Life The Way I Want It:

Yesterday I read Justin Smith’s blog post about the challenges adults with disabilities face. It’s incredibly challenging for adults with disabilities to live independent lifestyles. I am fortunate to have a PCA that provides 24/7 care. Yet I’m only approved for 56.5 PCA hours per week under Medicaid. As a 22-year-old, I want to live an independent life.

I’ve lived in my apartment for two years now.  Affordable, accessible, housing is tough to find. Waiting lists for housing can be years long. Only two of the top 50 housing authorities have average wait times for families who have been accepted off the waiting list that are less than a year, according to a CBPP analysis of Department of Housing and Urban Development (HUD) data; the greatest wait times are up to eight years. On average, families waiting for vouchers had been on waitlists for more than 2.5 years nationally. 

Accessible housing is even harder to find. In 2020, when I moved out, there were no accessible,  affordable apartments available to rent nearby. Despite not being an accessible apartment, I was able to find one that worked well, for me. 

Medicaid is what allows me to live life. I don’t understand why Medicaid will pay for me to live in a nursing home but will only provide a certain number of hours of home care a week. I don’t want to live in a nursing home, and this is one of my biggest fears. My quality of life wouldn’t be the same if I were forced to live in a nursing home. Non-disabled adults in their twenties don’t live in nursing homes. I don’t want to either. 

Eventually, I hope to have a job. I want to achieve financial independence. Right now, I rely on my parents to pay some of my bills. Most adults have worked by the time they are 22. Working would be impossible without Medicaid. Relying on Medicaid means that I can’t make too much money. Medicaid makes working nearly impossible. Forced poverty is very challenging.  

In addition, workplaces aren’t obligated to allow PCAs in the workplace. Whenever I request this accommodation, it is denied. I wouldn’t be able to work without a PCA’s support. The right accommodations are essential for my success in the workplace, including access to a PCA. Working full time would be impossible without a PCA. I wouldn’t be able to work without assistance to use the restroom. Needing help daily doesn’t mean that I am incapable of working. If my needs can’t be accommodated, I’ll be unemployed forever. It won’t matter how impressive my résumé is.

Adults with disabilities deserve to live independent lives. We shouldn’t have to fear being forgotten about. I don’t want to spend my adulthood in an institutional setting. Everyone deserves to live life to the fullest regardless of whether or not they are disabled. Society shouldn’t make independence so hard. For me, ableism and antiquated policies are often just as difficult to deal with as Cerebral Palsy itself.


Acosta, Sonya, and Erik Gartland. “Families Wait Years for Housing Vouchers Due to Inadequate Funding.” Center on Budget and Policy Priorities, Center on Budget and Policy Priorities, 22 July 2021,


Originally published as Life The Way I Want It: at Grace Dow Writes

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