooperation among youth and adult service systems and agencies;
Bridging the service gap between youth and adult programs;
Promoting work-based learning;
Supporting professional development for service providers;
Demonstrating the value of hiring youth and young adults with disabilities; and
Improving education and outreach to the public regarding policy and practices governing youth transition programs.
The goals of FPT, which address some of the concerns of the 2017 GAO report, are presented in The 2020 Federal Youth Transition Plan: A Federal Interagency Strategy.28 In 2016, the FPT also produced a fact sheet on youth transition.
This interagency strategic plan for youth in transition, published in February 2015, addressed transition from secondary education to postsecondary education, employment, and community living for youth with disabilities. Set forth by a Strategic Planning Committee of the FPT that included career and senior staff from several federal agencies, including but not limited to DOL, ED, HHS, and SSA, this strategy outlined how FPT will enhance interagency activities and improve outcomes for youth with disabilities by 2020. The strategy’s vision called for the development of self-directed pathways to support the interests, aspirations, and goals of youth with disabilities to ensure their full inclusion and community integration. FPT asserted that all youth, including those with disabilities, should be able to:
Access health care services and integrated work-based experiences in high school to better understand how to manage their physical, mental, and emotional well-being, to enhance their job-readiness skills and career planning, and to make a successful transition from school to work and greater independence;
Develop self-determination and engage in self-directed individualized planning to prepare them for postsecondary education, health care management, vocational training, and/or employment;
Be connected to programs, services, activities, information, and supports for which they are eligible that prepare them to self-manage their health and wellness, pursue meaningful careers, become financially literate and capable, and make informed choices about their lives;
Develop leadership and advocacy skills needed to exercise informed decision-making and personal and community leadership; and
Have involvement from families and other caring adults with high expectations to support them in achieving their goals. This vision clearly applies to youth with ASD and emphasizes the need for cross-agency coordination and collaboration. GAO, in its 2012 report on the transition from high school for students with disabilities,27 has stated that coordination for youth programming is enhanced by having clear and compelling rationales to work across agency boundaries in support of common federal program goals. The Autism CARES Act specifies that HHS should provide an overview of existing federal investments that address transitioning youth and young adults with ASD, highlighting areas where coordination can be improved across service systems and federal agencies as well as with the family, and state and local agencies. Such coordination can provide a more comprehensive approach by supporting a variety of complementary, non-duplicative programs, with the shared goal of improving outcomes among transitioning youth and young adults with ASD. Although not legislatively mandated and not specifically targeted to youth and young adults with ASD, this workgroup offers a model for interagency policy and service coordination.
This vision clearly applies to youth with ASD and emphasizes the need for cross-agency coordination and collaboration. GAO, in its 2012 report on the transition from high school for students with disabilities,27 has stated that coordination for youth programming is enhanced by having clear and compelling rationales to work across agency boundaries in support of common federal program goals. The Autism CARES Act specifies that HHS should provide an overview of existing federal investments that address transitioning youth and young adults with ASD, highlighting areas where coordination can be improved across service systems and federal agencies as well as with the family, and state and local agencies. Such coordination can provide a more comprehensive approach by supporting a variety of complementary, non-duplicative programs, with the shared goal of improving outcomes among transitioning youth and young adults with ASD. Although not legislatively mandated and not specifically targeted to youth and young adults with ASD, this workgroup offers a model for interagency policy and service coordination.
Summary of Current Federal Investments for Transitioning Youth with ASD
Current federal investments that benefit youth and young adults with ASD transitioning to adulthood fall primarily into the following four categories:
According to IACC’s analysis of the ASD research portfolio (including both federal and private funders),22 funding allocated to projects on lifespan issues, including the transition to adulthood, represented the smallest segment of ASD research funding. In 2015, projects on lifespan issues received 2 percent ($6.1 million) of overall combined federal and private ASD funding, similar to the investments made in previous years; this percentage does not change when including only federal sources.**** When considering only the topic of transition, the proportion is less than 2 percent of total funding. In terms of number of projects rather than percentage of funding, lifespan issues again were 2 percent of the entire ASD research portfolio, with 37 projects across both federal and private sources; of these, 24 were devoted to transition issues.
