Youth with Autism: Federal Agencies Should Take Additional Action to Support Transition-Age Youth

Research suggests that youth with ASD are less likely than youth with other disabilities to be successful in transitioning to work and postsecondary education and therefore, they may face a lifetime of reliance on public assistance. GAO was asked to examine services provided under IDEA to assist youth with ASD in transitioning to adulthood. For this report, GAO examined (1) services and supports provided to assist youth with ASD in transitioning to adulthood, (2) key challenges in successfully transitioning, and (3) the extent to which federal agencies have collaborated to assist in the transition.

GAO reviewed relevant federal laws and regulations and conducted a nationally generalizable survey of 588 school districts to gather information on services provided in school year 2015-16. GAO also interviewed federal officials and state and local stakeholders in three states selected to highlight a mix of localities with and without initiatives serving this population, urbanicity, and geographic dispersion, and GAO evaluated federal collaborative efforts against leading practices.

According to GAO's nationwide survey of school district special education directors, GAO estimates that about 85 percent of districts in school year 2015-16, provided youth with Autism Spectrum Disorder (ASD) services such as instruction on life, social, and behavioral skills, as they transition from high school to adulthood. ASD is a group of complex developmental disorders characterized by difficulties with social interactions, communication, and repetitive behaviors. Districts provided these services as part of the planning for the transition to adulthood required by the Individuals with Disabilities Education Act (IDEA). Fewer, though still a majority of, districts reported providing certain types of employment-related supports. For example, GAO estimates that 69 percent provided work experiences and 63 percent provided job coaching. While the majority of districts reported providing transition services to students with ASD, the services provided varied by factors such as the size and poverty level of the district, according to GAO's analysis of survey responses.

Youth with ASD face key challenges transitioning from high school to adulthood, such as untimely transition planning by school districts, complex adult service systems, and lack of job opportunities, according to stakeholders. IDEA requires districts to begin providing transition services when students with disabilities reach age 16, with the option to start earlier. However, according to GAO's prior work and stakeholders GAO interviewed, providing discretion in this area may not serve some students well. School officials, advocates, and others report that earlier transition planning—with age 14 commonly cited—can have multiple benefits such as allowing more time to obtain important work and academic experiences; however, the Department of Education (Education) is not funding research on the appropriate age to begin transition planning. Unless Education, which administers IDEA, examines the merits of earlier transition planning, policymakers may not have critical information when considering changes to IDEA. Currently, about 32 percent of districts begin transition planning when students are older than age 14, according to GAO's analysis of survey responses.

While the Department of Health and Human Services' (HHS) Interagency Autism Coordinating Committee (IACC) has facilitated collaboration across its member agencies, including Education, to support research for transition-age youth with ASD, it has missed opportunities to collaborate with relevant nonmember agencies. Specifically, the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 calls for the IACC to include in its strategic plan, as practicable, services for individuals with ASD. However, HHS has not regularly engaged certain federal agencies that provide services or financial assistance to transition-age youth with ASD, but are not IACC members, such as the Departments of Labor and Housing and Urban Development. These agencies are not part of working groups tasked with updating the current strategic plan nor has HHS invited them to join the IACC. As a result, IACC may continue to miss opportunities to leverage the knowledge of other agencies—a leading practice for effective federal interagency collaboration—as it works to fulfill its expanded responsibilities under the Act and improve the well-being of individuals with ASD.

GAO is making three recommendations to federal agencies, including one to Education to examine the merits and implications of amending IDEA to require earlier transition planning and one to HHS to enhance collaboration with non-IACC member agencies. Education neither agreed nor disagreed with the IDEA recommendation. The agencies generally agreed with or did not comment on other recommendations.

Students with disabilities are less likely than their peers to successfully  transition to postsecondary education or the workforce, and youth with  autism are even less likely to successfully transition than youth with other  disabilities, according to recent research. When young adults with  disabilities do not successfully transition out of high school, they may face  a lifetime of continued reliance on public assistance, potentially leading to  substantial costs to their families, the government, and society.  Commonly known as autism, Autism Spectrum Disorder (ASD) is a group  of complex developmental disorders characterized by difficulties with  social interactions and communication, highly focused interests, or  repetitive or ritualized behaviors.

Much of the focus on autism has been placed on early diagnosis and  intervention and little is known about the services and supports provided  to help youth with ASD begin managing their lives as adults. You asked  us to study the services and supports provided to youth with ASD as they  transition to adult life. This report, which builds upon our recent work  identifying this population’s needs, examines (1) the types of services  and supports provided at the local level to assist youth with ASD in  transitioning to adult life, (2) the key challenges for youth with ASD in  successfully transitioning to adult life, and (3) the extent to which key  federal agencies have collaborated to assist youth with ASD in  successfully transitioning to adult life.

To examine the types of services and supports provided at the local level  to assist youth with ASD in transitioning to adult life and the key  challenges for youth with ASD in successfully transitioning to adult life, we  used multiple methodologies. We conducted a nationally representative  web-based survey of 588 school districts within the 50 states and the  District of Columbia to gather information on services and supports  provided to students aged 16 to 21 with ASD to assist in transitioning to  adult life during the 2015-16 school year, as well as challenges in  providing these services. We also asked about services provided to  students by level of service need. This survey had a weighted response  rate of 71 percent, the results of which are generalizable. We also  selected three states—Arizona, New Jersey, and South Carolina—to  conduct interviews with local and state stakeholders, such as service  providers and advocacy groups. We selected these states to highlight a  mix of local areas with adult providers specifically involved with initiatives  to serve individuals with autism and those that are not, as well as a mix of  rural, suburban, and urban localities, and geographic dispersion. In two of  these states (Arizona and New Jersey), we conducted site visits and  phone interviews with local and state entities. As part of these local  interviews, we held five discussion groups with youth with ASD and family  members of youth with ASD who had exited high school within the last 5  years, and we conducted interviews with officials of school districts and  staff from postsecondary education institutions. We also met with public  high school special education teachers and multiple adult service  providers in each state. At the state level, we conducted interviews by  phone with representatives of state special education, developmental  disabilities, vocational rehabilitation, as well as behavioral health services  agencies. We also interviewed representatives of university centers of  excellence, parent training and information centers, the state  developmental disabilities council, and state disability advocacy  organizations. To gather additional information on service provision after  high school, we conducted phone interviews in South Carolina with adult  service providers and state agencies. Information gathered from our state  and local interviews and discussion groups, while not generalizable,  provides more in-depth examples of services provided and perspectives  on the challenges facing youth with ASD in transitioning to adult life.

To examine the extent to which key federal agencies have collaborated to  assist youth with ASD in successfully transitioning to adult life, we  reviewed relevant federal laws, regulations, policy, and guidance and  interviewed officials from the Departments of Education (Education),  Health and Human Services (HHS), Housing and Urban Development  (HUD), Labor (DOL), and the Social Security Administration (SSA), as  well as the Interagency Autism Coordinating Committee (IACC) and the  Federal Partners in Transition (FPT) interagency workgroup, which is  composed of Education, HHS, DOL and SSA. We evaluated their  collaborative efforts against leading federal practices for interagency  collaboration, as appropriate. To inform all of our objectives, we  interviewed additional stakeholders, such as employers and several  national disability advocacy organizations. For more information on our  scope and methodologies, please see appendix I.

We conducted this performance audit from November 2015 through April  2017 in accordance with generally accepted government auditing  standards. Those standards require that we plan and perform the audit to obtain sufficient, appropriate evidence to provide a reasonable basis for  our findings and conclusions based on our audit objectives. We believe  that the evidence obtained provides a reasonable basis for our findings  and conclusions based on our audit objectives.

Characteristics, Needs, and Outcomes of Transitioning Youth with Autism Spectrum Disorder

According to the Centers for Disease Control and Prevention (CDC),  about 1 in 68 children were identified as having ASD in 2012 (about 1.5  percent of 8-year-olds). ASD is a complex developmental disorder with  characteristics that can range from mild to more pronounced (see fig. 1).

Each autism characteristic may vary in type and degree from person to  person and can fluctuate over time. The combination of characteristics  results in a highly individualized condition, as illustrated in figure 2.

To successfully transition into adulthood, youth with ASD need to be able  to access services that are individualized, timely, equitable, and  community- and evidence-based, among other things, according to a  roundtable panel we convened in 2016 to examine the needs of  transitioning youth with ASD. The panel also identified 14 key services  and supports that may help youth with ASD attain the goals of education,  employment, health and safety, independent living, and community  integration as they transition to adulthood (see table 1).

Recent research analyzing the outcomes of youth with ASD suggests that  they encounter obstacles to attaining their goals for adulthood. According  to analysis of data from Education’s National Longitudinal Transition  Study-2 (NLTS2), in 2009:

36 percent of young adults with ASD had attended some type of  postsecondary education institution. Of those youth, 32 percent had  attended a 4-year college; 70 percent had attended a 2-year college;  and 33 percent had attended a vocational, business, or technical  school.

19 percent of autistic adults in their early 20s had lived independently  at some point, either with or without supports. Fourteen percent had  lived in a supervised setting, such as a group home or medical facility,  which may have provided services such as life skills education or  vocational supports. The analysis further indicates that young adults  with autism are less likely to live independently than youth with other  disabilities, including intellectual disabilities and emotional  disturbances.

About one-third of young adults with autism did not participate in any  community activities, and one-quarter had not had any contact with  friends for at least a year.

