In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. I presented a paper titled "Autism and Accountability" at the 2020 Annual Meeting of the American Political Science Association. The abstract:
We expect policymakers to be accountable to the public for their handling of public issues. The case of autism presents fundamental difficulties. First, the boundaries of autism have shifted over the years, and they remain contested. Second, there are multiple publics with radically different views about the character of the issue. Third, there is no single “autism policy.” Instead, the issue spans multiple issue areas where responsibility is diffused and the connections between policy outputs and outcomes are difficult to establish. The paper ends with modest recommendations for improving our knowledge base.
- Employment is a key social determinant of health and well-being for the estimated 5.4 million autistic adults in the United States—just as it is for citizens without disabilities. Evaluation and monitoring of publicly funded employment services is paramount given the dramatic increases in adults with autism who need job supports.
- Vocational Rehabilitation agencies appeared to be absorbing short-term employment needs of autistic people, but Medicaid was severely lacking—and losing ground—in serving those who need longer-term employment services.
- Across both Vocational Rehabilitation and Medicaid, we estimated that only 1.1% of working-age autistic adults who potentially need employment services are actually receiving them—leaving an estimated 1.98 million autistic individuals without the employment services that are associated with achievement of well-being.
In general, state VR [vocational rehab] agencies administer short-term vocational services using a ratio of 79% federal funding granted by the RSA to 21% state matching funds.29 VR services do not have income eligibility thresholds but do require evidence of functional limitations that restrict ability to work. In contrast, Medicaid HCBS 1915(c) waivers fund long-term supported employment services and related supports using proportions of state dollars and federal matching funds,30 which generally vary between 50% and 75%.31 Eligibility for HCBS waivers is based on both disability and income criteria set by states, which range from 83% to 300% of the federal poverty level.32 Both VR and Medicaid guidance prioritize employment in community-based settings integrated with workers without disabilities.33,34 Legal and administrative infrastructure that support these priorities include a revision to Medicaid HCBS federal regulations known as the “HCBS Settings Rule,” the Workforce Innovation and Opportunity Act (WIOA) of 2014 (formerly the Rehabilitation Opportunities to Improve Employment Autism 5 Services Act) governing VR, Department of Justice actions to enforce integration in least restrictive settings, and state definitions of integrated employment.
However, a complicated relationship exists between VR- and Medicaid-funded employment services. Federal policies, including the WIOA, require that Medicaid and VR avoid duplication of services while simultaneously facilitating coordination across these service systems.33 For example, Medicaid HCBS policy requires that individuals exhaust VR employment supports before Medicaid waiver funds can be utilized.30 Meanwhile, the WIOA emphasizes that state VR agencies formally collaborate with the state Medicaid agency and state I/DD agencies in delivery of vocational services.34 Publicly available information illuminating how collaboration is executed in terms of service delivery and payment across systems, however, is limited.35
The degree of complexity within and between VR- and Medicaid-funded employment services is reflected in the administrative burden that autistic people and their families encounter when attempting to access and navigate services through these programs. Administrative burden includes effort required to understand the services these programs fund, psychological costs of being found ineligible for services and having to reapply, and compliance costs in dealing with requirements such as documentation.36 Service seekers weigh these costs against the assumed benefits of accessing services, and this self-assessment is influenced by other stressors in the person’s life and perceptions of how respectfully they are treated within administrative processes.37 Perhaps as a result of administrative burden, in addition to a scarcity of needed employment services, parents of autistic youth and those with other developmental disabilities describe encountering a “services cliff” as youth exit the special education services they were entitled to during high school and enter the fragmented world of adult disability-related services, each with its own administrative burden.8,38
8. Roux AM, Shattuck PT, Rast JE, Rava JA, Anderson KA. National Autism Indicators Report: Transition into Young Adulthood. A.J. Drexel Autism Institute; 2015. Accessed March 27, 2023. https://policyimpactproject.org/transitioninto-young-adulthood-full-re
29. Rehabilitation Act: Vocational Rehabilitation State Grants. Congressional Research Service; 2014. Accessed March 23, 2023. https://www.everycrsreport.com/files/20141230_R43855_d5a0c2acc49edfe1fa726907c4d8cad01b94de2d.pdf
30. Butterworth J, Winsor J, Smith FA, et al. StateData: The National Report on Employment Services and Outcomes. Institute for Community Inclusion; 2015. Accessed March 27, 2023. https://scholarworks.umb.edu/ici_pubs/74/
31. Federal medical assistance percentage (FMAP) for Medicaid and multiplier.Kaiser Family Foundation. Accessed August 9, 2021. https://www.kff.org/medicaid/state-indicator/federal-matching-rate-and-multiplier/
32. State financial eligibility criteria for Medicaid HCBS waivers by target population. Kaiser Family Foundation. Accessed March 23, 2023.https://www.kff.org/other/state-indicator/state-financial-eligibility-criteriafor-medicaid-hcbs-waivers-by-target-population
33. Updates to the Section 1915(c) Waiver Instructions and Technical Guide regarding employment and employment related services. Centers for Medicare & Medicaid Services. September 16, 2011. Accessed June 22, 2022.https://www.hhs.gov/guidance/document/updates-1915c-waiver-instructionsand-technical-guide-regarding-employment-and-employment
34. The State Vocational Rehabilitation Services Program Before and After Enactment ofthe Workforce Innovation and Opportunity Act in 2014. Rehabilitation Services Administration; 2020. Accessed March 17, 2023. https://rsa.ed.gov/sites/default/files/publications/state-of-vr-program-after-wioa.pdf
35. Boeltzig H, Winsor J, Haines K. Research to Practice: Collaboration betweenState Intellectual and Developmental Disabilities Agencies and State Vocational Rehabilitation Agencies: Results of a National Survey. Institute for Community Inclusion; 2011. Accessed March 23, 2023. http://scholarworks.umb.edu/ici_researchtopractice/3
36. Moynihan D, Herd P, Harvey H. Administrative burden: learning, psychological, and compliance costs in citizen-state interactions. J Public Adm Res Theory.2015;25(1):43-69. https://doi.org/10.1093/jopart/muu009
37. Herd P, Moynihan D. Administrative burdens in health policy. J Health HumServ Adm. 2020;43(1):3-16. doi:10.37808/jhhsa.43.1.2
38. Bagenstos SR. The disability cliff. Democracy. 2015;(35):55-67.
