OASH Stakeholder Listening Session

In preparing this Report, the Office of the Assistant Secretary for Health (OASH) conducted a Listening Session on February 6, 2017 (with follow up phone consultations thereafter), with stakeholders who included leading researchers in the field, advocacy groups, and individuals on the autism spectrum as well as parents of such individuals. This listening session reviewed general findings regarding federal investments on transitioning youth with ASD, and gained insights from these stakeholder groups regarding research and service gaps for this population. Their shared insights mirror those provided to the IACC in its Request for Public Comments, as well as those provided by a panel of stakeholders interviewed by the GAO.

Gaps in Research

Descriptive Data

The stakeholders expressed concern that little national level data exists to help understand the needs of transition-age youth with ASD relative to the types and degrees of strengths and challenges they have. The nationally representative data for this population exists across multiple datasets and ends at age 25, and existing national surveys do not typically contain enough information to characterize adequately individual variation in strengths and needs. Similarly, little to no publicly available data exists to help understand what students are receiving in terms of transition planning.

In addition, the extent to which individuals with ASD are receiving the specific supports and services they need is not known. There are services available to this population through existing resources, but an accurate estimate of how many people are found ineligible for them is lacking. The extent to which existing supports and services received are actually effective for this population, or alternatively, what happens to people when they drop out of existing services, is also not sufficiently understood.

Finally, a landscape assessment of privately funded resources is suggested in order to complement this Report on publicly funded programs and research. An established interagency coordination activity could incorporate and use data from such a landscape assessment (which would need to be constantly maintained and updated) to design better systems and conduct evaluations of outcomes.

Existing Programs Available to Study

Stakeholders view research regarding which programs and their components are most effective with which ASD subgroups as critical. However, research in this field is hampered by the fact that there is limited availability of transition programming specific to youth and young adults with ASD. There are 'islands' of comprehensive programming, but these are scattered across the United States, and insofar as they are mostly located in densely populated areas, represent a disparity in access for those who live in rural areas. Many of these programs are local and rely on private rather than public funding; some benefit from non-profit, leader-driven resourcing that may be difficult to replicate in other communities without that specific leader. In order to begin to identify effective program components, several research areas are suggested, including:

• Identification, operationalization, and measurement of what constitutes positive outcomes and the aspects of transition planning most likely to lead to such outcomes for this heterogeneous population;
• Development of new programs designed to facilitate transition planning and optimize outcomes;
• Research studies designed to test whether programs are effective in producing their intended outcomes (efficacy testing);
• Adaptation and efficacy testing of promising programs in different settings and with different subpopulations of ASD youth and young adults;
• Implementation and dissemination of research findings of promising programs, based on efficacy testing;
• Scale-up of program models found to be effective in different settings and with different population(s);
• Analyses of outcomes obtained by effective models to identify which program components are most effective for which subpopulation(s); and
• Translation of research into practice through outreach and dissemination of information across a variety of cultural contexts.

Thus, there remain many questions about youth with ASD who are in transition, such as: What programs are producing positive effects for which subgroups of youth and young adults with ASD? Which components of innovative programs are key for success? What service models already exist for other disability groups that could be modified to meet the needs of transition-aged youth and young adults with ASD?

Research on Outcomes

Outcomes research is critically needed to help develop and optimize services and supports for adults with ASD, in the view of stakeholders. Outcomes for those with ASD are extraordinarily disparate, reflecting the heterogeneity of the population. Research is essential to understanding which functional outcomes (e.g., employment, community integration, and housing) have the most significant implications for individual quality of life across different subgroups of youth and young adults with ASD. Also important in assessing program efficacy is an understanding of what skills and supports, including the appropriate role of the family, are necessary in order to maintain work positions and social connections once they are obtained. Development of a standardized set of outcome measures that broadly addresses issues related to quality of life, rather than simply employment or independent living status, is critically important. This area of concern is being addressed in part by the National Quality Forum, a public-private partnership to promote and ensure patient protections and healthcare quality through measurement and public reporting.

