2017 Report to Congress
Young Adults and Transitioning Youth with Autism Spectrum Disorder
In Part 4 of this report, a synthesis of findings is presented; conclusions are offered first and then recommendations¶¶¶¶ are provided. These conclusions and recommendations are based on the review presented in Part 2 of federal programs, policies, services and supports for individuals with ASD who are transitioning to adulthood, as well as on stakeholder input as described in Part 3.
A Coordinated, Comprehensive Approach to Services and Supports
The terms 'coordinated' and 'comprehensive' have both featured prominently in the healthcare and ASD fields in the past decade and a half. In a 2002 consensus statement regarding health care transitions for young adults with special health care and service needs,29 the boards of three medical professional societies together described “the critical first steps that the medical profession needs to take to realize the vision of a family-centered, continuous, comprehensive, coordinated…health care system.” The terms “coordinated” and “comprehensive” appear again in the Joint Principles of the Patient-Centered Medical Home, first developed and endorsed in 2007 by the major primary care physician associations. The Joint Statement asserts that, “the medical home is best described as a model or philosophy of primary care that is patient-centered, comprehensive, team-based, coordinated, accessible, and focused on quality and safety.” It goes on to offer the following definitions of these two terms:30
- Comprehensive: A team of care providers is wholly accountable for a patient's physical and mental health care needs, including prevention and wellness, acute care, and chronic care
- Coordinated: Care is organized across all elements of the broader health care system, including specialty care, hospitals, home health care, community services and supports
Many current federal investments incorporate families and/or the targeted individual into their existing program practices. However, only a few federally funded programs coordinate services across agencies at the state and local level. For example, the PROMISE program requires the Social Security Administration and the Departments of Education, Health and Human Services, and Labor to work together to develop and implement demonstration projects that provide coordinated services and postsecondary supports for youth with disabilities receiving Supplemental Security Income (SSI), including services and supports for their families. This innovative program provides a model for other cross-agency partnerships designed to encourage coordination across services.
The Autism CARES Act specifies that coordinated health and wellness care, services, and community supports for transitioning youth and young adults with ASD must involve “all relevant service providers receiving federal funding,” and not only a select few of these providers. The services and supports listed in the 2014 Act mirror the diverse needs of youth and young adults with ASD, cut across the traditional boundaries of multiple federal agencies, and include the following:
- Postsecondary educational and vocational preparation and support;
- Behavioral supports and interventions;
- Community-based, integrated services and supports, including housing and transportation;
- Nutrition, health and wellness;
- Recreational and social activities; and
- Personal safety supports.
According to the 2017 GAO Report and the 2011 Survey of Pathways to Diagnosis and Services, over half of youth with ASD aged 15–17 had also been diagnosed with co-occurring conditions, including attention deficit disorder (53 percent) and anxiety (51 percent). Nearly one-quarter had depression, and 60 percent had at least two concurrent conditions. In addition to mental health needs, other common co-occurrences include sleep disorders, intellectual disability, seizure disorders, and gastrointestinal ailments. These co-occurring conditions indicate a need for a comprehensive, coordinated approach that includes clinical providers as well as community-based services and supports that a particular individual with ASD may need.
One federal program that meets the criterion of coordination with all relevant providers is SAMHSA's “Now Is The Time” Healthy Transitions program, where sites must provide wraparound coordinated services and supports. Using a wraparound approach, individuals who are relevant to the health and well-being of the child or youth (e.g., family members and other unpaid supportive individuals, clinical and community service providers, agency representatives) work together to develop and implement a plan of individualized supports and services. Given the complexity and heterogeneity of ASD, programs that utilize an individualized, wraparound team approach are especially important and remain a critical need in service provision for this population.
A coordinated, comprehensive approach involves providers from different disciplines and programs from different systems. By finding ways to involve all relevant services and supports, a coordinated approach typically cuts across clinical and community settings to provide supports and services that reflect the varying needs of each individual. However, provision of federally funded supports and services, including health care, that is comprehensive presents challenges for systems that are set up to function separately. Blending or braiding of funds from federal, state, and local sources to support a common project (e.g., as is the case for the PROMISE program*****) is a complicated process. More often than not, it falls upon the individual and his or her caregivers to piece together resources and services across different service systems.
