POLICY PERSPECTIVE

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Transition to adulthood
for individuals with autism spectrum disorder:
current issues and future perspectives
Nora DB Friedman*1,2, Marji Erickson Warfield3 & Susan L Parish4

Practice points
„„ The transition to adulthood represents a particularly vulnerable time for youth with autism spectrum
disorder (ASD), as the entitlements of the children’s service system end and families encounter fragmented
systems of care.

„„ Poor outcomes for this population across multiple domains – education, vocational training and employment,
social support, housing and healthcare – suggest that current models of school-based transition planning are
not meeting the needs of youth with ASD.

„„ While there is a continuing need for supportive services, therapies and medical care throughout adulthood,
recent research has shown high rates of service disengagement.

„„ Policies are needed to monitor and enforce the seamless coordination of support across service delivery
systems.

„„ There is a limited empirical base for current practices during the transition period. An aggressive,
evidence-based and well-organized program of research, policies and service system changes will be
necessary to achieve more favorable transition outcomes for the ASD population.

SUMMARY Rising autism prevalence rates have lent urgency to efforts to improve
outcomes for individuals with autism spectrum disorder (ASD). Stakeholders have focused,
in particular, on the transition to adulthood that can occur over a range of ages, typically
between 18 and 22 years, and often corresponding to when the youth finishes secondary
school. This represents a particularly vulnerable time, as the entitlements of the children’s
service system end and young adults with ASD and their families encounter fragmented
and underfunded systems of care. Research across multiple domains – education, vocational
training and employment, social support and community involvement, housing and
healthcare – reveals poor outcomes for this population during the transition to adulthood,
suggesting that the current models of school-based transition planning are not meeting

1
Department of Psychiatry, Massachusetts General Hospital for Children, Harvard Medical School, Boston, MA, USA
2
Lurie Center for Autism, 1 Maguire Road, Lexington, MA 02421, USA
3
Starr Center on Intellectual & Developmental Disabilities, Heller School for Social Policy & Management, Brandeis University, Waltham,
MA, USA
4
Lurie Institute for Disability Policy, Heller School for Social Policy & Management, Brandeis University, Waltham, MA, USA
*Author for correspondence: Tel.: +1 781 860 1700; Fax: +1 781 860 1766; [email protected] part of

10.2217/NPY.13.13 © 2013 Future Medicine Ltd Neuropsychiatry (2013) 3(2), 181–192 ISSN 1758-2008 181
Policy Perspective Friedman, Warfield & Parish

the needs of youth with ASD. This article highlights findings from some of this literature,
examines financial aspects of the transition process, and offers our perspectives on current
practices and recommendations for future study. An organized program of research coupled
with aggressive policy and service system changes are needed to achieve more favorable
transition outcomes for the ASD population.