School-Based Special Education under IDEA

In elementary and secondary school, students with disabilities—including  students with autism—are entitled to receive special education and  related services through the Individuals with Disabilities Education Act  (IDEA), which is overseen at the federal level by Education. Part B of  IDEA requires states to make a free appropriate public education in the  least restrictive environment available to eligible children with disabilities  as a condition of grant eligibility. In general, under Part B, Education  provides formula grants to assist states and school districts to pay the  excess costs of providing special education and related services to  eligible students with disabilities, including those with autism, beginning at  age 3 and lasting through 21, depending on state law or practice. In  general, school districts provide public school students with special  education and related services—such as speech therapy, psychological  services, and physical therapy—tailored to their needs based on an  individualized education program (IEP). An IEP is a written statement  developed by a team of school officials, parents, the student if  appropriate, and at the discretion of the parent or school, other individuals  who have knowledge or special expertise regarding the student. The IEP includes, among other information, a statement of the child’s present  levels of academic achievement and functional performance, annual  goals and a statement of the special education and related services and  supplementary aid and services needed to attain those goals. Beginning  no later than the first IEP to be in effect when the student turns age 16, or  younger if determined appropriate be the IEP team, a student’s IEP must  include postsecondary goals and the transition services needed to assist  the student in reaching those goals. To the extent appropriate, and with  the consent of the parents or student who has reached the age of majority  under state law, schools must invite representatives from state vocational  rehabilitation (VR) agencies to IEP team meetings where postsecondary  goals and transition services will be discussed. These students remain  eligible for transition planning and services, as well as other IDEA  services, until they exit high school.

Title I of the Rehabilitation Act of 1973 (Rehabilitation Act), as amended,  contains new federal requirements in the state VR program, administered  by Education, that require state VR agencies to provide pre-employment  transition services to students with disabilities who are eligible or  potentially eligible for VR services. State agencies may also provide  transition services to groups of students and youth with disabilities prior to  or after applying for VR services. Finally, VR agencies may provide  individualized VR services including individualized transition services, to  students and youth with disabilities who have been determined eligible for  VR services under an approved individualized plan for employment under  the VR program. Students may apply for and be determined eligible for  VR services prior to graduating from high school, and youth may apply for  and be determined eligible for VR series prior to reaching adulthood.

Generally, as they enter adulthood, youth and young adults with ASD  may seek to obtain needed services from the state adult service systems,  which are funded by multiple federal agencies:

HHS’s Centers for Medicare & Medicaid Services (CMS) oversees  Medicaid, which can be used to fund long-term and home- and  community-based services. These services are generally  administered to eligible individuals with ASD through state agencies  serving individuals with developmental disabilities or disabilities more  broadly.

Education’s Rehabilitation Services Administration, within the Office of  Special Education and Rehabilitative Services, funds the VR State  Grants program to assist individuals with disabilities including  transition-age students and youth with ASD in developing the skills to  prepare for, secure, retain, advance in, and regain employment. This  program is in the form of federal/state matching grants provided to  state VR agencies.

SSA provides cash benefits to qualifying individuals through the  agency’s Supplemental Security Income (SSI) and Disability  Insurance (DI) programs. Individuals can apply for benefits through  SSA field offices.

DOL provides funding for employment and training for a broad array  of individuals with barriers to employment, including youth and those  with disabilities, often through the One-Stop delivery system. HUD  provides funds for rental assistance for low-income individuals with  disabilities through various programs, offers online tools to assist with  locating housing resources, and funds Housing Counseling Agencies  that assist families and individuals seeking affordable housing.

Interagency Autism Coordinating Committee

The Autism Collaboration, Accountability, Research, Education, and  Support Act of 2014 (Autism CARES Act) reauthorized the Interagency  Autism Coordinating Committee, which is led by HHS and composed of  representatives from multiple HHS subagencies, Education, the  Department of Defense (DOD), and the Environmental Protection Agency  (EPA), as well as certain non-federal stakeholders. Among other things,  the IACC is responsible for developing and annually updating a strategic  plan with budgetary recommendations for ASD research. The 2013  strategic plan (the most recent plan), is divided into seven general topic  areas that were created to address critical gaps and opportunities. Each  general topic area includes specific objectives and a recommended  budget for associated research-related activities. The 2014  reauthorization expanded the scope of the strategic plan to include, as  practicable, services and supports. The strategic plan is intended to  promote public-private coordination and community engagement and to  accelerate research and service efforts to improve the health and well- being of individuals with ASD. The IACC is also responsible for  monitoring ASD research across federal agencies, and the 2014  reauthorization also expanded this monitoring role to include, as  practicable, monitoring of services and support activities. In the past, the  IACC has fulfilled the responsibility for monitoring research by tracking  and compiling information on ongoing research in the field. The Autism  CARES Act led to the creation of the role of the Autism Coordinator within  HHS, separately but in coordination with the IACC, to oversee and  implement federal ASD activities nationwide, taking into account the  strategic plan developed by the IACC, and ensure that federal ASD  activities are not unnecessarily duplicative.

We have conducted previous work on IACC’s federal autism activities. In  2013 we reported that the IACC’s and federal agencies’ efforts to  coordinate and monitor federal autism activities were limited.  Specifically, IACC members provided mixed views on the usefulness of  the IACC’s meetings, strategic plan, and portfolio analysis in aiding  coordination and monitoring activities, and only some agencies regularly  used the committee’s strategic plan and research funding analysis.  Additionally, we found that shortcomings in the data the IACC used for its  research funding analysis limited its ability to coordinate HHS autism  activities and monitor federal autism activities. We found that, collectively,  these weaknesses limited the IACC’s ability to monitor its progress. For a  complete list of our previous work in this area, see the Related GAO  Products page at the end of this report.

Most School Districts Reported Providing Life and Social Skills Services; Other Services Varied Based on Factors Such as Size and Poverty Level

School Districts Reported Providing Life and Social Skills Services; Fewer Provided Services to Prepare for Employment, Housing, and Transportation

Based on the results of our nationally generalizable school district survey,  we estimate that in school year 2015-16 most school districts (about 85  percent) provided transition-age students with ASD instruction on life and  social skills, as well as behavioral skills (see fig. 3), services we  previously reported such youth may need to support their transition to  adulthood. Self-advocacy (87 percent), social (86 percent), and  organizational (86 percent) skills were provided by the most districts,  according to our survey. Schools may employ different strategies for  providing these services based on individual student needs. For instance,  officials we interviewed in one district said that for many students with  occasional behavior issues, staff teach students how to cope with and  have control over their emotions. However, if a student needs intensive  behavioral supports, the district may send the student to a nonpublic  school that specializes in serving youth with ASD. The officials noted that  it is difficult to find teachers who understand how to support students with  intense behavior issues.

Fewer, though still a majority of, school districts reported providing certain  types of services to support the transition to employment, according to  our survey. Specifically, while an estimated 85 percent of districts  reported providing career counseling, we estimate that 74 percent  provided interview skills, 69 percent provided work experiences, and 63  percent provided job coaching. In Arizona and South Carolina, state VR  officials reported partnering with some school districts to provide  employment-related services. For example, in South Carolina, VR state  officials told us they partner with some school districts to provide job  coaches to high school students with disabilities, including ASD. In all  three states in our review, state VR agency officials told us they were  developing plans for how they will enhance pre-employment transition  services to school-age students with disabilities.

Certain mental health and independent living skills were provided by the  fewest districts, according to our survey. Specifically, an estimated 40  percent reported providing one-on-one or group psychological counseling.  About one-half of districts reported providing education and planning on  transportation options and 35 percent of school districts reported  providing housing education and awareness. As figure 3 illustrates, more  districts reported referring students out to community providers for  psychological counseling and housing education compared to other   services; the extent to which these students actually receive these  services is unknown. One reason school districts do not typically provide  housing education and planning is that it may not be a priority for families  as youth are leaving school. As one school district official said, parents  typically are not looking for housing options for their transition-age youth.

Stakeholders we interviewed emphasized that the services provided to  each individual student with ASD vary widely based on individual need  and goals for transition. Likewise, in our survey school districts reported  differences in the services provided to transition-age students with low-,  moderate-, and high-intensity needs. This may be expected given that  IDEA requires school districts to determine special education services  based on the individual needs of each student; moreover, the needs of  individuals on the spectrum vary widely. For example, we estimate that  in the 2015-16 school year, a higher percentage of districts provided  students with low-intensity needs with college counseling compared to  those with moderate- and high-intensity needs. In contrast, a higher  percentage of districts provided students with moderate- and high- intensity needs with daily living skills compared to those with low-intensity  needs in that same year. In general, for the majority of transition services  we asked about, a higher percentage of districts reported providing  services to students with high- and moderate-intensity needs. (See table  2 for the services most and least frequently provided by level of student  need).

District-Provided Transition Services Varied by District Size and Poverty Level

While the majority of school districts reported providing some types of  transition services to students with ASD, the specific services that districts  reported providing varied depending on the size and poverty level of the  district, according to our analysis of school districts’ survey responses. In  particular, we estimate that a higher percentage of large school districts  generally reported providing transition services compared to small school  districts, and a higher percentage of low-poverty school districts reported  providing transition services compared to high-poverty school districts for  certain services.