As can be seen in Table 2, programs currently supporting research related specifically to the transition to adulthood among youth and young adults with ASD were found in only four agencies: NIH, HRSA, ED, and DOD. In 2013–2016, only 18†††† federally-funded research projects focused on transitioning youth and young adults with ASD were newly awarded across these four agencies; seven of these were in response to NIH’s Services Research for Autism Spectrum Disorder across the Lifespan (ServASD) Initiative, and four were in response to autism-specific research programs within HRSA. Across all federal agencies surveyed, only six investigator-initiated research projects focusing on transitioning youth and young adults with ASD were funded through broadly targeted programs: four projects through investigator-initiated extramural research programs in NIMH and NICHD, one study in response to ED’s (NCSER) cross-disability call for research on transition, and one investigator-initiated research project funded through DOD.
General or Mainstream Programs
Mainstream programs are publicly funded programs that are available to all U.S. citizens who meet certain eligibility requirements, including youth and young adults with ASD. Examples include but are not limited to HRSA’s Maternal and Child Health Title V Block Grant program, CMS’s Medicaid program, ACF’s Adoption and Foster Care program, SAMHSA’s Child Mental Health Initiative, and others.
These programs aim to promote health and well-being among the U.S. population by providing services for those individuals and/or families who meet certain eligibility criteria. A few of these programs collect data that document services to youth with ASD. Knowing how many youth and young adults with ASD are served by a program allows providers, policy makers, researchers, and the public to verify apparent trends, proactively address emerging issues, measure progress towards stated goals, and capitalize on opportunities to improve service delivery. For example, ACF collects data on autism for its National Survey on Child and Adolescent Well-being (NSCAW) using a representative sample drawn from Child Protective Services (CPS) across the country. Based on these data, it has been determined that the rate of ASD among CPS-participating families is 67 percent to 100 percent higher than that of the general child and youth population (3 percent compared to 1.8 percent for national parent self-report data regarding ASD diagnosis, and compared to 1.47 percent for the CDC surveillance data based on diagnostic evaluation). Findings such as these can provide direction to future research as well as inform and improve systems, programs, and service delivery planning and implementation for youth with ASD as they transition to adulthood.
However, most mainstream programs do not collect information on ASD (or many other population characteristics) among their participants, in large part because every additional required reporting item adds to the cost of program provision. Measures of impact are thus limited to program-specific goals, which typically do not include tracking participants with ASD throughout their lifespan.
Cross-Disability Services and Supports
Most federally funded disability services and supports are designed to be cross-disability. For example, several agencies (e.g., ACL, ED, DOL, DOT, SSA) offer programs for individuals with disabilities that youth and young adults with ASD may use. Similar to mainstream programs, some disability programs track utilized services and goals according to specific diagnoses, including ASD; other programs do not track specific diagnoses or only track broad categories (e.g., physical disability, cognitive disability).
In addition, eligibility requirements for most cross-disability programs typically reflect a combination of state budget constraints, income-based program requirements, and level of individual need. As a result, youth and young adults with ASD who have less extensive service needs may not always be eligible for specific federally funded programs that provide services and supports that they may otherwise need.
Autism CARES Act Programs
In addition to mainstream programs and cross-disability benefits and services, programs funded through the Autism CARES Act have an explicit focus on ASD. The vast majority of Autism CARES-funded programs are administered by CDC and HRSA. CDC programs focus on population surveillance of eight-year-old children and risk factor research among 2 to 5 year-old children. HRSA concentrates on capacity-building in the field through training, autism intervention research and research networks, and state demonstration programs.