Meaningful transition process and outcome measurements are key elements in appropriate program planning. For example, more may be needed than simply tracking whether transition planning occurred on time or not (as current federal tracking requires), or whether or not an individual is able to engage specific resources or life domains (e.g., postsecondary education, health care or rehabilitation services, employment, etc.). Instead, the most important outcomes for stakeholders are:

• Whether or not that individual achieved independence to the extent possible;
• Some individually meaningful measure of social connectedness;
• Life satisfaction and well-being; and
• Overall favorable health status.

In this context, population-based outcome measures of program success are not nearly as important to stakeholders as are individualized, life course outcomes, thus suggesting that mixed methods approaches that employ both quantitative and qualitative data collection tools are particularly needed.

Consideration should be given to whether research on program efficacy or effectiveness should focus not only on the services provided, but also on whether or not these are individualized to support personal development of key life course goals in a heterogeneous population. Concomitantly important are considerations such as how such research could best be conducted, and what and how outcomes would be measured. Population-level measures are important for determining whether the needle is being moved on outcomes for all, but individual-level measures indicate whether goals and services are moving toward outcomes that an individual wishes to achieve.

Research on Access and Barriers to Services

As described in Part 1 of this report, youth and young adults with ASD lag behind other disability groups in terms of connecting to adult social roles, such as successful employment opportunities, independent living (including independent living with assistance), and engagement with postsecondary education and training. Little is known regarding the barriers to successful achievement of individual life goals among this population. Some potential large-scale barriers include:

• Federal and state eligibility criteria for public services for individuals with disabilities are often tied to having an intellectual disability, thus excluding individuals who need services from receiving them. Intellectual disability co-occurs with ASD only about one-third (31.6 percent) of the time, leaving up to two-thirds of this population potentially without covered services. Greater formal recognition is needed that social interaction challenges and co-occurring mental health conditions may also present significant challenges for accessing community living among youth and young adults with ASD.
• Many publicly funded services end at age 18, with few bridges between high school and adult services.
• It is difficult to find adult providers who are trained and available to care for young adults with ASD.
• Individuals, families, and providers may lack information about the transition process, including the availability of, and eligibility criteria for, existing programs.
• A lack of coordination across services and supports leaves individuals and families to piece together services across different systems on their own. In addition, recent changes in program eligibility for adult services, insurance, and disability assistance add to the information demands involved.
• Models of coordinated services that include supports for caregivers are needed, especially as caregiver's age.

Research examining access and barriers to services, as well as developing and testing the programs and delivery systems that may help to overcome these barriers, may be important in order to improve life course outcomes among youth and young adults with ASD.

Gaps in Services and Programming

Individualized Planning

There is significant heterogeneity with regard to the ASD population. Because ASD can include such a wide range of barriers and challenges across multiple domains of functioning, stakeholders believe a broad array of options and customized solutions is needed to appropriately address the service needs of individuals with ASD who are transitioning from youth to adulthood; one-size solutions across the autism spectrum are not possible and could even be unintentionally harmful. Thus, stakeholders strongly recommend highly individualized transition planning at a young age for those on the autism spectrum.

Under IDEA, Part B, Individualized Education Programs (IEPs) are used to help plan individualized interventions and supports for school-aged children. An Individualized Plan for Employment (IPE) is developed for eligible individuals with a disability receiving services under the Vocational Rehabilitation Services program that is designed to achieve a specific employment outcome that is selected by the individual.

However, in FY 2015, only 10,317 individuals with ASD between ages 16 and 24 received VR services; this is approximately two percent of the estimated 450,000 young people with ASD aged 16 to 24 in the United States.‡‡‡‡ A similar type of individualized planning that includes life goals (including but not limited to employment), as well as bridging between school-based services and employment, is needed to facilitate the transition to adulthood and beyond for young people with ASD who are not eligible or do not apply for VR services, in the view of stakeholders. One approach to help bridge this gap would be to adopt the use of individualized learning plans (ILPs) that help identify individual life goals and needed services and supports, in order to facilitate the creation of continuing objectives for individuals with ASD, including post-secondary education, employment, housing, social network development, and other areas critical to successful life as an adult.

Coordinated, Comprehensive Care Responsive to the Range of Individual Needs

Coordinated service systems at the individual level are essential to improve access to needed services and supports, including the health care system. As described in Part 1, the heterogeneity of this population combined with a high rate of co-occurring conditions have a major impact on the individual's health, including decreased life span, increased suicidal rates and ideation, and undiagnosed preventable illnesses.

