Barb Vree helps her daughter Katie get ready for work in the mornings. Katie has used a wheelchair after she sustained a spinal cord injury at 17. Katie works as a healthcare coordinator in Illinois. Katie was eager to begin saving for the future, so she did what many Americans do: she opened a retirement account.
Earlier this year, however, she learned that her Medicaid benefits were being discontinued. Katie was surprised to learn that she no longer qualified for Medicaid. She opened a 401K plan with her employer, which made her ineligible for Medicaid. Unfortunately, this means that Katie no longer receives the in-home care she needs.
Attorney Amy Delaney argues that Katie’s 401K plan shouldn’t be counted as an asset due to her age. “She’s not allowed to touch the retirement account until retirement or unless there is some sort of catastrophic situation and Katie has a chronic condition,” Delaney told CBS Chicago. Medicaid, however, counts 401K plans as part of a beneficiary’s assets.
In Illinois, the home services program has an asset limit of $17,500. Katie’s retirement savings amount to approximately $39,000. However, it’s not enough to cover the expense of a personal assistant to help her with activities of daily living. Katie estimates caregiving expenses will be approximately $70,000 per year.
Unfortunately, millions of disabled Americans are in the same situation as Katie, including me. At 24, I have spent the last few years figuring out how to work and retain MassHealth. Many people my age have worked for years now. Thus far, I have had one paid work experience, writing for a magazine.
In my case, I hire PCAs to assist me with showering, toileting, and getting dressed, among other things. I also rely on my PCAs to assist me with transportation. Without their help, employment wouldn’t be possible.
Damon Leivestad lives in Minnesota. Leivestad has Muscular Dystrophy and studied mechanical engineering in college. He estimates that his 24-hour-care costs $100,000 a year. Levistad only works a few hours weekly to receive full Medicaid benefits from the state.
A.J. Kreig, who also lives in Minnesota, has Spinal Muscular Atrophy. He uses a wheelchair. Kreig graduated from the University of Minnesota in 2013. Unfortunately, he is not working full-time as he had hoped. 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.
Like Kreig, Anna Landre has Spinal Muscular Atrophy. After graduating from high school in 2017, she was accepted to Georgetown University in Washington, D.C. Landre was delighted to have the opportunity to do a paid internship as a sophomore.
Unfortunately, at the time, Landre was forced to make a devastating choice. She could get paid $14 an hour for her internship. Unfortunately, this modest wage would mean Landre would lose the vital personal care assistance she needed.
Judy Heumann, a lifelong disability rights advocate, passed away on March 4, 2023, at 75 years old. Heumann worked with the Clinton and Obama administrations, published books, and organized the 504 Sit-in in 1977. She also helped found the first Center for Independent Living in the U.S.
Judy was unable to retire despite working hard for decades. She worked until she died to avoid being forced into a nursing home or other institutional setting.
Disabled Americans should be able to work full-time and save for a home, their children’s education, emergencies, or retirement. They should not lose Medicaid coverage. Medicaid is a lifeline for millions of Americans. Medicaid provides access to home and community-based services that are not covered by private insurance.
Relying on home and community-based services should not mean disabled people are forced to live in poverty. Millions of people are stuck making difficult choices. Disabled people want to work, but bureaucracy often makes it challenging.
Sources:
Cokley, Rebecca. “‘Work until You Die’ Is Not a Retirement Plan.” The Nation, The Nation Company, L.P., 10 Mar. 2023, https://www.thenation.com/article/society/judith-heumann-work-retirement-plan/.
Carino, Jerry. “NJ Forces Disabled Howell Student to Make Brutal Choice: Internship or Health Aide Money.” Asbury Park Press, Gannett, 21 May 2018, http://www.app.com/story/news/local/values/2018/05/21/disabled-howell-student-nj-forces-choice-internship-health-aide/610909002/.
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/.
Parent, Rene. “Defined Contribution Pension Plans and the Supplemental Security Income Program.” The United States Social Security Administration , The United States Social Security Administration , 1 Mar. 2006, https://www.ssa.gov/policy/docs/policybriefs/pb2006-01.html.
Victory , Lauren. “Chicago Area Woman’s Disability Benefits at Risk Because She’s Saved for Retirement.” CBS News, CBS Interactive, 2 Oct. 2023, http://www.cbsnews.com/amp/chicago/news/woman-disability-benefits-risk/.