Garnering attention in both academic publica- received special education services under
tions and the popular media, rising autism preva- the Individual with Disabilities Education
lence rates have mobilized families, professionals, Improvement Act (IDEIA) during the 2009–2010
the federal government and other stakeholders school year [101]. IDEIA requires school districts to
into action. The CDC has estimated that one in provide children with disabilities with a free and
88 children aged 8 years have the disorder, reflect- appropriate public education, and special educa­
ing a 78% increase from 2002 to 2008 [1]. Autism tion services are developed and implemented
spectrum disorder (ASD) are hetero­geneous through a coordinated individualized educa-
and pervasive, and the growing rates will have tion program (IEP). The last reauthorization of
far-reaching public health consequences. The IDEIA also requires schools to address transition
increasing prevalence has lent urgency to efforts planning by a student’s 16th birthday through the
to improve outcomes for individuals with ASD identification of post-secondary goals and related
and focused attention on the transition to adult- transition services. As defined by the statute, tran-
hood, when the entitlements of the children’s sition services are intended to be results oriented
service system end. This represents a particular­ly and enable students with disabilities to success-
vulnerable period, as young adults leave the school fully leave secondary school and enter the adult
system and encounter fragmented, strained and worlds of post-secondary education, vocational
underfunded systems of care. From employment training or employment [102].
to housing, healthcare, income and social sup- The National Longitudinal Transition
ports, the transition process requires individuals Study-2 (NLTS2), which followed a nationally
with ASD and their families to navigate multiple representative sample of more than 11,000 youth
systems to create a customized service plan that with disabilities, has greatly enhanced our
suitably blends their preferences and the available knowledge of the transition to adulthood for
resources with their needs. this population. At the start of the study, partici-
This article will provide an overview of transi- pants were between the ages of 13 and 16 years
tion outcomes research conducted in the USA in and receiving special education under one of
several domains, including education, vocational 12 federally designated categories (e.g., autism,
training and employment, social supports and learning disability, mental retardation or hear-
community involvement, housing and health- ing impairment). NLTS2 provides some data
care. These domains were selected on the basis on the transition planning process. Approxi-
of their significance for public policy and the mately two-thirds (66%) of students with ASD
allocation of public resources. This article was had an IEP that identified a course of study to
informed by an exhaustive search of the existing meet transition goals, while 70.6% had received
research on outcomes for youth and young adults instruction on transition planning [103]. For IEP
with ASD, which was scant. We highlight find- team meetings focused on transition planning,
ings and trends from major papers and also dis- IDEIA stipulates that the student is invited to
cuss financial aspects of the transition process. attend, as well as representatives from any agen-
In the absence of studies specifically focused on cies that are likely to be involved with providing
transition-age youth, we cite relevant research transition services. Despite these requirements,
on the outcomes and experiences of children, 67.4% of youth with ASD did not attend their
adolescents and/or adults with ASD. We con- transition planning meetings or attended with
clude with our perspective on current practices minimal participation; only 2.6% led the plan-
during the transition to adulthood and provide ning [103]. Other participants, such as vocational
recommendations for future study. rehabilitation counselors, agency personnel and
advocates, actively participated in transition
Education planning for 49% of youths with ASD [103]. In
According to the US Department of Education, interviews with parents, 28.1% rated transition
378,000 students with ASD, aged 3–21 years, planning as ‘very useful’, 48.4% as ‘somewhat

182 Neuropsychiatry (2013) 3(2) future science group

 Transition to adulthood for individuals with autism spectrum disorder Policy Perspective