Conclusions Regarding Existing Federal Resources
ASD-related research and programming regarding the transition period is conducted under and administered through multiple agencies, including ED, DOD, SSA, and HHS, and, within HHS, multiple operating divisions, includes NIH, HRSA, SAMHSA, ACL, CDC, and others. Most agencies do not receive appropriations targeted specifically to individuals with ASD (such as through the Autism CARES Act), but instead provide broadly targeted programs through legislative authorizations that typically predate the Combating Autism Act of 2006 and its reauthorizations; these broadly targeted programs are available to individuals with ASD who meet the eligibility criteria. In most cases, the ASD population is not specifically tracked within these broader programs. The complexity of program eligibility requirements, the lack of outcomes research geared specifically to ASD and transition, and the variability of access to federal programs have been cited by ASD stakeholders and researchers as significant barriers for transitioning youth and adults with ASD. Part 4 provides additional analysis of these barriers and recommendations for further consideration.
Table 2: Federal Activities by Agency Relevant to Young Adults and Youth with Autism Spectrum Disorder Transitioning to Adulthood
Main Activities that Include or are Available to Youth and Young Adults with ASD
Number of Activities Focused Specifically on the Transition of Youth with ASD to Adulthood
U.S. Department of Health and Human Services (HHS)/ Office of the Assistant Secretary for Health (Science and Medicine)
Report to Congress on Youth with ASD Transitioning to Adulthood
HHS/NIH/Office of Autism Research Coordination
HHS/Agency for Health Care Research and Quality (AHRQ)
"A Deliberative Approach to Develop Autism Data Collection in Massachusetts"
Study to Explore Early Development Teen Follow-Up (SEED Teen)
1 Research Network and 3 investigator-initiated research projects
11 research projects, (including 4 that are investigator-initiated)
"Now is the Time" Healthy Transitions Program (NITT-HT)
Part B of the Individuals with Disabilities Education Act (IDEA) Formula Grant Program
Part D of the Individuals with Disabilities Education Act (IDEA) Discretionary Grant Program
Supported Employment Services State Grants
Title II of the Americans with Disabilities Act of 1990, as amended
ED/Institute of Education Sciences (IES)
Special Education Research Grants/ Transition Outcomes for Secondary Students with Disabilities
Middle Grades Longitudinal Study
1 Research and Development Center; 1 investigatorinitiated research project
Model Comprehensive Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID)
1 investigator-initiated research project
Guidance issued on school discipline, testing accommodations, and effective communication
National Center on Justice and Disability "Pathways to Justice Initiative"
DOL, ED, HHS, and SSA
*Project SEARCH is a public-private partnership-supported program in which NIH participates.
Information regarding each of these programs follows; federal policies and legislation that authorizes these programs are found in Appendix 2.
§§§ As defined in the Final Rule (45 CFR Section 1356.81(g)(19)), “special education” refers to specifically designed instruction, at no cost to parents, to meet the unique needs of a child with a disability.
¶¶¶ The eight quarters of enhanced match begin on the effective date of the state’s program, so the timeframe is specific to each state plan approval, with no national-level start or stop date.
**** Federal agencies included in the 2015 IACC ASD Research Portfolio Analysis: Administration for Community Living (ACL). Agency for Healthcare Research & Quality (AHRQ), Centers for Disease Control and Prevention (CDC), Department of Defense, Department of Education, Environmental Protection Agency (EPA), Health Resources & Services Administration (HRSA), National Institutes of Health (NIH), National Science Foundation (NSF). Private organizations included: Autism Science Foundation, Autism Research Institute, Autism Speaks, Brain & Behavior Research Foundation, Center for Autism & Related Disorders, New England Center for Children, Organization for Autism Research, Patient-Centered Outcomes Research Institute, Simons Foundation.
†††† This Report to Congress on Youth with ASD Transitioning to Adulthood, listed at the top of Table 2, is mandated by the Autism CARES Act of 2014 to identify existing federal resources for youth and young adults with ASD, and is not itself counted here as one of those already existing resources.