According to our analysis of survey responses, a higher percentage of  large school districts generally reported providing transition services  compared to small school districts. When comparing larger school  districts (those serving more than the median number of students per  district) to smaller districts (those serving fewer than the median number  of students per district), we estimate a difference of roughly 30  percentage points in providing several services to support the transition to  employment, daily living skills, training on community safety, and  education on and awareness of transportation options (see fig. 4). For  example, we estimate 82 percent of larger districts provided work  experience compared to 52 percent of smaller districts. Similarly, we  estimate 87 percent of larger districts provided interview skills training  compared to 56 percent of smaller districts. The differences may be  because larger districts are better able to provide services in-house, as— for many of these services—a higher percentage of small school districts  reported referring students to other providers. In addition, a higher  percentage of respondents for smaller districts reported that they did not  know if the school districts provided the services, compared to larger  school districts.

Services provided in school also varied by the type of community where  the school district was located—urban, suburban, or rural—according to  our analysis of school districts’ survey responses, but in some cases this  was related to district size. We estimate that smaller urban and suburban  districts were significantly more likely to provide certain vocational  supports (job coaching, interview skills, and formal vocational  assessment), as well as daily living skills, transportation education and  awareness, community safety, civic engagement, and behavior skills  when compared to smaller rural districts. However, when we compared  larger urban and suburban districts to larger rural districts, the differences  in services were not statistically significant.

Based on our survey, we estimate that a higher percentage of low-poverty  school districts reported providing transition services compared to high- poverty school districts for certain services. For example, we estimate  that 70 percent of low-poverty districts provided job coaching to transition- age youth with ASD compared to about 50 percent of high-poverty  districts. Similarly, we estimate that 58 percent of low-poverty school  districts provided one-on-one or group psychological counseling to  transition-age youth with ASD compared to roughly 38 percent of high- poverty districts—a difference of about 20 percentage points (see fig.5).  In one high-poverty school district we visited, teachers and administrators  said they had limited funding to enable students to get experiences  outside of the school. Specifically, they said transportation and  supervision costs make it difficult to provide students with community  experiences. In our 2016 report on the needs of youth with ASD, the  roundtable panel emphasized the importance of providing some  educational services outside the classroom and locating services in the  neighborhoods where youth live. Our panelists noted that many life skills,  such as grocery shopping or taking a bus, are best learned  experientially—by practicing them in the community—especially for youth  with ASD who may have difficulty transferring skills learned in one  location, such as the classroom, to another environment, such as the  community.

Adult Service Providers Offer Employment and Other Transition Services to Young Adults after Leaving High School, as Seen in Selected States Vocational Supports and Day Programming

Adult service providers offered various types of services to transition-age  young adults with ASD as they transition from high school to adulthood.

Day Programming: Examples of Key  Service Needed to Support Transitioning  Youth with Autism   A day program in Newark, New Jersey serves  adults with Autism Spectrum Disorder with  high intensity needs from low-income families  in the Newark community. The day program  focuses on providing adult daily living skills,  community exploration, pre-vocational skills,  and social and emotional skills. Clients are  served in small group environments. The staff  said that while the program has a large  waiting list it is important to keep the ratio of  clients to staff small to ensure overall quality. their transition to adulthood. For example, in Arizona one developmental  disabilities service provider offered its adult clients supervised  employment in group settings both at businesses in the community and  in-house at an adult center. Another service provider ran a vocational  training program for young adults with ASD. The program has a number  of work areas, such as reception, technology, and design, in which the  client chooses one area to train in for a year. In addition to learning the  skills for a specific work area, youth learn pre-employment skills such as  getting along with others, following instructions, and appropriate work  etiquette. A few providers we interviewed sent their clients to workplaces  with a coach to supervise and assist them on the job, with the level of  coaching determined by the needs of the individual. For example, one  provider said they have staff check on some clients at their place of work  for an hour three times a week, while other clients who have a higher  level of need have a full-time coach.

Some of the adult service providers we interviewed reported providing  residential supports—another service we previously identified that youth  may need to support their transition to adulthood—funded either through  the state developmental disabilities services agency or private, out-of- pocket payments. In Arizona and South Carolina, a few adult service  providers we interviewed were developing housing or independent living  programs for individuals with ASD. For example, a provider in Arizona  recently started a residential independent living program for individuals in  its vocational program. The program serves six individuals and has a  small waiting list. Individuals initially receive training on using public  transportation, managing their own finances, and safety skills for being in  the community and at home. They then move to supervised apartments  with the ultimate goal of eventually living in apartments independently. In  South Carolina, a non-profit organization serving adults with ASD was in  the process of establishing a new independent living program with the  goal of helping individuals live independently in an environment that  meets their needs and interests.

Postsecondary education supports is another service area we previously  identified that youth with ASD may need to support their transition to  adulthood, and representatives of postsecondary education institutions  we interviewed in three states reported providing their students with ASD  with accommodations, as they reported they do for all students with  disabilities who self-identify and show need for an accommodation.  Services commonly provided, according to college officials, include  instruction in time management and organizational skills, or  accommodations such as assistive technology or additional time and a  distraction-free location for test-taking. A few of the colleges we contacted  also had specialized postsecondary education programs for individuals  with developmental and intellectual disabilities that focused on helping  them prepare for employment and independent living. However, such  programs may be cost prohibitive for many families, and some students  may only participate for 1 or 2 years due to the cost, according to one  college administrator.

Non-profit advocacy groups in the states we visited provided supports to  the families of young adults with ASD. Family education and supports is  another service area we previously identified that may be needed to  assist youth in the transition to adulthood. For example, one non-profit  in New Jersey hosts a transition fair annually and maintains a referral  database on its website to help families identify supports including  transition and adult services. A non-profit organization in Phoenix,  Arizona, holds monthly meetings for transition-age youth and their  parents with speakers on various topics, such as financial planning,  sexual education, and disability resources for college. The organization  also provides individual assistance to families for how to apply for  services and benefits as they transition to adulthood, such as Social  Security benefits. Other adult service providers we interviewed reported  offering in-home supports to family members or workshops for families.

A few adult service providers we interviewed told us they taught safety  skills to individuals with ASD as part of their independent living and  vocational training programs. One provider taught clients how and when  to call 911, how to store food properly, and about sexual education.  Parents and family members of transition-age youth in three of our five  discussion groups expressed concern for the safety of their young adults,  including interactions with law enforcement. For example, one father in a  New Jersey discussion group worried about whether law enforcement  officers would interpret his son’s literal answers to questions as being  disrespectful or defiant. Staff we interviewed at a service provider in  South Carolina reported they offer training for law-enforcement and first  responders on how to identify signs that an individual has ASD and how  to interact with these individuals.

Untimely Transition Planning, Complex Adult Systems, and Few Employment Opportunities Are Key Challenges to Transitioning to Adult Life, According to Stakeholders Transition Planning Sometimes Occurs Too Late to Meet Students’ Needs, According to School Districts, Service Providers, and Others

IDEA currently requires schools to include in the IEP transition services  needed to assist youth in reaching their appropriate measurable  postsecondary goals no later than the first IEP in effect when students  reach age 16. According to our analysis of school districts’ survey  responses, almost all school districts reported beginning transition  planning for students by age 16. However, the majority of school  districts surveyed (an estimated 72 percent) reported that age 14, or  younger, would be the most beneficial age to begin transitioning students  to adult life. Our estimates from school districts’ survey responses  indicate that approximately 32 percent of districts—which represents  about 4,000 school districts—begin transition planning when students are  older than age 14. By not starting transition planning until after age 14,  these districts—covering more than 1 million students with disabilities— may not be providing youth with the additional time needed to build the  skills for adult life, and the time for schools, parents, and service  providers to develop IEPs that align with the goals and needs of youth  transitioning out of school.

The views of many school districts regarding earlier transition planning is  consistent with the view of several stakeholders we interviewed, as well  as panelists we talked to in our prior work who said that beginning  transition planning before age 16 would be the most beneficial for  students. Stakeholders said that beginning transition planning at an  earlier age, with age 14 or younger being commonly cited in our survey  and multiple interviews, can have many benefits. School officials we  spoke with explained that earlier transition planning allows families more  time to apply for and secure services in the adult system before a student  leaves the school system.

According to Education officials, the agency does not have the authority,  without statutory revisions to IDEA, to change the age requirement for  beginning transition services and has not asked Congress for the  authority to do so. Education officials reported that IDEA currently  provides states and districts with the ability to provide transition services  earlier if so desired. In guidance since at least 2007, and again in January  2017, Education restated IDEA requirements that by age 16, students’  IEPs must address the transition services requirement, and that IEP  teams can provide transition services earlier if determined appropriate.  Education officials also stated they considered age 14 too early for some  middle school age students to begin transition planning because students  may lack the experience and educational development to make decisions  about future life choices.

However, providing discretion in this area may not serve some students  well, according to stakeholders we interviewed. Based on our nationally  generalizable sample of public school districts, we identified at least 29  states that had one or more school districts that do not start transition  planning until the age of 16 or older. Our prior work and stakeholders  we interviewed also reported that starting transition planning at age 16  may be too late. For example, by age 16, students with ASD may be in  their junior year of high school, and many students interested in college  need to be positioning themselves to meet college admissions  requirements before that point. Consistent with findings from our school  district survey, an official from an organization representing school district  officials stated that it is good practice to begin conversations about  transition at or before the beginning of high school, to ensure that  students secure the coursework needed to meet graduation and other  requirements, and that most districts already do so. In addition, research  has shown that some of the most typically at-risk students—low-income  youth and African-American youth—receive transition planning later than  other youth. Although Education funds research on transition planning  for students with disabilities, Education currently does not fund research  evaluating the appropriate age to begin transition planning.