useful,’ and 23.5% as ‘not very’ or ‘not at all USA. The Department of Labor estimates that
useful’ [103]. These data highlight the need for in 2011 just 27% of adults between the ages of
increased student and family engagement in the 16 and 64 years with disabilities were employed
process, as well as greater collaboration between compared with 70% of adults without disabili-
schools and outside agencies as transition plans ties [107]. Low-employment rates are a constant
are developed and implemented. over the life course of individuals with disabili-
There is widespread evidence that current ties. For individuals with ASD, the vast majority
transition planning efforts are uneven and do are unemployed and those who are employed
not succeed in preparing young adults with ASD tend to work in sheltered employment or volun-
to join the adult worlds of either post-secondary tary jobs [8,108]. When they do work, they switch
education or employment [2–6]. Empirical jobs frequently and have difficulty adjusting to
research has revealed poor secondary and post- new job settings [9,10].
secondary educational outcomes for the ASD Poor outcomes in employment should not
population. One study found that youth with be construed as evidence that individuals
ASD enrolled in secondary school were, on with ASD cannot work. An extensive body of
average, 4.2 years below grade level in reading research has demonstrated that with appro-
and 4.9 years below grade level in mathematics priate supports, individuals with ASD can
[104]. Of the 4876 students with ASD who exited work in a variety of businesses and industries
special education in the 2005–2006 school year, [11] . Supported employment, in particular,
57.1% graduated with a diploma, 26.6% earned has increased employment rates and has been
a certificate of attendance, 9.1% dropped out, associated with improved quality of life and
6.7% reached maximum age and 0.5% died [105]. cognitive performance [12–14].
Compared with individuals in other disability More recent research has focused on strate-
categories who had been out of secondary school gies designed to increase employment retention
for up to 8 years, young adults with ASD had by matching the individual to a complimentary
among the lowest rates of post-secondary school job. A variety of strategies have been success-
enrollment in NLTS2. Approximately a third ful in yielding an appropriate match, including
(32.3%) of young adults with ASD had ever offering choices, using assessments to determine
enrolled in a 2‑year or community college, 17.4% task preferences, evaluating social and commu-
in a 4-year college, and 21.0% in a vocational, nication needs, and adding necessary modifi-
business or technical school [106]. Students with cations and adaptations [10,15–17]. Further­more,
ASD had a 38.8% completion rate from their comprehensive, system-level interventions
most recent post-secondary school, which did that develop customized employment oppor-
not differ significantly from the completion rate tunities have been successful in improving
for other disability types [106]. retention [18,19].
Shattuck and colleagues have found that posi-
tive employment and post-secondary educational Social supports/community involvement
outcomes are elusive for many young adults with ASD is characterized by significant impairments
ASD. In a nationally representative sample of that affect social functioning. These include
young adults with autism, more than half of the stereotypical gestures, difficulty with eye con-
subjects with ASD had not participated in either tact, limited emotional and social reciprocity,
employment or post-secondary education 2 years and an inability to correctly perceive or ‘read’
after leaving secondary school [7]. Within 6 years faces [20,21]. Furthermore, aggressive behavior is
of leaving secondary school, just over a third of common among children and adolescents with
young adults with ASD had attended any college ASD. In one study, nearly half of the sample of
and slightly more than half had been employed children and adolescents exhibited aggression
[7]. Furthermore, those individuals from lower toward noncaregivers, and well over half were
income families had poorer outcomes. These aggressive toward family caregivers [22]. Self-
data highlight the shortcomings of current injurious behavior is also highly prevalent in
transition planning practices. children, adolescents and adults with ASD, with
reported rates ranging from 25 to 50% [23–26].
Vocational training/employment In addition to these behavioral and social chal-
Persistent unemployment for people with lenges, communication deficits are a core feature
disabili­ties is an entrenched problem in the of ASD despite having unclear etiologies [20,27].

