Is an emphasis upon prevention limiting access to services, resources, and research to support adults with autism?
April 28, 2016
As adolescents with autism struggle to transition to adulthood, only 8 percent of autism research funding is going into services and lifespan issues for adults with autism.
As Autism Awareness Month comes to an end, we are wrapping up our blog series on moving from Autism Awareness toward Autism Acceptance. Throughout the month we have blogged about the challenges individuals with autism face to true inclusion, despite nearly universal awareness of the disorder.
In our previous blogs we took a critical look at the difficulty families face in procuring a diagnosis for their children at an age young enough to begin early intervention (when it will be the most effective) as well as the tremendous barriers to accessing services families continue to face, even after an ASD diagnosis has been obtained.
In our final installment we will be discussing what perhaps is one of the most critical areas in need of attention when it comes to Autism Awareness: what happens to youth with ASD as they move from a system of entitlements to eligibility, and transition from adolescence to adulthood.
For many, the transition to adulthood is a struggle. According to the National Indicators Report on Autism & Adolescent Transitions, a seminal study released last year by the Drexel Institute, more than a third of those with autism in their early twenties are neither working, living independently or continuing school, leading to deepening social and mental health issues. Notably, the study found that one in four adolescents reported being “socially isolated, meaning they never saw or talked with friends and were never invited to social activities within the past year.”
It is more than a truism that children with autism become adults. As of now, 50,000 young adults with autism leave high school each year. With one in 68 children now being diagnosed with autism, more and more adults with autism will be leaving school and requiring a level of services and supports that currently does not exist.
Despite the enormous struggle young adults with autism face in transitioning into adulthood, a new report found that only 7 percent of autism research funding is going to researching services for individuals with autism and a shocking 1 percent to researching the needs of adults with autism.
This funding disparity speaks volumes about our nation’s priorities, suggesting that our interest in preventing autism far exceeds our interest in improving the quality of life for people living with autism. This disparity is represented in other ways, and helps explain why so many young adults with autism are struggling to find a foothold upon leaving school. Below are some of the key issues preventing adults with autism from successfully transitioning into adulthood.
Lack of adequate transition planning
According to the most recent version of IDEA, transition planning must begin for students with disabilities by the age of 16, and in most states the age is 14. Yet according to the National Indicators Report, only 58 percent of youth with ASD had a transition plan by the federally mandated age. This means that for more than 40 percent of students with autism, a plan for how they will go about transitioning out of high school does not exist by the age of 16, leaving only a limited amount of time for these students and their families to plan and acquire the necessary skills they would need for a successful transition.
Aside from being against the law, beginning transition planning this late sets students far behind and denies them valuable services they are entitled to under the law that empower them to live rich and meaningful lives into adulthood. The years between 16 and 22 are critical for students with autism and their families because they represent the final years in which they will be entitled to any services, no matter how expensive, that their education teams deem appropriate and necessary.
Indeed, many experts agree that 16 is too late to begin planning for transition in the first place, and teaching transition skills can and should begin as early as elementary school. While one aspect of preparing for transition involves supporting a student in identifying what they want to do upon leaving school–whether it be continuing their education or finding a job–and teaching them the skills they will need to accomplish their goal, teaching students the functional skills they will need to live independently is also a part of transition, and can begin much earlier. The highest level of independence possible should be the goal for every student, and the sooner students begin working on the skills they will need to live independently, the more likely they will be to achieve this goal.
The Services Cliff
One of the reasons it is so important that transition planning happens early is because of what lies beyond high school for students with autism: what has come to be known as the “services cliff.” The term refers to the dearth of services young adults with disabilities face upon turning 22, the age at which they are no longer entitled by law to services through public education and arguably one of the times when they are in the greatest need of support. Whereas before turning 22 individuals with autism are entitled by federal law to any services deemed necessary to providing them with a free and appropriate public education, upon their 22nd birthday these young people enter a system of eligibility, in which there is no federal requirement mandating they receive supportive services. While depending on their diagnoses, they may be eligible for some services, these services are likely to be far less comprehensive than services they received in school, and can be difficult to access.