Education guidance specifically identifies taking an appropriate  preparatory curriculum in high school as critical for success in  postsecondary education, stating that students with disabilities need to  make high school curriculum choices that support the goal of  postsecondary education. Early planning also allows more time to ensure  that youth obtain the work, community, and academic experiences  needed to successfully transition to adult life. For example, one district  reported that it lowered its transition planning age to 14 so that youth had  more time to gain valuable work experience by sampling different types of  jobs in the community. Further, lowering the IDEA transition age could  expose students to employment-related services sooner because  transition services and pre-employment transition services through the  VR program are provided to students with disabilities using the IDEA  transition age requirements.

The 2004 IDEA reauthorization increased the age of the transition  services requirement for students with ASD, as well as for youth with  other disabilities, from age 14 to age 16. The legislative history of the  2004 reauthorization of IDEA does not fully explain why this change was  made. During the 2006 public comment period for the current IDEA  regulations on transition services, many commenters disagreed with  changing the transition age from 14 to 16, and a few specifically  requested that Education consider beginning transition services before  age 16. In 2013, public commenters responding to the Federal Partners  in Transition’s (FPT) national online dialogue identified lowering the  transition age as a top idea for addressing regulatory or legislative  barriers for youth. The Advisory Committee on Increasing Competitive  Integrated Employment for Individuals with Disabilities, which was  established to help advance competitive employment opportunities for  individuals with intellectual disabilities, developmental disabilities, or other  significant disabilities, also recommended that Congress amend IDEA to  lower the transition age for all students with significant disabilities to begin  at 14 or earlier. Panelists we spoke to for our prior work also suggested  that transition planning should start earlier—as early as middle school— and cited research noting that any gaps or loss of services during the  transition from a school-based support system to adulthood could have  long-lasting detrimental effects on youths’ health, employment,  educational attainment, and family stability.

Families, Service Providers, and Advocates Reported That Adult Systems and Services Are Often Difficult to Navigate and Access Navigating Service Systems

Stakeholders, including parents, service providers, and advocates, cited  challenges in navigating the transition from the public school system to  adult service systems and accessing needed services.

According to parents and other stakeholder, youth with disabilities,  including those with ASD, and their families often face challenges  navigating the complex adult service systems after exiting from school,  which is consistent with our prior work (see fig. 6). For example, about  70 percent of school districts surveyed identified “lack of assistance  navigating the (adult) service systems” as a challenge for youth with ASD  trying to obtain needed services and supports once they leave high  school. Further, many district officials and teachers we interviewed  expressed doubts that students with ASD would be able to obtain the  necessary services and supports outlined in their final transition plan after  they exit the school system.

Stakeholders and parents in two of our five discussion groups reported  that parents often are not aware of, or do not know how to access, the  adult services available to them after exiting the school system. As one  provider and parents we spoke with explained, parents of young adults  with ASD may not have the time or knowledge needed to successfully  navigate the multiple adult care agencies and paperwork, due to other  responsibilities such as full-time jobs or additional children. Parents and  family members in all five discussion groups described some of these  difficulties navigating adult systems. For example, in one discussion  group, a parent of a young adult reported that she had to work with nine  different state agencies to obtain needed services, including housing and  behavioral management services, and she only learned how to do so by  speaking with other parents and following email listservs. In another  discussion group, a family member reported that her sister was assigned  to at least three service coordinators from the state developmental  disabilities agency before receiving a coordinator who was willing to  research and follow up on services that aligned with her needs.

Access and Availability of Adult Services

In addition to the challenge of navigating a complex system of services,  parents, providers, and experts we interviewed described the challenge of  access and availability of adult services, which affect the ability of youth  with ASD to attain their goals for adulthood. Specific concerns we heard  include: waiting lists for services, lack of service options available, lack of  trained providers, and cost of services.

Waiting lists. Developmental disabilities councils in all three states in our  review cited waiting lists as a challenge to receiving services. Specifically,  South Carolina and New Jersey had waiting lists for at least some  developmental disabilities services, and Arizona had a waiting list for VR  services. According to an Arizona official, the state groups individuals on  the list using three “priority groups”; however, two of the three groups  have been effectively closed since 2009 because of resource  constraints. In South Carolina, state officials reported that individuals  will likely face a waiting list once they are determined eligible for  developmental disabilities services. While waiting lists in this state are  operated on a first come first serve basis, officials estimated that  individuals can wait up to 3 years to receive services. Youth with ASD  who exit the school system and then go without services for a period of  time may experience detrimental effects in the future, such as losing  progress made on skill development, according to stakeholders and our  recent work. Parents in four of five discussion groups also reported  waiting lists for housing. One parent reported that there is currently a 10-  to 12-year wait for supportive housing. Parents in our discussion groups  noted that the lack of housing options in general was particularly  concerning since parents may become unable, either through aging or  poor health, to care for their children with autism.

Lack of service options. While there are multiple adult service systems  available, parents in discussion groups, multiple providers, and our recent  work cited lack of service options available to young adults with ASD and  their families. Family members in one discussion group reported that  adult service programs sometimes combine groups with very different  needs—that is, by serving low-needs and high-needs individuals at the  same time—which could be challenging for both groups, or they combine  a wide range of ages together for services. In addition, a lack of providers  can limit service options in rural areas. For example, in South Carolina, a  hospital closure in a rural area meant that individuals had to travel further  to get health care, and in some parts of the state there is only one state  developmental disabilities provider available. Our recent work also  highlighted the need for youth with autism to receive timely access to  services and supports, including having enough service providers to meet  the demand. Further, as roundtable panelists in our recent work also  noted, girls and minority students are diagnosed with ASD at a later age  than other youth, on average, which could delay needed services while in  school. A lack of service options may be a challenge for transition-age  youth with disabilities more broadly—in 2015, the FPT highlighted as a  policy priority the need to expand service opportunities, such as  internships and other training options, for transition-age youth with  disabilities.

Lack of trained providers. According to multiple adult service providers  and parents, there are few providers trained to work with young adults  with ASD. As one health provider explained, doctors may not receive  training, in medical school or otherwise, on how to correctly interpret and  manage potentially disruptive behaviors in an adult patient with ASD  during an exam, including proper use of sedation as needed. Further, in  2015 the FPT identified supporting professional development for service  providers, including job coaches and health care providers, as a policy  priority to improve transition outcomes for youth with disabilities seeking  competitive employment. In 2016, the federal Advisory Committee on  Increasing Competitive Integrated Employment for Individuals with  Disabilities also reported that service providers needed more training to  support individuals with significant disabilities seeking competitive  employment.

Similarly, in our review, multiple advocates and providers reported that  vocational and other service providers need more training on how to work  with young adults with ASD. Providers, as well as a state VR official and  an advocacy group, also noted that VR counselors may have a  disincentive to learn how to work with individuals with ASD because these  young adults may need more assistance to attain and sustain  employment. Multiple providers also reported difficulties with retaining  staff, at times due to low rates of state payments for providers’ services,  which can contribute to lower staff salaries overall. Our recent work also  noted that youth with autism may have difficulty developing new  relationships with service providers and can be negatively affected by  high turnover rates.

Cost of services. Parents of young adults with ASD and providers also  reported that the cost of services can be a challenge as youth transition to  adult life. For example, a rural provider reported that youth may wait 6 to  18 months to receive a diagnosis, a qualifying requirement for that state’s  developmental disabilities services, and teachers in one district observed  that some families pay as much as $6,000 to have an examination for the  diagnosis. Because autism is highly individualized, young adults with ASD  frequently require an individualized program of services that can be  expensive, according to one provider. The IACC has also highlighted  research on the costs associated with certain services provided to  individuals with ASD, such as vocational services. This issue was also  identified by our roundtable participants. Panelists in our prior work  reported that low- and middle-income youth with ASD whose families  cannot afford to pay for services out-of-pocket may not always be able to  rely on public programs to help them pay for their adult services.  Parents in two of our discussion groups noted that needed adult services  can be beyond the family’s ability to pay. For example, one parent and  our prior work reported that moving from school services to adult services  can feel like falling off a cliff. Another parent reported that the primary  autism-specific provider in her area does not accept state developmental  disability funding or regular insurance, and most families cannot afford to  pay out-of-pocket. One advocate also noted that local transitional living  programs’ costs are higher than what the families she worked with could  cover. Several providers noted that state reimbursement rates did not  align with actual provider expenses. Cost of services may also contribute  to some of the challenges previously mentioned, such as lack of service  options and trained providers.

Youth Face Lack of Employment Opportunities and Related Supports, According to Districts Surveyed and Others

After young adults with ASD transition to adult life, they may encounter  challenges similar to other young adults with disabilities, such as securing  employment, housing, and transportation. We estimate that a majority of  school districts consider a lack of employment options to be a top  challenge to providing transition services across youth with ASD with    low-, moderate-, and high-intensity service needs (ranging from 73 to 88  percent, respectively). In addition, we estimate that over one-quarter of  school districts also reported that both job coaching and work  experiences were difficult to provide to individuals with ASD.