future science group www.futuremedicine.com 183

Policy Perspective Friedman, Warfield & Parish

These communication problems often corre- with autism. Targeted interventions have been
late with an inability to develop high-quality developed to enhance the social relationships of
social relationships [28,29]. Together, these ASD children and adolescents with autism, often by
characteristics and maladaptive behaviors col- enhancing their communication abilities and/or
lectively impede the formation and maintenance offering training in socially appropriate behavior
of social relationships with peers and others out- [47–49]. There remains, however, a critical need
side the family [30,31]. They also prevent indi- for evidence-based interventions to address the
viduals with ASD from fully engaging in their social inclusion of youth with autism.
communities [32,33].
A substantial body of research has found Housing
children and adolescents have significant dif- The proportion of adults with disabilities living
ficulty making and sustaining friendships, as in their families’ homes is growing, prompted
well as engaging in social activities with same- by lengthening wait lists for out-of-home place-
age peers. Many youth with ASD report hav- ments in most states [50]. This trend has implica-
ing either no friends at all, or characterize their tions for transition-age youth with disabilities,
friendships as lacking responsiveness, reciprocity including those with ASD. Young adults with
or overall quality [33–40]. The existing research disabilities have made few gains in accomplishing
related to integration, friendships and quality of a common marker of adulthood – that of moving
life paints a picture of extreme social isolation out of the family home and into an independent
and loneliness for many adolescents with autism. living situa­tion. Although research on the living
Despite early stereotypes about people with situations of youth and adults with ASD is some-
ASD seeking to avoid social relationships, what limited, several studies have found that the
research has shown adolescents with ASD majority of youth in their post-secondary school
express interest in having social relationships years continue to live at home and fewer than
and meaningful friendships [41,42]. However, 10% live independently [32,51,108].
this desire is often accompanied by limited skills Well-documented difficulties in executive
and insights needed to acquire or sustain such functioning among individuals with ASD con-
relationships. In longitudinal studies, researchers tribute to the challenges they face in gaining the
have observed that social and friendship gains skills needed to live independently or with lower
occur as children age into adolescence and as levels of supervision and support [52]. Specifically,
adolescents age into adulthood [41–44]. However, individuals with ASD have difficulty dealing with
social isolation remains profound and persists new situations and processing complex informa-
through late adolescence and into adulthood. tion as well as problem-solving through planning
While poor social function is a defining [53,54]. These skills are necessary for managing
characteristic of ASD, researchers have worked everyday occurrences. Research has identified
to understand which adolescents with ASD are interventions that improve independence in the
at elevated risk for poor social relationships [20]. home environment. These efforts have focused
Correlates of social isolation, loneliness and a on increasing self-help skills, reducing inappro-
lack of friends include limited social support priate behaviors and increasing participation in
networks, communication deficits and more activities of daily living [55,56]. Video modeling is
severe ASD symptoms [36,38,39,45,46]. In one study one technique that has been found to be effective
of adolescents living at home with family care- in teaching these skills, but implementation has,
givers, Orsmond and colleagues reported that thus far, been limited [57,58]. It is critical that these
half of their sample had no peer relationships types of training sessions take place beginning
beyond those at school or work [33]. Moreover, in the adolescent years [59]. Family involvement
these researchers found that age and level of in the training is also important, as many young
social impairment predicted social relation- adults need ongoing support and supervision [8].
ships, but environmental characteristics (e.g.,
number of services received, mother’s activities Healthcare
and school inclusion) did not. These findings, Transitioning from the pediatric to the adult
in particular, have important implications for healthcare system can be a challenge for any
the design and implementation of interventions youth and especially so for youth with special
and programs to build the social relationships healthcare needs, such as those with ASD [109].
and full community inclusion of young adults Despite efforts by the Maternal and Child Health

184 Neuropsychiatry (2013) 3(2) future science group

 Transition to adulthood for individuals with autism spectrum disorder Policy Perspective