Support Coordinating Across Systems
Many families do not have the resources to help them access or consolidate information and resources across systems during the transition process. For youth with ASD who receive special education and related services under IDEA, service providers may be invited to IEP and transition planning meetings. In addition, federal regulations require state VR agencies to coordinate with education officials through a formal interagency agreement to facilitate the transition of students with a disability, including for those students determined to be eligible for VR services, and the development and approval of an individualized plan for employment as early as possible during the transition planning process and not later than the time a student with a disability leaves the school setting.
However, not all youth with ASD receive services under the IDEA, and young adults who received special education and related services while in school are no longer covered once they age out of IDEA services; in all such cases, families are often left to contact each individual agency that provides services and supports (such as SSI, community health services, housing supports, VR or other job and employment or training resources) on their own and then determine which services that agency might be able to provide, how to apply for those services, and how those services might depend on other services they are or are not receiving or may or may not be eligible for.
An underserved area of concern regarding youth with ASD transitioning to adulthood is the issue of family and caregiver health and wellness. As young people age, so do their caregivers; over time, caregivers may become less and less able to provide direct care or to assist their adult child with navigating increasingly complex service delivery requirements. Services for adults living with ASD are quite variable across states and often depend heavily on Medicaid. An adult with ASD can apply for SSI or SSDI since autism is an eligible disability under SSA definitions. However, many young adults with ASD may not meet eligibility criteria for SSI or SSDI; moreover, SSI/SSDI provide monetary benefits, but this may not cover all supports and services needed, or their coordination.
A range of Medicaid home and community based services (HCBS) have been available as an option to states through a variety of statutory authorities, including Medicaid HCBS waivers, other waivers (e.g., authorized as part of demonstration projects under section 1115 of the Social Security Act), and State Plan amendments. These could include many services that help beneficiaries and caregivers (e.g., respite care, chore services, environmental supports, etc.). However, because these services are at the discretion of state programs, they vary considerably across the United States. Some states offer self-directed service delivery options that include greater choice and control for beneficiaries and families/ caregivers. HCBS could include more extensive caregiver supports, pay caregivers, and provide other benefits that relieve caregiver burdens for those caring for youth and young adults with ASD, but these are at the option of states, not the federal government.
Youth under 21 years of age who are eligible for Medicaid in their state qualify for the Medicaid Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit, which allows them to receive any medically necessary service found in section 1905(a) of the Social Security Act including rehabilitation services, dental services, therapy services and personal care.
Data and Research on Transition-age Youth and Young Adults with ASD
The 2014 Autism CARES Act calls for the reporting of relevant demographic characteristics for the population of transitioning youth with ASD. In the review of existing federal programs, however, there appears to be no single source for data that describes the transition-age U.S. population with ASD—a significant gap in vital information that deserves attention and needs to be addressed. Most federally funded data sets that include youth focus on children up to the age of 18 and do not continue through young adulthood. One notable exception, the National Longitudinal Transition Study (NLTS2), provides data on transition-age youth and young adults with disabilities, including ASD, who received special education and related services under IDEA in secondary school. However, since not all youth with ASD are eligible for or receive special education and related services, the findings cannot be generalized to all youth and young adults with ASD.
As described in Part I, there is no survey that covers the full population of transition-age youth and young adults with ASD in the United States. This impedes the identification, development, and implementation of programs that provide comprehensive, coordinated, individualized services and supports across a highly heterogeneous population. This highlights the need for improved ASD surveillance, including youth and young adults, as well as for exploratory/ descriptive studies that focus on youth who may not qualify for school-based services under IDEA, or on young adults who are attempting to navigate adult services and supports on their own.
The final set of elements specified by the Autism CARES Act focuses on improving outcomes through the transition to adulthood. Although transition issues were included as a topic or potential topic in many existing programs, in no case was a federally funded services program identified that focuses solely on the transition to adulthood among youth with ASD, and only a handful of research studies targeted to this population were funded. Improving outcomes among this population will require increased knowledge of factors associated with improved quality of life in this population, including what works for which persons and under what circumstances, as well as for the development of best practices based on the new knowledge.
In addition, the Act calls for the use of evidence-based practices, and for determining the effectiveness of different practices. The most recent assessments from IACC's portfolio analysis have indicated that 2 percent of research funding on ASD has been dedicated to the needs of adults living with ASD, similar to previous years; when considering just research devoted to transition-related issues, the percentage of the total funding is less than 2 percent (Office of Autism Research Coordination, National Institute of Mental Health). Although there are data from the NLTS 2012 and the NLTS2 on youth and young adults with ASD who received special education and related services in school, there is currently insufficient population-based intervention research focused on the transition of youth with ASD to adulthood to identify best practices. Research designed to build this evidence base is needed.
