Yesterday I read a post on Facebook about how it is difficult not to have the choices everyone else does because of a disability. For instance, I couldn’t move to another state like most people. I rely on Medicaid which pays for my PCAs. Medicaid is run by individual states, meaning services can vary widely. Many states have waiting lists for home and community based services.
More than 820,000 people, two-thirds of whom have intellectual and developmental disabilities, are on waiting lists for HCBS waiver programs across the country. I live in Massachusetts which doesn’t have a waiting list for home and community based services. As of 2015, 35 states had waiting lists for waiver services.
Back in 2018, I was a high school senior, who was eager to go off to college. Unlike my peers, I couldn’t go out of state to college. In addition to considering the financial aid packages, healthcare was another concern. The availability of the services that I rely on could be very different.
If I went to college at The University Of New Hampshire, for example, I wouldn’t have access to my healthcare team while away at college. I’d have to find a new physical therapist, and primary care doctor. My health insurance doesn’t cover many out-of-state services. This would also mean hiring a whole new staff of PCAs. My parents would have to drive more than two hours to help me if a PCA didn’t show up. Even if The University Of New Hampshire offered me a full scholarship, it would be difficult for me to go there.
Medicaid is a federal program so some people assume that services can transfer if you move. Unfortunately, this is not the case. If I moved to Vermont, New Hampshire, or Connecticut, I’d have to apply for their state’s Medicaid coverage which may not cover everything Massachusetts Medicaid does. If I received a job offer in another state, I’d have to find accessible housing, reapply for Medicaid, and find a new healthcare team. This is a lengthy process that can take years.
For disabled people, society makes it difficult to make major changes in one’s life. I couldn’t simply move across the country to start a new job. I couldn’t go to college anywhere I wanted to. Being able to pursue new opportunities is a privilege that many people with disabilities don’t have.
Kaiser Family Foundation (2018). Waiting List Enrollment for Medicaid Section 1915(c) Home and Community-Based Services Waivers. https://www.kff.org/health-reform/state-indicator/waiting-lists-for-hcbs-waivers/?
“Number of Persons on Medicaid 1915(c) HCBS Waiver Wait Lists, 2016.” Center On Disability , Center On Disability , 31 Dec. 2016, https://centerondisability.org/ada_parc/utils/indicators.php?id=9.