Similarly, stakeholders we interviewed reported that youth with ASD face  unique challenges to securing employment. For example, teachers at one  high school told us that there are limited opportunities to provide work  experiences for youth with ASD due to potential employers’ lack of  exposure to autism, fears around the extent of job-related supports   needed, and lack of financial incentives for employing youth with autism  or other disabilities. Some stakeholders said that employers may not  understand that individuals with ASD can be valuable employees or know  how to create an environment where they can thrive. The employers we  interviewed that have specific efforts to hire individuals with ASD  highlighted the importance of educating managers about ASD and how  best to interview, support, and utilize an employee with ASD. Similarly,  panelists in our prior work also discussed providing employers with  information about hiring and working with autistic employees, as a  support associated with successful employment of individuals with  autism.

In addition to securing work, stakeholders reported that youth with ASD  face challenges to obtaining the supports needed to sustain employment,  such as reliable transportation and job coaching. For example, one state  official noted that transportation may be a challenge to maintaining  employment for individuals with ASD, particularly in rural and suburban  areas, due to limited public transportation options. Our prior work also  noted that limited access to reliable transportation to and from  employment programs and services providers, especially in rural areas,  was a major challenge for students with disabilities. Similarly, an  estimated 69 percent of school districts identified lack of transportation as  a factor that would negatively affect the ability of youth with ASD to obtain  needed services and supports. Stakeholders also reported that eligibility  and timely access to job coaching was another challenge. Our prior work  also noted that while some programs may teach youth with ASD how to  interview for a job, youth also need to learn about navigating the social  aspect of employment and may require ongoing support in this area.

Federal Collaborative Efforts Have Missed Opportunities to Enhance Support of Transition-age Youth with Autism

The Interagency Autism Coordinating Committee Has Not Regularly Engaged Key Federal Agencies That Support Youth with Autism

The IACC, managed by HHS, has facilitated collaboration across its  member federal agencies on research related to individuals with ASD,  including transition-age youth, but it has not regularly engaged several  key federal agencies that serve transition-age youth with ASD. In  particular, the IACC has collaborated on transition-age issues for youth  with autism by inviting researchers to present their findings related to  transition-age youth during meetings and including research related to  this population in its strategic plan and portfolio analysis (for more  information on research needs related to transition-age youth, see app.  II). However, IACC has missed opportunities to collaborate with non- member federal agencies to report on and monitor services and supports  activities for individuals with ASD, which Congress has called for IACC to  include in its annual strategic plan and monitoring activities. HHS  officials reported that the IACC plans to begin including some services  and supports information in its next strategic plan, which it expects to  release in early or mid-2017. However, HHS officials told us that the  IACC has not engaged certain key federal agencies with responsibility for  serving or providing financial assistance to populations including  transition-age youth with ASD to gather their input on the content of the  plan, nor has it invited such agencies to serve on the committee. The  Autism CARES Act authorizes the Secretary of Health and Human  Services to include other federal agencies that serve individuals with ASD  as members of the IACC. While, according to HHS officials, the IACC  welcomes engagement with agencies interested in focusing attention on  issues related to autism, they said that the department would not reach  out to federal agencies for potential membership unless such agencies  expressed interest and that few agencies have done so. For example,  when we asked SSA officials if they had considered requesting  membership on the IACC, they told us that although they had not  previously considered it, as of January 2017, they were planning to do so.   On April 26, 2017, the IACC announced SSA as a new member.  Similarly, when we asked DOL officials the same question, they told us  they had not previously considered it, but that in the future they would  look for additional opportunities to work with the IACC. They further stated  that the agency will contact the IACC to determine interest in working on  employment issues.

DOL, HUD, and SSA manage programs and research that serve or  provide financial assistance to populations including transition-age youth  with disabilities, including youth with ASD, which potentially provides  those agencies with experience, expertise, and unique viewpoints that  could benefit the work of the IACC. For example, DOL provides grants to  states through the Disability Employment Initiative to improve effective  and meaningful participation of transition-age youth and adults with  disabilities in the workforce system. Additionally, in 2014 SSA completed  the Youth Transition Demonstration evaluation which sought to identify  and test the most promising service strategies to enhance work incentives  for helping youth with disabilities maximize their economic self-sufficiency  as they transition to adulthood. In past strategic plans, the IACC  specifically identified research needs related to employment, community  housing, and Social Security programs, which are areas within DOL,  HUD, and SSA’s purview. Further, during an IACC working group  conference call in November 2016, some members of an IACC working  group tasked with updating the lifespan and transitions area for the  strategic plan suggested that HHS invite representatives of federal  agencies who serve transition-age youth and adults to join the IACC to  better inform development of the strategic plan. However, thus far there  have been no representatives from DOL, HUD, or SSA on any of the  working groups tasked with updating the current IACC strategic plan.

There is precedence for these agencies collaborating in support of youth  with disabilities. DOL, HUD, SSA, and Education are part of a joint  research grant initiative called the Promoting the Readiness of Minors in  Supplemental Security Income (PROMISE) that focuses on improving the  life outcomes of youth with disabilities by supporting improved  coordination of services. One of the leading federal practices for  effective collaboration stresses the importance of ensuring that all  relevant participants are included in collaborative activities as efforts can  be limited when they do not have the right agencies fully engaged.  Unless HHS finds ways to regularly engage certain non-member federal  agencies that serve or provide financial assistance to populations  including individuals with ASD, including transition-age youth, the IACC  may miss the opportunity to leverage the knowledge of other agencies as  it works to fulfill its expanded responsibilities under the Autism CARES  Act. In particular, it may inhibit its ability to create an up-to-date strategic  plan that includes comprehensive and accurate information on research  and services that can be used to advance research and services that aim  to improve the health and well-being of individuals with ASD.

The Federal Partners in Transition Identified Priorities to Support Transition-age Youth but Lacks Plans for Implementation

As part of the Federal Partners in Transition (FPT), Education, HHS,  DOL, and SSA have collaborated to identify priorities for supporting  transition-age youth with disabilities, but they have not consistently  followed leading collaboration practices to implement these priorities. As  part of its 2020 plan, the FPT established several priorities for federal  action including: promoting work-based learning,  supporting professional development for service providers, bridging the service gap between youth and adult programs, demonstrating the value of hiring youth and young adults with  improving education and outreach to the public regarding policy and  practices governing transition programs.

Since identifying these priorities in the plan, the FPT has not developed a  comprehensive strategy for how these priorities will be carried out. To  achieve mutually agreed upon outcomes, one leading collaboration  practice calls for establishing mutually reinforcing or joint strategies,  such as through developing a comprehensive strategy for accomplishing  goals, which would include specific actions to implement plans. For  example:

The FPT’s yearly action plan describes the activities it will address  and policy priority areas it will focus on for an individual year, but the  plan does not include a long-term strategy to ensure progress is made  on each priority area through 2020. Further, while the FPT establishes  some timelines for deliverables and includes activities for some of the  goals and policy priority areas, it does not establish timelines,  milestones, or deadlines for making progress toward each of the goals  and policy priority areas. Other leading collaboration practices are to  clearly define short-term and long-term outcomes and to track and  monitor progress toward these outcomes.

The FPT has not assigned roles and responsibilities among the  member agencies or taken steps to make agencies responsible for  particular outcome goals or policy priority areas. According to DOL  officials, the FPT is a voluntary effort among member agencies to  enhance coordination and does not have authority to compel member  agencies to take action. However, another leading collaboration  practice is to clarify and agree on the roles and responsibilities of  each agency involved in a collaborative effort. Other agencies  involved in collaborative efforts have addressed this in various ways,  such as by implementing mutually reinforcing or joint policies—or a  memorandum of understanding—that clarify roles and  responsibilities.

Representatives of the FPT and member agencies stated that resource  constraints make it difficult to effectively collaborate and coordinate  across the federal agencies. However, we previously reported that,  according to the Office of Management and Budget (OMB), agencies  generally do not receive specific funding for interagency activities. We  have also reported on strategies to leverage resources for interagency  efforts, such as developing an inventory of relevant resources, which can  result in better leveraging of resources. Although FPT has taken some  steps toward collaboration, without a long-term implementation plan that  includes milestones and specific agency roles and assignments, it is less  likely that the FPT will implement and accomplish the five compatible  outcome goals and 12 policy priorities for future strategic focus by the  2020 Plan’s stated timeline.

The Extent of Collaboration under Recent Autism CARES Act Requirements Has Been Limited

In addition to IACC, the Autism CARES Act required HHS to lead two  collaborative efforts in support of transition-age youth with ASD, but  federal agencies’ efforts to address these requirements are currently  limited.

HHS is coordinating with other federal agencies to prepare a report on  transition-age youth with ASD, but HHS officials told us that they did not  meet the statutory deadline of August 2016 and will not be able to include  all of the report elements required by the Autism CARES Act in the report  due to resource constraints and the timing of the appointment of the  Autism Coordinator. The Act requires HHS to coordinate with certain  federal agencies to develop a report containing, among other things,  proposals for best practices guidelines to ensure coordination among  relevant service providers and comprehensive approaches to transitioning  from existing school-based services to those services available during  adulthood. According to the Autism Coordinator and other HHS officials,  HHS has established a steering committee composed of representatives  of various federal departments, including Education, Department of  Transportation (DOT), DOL, the Department of Justice (DOJ), and HUD,  as required by the Act, and has requested information from other federal  departments, including DOD, for inclusion in the report. HHS officials  have reported that HHS currently plans to finalize and submit the report to  Congress by April 2017. According to the Autism Coordinator and other  HHS officials, due to resource constraints, the report will be limited to  describing current activities at HHS and other federal departments with  respect to transition-age youth with ASD, gaps in federal programs, and  research needs and recommendations on ASD and transition issues.