Below, recommendations for further consideration are stratified according to surveillance and monitoring, research, and program services and delivery. These recommendations are based on information gathered by the Transition Steering Committee and IWG.
Epidemiological Data Collection and Monitoring
- Service systems within communities must be able to assess and monitor the experiences, needs, and life goals of transitioning youth with ASD in order to identify, develop, plan, and implement vital changes to support this population. Collaborative efforts between public institutions, private organizations, and individuals and families are necessary to better describe the characteristics of youth with ASD, develop standard methods of community needs assessment, and improve the capacity for ongoing surveillance and research.
- A national survey assessing the full range of service and support needs, barriers, and facilitators for transition-age youth and young adults with ASD is needed, including their access to employment and employment-related supports. Such a survey should include a way to track the use of general and disability-specific services through the transition.
- A more complete surveillance system may be needed in order to provide data on the full spectrum of transition-age youth and young adults with ASD. Such a system should include a way to track the use of mainstream and general disability supports and services, including health care services, through the transition. Current surveillance data are limited to children; adults with ASD are not included in population-based surveys used by the federal government. The current lack of an authoritative national resource for information regarding transition age youth with ASD in the U.S. underscores the need for enhanced investments in ASD surveillance, including youth and young adults.
- Longitudinal data are vital to follow up on transition outcomes for individuals with ASD. These home and community-based services performance measures should go beyond job placement or post-secondary education to include career development and advancement, life satisfaction and well-being, health status, community integration and social connectedness, personal relationships, access to quality health care including mental health services as needed, and individual financial well-being and economic self-sufficiency.
- Although some research has been conducted on the needs of transition-age youth and young adult in general, there is a dearth of research on the needs of transition-age youth and young adults with ASD, with less than 2 percent of combined private and federal autism funding being devoted to this issue (Source: Office of Autism Research Coordination, National Institute of Mental Health). Additional targeted outcomes research is needed to assess the efficacy of transition-oriented programming in achieving positive outcomes in education, daily life and social skills training, vocational training, employment, residential placement, and community integration.
- In order to improve outcomes among this population, it is necessary to have research- based information, such as what factors are associated with optimal outcomes in this population, or more specifically, what works for who and in what circumstances? Careful consideration should be given to understanding how outcome goals must vary across the heterogeneous population of young adults and transitioning youth with ASD in order to address their individualized needs.
- Program model development that includes individualized coordination of supports and services, as well as efficacy or effectiveness testing of those programs by researchers, is critical to establishing a base of evidence regarding what program components are effective for which needs among transitioning youth and young adults with ASD.
- There is a need for a broader array of meaningful outcome measures to facilitate the development and evaluation of effective models for the development of coordinated, comprehensive, and individualized services and supports for transition age youth and young adults with ASD.
- Research is needed that focuses on implementing promising program models across different settings and populations, as well as better granular information on what services and supports are effective across different ASD phenotypes, genders, race/ethnicity/ cultural groups, and cognitive abilities and other domains of functioning, as well as under what circumstances of social, economic, and institutional support. Models determined to be effective must be evaluated as to how they may be scaled up and adapted to different settings for use with this diverse population.
- Service delivery research is also necessary to ensure the translation of research into practice, as well as to identify effective strategies for ensuring access to all families, including families that are under-resourced or live in rural areas.
- Research is needed to better understand how caregivers, and especially parents, can best support youth and young adults with ASD through the transition process. In addition, research examining the extent to which fostering social support systems for individuals with ASD may serve to increase independence and decrease the reliance on families as the single source of support.
Supports and Services
- Better coordination across federal agencies, and across service systems at the state and community levels, is necessary in order to adequately meet the diverse needs of the heterogeneous population of transitioning youth and young adults with ASD. This goal may be facilitated by a specific coordinating office or an expanded role for existing ASD-specific agencies.
- Programs must be designed for broad access, but with individual flexibility. The heterogeneity of the ASD population demands more than 'one size fits all' approaches. Such program application must be supported by cross-agency coordination at the state level, and informed through research and programming that support the identification of effective programs and program components. Programs and service delivery models that include coordination of a team of professionals across systems is crucial, in order to appropriately individualize services for this heterogeneous population.