The National Indicator’s Report statistics are startling. According to Anne Roux of the Drexel Institute who co-authored the report,
“Seventy percent of families report that ‘some’ or ‘great effort’ was needed to access services following high school. Over one-quarter of youth on the autism spectrum receive no services once they reach early adulthood. Among youth who do not successfully connect to a job or continued education after high school, 28% never received any services after leaving high school. Not one.”
Even when adequate transition planning does take place in high school and young people are able to access services beyond high school, the transition from adolescence to adulthood is still trying. Aside from the difficulty families face in accessing supportive services, they are largely left to fend for themselves in determining which services their children require and where to get these services. Whereas in school the IEP, created in collaboration by a team of trained service providers and educators, operates as a central document for outlining all of a student’s services and goals, outside of school there is no such coordinating document and service providers seldom act as a team. And with more than 60 percent of young adults with autism having two or more health or mental health related conditions in addition to ASD, the need for providers to be working together to best support these individuals is critical.
Limited Access to Housing and Community-based Employment
Independent living and fulfilling employment within a community are two of the most important factors in quality of life for any person; adults with autism are no exception. Housing and employment represent one of the chief barriers young adults with autism and their families face to a successful transition to adulthood.
Not only are housing options difficult to navigate, but actually finding and then funding appropriate housing can seem impossible. Space in quality residential programs and a scarcity of affordable housing in general is often extremely limited and will likely become more so as children with autism age into adulthood. Funding for housing is particularly tricky for a number of reasons, including the rising cost of housing in many cities, the lack of public funding for housing awarded to individuals with disabilities, and limited opportunities for meaningful well-paid employment that would make housing more affordable.
As we have discussed elsewhere, one of the greatest challenges families and adults with autism face is “performing the balance act of promoting independence and maintaining Medicaid eligibility.” To be eligible for Medicaid housing waivers (as well as health care in general), individuals with autism cannot have more than $2,000 of assets in their name. This means that for many, working full time and saving any kind of money would potentially disqualify them for Medicaid, and they may risk losing health insurance and an opportunity for a housing waiver. And even when people do qualify for housing waivers, the wait times to receive an actual waiver can range from 6 months to more than 10 years. In New Jersey alone 1,300 people are on a waitlist to receive their Medicaid Housing waiver. And as some families wait years for their waiver, others who do receive a waiver don’t end up using it. In Ohio, 900 people with disabilities with housing waivers aren’t using them.
While the need to maintain Medicaid eligibility can be a disincentive to finding employment, opportunities for decent, well-paid community-based work for those who do want to work can be as difficult as finding housing. For many individuals with autism, particularly those with more severe impairments, their only employment options is working in “sheltered workshops” for sub-minimum wages. And while states are beginning to pass legislation that makes paying people with disabilities sub-minimum wages illegal (notably Maryland and New Hampshire), employment opportunities are still slim.
The good news is that there is evidence that the tide is turning on this issue. Many states and organizations are developing training programs for people with disabilities and are redistributing funding to ensure that people with disabilities have a place to work in their community. Vermont is unique in this regard. In 2002 they were one of the first states to ban sheltered workshops. Individuals with disabilities living in Vermont are now more than twice as likely to find jobs in their communities than they are in other states.
Other privately funded initiatives, such as The 5,000 Initiative: Autism in the Tech Workforce are creating training programs for individuals with autism interested in working in specific industries, like technology. But such programs are few and far between and are not open to many people with autism who have more significant disabilities.
It is estimated that 500,000 individuals with autism will be exiting school and beginning their adult lives in the next decade. With such limited resources devoted to determining how to best support these young people in this transition, and with an extreme scarcity of resources, supports and services for them to access, the future is looking bleak for a half-a-million people. If we truly want to move from Autism Awareness toward Autism Acceptance, we must place equal emphasis on supporting individuals with autism at every stage of life–from infancy and adolescence all the way through adulthood. This involves ensuring that high quality transition planning is happening on time, if not earlier, that families have access to more services and supports upon their children graduating, and that states, the federal government, and the private sector work together to create increased opportunities for individuals with autism to live and work in their communities.