As we previously reported, in April 2016 the Secretary of HHS designated  an official as the Autism Coordinator in response to a requirement  contained in the Autism CARES Act to oversee and implement federal  ASD activities nationwide and ensure that federal ASD activities are not  unnecessarily duplicative. Since that time, the Coordinator has taken  some steps to fulfill the responsibilities required by the Act, including  leading the agency’s efforts to prepare the report on transition-age youth,  according to HHS officials. In addition, according to the Autism  Coordinator and other HHS officials, the official has received information  from and reviewed ASD activities across HHS, Education, DOL, DOJ,  DOT, DOD, HUD, and SSA. However, the Autism Coordinator and other  HHS officials told us that the Coordinator would have limited capacity  going forward to oversee ASD work across agencies and departments as  required by the Act due to limited resources. Because the position was  recently filled, it is too early to assess the Coordinator’s efforts toward  meeting the requirements. It is therefore unclear whether HHS will meet  the requirements to oversee and implement ASD activities or enhance  coordination of ASD activities across federal agencies.

For many youth with ASD, the transition to adulthood begins with an IEP  that specifies the transition services needed to reach their measurable  postsecondary goals and must be in effect no later than age 16, as  required by IDEA. However, as our work and other research has shown,  starting transition planning at 16 may be too late for many youth. Recent  federal efforts have highlighted the need for transition planning to begin  earlier than 16 for ASD youth. Our school district survey and stakeholders  suggest that earlier transition planning can have multiple benefits,  including providing the necessary education, work, and community  experiences needed to successfully transition to adult life. Currently,  many students are not getting the opportunity to take advantage of these  benefits, potentially further exacerbating gaps in college and work  readiness. Further, although this report focuses on transition-age youth  with ASD, stakeholders we interviewed indicated that earlier transition  planning would likely be beneficial for other students with disabilities.  Unless Education examines the outcomes for students who begin  transition services at age 16 and the merits and implications of requiring  earlier transition planning for all students with disabilities, policymakers  may not have critical information when considering changes to IDEA.

Multiple federal collaborative entities, including the IACC and FPT, have  identified gaps in research or services for transitioning youth and young  adults with ASD. While the IACC has focused on coordinating research  on individuals with ASD, federal law has recently called for the IACC to  also report on and monitor services for adults, including transition-age  youth. Given the increased scope of IACC’s responsibilities and per  leading federal interagency collaboration practices, the IACC needs to  regularly engage key federal agencies—such as DOL and HUD—that  provide services or financial assistance to adults with ASD. Without such  efforts, the IACC strategic plan may not include important information that  these agencies have such as on services and supports, as well as  potentially miss opportunities to identify critical gaps in these areas.  Likewise, the FPT has helped to address the challenges facing transition- age youth with disabilities, including those with ASD, by identifying priority  areas for federal action in its 2020 plan. While a positive initial step,  without implementing milestones or assignments to move these priorities  forward in line with leading federal interagency collaboration practices, it  is less likely that these priorities will be achieved.

To determine whether IDEA’s current transition age requirement allows  youth with disabilities, including those with ASD, the time needed to plan  and prepare for the transition to adult life, the Secretary of Education  should examine outcomes for students when transition services begin at  age 16 and the merits and implications of amending IDEA to lower the  age at which school districts are to begin providing transition services to  students with disabilities, such as 14.

To improve collaboration and leverage the knowledge of key federal  agencies serving youth with ASD, the Secretary of HHS should regularly  engage key non-member federal agencies that serve or provide supports  to young adults with autism in IACC activities. This could include, for  example, directly engaging and soliciting input from federal agencies on  the IACC strategic plan, or inviting other federal agencies that serve or  provide supports to young adults with autism to become IACC members.

To implement the goals and policy priorities of the 2020 Federal Youth  Transition Plan, the Federal Partners in Transition (FPT) workgroup—the  Secretaries of HHS, Education, DOL, and the Commissioner of SSA— should develop a long-term implementation plan that includes milestones  and specific agency roles and assignments.

We provided a draft of this report to the Departments of Education, Health  and Human Services, Housing and Urban Development, Labor, and the  Social Security Administration for review and comment. Education’s  written comments are reproduced in appendix III. DOL’s written  comments are reproduced in appendix IV. SSA’s written comments are  reproduced in appendix V. HUD did not provide formal comments on our  report. HHS did not provide formal comments in time to be included in the  final report, but indicated that it agreed with both recommendations  directed to HHS. Education and HHS provided technical comments,  which we incorporated in the report, as appropriate.

Regarding the two recommendations we made to Education, in its written  comments, Education neither agreed nor disagreed with the first  recommendation that it examine outcomes for transition services for  students with disabilities that begin at age 16 and to examine the merits  and implications of lowering the transition age. Rather, it noted that its  Institute of Education Sciences has funded 29 research grants related to  transition planning since 2006, representing an investment of about $53  million to improve outcomes for students in transition. Education also  stated that transition outcome data it currently collects are not  disaggregated by the age at which children received transition services.  We updated the report to provide additional detail on the research funded  by Education. Education agreed with the second recommendation  regarding the need for a long term implementation plan with milestones,  roles, and responsibilities for the FPT. Finally, though our  recommendation regarding the IACC was not directed to Education, it  stated that, as an active member agency, it would be pleased to engage  with additional federal agencies identified by HHS.

In its written comments, DOL stated that it agreed with our  recommendation that the FPT should include a more comprehensive  strategy describing precisely how its priorities will be carried out. DOL  noted the FPT in 2017 has identified its annual policy priorities and will  continue to develop plans, identify milestones, and assign responsibility  for joint activities and deliverables. In addition, DOL stated that it agreed  that interagency collaboration will help the IACC fulfill its role in improving  the well-being of individuals with ASD.

SSA, in its written comments, stated that, as a member of the FPT, it  agreed to work toward accomplishing the goals laid out in the 2020  Federal Youth Transition Plan, but that the voluntary, ad hoc nature of the  FPT precludes definitive implementation plans. However, we maintain  being a voluntary initiative does not preclude the FPT from establishing  long-term milestones and clarifying roles and responsibilities. As we  stated in our report, we believe that without a long-term implementation  plan that includes milestones and specific agency roles and assignments,  it is less likely that the priorities outlined in the Federal Youth Transition  Plan will be achieved. SSA also stated that HHS has extended an  invitation for SSA to participate in an IACC meeting, and noted this will  facilitate collaboration across federal agencies to improve the well-being  of individuals with ASD.

We are sending copies of this report to the appropriate congressional  committees, the Secretary of the Department of Education, the Secretary  of the Department of Health and Human Services, the Secretary of the  Department of Housing and Urban Development, the Secretary of the  Department of Labor, and the Commissioner of the Social Security  Administration, and other interested parties. In addition, the report is  available at no charge on the GAO website at http://www.gao.gov.

If you or your staff have any questions about this report, please contact  me at (617) 788-0580 or nowickij@gao.gov. Contact points for our Offices  of Congressional Relations and Public Affairs may be found on the last  page of this report. GAO staff who made key contributions to this report  are listed in appendix viii.

Appendix I: Objectives, Scope, and Methodology

In this report, we examined three objectives: (1) the types of services and  supports provided at the local level to assist youth with Autism Spectrum  Disorder (ASD) in transitioning to adult life, (2) the key challenges for  youth with ASD in successfully transitioning to adult life, and (3) the  extent to which key federal agencies have collaborated to assist youth  with ASD in successfully transitioning to adult life. To address these  objectives, we used a variety of methods, including a web-based survey  of school districts; interviews with representatives of state agencies and  local service providers in selected states; discussion groups with family  members of and youth with ASD; reviews of federal laws and regulations;  and interviews with representatives of federal agencies, employers, and  national disability advocacy organizations.

We conducted this performance audit from November 2015 through April  2017 in accordance with generally accepted government auditing  standards. Those standards require that we plan and perform the audit to  obtain sufficient, appropriate evidence to provide a reasonable basis for  our findings and conclusions based on our audit objectives. We believe  that the evidence obtained provides a reasonable basis for our findings  and conclusions based on our audit objectives.

To examine the types of services and supports provided at the local level  to assist youth with ASD in transitioning to adult life and the key  challenges for youth with ASD in successfully transitioning to adult life, we  designed and administered a generalizable, stratified random sample of  U.S. local educational agencies (LEA), which we refer to as school  districts throughout the report, serving high school-aged students. The  survey included questions about services and supports school districts  provided to students aged 16 to 21 with ASD in special education during  the 2015-16 school year to assist in their transition to adult life. We also  asked questions about services provided, the types of challenges in  providing services, and the level of difficulty in providing services with  regard to students with low-, moderate-, and high-intensity service  needs. Further, we asked about the age at which transition services and  supports are included in the students’ individualized education programs  (IEP) and the age it would be most beneficial to begin including these  services in their IEPs. We also asked about perspectives on the factors  that may negatively affect students once they exit school in obtaining  services to assist with transitioning to adult life. We directed the survey to  school districts’ special education directors.

