Being disabled shouldn’t signify you’re unable to have goals; it should only mean you have to do things differently in order to achieve them. I live with a disability called Spinal Muscular Atrophy type II. It’s a disease that causes muscle weakness, ultimately it means I use a wheelchair to get around. I was born into a family stricken by poverty and I’ve relied on governmental services for financial and medical support.
Medicaid has been vital in my life for several reasons. First and foremost, it has allowed me to live independently and direct my own personal assistance program. Secondly, it has supported me financially by paying for my medical expenses. Last but certainly not least, it has permitted me to successfully transition from a long-term care facility (nursing home) to an apartment in the community.
I was incarcerated for 2,135 days (5 years, 10 months, & 5 days), imprisoned in a nursing “home” behind invisible bars in a place where I could never grow as a person, start my own family, or live a life of fulfillment, simply because I’m disabled. I’ve struggled countless of times to prove that I am capable, worthy even, to attain my basic human rights. I have successfully broken through the bars and regained my freedom.
In those five years of imprisonment, I made three attempts at being discharged into an apartment with assistance from personal care attendants. I was denied the services twice. The first time I was told it was because I was “too young” (at 18, graduating from high school) and had no experience with living independently. The second time I nearly went through the entire process; found an apartment, interviewed several caregivers, and identified a physician who was willing to take my case. I was then denied once again.
The third time, the county sent me a letter of denial two weeks before my discharge date, explaining that they made their determination based on my “failure to identify a self directing other”. In other words: because you are in a wheelchair, we don’t think you’re smart enough to direct your own care.
I couldn’t accept that answer. With CDR’s assistance, I immediately requested a fair hearing and in preparation I wrote an extensive letter explaining why I was challenging their decision. I was eventually given the opportunity to present my letter to the Administrative Law Judge. As a result, I won the hearing. The county couldn’t support any of their reasons for denying me and the judge clearly saw that my rights were being violated.
I was approved for 160 weekly hours of aide services. I now live in an apartment. Through Medicaid, I received a brand new wheelchair and assistive equipment to help with personal care. I have also been visited by an occupational and physical therapist to establish a range of motion program (something the nursing facility never provided). It has been three months and I’m still trying to figure what was so difficult about living independently or why the county and the nursing facility felt the need to deny me of my civil rights, not once, but twice and almost thrice.
With the way Medicaid’s system is structured now, people with disabilities have an extremely difficult time obtaining our independence. This is because of an institutional bias. People will generally look at a person with a disability and automatically think that we’re either worthless or in need of a lot of assistance. Because we need assistance, they would rather throw us in a hospital than to have to deal with us.
I can come up with many more reasons why Medicaid matters to me, but that’s not what I intended to do. Making any budget cuts to Medicaid would only take away from our freedom. More of us would end up without homecare services, imprisoned in nursing homes, or even without homes. Some of us will die. With that being said, I ask the reader this: does Medicaid matter to you?