Bureau and the American Academy of Pediatrics Financial considerations

to heighten awareness of the need for transition Children and youth with ASD require a diverse
services, existing research confirms that many array of medical, therapeutic, behavioral and
youth with disabilities do not receive any support educational services, typically at a high level
in planning for or making this transition [60–62]. of intensity [70–73]. Direct medical expendi-
Healthcare transitions can be complicated for tures are incurred as a result of an elevated
youth and young adults with ASD due to their need for hospital and emergency services, out-
increased need for specialized care for common patient, physician and clinic services, medica-
co-morbidities, such as mental and behavioral tions, behavioral therapies, complementary
health disorders, epilepsy, gastrointestinal prob- and alternative therapies, specialized equip-
lems, and respiratory, food and skin allergies ment and supplies, and home health services.
[63–65]. The prevalence of such secondary health Beyond these medical costs, many families
issues heightens this group’s need for contin­uous utilize non-medical services, including special-
healthcare through adulthood and suggests that ized childcare, respite, educational services and
a lapse in care may be especially detrimental to modifications to the family home [74]. These
their well-being. In addition, compounding needs make ASD exceptionally expensive to the
transition challenges for many youth with ASD public health, social welfare and educational
are their unusual sensory responses to some systems. For example, Liptak and colleagues
environmental stimuli, as well as their increased found that the combined healthcare costs of
anxiety associated with entering new and highly children with ASD were seven-times higher
stimulating environments [66,67]. Sensory sensi- than the healthcare costs of nondisabled chil-
tivity has been noted across all primary modali- dren [70]. In another study, total healthcare
ties (i.e., auditory, visual, tactile, olfactory and spending for children with ASD was four- to
oral) [68,69]. six-times greater than spending for nondisabled
Practice adaptations, such as schedul- children [71].
ing appointments during less busy times and Health insurance does not adequately cover
organiz­ing preappointment visits to foster com- the costs of far-ranging, intense service needs
fort and familiarity, may be necessary to help of children with ASD [110]. This gap translates
youth with ASD move smoothly into adult into high out-of-pocket spending for families,
healthcare practices [66]. A recent study con- which can lead to significant financial burden.
ducted in-depth interviews with 19 healthcare In one nationally representative study, a third of
professionals from 15 care sites across the USA families that reported any out-of-pocket spend-
and Canada that primarily serve children and ing for their children with ASD spent at least
youth with ASD and other developmental dis- 3% of their gross annual income on these health
abilities. Five strategies were already in use by expenses [75]. Furthermore, parents’ ability to
some sites to help the transition from pediatric to work is often compromised due to the dynamic
adult care. These consisted of creating a medical and extensive nature of children’s care needs.
summary to pass on to the adult provider, keep- Montes and Halterman reported that families of
ing an informal list of adult providers who would children with ASD had an average annual loss
accept referrals for ASD patients, using various of 14% of total income [76]. In another study,
care coordination strategies such as conducting family income was 28% below that of families
teleconferences between pediatricians and adult of nondisabled children [77]. High out-of-pocket
providers, setting up transition-specific appoint- expenditures, coupled with reduced employ-
ments and using checklists to help guide youth ment, increase the likelihood that having a
through the process [Kuhlthau KA et al. Transition child with an ASD creates significant financial
to adult healthcare for youth with autism spectrum problems, including bankruptcy and forfeiture
disorder: issues and promising new directions (2013), of later-life financial security [76–79].
Submitted]. Other interventions that were iden- The extent of families’ financial burdens
tified as needed included creating care binders or depends not only on their own income and
workbooks to help organize materials, providing resources, but also on the relative generosity of
education and training sessions for youth and coverage provided by insurance. Families living
families, and giving adult providers and medical in states with greater per-capita Medicaid cover­
students more formal training about transition age experience lower financial costs related to
issues and disabilities in general. the healthcare of their children with ASD [75].

future science group www.futuremedicine.com 185

Policy Perspective Friedman, Warfield & Parish

Inadequate private insurance coverage has led were higher for African–American individuals
families to advocate for state parity legislation, and those from low-income families [82].
which compels private insurers to cover ASD ser- There are several reasons for the challenges
vices at comparable levels to other healthcare. To families face as individuals with ASD transi-
date, families and advocates have been success- tion from secondary school into adult services.
fully securing various versions of ASD cover- The participation of youth with ASD in special
age mandates in 32 states [110]. There is promis- education services is usually a prerequisite for
ing evidence that families living in states that parental employment, because these youth need
have adopted these private insurance coverage supervision and support and cannot necessarily
mandates experience reduced financial burden be left alone during the day while a parent works.
related to the healthcare costs of their children Parental employment is, in turn, imperative
with ASD [80]. for family financial well-being. Upon exiting
Importantly for our purposes, the costs of secondary school, individuals with ASD enter
ASD services do not end with childhood. Ganz the adult service system, in which there are no
estimated the additional lifetime costs for each entitlements beyond the safety net provided by
individual with ASD exceed US$3,000,000, Medicaid and Supplemental Security Income.
which includes medical and non-medical ser- Both programs have strict asset and income caps,
vice expenditures [74]. Cidav and colleagues and Supplemental Security Income, in particu-
found that the costs of medical and supportive lar, has limited take-up and viability in assisting
services for children with ASD rise as children adults with ASD to become independent [111].
enter and progress through adolescence [81]. Another financial implication of the entitle-
This trend persists for nearly all types of medi- ment to educational services is the fact that
cal care, including inpatient hospitalization, schools generally pay for a range of ASD ser-
psychotropic medications, outpatient services, vices, including speech, occupational and phys­
occupational therapy, behavioral health services, ical therapies, as well as behavioral interventions.
respite and personal assistance. Only the costs Families frequently contest educational quality,
of speech therapy and diagnostic/assessment and extensive litigation has resulted from parents
services were lower for youth aged 12–17 years seeking court intervention to secure services for
than for younger children with ASD [81]. their children with ASD [83–87]. This body of
The limited body of research that has inves- case law has not always favored parents, but the
tigated the well-being of adolescents with ASD courts have clearly established that the provision
as they age into adulthood has generally found of an adequate education to children and youth
that some individuals demonstrate modest with ASD typically requires schools to pro-
gains in the range of ASD symptoms and some vide behavioral and therapeutic services [85,87].
individuals realize improvements in verbal and These services are often expensive. For example,
social skills [44]. Approximately 10–15% of applied behavior analysis, which has been rated
individuals diagnosed with ASD during child- as an evidence-based practice by the Centers for
hood ultimately become symptom-free during Medicare and Medicaid Services environmental
adulthood [44]. However, most individuals with scan and has been deemed an established treat-
autism, including those whose symptoms and ment by the National Autism Center’s National
skills improve, do not achieve normal ranges Standards Report, costs an average of $40,000
of functioning in adulthood, and their ASD annually per child [88,112,113]. Clearly, the need
symptoms persist in impairing their daily living for these frequently costly services does not end
[44]. These findings indicate a continuing need when youth with ASD exit the schools, although
for supportive services, therapies and medical schools no longer have an obligation to pay. The
care throughout adulthood. Recent research, positive relationship between increasing child
however, shows alarmingly high rates of ser- age and rising costs for health services and the
vice disengagement. Shattuck and colleagues lack of significant diminution of symptoms as
documented decreased service use – including children enter adulthood provide stark evidence
medical care, mental healthcare, case manage- that families are probably bearing significant
ment and speech therapy – for individuals with financial costs for their young adult children
ASD after leaving secondary school. In their with ASD [44,81]. Further research is needed to
study, 39.1% of subjects had not received any understand these costs and their implications,
services, and the odds of service disengagement but we speculate that the financial burden for