We defined our target population to be all currently operating LEAs  offering at least one high school level grade (9, 10 ,11, or 12) operating  within the 50 U.S. states and the District of Columbia that are not under  the jurisdiction of the Department of Defense (DOD) or Bureau of Indian  Education (BIE). We used the LEA Universe database from the  Department of Education’s (Education) Common Core of Data (CCD) for  the 2013-14 school year to build the sampling frame of 12,955 LEAs. We  selected a stratified random sample of 606 LEAs. We stratified the  sampling frame into 13 mutually exclusive strata based on LEA size,  urban classification, and poverty classification. We further stratified the  LEAs classified as being in a city by charter status. We selected the  largest 100 LEAs with certainty and determined the minimum sample size  needed to achieve precision levels of plus or minus 10 percentage points  or fewer, at the 95 percent confidence level, for six sub-population  estimates based on three urban classifications (city, suburban, and  town/rural) and three classifications of poverty (high-, medium-, and low- poverty districts). We then increased the sample size within each stratum  for an expected response rate of 70 percent.

We defined the three urban classifications based on the National Center  for Education Statistics (NCES) urban-centric locale code, ULOCAL. To  build a general measure of the poverty level for each LEA, we used the  proportion of students eligible for free or reduced price lunch (FRPL) and  classified these into the following three groups:

High-poverty: More than 75 percent of students in LEA were eligible

Mid-poverty: Between 25.1 and 75.0 percent of students in LEA were  eligible for FRPL; and

Low-poverty: 25 percent or fewer students in LEA were eligible for  FRPL.

We identified that 18 of the 606 sampled LEAs were either closed or did  not serve high school-aged students. We received valid responses from  414 (70 percent) of the remaining 588 eligible sampled LEAs. The  weighted response rate, which accounts for the differential sampling  fractions within strata, is 71 percent. The survey was in the field from May  to August 2016. To obtain the maximum number of responses to our  survey, we sent reminder emails to nonrespondents and contacted  nonrespondents over the telephone.

We conducted an analysis of our survey results to identify potential  sources of nonresponse bias using two methods. First, we examined the  response propensity of the sampled LEAs by several demographic  characteristics. These characteristics included poverty, urbanicity and  race. Our second methodology consisted of comparing weighted  estimates from respondents and nonrespondents to known population  values. The results of this nonresponse bias analysis showed no  significant differences in response propensities or between known  population values and estimates for nearly all of the characteristics we  examined. Based on these results and the 71 percent weighted response  rate, we determined that weighted estimates generated from these survey  results are generalizable to the population of eligible LEAs and are  sufficiently reliable for the purposes of this report.

We took steps to minimize non-sampling errors, including pretesting draft  instruments and using a web-based administration system. During survey  development, we met with officials from eight school districts to explore  the feasibility of responding to the survey questions. We then pretested  the draft instrument from March to April 2016 with officials in 11 school  districts in a range of city, suburban, and rural districts. In the pretests, we  asked about the clarity of the questions and the flow and layout of the  survey. Based on feedback from the pretests, we made revisions to the  survey instrument. To further minimize non-sampling errors, we used a  web-based survey, which allowed respondents to enter their responses  directly into an electronic instrument. Using this method automatically  created a record for each respondent in a data file and eliminated the  errors associated with a manual data entry process.

Because we followed a probability procedure based on random  selections, our sample is only one of a large number of samples that we  might have drawn. Because each sample could have provided different  estimates, we express our confidence in the precision of our particular  sample’s results as a 95 percent confidence interval (e.g., plus or minus 7  percentage points). This is the interval that would contain the actual  population value for 95 percent of the samples we could have drawn. As  a result, we are 95 percent confident that each of the confidence intervals  in this report will include the true values in the study population. All  percentage estimates presented in this report from this survey have a  margin of error of plus or minus 11.8 percentage points or fewer, unless  otherwise noted.

To analyze differences we identified in the percentages of LEAs providing  services between size, socioeconomic, and urban factors, we compared  weighted survey estimates generated for different levels of these  subgroups and conducted multivariate logistic regression analyses to  confirm statistical significance while controlling for other factors. We  estimated models independently for each of the 17 services in the survey  and controlled for poverty status, urbanicity, LEA size, charter school  status, racial composition, and the interaction between school LEA size  and urbanicity. To account for the stratified random sample design and  the unequal probabilities of selection, we used SAS PROC  SURVEYLOGISTIC and included the final sampling weights and strata  boundaries. For each model, we produced parameter estimates and  standard errors for each level of the factors we included in the model and  used these results to confirm the significance of the differences between  weighted survey estimates.

Interviews with State Officials and Local Service Providers

To examine the types of services and supports provided at the local level  to assist youth with ASD in transitioning to adult life and the key  challenges for youth with ASD in successfully transitioning to adult life, we  conducted interviews with stakeholders in selected states and local areas.  We selected three states—Arizona, New Jersey, and South Carolina—to  conduct interviews with local and state stakeholders. We selected these  states because they include a variety of local areas with adult providers  specifically involved with initiatives to serve individuals with autism and  those that do not, as well as a mix of rural, suburban, and urban localities,  and geographic dispersion.

In two states, Arizona and New Jersey, we conducted site visits and  phone interviews with local and state entities. As part of these local  interviews, in each of these states we conducted interviews with officials  in two school districts and staff from at least one postsecondary education  institution. We also met with public high school special education  teachers and multiple adult service providers in each state. In each state,  we focused our interviews on two local areas representing diversity in  poverty status and urbanicity. In Arizona, our interviews focused on  Phoenix and the rural areas around Flagstaff. In New Jersey, our  interviews focused on the Princeton and Newark areas.

At the state level, we conducted interviews by phone with representatives  of state special education, development disabilities, vocational  rehabilitation, as well as behavioral health services agencies. We also  interviewed representatives of university centers of excellence, parent  training and information centers, the state developmental disabilities  council, and state disability advocacy organizations.

To gather additional information on service provision after high school, we  conducted phone interviews in a third state, South Carolina, with two  adult service providers and postsecondary institutions. We also  conducted interviews with officials from the state vocational rehabilitation  and disabilities agencies, as well as other state level disability  organizations.

Information we gathered from these interviews represents only the  conditions present in the states and local areas at the time of our  interviews. These interviews focused on in-depth analysis of only a few  selected states and local areas and therefore cannot be generalized  nationwide. In addition, while we interviewed one health care provider in  Arizona, we did not interview health care providers in all three states;  thus, our findings related to medical services provided to transition-age  youth with ASD are limited. However, we believe that these findings  illustrate in-depth examples of services provided and perspectives on the  challenges facing youth with ASD in transitioning to adult life.

Discussion Groups with Families and Youth with ASD

To describe services and challenges that youth with ASD face in  transitioning to adult life, we held five discussion groups with family  members of and youth with ASD in two states, Arizona and New Jersey.  To organize these discussion groups, we identified organizations in the  states that provide outreach services to youth with ASD and other  disabilities to help us reach out to potential participants. We asked these  organizations to distribute notices about the discussion groups to their  members. We invited family members of and youth who had exited high  school within the last 5 years. We selected this age range to ensure we  gathered first-hand experiences of those who were or had recently  transitioned to adult life. The number of family members and youth  participating in each discussion group ranged from 7 to 15. The youth  with ASD in attendance included high-, medium-, and low-need  individuals.

We held all of the discussion groups in the evening to accommodate the  schedules of families. We conducted discussion groups in New Jersey  first, with two each in Newark and Princeton. However, after these initial  discussion groups, we determined that one discussion group per local  area was sufficient for our purposes. As a result, in Arizona we held one  discussion group in the Phoenix area. We also scheduled a discussion  group in the Flagstaff area to gather perspectives of individuals from the  rural northern area of the state, but no individuals responded that they  would attend. We tried other methods to reach families and youth with  ASD in the rural areas of Arizona, but we did not receive responses from  individuals who met our criteria for participating (i.e., age and diagnosis of  ASD).

Each discussion group was led by a trained facilitator using an interview  protocol designed for family members and youth with ASD. Information  and views obtained from these discussion groups are not generalizable to  other families, family members, or youth with ASD.

Review of Federal Laws and Regulations, and Interviews with Federal Agency Officials

To examine the extent to which key federal agencies have collaborated in  their efforts to assist youth with autism in successfully transitioning to  adult life, we reviewed relevant federal laws, including the Autism  Collaboration, Accountability, Research, Education, and Support Act of  2014 (Autism CARES Act); the Individuals with Disabilities Education Act;  and the Rehabilitation Act of 1973, as amended by the Workforce  Innovation and Opportunities Act in 2014; regulations; policy and  guidance. We also interviewed officials from the Departments of  Education (Education), Health and Human Services (HHS), Housing and  Urban Development (HUD), and Labor (DOL); the Social Security  Administration (SSA); the Interagency Autism Coordinating Committee  (IACC); and the Federal Partners in Transition interagency workgroup,  which is composed of Education, HHS, DOL and SSA. We evaluated their  collaborative efforts against leading federal practices for interagency  collaboration, as appropriate. Four of the federal agencies included in  our review—Education, HHS, DOL, and SSA—are the key agencies we  identified in our 2012 report that administer key programs serving  transition-age youth with disabilities in their transition out of high school.

In addition, we also included HUD in our review based on federal agency  feedback to that report and to consider any collaboration related to  housing programs.

