The Maze Of Disability Benefits:

For people with disabilities who receive disability benefits, surviving can be a challenge. It is nearly impossible to live on meager monthly payments. I couldn’t live independently without my PCA. Unfortunately, gainful employment can also impact disability benefits.

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.

Kreig requires $67,000 in personal care assistance per year. Every day, PCAs assist him with getting out of bed, bathing, and getting dressed. 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.

Damon Leivestad, who has Muscular Dystrophy, studied mechanical engineering in college. He estimates that his 24-hour-care costs $100,000 a year. Levistad only works a few hours each week in order to receive full Medicaid benefits. Otherwise, he would have to make over $200,000 a year to pay for his care out of pocket.

Brittanie Wilson also uses PCA support. She works for the Minnesota Council On Disability. She works full time. Wilson is enrolled in a program that allows her to continue receiving services but requires her to pay a premium. She can only save $20,000 at a time and must fully declare her finances every six months. The program is time-consuming and complicated according to her. She believes that the program should allow individuals with disabilities who want to work to save money without limits in order to purchase a home. She says that she is not alone.

I have Cerebral Palsy and rely on Massachusetts Medicaid to pay for my PCA services. Unfortunately, the annual cost is more than $50,000. I couldn’t afford to pay for my care out of pocket. I’d be bankrupt from needing daily care to survive. For the past three years, I’ve been looking for work. I haven’t found anything. Earlier this year, I had hoped to meet with a benefits counselor to discuss employment. However, they never responded to my subsequent e-mails after needing to reschedule my appointment.

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. Medicaid provides access to home and community-based services, which private insurance doesn’t cover. However, people like me shouldn’t be forced into poverty to receive the services we desperately need.


Littlefield, Susan-Elizabeth. “Minnesotans with Disabilities Say State Laws Restrict Financial Freedom.” CBS News, CBS Interactive, 20 Nov. 2022,

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