186 Neuropsychiatry (2013) 3(2) future science group

 Transition to adulthood for individuals with autism spectrum disorder Policy Perspective

families increases as children leave secondary tied to the Common Core State Standards are
school. under development. How students with ASD
and other disabilities will fare in this chang-
Conclusion & future perspective ing landscape remains to be seen. In particu-
Observational studies, such as NLTS2, have lar, schools and families will have to determine
helped to map pathways for young adults with how to strike a balance between academic and
ASD and identify areas of need. In order to vocational training.
improve transition outcomes for this popula- As conceptualized by IDEIA, transition ser-
tion, however, research must shift to develop- vices aim to enhance students’ preparation for
ing, implementing and evaluating empirically life beyond secondary school. Yet the outcomes
informed interventions. Commissioned by the data cited above suggest that the current models
Centers for Medicare and Medicaid Services, of school-based transition planning are not meet-
an environmental scan investigated psychoso- ing the needs of youth with ASD. In our opinion,
cial supports and services for individuals with schools must increase student and parent engage-
ASD across the lifespan, published in the lit- ment in the planning process, helping families to
erature from 1998 to 2008. The research group define their goals, identify the necessary action
evaluated the methodological rigor of more steps and access resources. Furthermore, schools
than 200 studies and identified evidence-based must work more collaboratively with vocational
interventions based on the number and quality and employment service organizations. If these
of studies support­ing their use. Only one out of efforts are undertaken early and allow suffi-
15 interventions for transitional youth and three cient time for preparation and implementation,
out of nine interventions for adults were rated we believe that the dismal outcomes in post-
as evidence-based [112]. The Agency for Health- secondary education and vocational training and
care Research and Quality conducted a recent employment could start to improve. Hagner et al.
review of behavioral, educational, vocational, investigated a transition planning intervention,
adaptive/life skills and allied health interven- which included parental training sessions and
tions for adolescents and young adults with individualized planning. The active group had
ASD. Of the 32 studies included in the analysis, significantly greater youth and parent expecta-
none were found to be of good quality, five were tions for the future, as well as higher measures of
deemed to be fair quality and the remainder were student self-determination and career decision-
categorized as poor quality [114]. Clearly, much making ability [89]. The authors suggest that this
work needs to be carried out to strengthen the model could be financed through a reallocation
empirical base of effective practices during the of existing funds.
transition period. For residential services, however, the increas-
In the education realm, we believe account- ing prevalence of ASD necessitates an infusion of
ability systems for post-secondary school out- funds for system expansion. Nearly all residential
comes and effective secondary school transition services for people with ASD and other develop­
planning are urgently needed. Further efforts mental disabilities in the US are supported by
should focus on reducing the achievement gap Medicaid, but states have cut their Medicaid
between secondary students with ASD and their spending in order to balance their budgets [90].
typically functioning peers. Through higher While the federal government added billions to
levels of academic achievement, individuals protect Medicaid during the recession, those
with ASD will have access to a greater range funds ended in Fiscal 2011, leaving states in a
of post-secondary schooling and employment weak position even as the economy improves [91].
opportunities. Innovative education strategies It is wholly unclear how states will be able to
and curriculum design will be critical in serving address the growing waiting lists for residential
a population with wide variability in cognitive services without a significant influx of new fed-
skills and learning profiles. To promote college eral finances. Given the current situation and the
and career readiness, the Common Core State years it will take to address the deficit, such an
Standards, currently adopted by 45 states, have expansion appears unlikely. The federal govern­
established content standards for English lan- ment, however, has an existing mechanism that
guage arts and mathematics for all ages from could be used to stimulate state spending to
kindergarten through grade 12. New assessments increase community-based residential supports
and more challenging performance benchmarks for people with ASD and other developmental

