The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important.
In the latest edition of the National Autism Indicators Report series, researchers at Drexel University’s A.J. Drexel Autism Institute explore how autistic individuals use Medicaid and how their service use changes across the lifespan – from infants to older adults – using data from the Centers for Medicaid and Medicare Services (CMS) from 2008-2016.
“Medicaid is a critical public benefit for an increasing number of autistic people,” said Anne Roux, a research scientist and director of the Policy Impact Project at the Autism Institute. “We found the number of autistic people enrolled in Medicaid tripled between 2008 and 2016 to nearly 600,000. Almost 70% of the enrollees were children.”
Today, the U.S. House of Representatives passed H.R. 2811, The Limit, Save, Grow Act of 2023, which includes radical new work requirements for Medicaid enrollees in exchange for lifting the debt ceiling. This Medicaid benefit test will harmfully transform our country’s primary health care for people with disabilities, deepen health inequities experienced by people with disabilities, and do little to boost employment. The Arc urges Senators and the President to reject this extreme benefit test and other harmful cuts contained in the bill as they work towards a deal to lift the debt ceiling.
The bill requires Medicaid beneficiaries to meet an 80-hour per month work-reporting requirement unless they meet an exemption. This doesn’t just apply to new enrollees or people eligible under the Affordable Care Act’s Medicaid expansion provisions – it applies to everyone ages 19-55 receiving Medicaid. Millions of enrollees will be forced to go through an obstacle course and navigate complicated red tape to keep coverage, including many who rely on home and community-based service waivers and Supplemental Security Income. The Congressional Budget Office estimates that 1.5 million adults will lose federal funding for their Medicaid coverage and the bill will cut Medicaid by an estimated $109 billion over the next decade.
“Medicaid is a lifeline for people with disabilities,” shared David Goldfarb, Director of Long-Term Supports and Services Policy at The Arc of the United States. “This policy not only undermines their access to life-sustaining health care and community living, but it also undermines their inclusion in the workforce. Navigating these complex and extreme benefit tests will be particularly difficult for people with intellectual and developmental disabilities, over 45% of which have a co-occurring health condition. In addition, many of the exemptions for the rule are vague and highly subject to the stigmas and biases of those with the power to determine eligibility. Millions of people who rely on these safety net programs will fall through the cracks in a system that is already difficult to grasp – and these changes will compound that problem.”
People with disabilities would need a doctor or other medical professional to deem them “physically or mentally unfit for employment,” which is not a standardized disability determination. Many people with disabilities already face barriers to accessing health care and discrimination from providers, which, if this legislation passes, would now come with the risk of losing Medicaid coverage. There is also an exception for caregivers who give care to an “incapacitated person.” This terminology is vague, subjective, crude, and could extremely limit the definition of caregivers.
All of this chaos and administrative burden comes at the misguided hope that this new benefit test will boost employment opportunities and outcomes. In fact, most adults that utilize Medicaid are working, the majority of which are working full-time. Those who are not working or are working part-time face barriers to employment, such as having a disability or caregiving responsibilities. What’s more, Arkansas had a short-lived work requirement for Medicaid back in 2018, which failed to increase employment and caused 18,000 people to lose coverage. The reality is that having Medicaid supports people’s ability to join the workforce, not hinders it.
The proposal comes at a time when:states are expected to drop millions of beneficiaries due to the end of the Medicaid continuous coverage requirement during the COVID-19 pandemic;
over 650,000 people with disabilities desperately wait for home and community-based services, some of them for years;
and the nation is experiencing major labor shortages in health and long-term care.
Congress should be focusing on ways to expand access to services, not on cutting Medicaid.