- Trained service coordinators and case managers who understand the potentially multiple needs of individuals with ASD and their families/ caregivers are vital in order to help them navigate multiple, complex service systems early in the process of transition. Specific training, certification, and licensing programs may be needed to assure this type of capacity.
- Better preparation of all relevant adult service and support providers to receive young adults with ASD is essential in order to provide high-quality care that is individualized to meet diverse needs of transitioning youth. This includes primary care providers who provide clinical services but must also understand the developmental and social support system issues faced by youth transitioning to adulthood.
- Increased coordination between childhood-oriented services, which benefit from Individualized Educational Programs (IEPs), and the adult services and supports provided across different systems, is necessary in order to create transition planning that functions as an effective bridge between child/adolescent and adult services and supports. Some programs of this nature already exist, such as the public-private partnership, Project SEARCH, which provides a combination of classroom instruction, career exploration, and hands-on training through worksite rotations for students in their last year of or recent graduates from high school. Similarly, the vocational rehabilitation (VR) program coordinates with the schools to provide pre-employment transition services to students with disabilities (including students with ASD) who are eligible or potentially eligible for VR services.††††† Given the wide range of service and support needs among the ASD population, more programs that bridge the gap across child or pediatric and adult systems are needed, as is a way to coordinate systems into flexible, individualized services and supports as needed.
- Federal policies that encourage blending and braiding of funds for cross-agency funding opportunities are critical in order to design, develop, implement, and evaluate a comprehensive, coordinated approach to services and supports, including health care, that assures broad access but individual flexibility.
- Concerted communications efforts across federal, state, and community levels, and across different media platforms are crucial to dispel stigma and encourage acceptance of individuals with ASD; such concerted communications efforts are necessary to facilitate full inclusion and community integration for these youth and young adults.
This Report is limited to a review of federal programs that may be involved in support for transitioning youth and young adults with ASD. Most of these programs either serve the general population or the broad disability population; only a small set of individual federal grants within programs specifically target youth and young adults with ASD.
The larger disability system plays a critical role in the United States in working to ensure that individuals with disabilities have access to the services and supports that they need to lead independent, self-determining lives and participate fully in the community. Sustained support for the larger disability system and thoughtful consideration of its intersections with ASD initiatives is a vital foundation for efforts going forward to address the needs of individuals with ASD as they enter adulthood. In addition, the federal investments reviewed in this Report suggest that there is a dearth of research and services focused on the needs of individuals with ASD as they enter adulthood and the years beyond. More research and efforts for service and resource expansion should be considered in order to better serve this population. Specifically, there is a need to:
- Design, develop, evaluate, and implement cohesive programs that enable delivery of services in a coordinated, comprehensive, and individualized manner;
- Conduct research to test the efficacy of new and existing service and support models that are designed to improve outcomes for youth and young adults with ASD;
- Increase access to, and the quality of, services and supports;
- Assure the health, well-being, and full integration into community life of youth and young adults with ASD;
- Increase provider training and public acceptance of the neurodevelopmental differences and strengths associated with ASD; and
- Alleviate the growing burden of navigating multiple systems for individuals and their families. Support is needed generally for individuals and their caregivers who too often are required to understand complex program provisions and eligibility without the help of trained professionals or without the proximity or affordability of those programs.
A more integrated and coordinated system of supports, services, and research that accounts for the heterogeneity of the ASD population transitioning to adulthood and their caregivers is needed. Additional work is thus necessary for the federal agencies and external stakeholders with equities in ASD to address the need for integration of funding sources, outcomes research, surveillance, and services among and across those offered to youth in the educational system and those provided to adults in the health care and social services systems. This Report provides the initial assessment of the gaps and a description of existing federal resources.
¶¶¶¶ These conclusions and recommendations are being set forth in this report pursuant to statutory directions from Congress and as such do not constitute recommendations from the Administration for federal legislation.
***** The blending and braiding of funds are done at the state and local level. The federal funds received by the PROMISE projects were awarded as discretionary grants by the Department of Education. SSA is funding the evaluation of PROMISE.
††††† Also provided are general group transition services for those students and youth who may not have yet applied for VR services; and individualized transition services for students and youth with disabilities who apply and are determined eligible for VR services under an approved individualized plan for employment.