This is a photo of Kiley McLean standing next to the UW-Madison School of Social Work.
Kiley McLean is a social work doctoral student at UW-Madison and a Waisman Center LEND trainee. She has worked with individuals with disabilities for over 15 years and is currently a Special Olympics coach at the East Madison YMCA. Twitter: @kileymclean10

During the summer of 2017, in Washington DC, I rallied alongside the disability community to fight against the $830 billion-dollar Medicaid cut that had passed in the House and moved frantically to the Senate. I stood on the Capitol steps among hundreds of disability advocates when the Affordable Care Act repeal was given the infamous thumbs-down. The battle had certainly been won that summer, but the underlying war to cap and cut Medicaid was far from over. The current administration still remains steadfast in their goal to repeal the Affordable Care Act, including the Medicaid expansion, and to impose rigid caps on Medicaid spending.

In my state of Wisconsin, a state that has not taken the Medicaid expansion, roughly 1.43 million residents receive healthcare coverage through Medicaid including 228,100 individuals with disabilities. It is estimated that 33.4% of individuals with disabilities in Wisconsin rely on Medicaid for services and supports that allow them to independently live and work in the community. In my role as a Special Olympics Coach in East Madison, I see every day the services that Medicaid funds to allow my athletes to participate to their full capacity in the community. Medicaid provides dignity to people with disabilities in Wisconsin through assistance with meals, bathing and dressing, in-home skilled nursing, communication support, transportation, to name but a few.  

That being said, these home and community-based services are considered “optional” state services, and if confronted with a cap or cut to their federal funding, I fear Wisconsin would be pressured to reduce or eliminate them. This would force Wisconsin, and other states like it, to return to outdated modes of serving individuals with disabilities in segregated, institutionalized care. In fact, Wisconsin currently runs three state institutions for individuals with developmental disabilities in Chippewa Falls, Madison, and Union Grove. The average yearly cost for a long-term resident in one of these institutions is $320,105, compared to $42,000 for an individual living in the community through home and community-based services and supports.

Unfortunately, in Wisconsin, the waitlists to receive these home and community-based services remain in effect. Though the lists have declined over the past years, it is still estimated in Wisconsin that roughly 2,934 individuals with intellectual and developmental disabilities are on the waitlists to receive waiver services. I continue to hear from discouraged families across the state of Wisconsin stuck on these waitlists. Children waiting 3-4 years for a new wheelchair, assistive technology device, or home accessibility modification. Adults waiting years for educational or employment support. These families are frustrated and angry at the uncertainty of when a waiver slot will finally open for them. You can imagine how disheartening and demoralizing it must feel to wait and wait for a support vital to your independence.

Home and community-based services reportedly have widespread bipartisan support and undoubtedly cost less than institutionalized care. However, proposed per capita caps or cuts to Medicaid’s funding structure would only compel the waiver waitlists to grow and the institutions to remain open. It is time to dismantle institutional bias in Medicaid, to address the waitlists, and to continue to fiercely advocate to expand Medicaid to better meet the needs of people with disabilities.