Judy Heumann, a lifelong disability rights advocate, passed away on March 4 at 75 years old. Heumann worked with the Clinton and Obama administrations, published books, and organized the The 504 Sit-in in 1977. She also helped found the first Center for Independent Living in the U.S.
Despite decades of hard work, Judy couldn’t retire. She worked until her death to avoid being forced into a nursing facility or other institutional setting. Many programs that disabled people rely on force them to live in poverty.
In my case, Medicaid is also tied to my SSI benefits. Unfortunately, SSI only allows a single person to have $2,000 in assets and a married couple to have $3,000 in assets. Disabled people who rely on Medicaid are also unable to save for retirement. 401K plans count toward the $2,000 asset limit.
Medicaid pays for my PCA services, so I can’t lose coverage. I couldn’t afford to pay for my annual medical expenses out of pocket. My PCA hours cost over $50,000 annually. I also use a power wheelchair that costs more than $20,000. My walker is more than $1,000.
Millions of disabled people face these same challenges. A.J. Kreig has Spinal Muscular Atrophy and uses a wheelchair. Kreig graduated from the University of Minnesota in 2013. Unfortunately, he is not working full-time as he had hoped. He says that despite his degree, he cannot make the money he deserves. Currently, the state of Minnesota pays for Kreig’s services in full. However, to keep them, he must earn $1,113 or less per month. That is the official poverty line.
Living with a disability is extremely expensive. According to the National Disability Institute, researchers estimate that households containing an adult with a disability in the U.S require, on average, 28 percent more income (or an additional $17,690 a year for a family at the median income level) to obtain the same standard of living as a comparable household without a member with a disability.
Accessible vehicles, incontinence products, enteral formula, shower chairs, and patient lifts are just a few of the things a disabled person might require. Health insurance often covers some of these costs, but not always. Obtaining insurance approval for many of these things is often a lengthy process. I had to file two separate appeals for my newest power wheelchair. Because of the appeals, the process took eighteen months.
I resorted to using GoFundMe to pay for the seat elevator on my chair. Unfortunately, fundraising for medical expenses is all too common. According to the CEO of the fundraising website GoFundMe, approximately 33% of all donations go towards paying for medical expenses.
Alice Wong has Spinal Muscular Atrophy. Last summer, Wong spent four weeks in the intensive care unit due to various medical emergencies, including a collapsed lung and trouble swallowing. When she was discharged from the hospital, it was recommended that she should move into a long term care facility. This was deeply frustrating to Wong.
A friend started a GoFundMe page to help pay for Wong’s care. Her care costs approximately $600 per day. No disabled person should rely on donations to live in their community.
Many disabled people rely on Medicaid to help them live in the community. Medicare and private insurance, don’t pay for home- and community-based services. The only way to receive this type of care is through Medicaid.
There are numerous barriers to employment for people with disabilities. People with disabilities should be able to work full-time and save for a house. They also shouldn’t lose their Medicaid coverage. For millions of Americans, including me, Medicaid is a lifeline. However, people like me shouldn’t be forced into poverty or forced to work until we are dead to receive the services we desperately need.
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Leiderman, Deborah. “The Activist Star of ‘Crip Camp’ Looks Back at a Life on the Barricades.” The New York Times, The New York Times Company , 25 Mar. 2020, https://www.nytimes.com/2020/03/25/movies/crip-camp-judy-heumann.html.
Littlefield, Susan-Elizabeth. “Minnesotans with Disabilities Say State Laws Restrict Financial Freedom.” CBS News, CBS Interactive, 20 Nov. 2022, https://www.cbsnews.com/minnesota/news/minnesotans-with-disabilities-say-state-laws-restrict-financial-freedom/.
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Wong, Alice. “’My Life Is in My Caregivers’ Hands’: Disability Advocate Alice Wong’s Vision for a New Approach to Health Care.” KQED, Northern California Public Media, 9 Dec. 2022, https://www.kqed.org/news/11934545/my-life-is-in-my-caregivers-hands-disability-advocate-alice-wongs-vision-for-a-new-approach-to-health-care.