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Saturday, July 25, 2020

Unmet Needs of Autistic Adults

In The Politics of Autism, I write:

When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
Whitney Schott, Stacy Nonnemacher & Lindsay Shea have an article at The Journal of Autism and Developmental Disorders titled "Service Use and Unmet Needs Among Adults with Autism Awaiting Home- and Community-Based Medicaid Services."  The abstract:
Autistic adults in need of long-term services and supports spend months on waiting lists before receiving such services through Medicaid. Data from a state-wide survey of adults and their caregivers on a waiting list for autism waivers suggest that the majority have unmet needs for functional skills services (63.6%), employment or vocation services (62.1%), and mental and behavioral health services (52.8%). Almost a third require case management services (28.3%). Predictors of greater service need are African American race and the number of physical and behavioral health diagnoses. Predictors of greater service receipt were employment status, housing type, and school enrollment; there was lower service receipt for African American race, Hispanic ethnicity, over age 21 years, and college completion.
 From the article:
The transition to adulthood continues to be a key time for unmet needs to arise and for service use to decline. A recent focus on transition into adulthood has placed a spotlight on issues such as service drop of after aging out of school enrollment (Department of Health and Human Services 2019). Eforts among educators, health administrators, and policymakers to ensure continued access to services including early planning for service transitions are idiosyncratic and often depend on available options in local schools and communities. A specifc challenge for connecting individuals who are waiting for HCBS to services is the lack of cohesion in the education-focused environment of school systems and the dual home- and community-based focus of Medicaid (van Schalkwyk and Volkmar 2017). Elements of a successful transition planning process would bridge these gaps to transcend and plan for service needs beyond an education, home, or community-based focus, and be able to support the individual across all three environments.
Second, racial and ethnic disparities continue to challenge systems, as vulnerable populations have substantially greater unmet needs and are less likely to receive services across the four various service categories. In particular, needs appear to be most acute in employment support services, a crucial need for individuals coming from less  advantaged backgrounds. Eforts to confront this issue could include a system of waiting list triage or priority ranking for service delivery to reach the most vulnerable populations frst. Early, substantial, and efective linkages to employment supports could also provide a fnancial tax incentive for states to meet the employment service needs of the hundreds of thousands of individuals waiting forMedicaid-funded HCBS and could bolster funding for more individuals to enroll in the Medicaid programs, thereby elivering a more robust array of home and community supports.
Third, this evidence suggests that individuals who are in group settings may have better access to services, perhaps as they can be reached more easily in groups, whether that be through community housing, through school enrollment, or through employment. These fndings suggest that community participation may play an important role in simply helping connect individuals to resources that can serve them, while isolation may mean individuals have a lower likelihood of connecting to crucial services. Working to create opportunities for appropriate community participation may further bolster support to individuals with ASD, a key policy\ implication