future science group www.futuremedicine.com 187

Policy Perspective Friedman, Warfield & Parish

disabilities. The Home and Community-Based often must pay for supports previously covered
Services (HCBS) Waiver, which permits states by school or health insurance themselves. Some
to use Medicaid funds for various support ser- individuals may be too high functioning to qual-
vices, has been the most important driver of the ify for services from developmental disability or
growth of the community (as opposed to institu- vocational agencies, yet their communication
tional) residential service system since its passage and social impairments, in particular, limit their
in 1982 [90]. We feel that enhancing the Federal ability to successfully navigate the transition on
Medical Assistance Percentages (the funds pro- their own. Resources should promote increased
vided by the federal government to each state access to services for all transitioning youth with
for Medicaid) for new HCBS residential services ASD, with a particular focus on those subgroups
would likely be effective in encouraging states to currently falling into service voids. In addition,
expand their residential service systems. we believe that policies are needed to monitor
Evidence of significant racial and income dis- and enforce the seamless integration of support
parities in diagnosis, treatment utilization, and across service delivery systems. This will require
access to educational interventions and health- greater collaboration and coordination among
care services can contribute to deleterious out- service providers, which should begin during the
comes over time for those disadvantaged individ- transition planning process in secondary school.
uals [82,92–95]. We need assertive action to redress The balance of research across these domains
this situation, designing research to more fully indicates that an aggressive, evidence-based and
understand the determinants of these inequali- well-organized program of research, policies
ties and formulating policies to monitor and and service system changes will be necessary to
reduce these disparities. One proposal would be achieve more favorable transition outcomes for
to establish financial incentives for service pro- the ASD population.
viders (e.g., academic institutions, social service
agencies and healthcare providers) that achieve Financial & competing interests disclosure
benchmarks in quality and equal access for all. SL Parish was supported by the Lurie Institute for Disability
The current fragmentation of the educational, Policy at Brandeis University. The authors have no other
vocational, employment and residential sup- relevant affiliations or financial involvement with any
port systems bears significant responsibility for organization or entity with a financial interest in or finan-
the negative outcomes achieved by youth and cial conflict with the subject matter or materials discussed
young adults with ASD. Hampered by long wait- in the manuscript apart from those disclosed.
ing lists and limited funding, adult programs No writing assistance was utilized in the production of
often cannot serve all eligible clients. Families this manuscript.

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