Interviews with Employers and National Organizations

To inform all of our research objectives, we interviewed representatives of  three businesses that have initiatives to hire individuals with ASD or with  disabilities in general. We also interviewed representatives from a broad  range of national disability advocacy organizations including The Arc, the  Autism Self Advocacy Network, Autism Speaks, Autism Science  Foundation, Easter Seals, and the National Association of Councils on  Developmental Disabilities.

Appendix II: Federal Agency Collaboration Has Highlighted Priority Research Needs

The Interagency Autism Coordinating Committee (IACC) and the  Interagency Committee on Disability Research (ICDR) have identified  priority areas in which more research is needed to help youth with Autism  Spectrum Disorder (ASD), or youth with disabilities more broadly,  transition to adult life.

IACC: The IACC identified the need for additional research in areas  related to transition-age youth and adults with ASD in multiple  strategic plans, including its most recent strategic plan from 2013. In  its 2013 plan, the IACC identified several areas related to transition- age youth and young adults that needed additional research, including  understanding how ASD unfolds across the lifespan, development of  treatments and interventions for individuals, developing specialized  training for providers, and evaluating the effectiveness of service  approaches. The IACC expressed urgency for research on adult  issues related to ASD, noting the lack of knowledge on effective  approaches to service delivery. According to the 2013 IACC Portfolio  Analysis of Federal and private autism research funding, the IACC  Strategic Plan Question 6 topic area, which focuses on research  related to quality of life for adults and transition-age adults with  autism, including participation in the community and supports  necessary for access to individualized services and supports,  received roughly 1 percent of overall autism research funding,  relatively little research funding compared to other Question areas  that year.

ICDR: The ICDR is tasked with promoting coordination and  cooperation among federal departments and agencies conducting  disability, independent living, and rehabilitation research programs. In  2014, the Workforce Innovation and Opportunity Act (WIOA) included  a requirement for the ICDR to develop a comprehensive government- wide strategic plan for disability, independent living, and rehabilitation  research. The ICDR draft strategic plan contains four overall cross- cutting themes, one of which is transition, and the plan points to the  need for methods to more efficiently advance research on transitions  to education, employment, and community living. Additionally, one of  the ICDR workgroups that assisted in creating the draft strategic plan  highlighted additional research needs in the youth transition area,  such as a focus on outcomes necessary to identify and share effective  practices; and future research on the value of work experience and  early VR involvement.

Appendix III: Comments from the Department of Education

Appendix IV: Comments from the Department of Labor

Appendix V: Comments from the Social Security Administration

Appendix VI: GAO Contact and Staff Acknowledgments

In addition to the contact named above, Scott Spicer (Assistant Director),  Cady Panetta (Analyst-in-Charge), James Ashley, James Bennett, Holly  Dye, Maria Gaona, Farrah Graham, Aaron Karty, Jamila Kennedy, Sheila  McCoy, Walter Vance, Najeema Washington, Adam Wendel, and Khristi  Wilkins made key contributions to this report.

Youth with Autism: Roundtable Views of Services Needed During the  Transition into Adulthood. GAO-17-109. Washington D.C.: October 18,  2016.

Federal Autism Activities: Agencies are Encouraging Early Identification  and Providing Services, and Recent Actions Could Improve Coordination.  GAO-16-446. Washington D.C.: May 20, 2016.

Federal Autism Research: Updated Information on Funding from Fiscal  Years 2008 through 2012. GAO-15-583R. Washington, D.C.: June 30,  2015.

Federal Autism Activities: Funding and Coordination Efforts.  GAO-14-613T. Washington, D.C.: May 20, 2014.

Federal Autism Activities: Better Data and More Coordination Needed to  Help Avoid the Potential for Unnecessary Duplication. GAO-14-16.  Washington, D.C.: November 20, 2013.

Combating Autism Act: HHS Agencies Responded with New and  Continuing Activities, Including Oversight. GAO-13-232. Washington,  D.C.: February 27, 2013.

Students with Disabilities: Better Federal Coordination Could Lessen  Challenges in the Transition from High School. GAO-12-594. Washington  D.C.: July 12, 2012.

Federal Autism Activities: Funding for Research Has Increased, but  Agencies Need to Resolve Surveillance Challenges. GAO-06-700.  Washington, D.C.: July 19, 2006.

Special Education: Children with Autism. GAO-05-220. Washington, D.C.:  January 14, 2005.

Question: What did GAO's survey of special education directors reveal about ASD services in schools?

Answer: According to GAO's nationwide survey of school district special education directors, GAO estimates that about 85 percent of districts in school year 2015-16, provided youth with Autism Spectrum Disorder (ASD) services such as instruction on life, social, and behavioral skills, as they transition from high school to adulthood.

Question: What is ASD?

Answer: ASD is a group of complex developmental disorders characterized by difficulties with social interactions, communication, and repetitive behaviors.

Question: Why did districts provide such services?

Answer: Districts provided these services as part of the planning for the transition to adulthood required by the Individuals with Disabilities Education Act (IDEA).

Question: What did GAO's survey reveal about employment-related supports for ASD youth?

Answer: Fewer, though still a majority of, districts reported providing certain types of employment-related supports. For example, GAO estimates that 69 percent provided work experiences and 63 percent provided job coaching.

Question: How did ASD services vary between districts?

Answer: While the majority of districts reported providing transition services to students with ASD, the services provided varied by factors such as the size and poverty level of the district, according to GAO's analysis of survey responses.

Characteristics, Needs, and Outcomes of Transitioning Youth with Autism Spectrum Disorder

School-Based Special Education under IDEA

Most School Districts Reported Providing Life and Social Skills Services; Other Services Varied Based on Factors Such as Size and Poverty Level

School Districts Reported Providing Life and Social Skills Services; Fewer Provided Services to Prepare for Employment, Housing, and Transportation

District-Provided Transition Services Varied by District Size and Poverty Level

Question: What challenges do youth with ASD face when transitioning from high school to adulthood?

Answer: Youth with ASD face key challenges transitioning from high school to adulthood, such as untimely transition planning by school districts, complex adult service systems, and lack of job opportunities, according to stakeholders.

Question: How are districts required to support youth during this transition period?

Answer: IDEA requires districts to begin providing transition services when students with disabilities reach age 16, with the option to start earlier.

Question: Why might providing transition services from a younger age be more beneficial?

Answer: However, according to GAO's prior work and stakeholders GAO interviewed, providing discretion in this area may not serve some students well. School officials, advocates, and others report that earlier transition planning—with age 14 commonly cited—can have multiple benefits such as allowing more time to obtain important work and academic experiences; however, the Department of Education (Education) is not funding research on the appropriate age to begin transition planning.

Question: What hinders policymakers in considering changes to IDEA?

Answer: Unless Education, which administers IDEA, examines the merits of earlier transition planning, policymakers may not have critical information when considering changes to IDEA.

Question: How have some districts already implemented this change?

Answer: Currently, about 32 percent of districts begin transition planning when students are older than age 14, according to GAO's analysis of survey responses.

Untimely Transition Planning, Complex Adult Systems, and Few Employment Opportunities Are Key Challenges to Transitioning to Adult Life, According to Stakeholders Transition Planning Sometimes Occurs Too Late to Meet Students’ Needs, According to School Districts, Service Providers, and Others

Youth Face Lack of Employment Opportunities and Related Supports, According to Districts Surveyed and Others

Question: What has the IACC done to support research for transition-age youth with ASD?

Answer: While the Department of Health and Human Services' (HHS) Interagency Autism Coordinating Committee (IACC) has facilitated collaboration across its member agencies, including Education, to support research for transition-age youth with ASD, it has missed opportunities to collaborate with relevant nonmember agencies.

Question: What does the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 call for?

Answer: Specifically, the Autism Collaboration, Accountability, Research, Education, and Support Act of 2014 calls for the IACC to include in its strategic plan, as practicable, services for individuals with ASD.

Question: How did the HHS fail to meet this requirement?

Answer: However, HHS has not regularly engaged certain federal agencies that provide services or financial assistance to transition-age youth with ASD, but are not IACC members, such as the Departments of Labor and Housing and Urban Development. These agencies are not part of working groups tasked with updating the current strategic plan nor has HHS invited them to join the IACC.

Question: What might this failure to collaborate result in?

Answer: As a result, IACC may continue to miss opportunities to leverage the knowledge of other agencies—a leading practice for effective federal interagency collaboration—as it works to fulfill its expanded responsibilities under the Act and improve the well-being of individuals with ASD.

Interagency Autism Coordinating Committee

Federal Collaborative Efforts Have Missed Opportunities to Enhance Support of Transition-age Youth with Autism

The Interagency Autism Coordinating Committee Has Not Regularly Engaged Key Federal Agencies That Support Youth with Autism

Question: What does research suggest about the success of ASD youth in transitioning to adult life?

Answer: Research suggests that youth with ASD are less likely than youth with other disabilities to be successful in transitioning to work and postsecondary education and therefore, they may face a lifetime of reliance on public assistance.

Question: What was GAO asked to review?

Answer: GAO was asked to examine services provided under IDEA to assist youth with ASD in transitioning to adulthood.

Question: What key points did GAO examine for this report?

Answer: For this report, GAO examined (1) services and supports provided to assist youth with ASD in transitioning to adulthood, (2) key challenges in successfully transitioning, and (3) the extent to which federal agencies have collaborated to assist in the transition.

Appendix I: Objectives, Scope, and Methodology