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For at least a generation, Americans have been rethinking young adulthood, reconsidering ideas like what markers of independence classify an individual as a self-sufficient adult. Economic shifts and changing demographics have complicated standards Americans might have once taken for granted. Does adulthood occur when a person completes school? Does it come with financial independence? Does it take place when an individual moves out of his or her parent or guardian’s house, or at the beginning of a person’s working life? For young people with disabilities, the passage into adulthood comes with a marker that is even more fraught than these existential questions: aging out of youth supports and services and into adult services, often with little to no guidance in the process.
“The fragmented social safety net for young adults after they leave high school often includes long periods of waiting and encounters with red tape and administrative burdens,” according to Tonie Sadler, postdoctoral fellow at Shirley Ryan AbilityLab. And Meghan Burke, assistant professor of special education at The University of Illinois, says because both school systems and service-delivery systems are underfunded, rural families and families whose first language is not English experience further barriers to transition planning. Transition planning is mandated by the federal government for all students with an Individualized Education Plan (IEP). The IEP team must describe measurable goals the student should meet and services and benefits the student requires once they leave high school. Typically, according to research from The IRIS Center, transition planning focuses on three primary areas mandated by The Individuals with Disabilities Education Act (IDEA): education and training, employment, and independent living. But in Sadler’s dissertation, which surveyed families in Chicago whose students had begun the transition-planning process at 14 years old, “30% of beneficiaries lose their supplemental security income benefits” after age 18, and “70% of initial applications are denied.” Fewer than 50% of people who appeal are approved, according to Sadler. When benefits are lost and appeals are denied, individuals and families don’t get needed services and supports to meet their goals.
Burke cites factors that complicate transition planning nationwide. In an ideal situation, she says, it is person-centered, starts early in a student’s career, and prioritizes the student’s current and possible future needs. But there is limited training for educators and parents, minimal involvement from students in the planning process, and low numbers of providers and teachers nationwide. “Right now, schools are the only social service that exist, and schools are required to do so much,” said Elizabeth Munsell, a postdoctoral fellow at Shirley Ryan AbilityLab who has worked as an occupational therapist in schools and has sat on IEP teams. The biggest challenge and the most important reason to start transition planning early, she says, is that there are not enough services available for students who need adult services. “There can be students who are doing great in high school, in a structured, predictable environment, but if they’re not moving into a similarly structured and predictable environment once they graduate, a lot of unexpected challenges can occur.”
To address the cliff, Burke advocates for an earlier start to the transition-planning process, from the federally-mandated 16 years old to 14, 15, or even 12 years old, so families can begin to understand the importance of decisions like signing up for wait lists for adult services, evaluating opportunities to pursue standard or inclusive higher education, or deciding on a career path. Munsell said it is important to involve youth with disabilities in every aspect of the transition-planning process because there is so much for them to learn in such a short period of time. They don’t just have to learn job skills or get into a postsecondary education program. They also have to learn daily tasks related to life management and self-care, like how to follow up on phone calls, make doctor’s appointments, and find a place to live. This life stage is difficult for anyone, she argues, so it is better when a student is part of the team managing transition planning so that that student can learn as the planning progresses.
Burke advises flexibility, even with traditional transition planning.
If you’re 12, you may not be able to accurately predict what you want to do after high school. The intended outcome may change, but it at least gives you a goalpost. The last thing you want, regardless of whether or not you have a disability, is to have a door close to you that’s not of your own volition. This is about trying to make sure all opportunities are on the table.
MEGHAN BURKE
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A 2011 survey from The National Center for Special Education Research and The Department of Education found that young adults with disabilities were less likely than peers without disabilities to enroll in and complete postsecondary education, that they earned less money at their jobs than young adults without disabilities, were less likely to marry and/or live independently, and were less likely to have their own checking accounts or credit cards. However, they were more likely to attend two-year colleges or vocational or technical programs. Moreover, when they attended these institutions, they were more likely to finish than their peers without disabilities.
Munsell believes the emphasis on living independently, education, and work, in both research and the transition-planning process, can be detrimental to measuring other meaningful outcomes that examine quality of life.
It’s time to start to characterize participation of young adults with disabilities in a more nuanced way. If they’re getting out into the community and doing something that is highly satisfying to them, cooking for their family once a week, and helping with chores around the house, that’s an awesome picture of transition from high school into adulthood. Right now, we’re being told those people have poor outcomes
ELIZABETH MUNSELL
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Sadler’s research backs up Munsell’s assertion. As it is designed, the typical workplace doesn’t acknowledge many of the feasible goals of young people with disabilities and their families, she writes.
The years spent on wait lists for different services often stall an individual’s entrance into adulthood. According to research from The Kaiser Family Foundation, 39 states have a wait list for at least one of their home and community-based services programs. Sadler said it is difficult for families to manage their wait list enrollment because not only is there a wait list to access funding for the services, but agencies that deliver services maintain additional wait lists. Nationally, 665,000 people were enrolled on wait lists for HCBS waivers in 2020, according to KFF. Seven states, Iowa; Illinois; Michigan; Oklahoma; Oregon; South Carolina; and Texas; accounted for 59% of the people on wait lists.