Coordinated, comprehensive services and supports at the individual level may need to be supported by mechanisms for interagency partnership and coordination at the federal level. Stakeholders see a great need for more blended or braided funding streams to successfully meet the complex needs of this population. Particularly vulnerable groups are youth and young adults with ASD who have intensive mental health needs (anxiety, depression, explosive behavior, etc.). Federal and state systems that are siloed—that only provide for educational services, broad disability supports, or mental health services— are unable to address the complex, multifaceted needs of these individuals.

Transition Planning

There is currently little research, and no consensus in the scientific community, available on the issue of when transition planning should begin. The IDEA requires that postsecondary goals and the transition services (including courses of study) needed to assist the student in reaching those goals be in place by the student's 16th birthday; IDEA regulations also permit postsecondary goals and transition services to be included in IEPs of younger students if determined appropriate by the IEP Team. Often, however, planning for transition is delayed until the year before schooling is completed. Consistent with the public comments to IACC and the GAO report on transition, stakeholders agreed that transition planning needs to start at a much younger age than 16, and as early as age 10 or 12; accordingly, information about program resources needs to be made available long before transition actually begins. In addition, all those with a key role in the child's development should begin transition planning relative to the child's needs as soon as possible. Some would argue that transition planning for children with special health care and service needs begins at birth and continues across the life span through the development of independence, integration into the community, and increasing specification of tangible plans for adult life.

On a related note, IEP Team meetings under the IDEA are conducted annually but are typically focused on planning only for the following year. There is little to no overarching planning toward preparing a student to achieve life goals and realize individual potential to maximize skills and abilities. Throughout the planning process, stakeholders believe that explicit and continuous attention is necessary to the decision-making supports that youth may need. Reticence among caregivers about relinquishing care and decision-making responsibilities, and difficulties in letting go of long-standing provider relationships, should be addressed as well.

In addition, clinical resources for transition planning developed through Got Transition. These resources define the basic components of transition support and are applicable across a broad range of health care services.

High-Quality Services and Programming that Challenge All Young People with ASD

Stakeholders expressed concern regarding inconsistency in the quality of services and programming available; too often, transitioning youth with ASD are prepared by transition programs to cope with the lessening of services and supports in adulthood, rather than being guided through a process of identifying life goals and planning for their achievement. The external stakeholders expressed a critical need for programming that prepares youth for meeting the challenges of adult life, as opposed to focusing on ways to manage the free time that may result from the reduction in services. Setting low expectations may inhibit individuals with disabilities from reaching their full potential as adults. As described above, the use of an ILP to help plan for transition to and continuing growth in adulthood could help address this significant gap. Stakeholders noted several specific service gaps and potential remedies:

• High-quality effective vocational rehabilitation services are crucial for those in transition in order to prepare youth for attaining competitive integrated employment.
• Adult residential and integrated day or partial-day service resources are critically needed, especially those that provide services that are integrated into community activities rather than in institutions or other isolated settings.
• It is critical for integrated day programs to be available that are specifically tailored to meet the needs of those individuals with very extensive support needs. Federal incentives to scale integrated day programs to meet ASD population needs are needed, as is more consistent quality in state-funded integrated day programs.
• Programs that help prepare individuals with ASD for postsecondary education and training opportunities are needed. This involves community integration through summer programs and additional orientation activities for non-enrolled students. (As an example, Marshall University has one such program for students with ASD attending its university; for additional information, see http://www.marshall.edu/atc/).
• Access to adequate crisis care designed for youth and young adults with ASD is crucial. As more supports and services are moved into community-based services, families must have access to services that can help maintain physical and mental health as necessary.
• It is critical that health and safety issues be addressed. Some individuals on the ASD spectrum may be inclined to wander and not be able to manage public transportation. They may not be understood by first responders or police during law enforcement activities and interact in atypical ways that lead to unnecessary use of force. They also may be disproportionately subject to abuse, both physical and sexual.
• Also necessary is greater awareness and acceptance by employers, educators, providers, and the general public of both the gifts and talents of, and significant challenges experienced by, those on the autism spectrum. Strategies for reducing stigmatization, as well as supports and services that help to facilitate positive and meaningful social connections, are crucial. Stereotyping (e.g., for STEM skills) may also inhibit integration into the community, and highlights the need for increased understanding.
• Community integration is essential, whether for those with extensive or less extensive needs; all individuals with ASD should have the same opportunities as others to be included in the work and social lives of their communities.
• It is vital that programs and services carefully consider the role of the family during the process of transitioning to adulthood. Understanding how to support and include families, without undermining the autonomy of the individual with ASD, is an important but complicated need.