In addition to the long waiting times, Burke says the fragmented nature of adult services often leads to confusion for both families and professionals who may be unsure of which services can coexist in a person’s service plan, what happens to benefits like Social Security if a young adult loses his or her job, and other issues. Simply getting off a wait list does not solve the problems for individuals or their families. Sadler and Burke agree that people of color, people with low or no literacy, and working parents with limited paid time off usually have the hardest time accessing the service-delivery system and the transition planning process.
“When there isn’t going to be a smooth transition to another service, at that point, transition planning becomes crisis intervention,” Sadler says. Individuals with disabilities whom she interviewed for her thesis were left home alone with informal familial support at that point.
But it went from, "What do you want to be when you grow up?" to, "How can we make sure basic needs are going to be met?" That is a consequence of lack of investment in these people’s lives.
TONIE SADLER
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Munsell says there is often a single point of contact who takes the initiative to coordinate between various teachers and professionals who can best meet that student’s needs. This person often remains on a student’s IEP team throughout his or her time in school. More than any service besides mental health, she says, it is that person’s institutional knowledge and level of care that her students and families missed the most. “For students who need mental health services, they can see school counselors, school psychologists, and social workers,” she said. “But getting mental health services as an adult with a disability is really challenging. Research shows that people with co-occurring mental health challenges, along with another type of disability, have the poorest outcomes and the largest challenges. It can be difficult to navigate that after leaving the support of an IEP program and staff,” Munsell states.
A report conducted by the Medicaid and CHIP Payment and Access Commission analyzed the ways in which HCBS waivers were used to meet consumers’ mental health needs. It looked at the impact of 1915(c) waivers and 1915(i) state plan amendments, which provide home and community-based behavioral health services to some Medicaid populations. Though these programs served small segments of states’ beneficiaries, 25 states operated waiver and/or state plan amendment programs to meet clients’ mental health needs. According to the survey, only two mental health waivers under the 1915(c) program targeted adults, while 12 were aimed at youth up to age 21. Community transition was one of the top-ten most common services used in this category, and nine of the waivers offered case management through the waiver program itself. These amendment programs provide services like crisis intervention, counseling, supported employment, and peer-to-peer services. However, Sadler says she spoke with one principal in Illinois who estimated that about 60% of the families or individuals at her school who need services have never heard of the wait list or these and other services available to students. And not only is information about services not widely available, but individual families also often lack the time, resources, or social connections necessary to obtain services. She adds that people with subjective diagnoses and higher care needs have trouble navigating the transition process and obtaining adult services because adult agencies lack the staff to serve those people. Limits on the number of clients an adult agency can serve are another barrier to accessing services.
The system as a whole is also still dealing with the ramifications of lockdown during the worst of the COVID-19 pandemic. “I saw some families who said, ‘We don’t have a plan. All agencies’ wait lists are put on hold. Agencies aren’t taking on any new people, or they’ve shut down completely,’” Sadler says. Youth in crisis were directed to the police, and many of the systems that had helped these children with the transition process were put on hold. Munsell says the fundamental shift in the school environment brought on by COVID has made transition planning challenging, due to remote learning. But she also says virtual options have opened doors to increased participation for another segment of the student population. Students who struggle socially or have behavioral disorders that made face-to-face interaction challenging found new opportunities available to them, she said.
The loss of services after a person completes his or her education is referred to as “the cliff.” Sadler cites the SOAR program, which is operated by The Substance Abuse and Mental Health Services Administration, as one recent effort to increase access to disability benefits for youth with disability and mental illness or substance-use disorder who are at risk of homelessness. SOAR trains case workers to work better with individuals with disabilities in this risk category. According to its 2021 report on outcomes, since the program began, 65 percent of applications for Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) that used the SOAR model were approved for benefits. “We estimate that in 2021 alone, SSI/SSDI for the individuals served by SOAR brought over $564 million into the economies of participating states and localities,” the report stated.
Burke piloted another solution. When she worked at the Vanderbilt Kennedy Center, Burke helped to launch the Volunteer Advocacy Project, a 30-hour training program that teaches parents of students with disabilities how to navigate special-education services, including transitioning to adult services. The program has since been replicated nationwide in multiple states and languages. The VAP program, and a companion project, ASSIST, which empowers young adults with autism, lead to improved outcomes after students transitioned to adult services, Burke says. She says increased self-determination needs to be the norm in transition planning.
When you’re developing any kind of intervention, thinking about sustainability is something you should be thinking about first. Thinking about partnership, consumer input, input from the disability community-all of those things are really critical from the get-go.
MEGHAN BURKE
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As individuals with disabilities, their parents, and their teachers navigate transition planning in a post-COVID America, Burke says research has revealed generalized findings about ways to overcome barriers that exist to successful transition planning for young adults with disabilities. Sadler says better ways to evaluate those outcomes are needed. Munsell compared the difficulty level of applying for services to the complexity of paying taxes. All the advocates and their research reveal that moving forward in transition planning, person-centeredness is key to success.