Finally, the stakeholders stated that it is crucial that programming and services address the existing disparities in receipt of high-quality care across different subpopulations of youth and young adults with ASD, mirroring the health disparities that exist at the national level. Also important to consider is the disparity in receipt of health care transition preparation for youth with ASD as compared to youth with other chronic health conditions.

Public Comments to IACC

In 2016, the IACC collected information from stakeholders regarding the transition period from youth to adulthood for persons with ASD through a Request for Public Comment. The major issues that emerged from the public comments included the need for:

• Improved transition planning in high school;
• More opportunities to strengthen daily living and social skills in the transition period;
• Better coordination of transition services;
• Increased access to transition services and reduced waiting times;
• Better preparation for employment, post-secondary education, and community integration;
• Reduction in disparities in access to services for low-resourced and underserved communities;
• Personalized services based on individualized needs; and
• Strengthened workforce of trained providers and other professionals to meet the service and support needs of this transition-age population.

GAO Roundtable Views of Services Needed During the Transition into Adulthood

As mentioned in Part 1 of this Report, GAO's 2017 Report (Roundtable Views of Services Needed During the Transition into Adulthood)⁴ focused specifically on ASD and transition. In particular, GAO conducted a qualitative study involving a panel roundtable with researchers, other professionals, advocacy groups, and caregivers. The panel described services and supports that transitioning youth with ASD aged 14–24 may need in order to address particular challenges they may face. It did this for each of the five life goals identified as critical to transition: postsecondary education, employment, maximizing independent living, health and safety, and maximizing community integration. GAO grouped these services into 14 broad categories (Table 3):

Based on the panel's input, the GAO report concludes that supporting a successful transition into adulthood requires providing youth with ASD greater access to services that are:

• Individualized to each person's needs;
• Sensitive to the fact that these needs may change over time;
• Available to all youth with ASD regardless of race/ ethnicity, gender, family income, or location;
• Within youths' local communities in order to foster access and community involvement; and
• Evidence-based to the extent possible, with recognition that most existing programs have not been scientifically evaluated, and efficacy testing of new and existing program models is needed.

In addition, the GAO cites the need for shared responsibility between society and youth with ASD in order to improve community inclusion and integration of this population. As an example, the panel noted that youth with ASD should learn workplace social expectations and strive to meet these norms, but at the same time employers should recognize that some social rules, such as expecting individuals to smile, can be challenging for some individuals with autism.iv Greater public awareness and knowledge of ASD could lead to better understanding of the gifts and talents of youth with ASD. This will improve the likelihood that they will reach their life goals and contribute in greater ways to society, including through meaningful gainful employment opportunities.

Summary of Input from Stakeholders

Based on information collected by OASH from stakeholders and from the GAO consultations in preparation of its report, it is clear that youth with ASD and their families and caregivers have complex needs requiring comprehensive approaches that are not necessarily found in programs devoted to addressing singular life aspects (e.g., health care, housing, transportation, social services, or education). Further, they report that agency programs focusing only on children and youth most often have little contact with programs that focus on adults;§§§§ hence, stakeholders recommend that coordination of services and supports across programs and periods of life is necessary in order to serve the diverse and complex needs of youth with ASD in transition to adulthood.

‡‡‡‡ The number of youth with ASD meeting eligibility criteria for VR services may increase with the WIOA amendment's emphasis on transition planning, and the new requirement for pre-employment transition services for students with disabilities who are potentially eligible for VR services.

§§§§ One resource that does bridge this gap are the special education programs under IDEA that coordinate with state VR programs on transition planning and services.