I just received my new power wheelchair, and I notice that several others have also gotten new power chairs. I wonder if they were thinking what I was thinking. I knew I had to hurry up and apply for a new chair because I have no idea what is going to happen with people like me with Trump’s future medicare and medicaid reforms. This may very well be my last wheelchair. But losing funding for future wheelchairs is just one of our most grievous fears. We are unsure about how the actual reforms will be, but the speculations have me shaking in my boots.
The new administration is talking about the privatization of Medicare, which means we care purchase medicare plans like others purchase healthcare plans. The thing is so many of us will be unable to subscribe to such plans because of our fixed incomes. Placing caps on medicaid dollars on each person would cause catastrophes in millions of people’s with disabilities. This is because so many of us would reach our life time limits within a few years.
The removal of government healthcare services would mean I would not receive attendants to help with my showers, dressing, house cleaning, and meals. The 20 hours per week of help that are paid by the government allow me to live an active, healthy life. Without these services I would be trapped in my house, not contributing to society, unable to use the freedom that is granted me as a American.
True, I have a husband. However, Jayson has Bipolar Disorder. He is unable to take care of all my physical needs every day and night. The 20 hours per week that I receive enable Jayson to care for me all the other hours. Beside, it is never good to have all the responsibilities of caregiving be on one person. Growing up, we didn’t have these kind of services for families with children with disabilities. I saw the roll it had on my mom, a single parent. I knew if by some chance I got married, I would not have my husband be the sole care giver.
Like I said, I just received my new power wheelchair. It is basically my legs. Without it, I would be 100 percent depended on others to navigate the world. In fact, if the government had not funded my chairs over the years, I would still be at my mom’s. I would not been an active teenager, graduated college, lived on my own, fixed meals, worship with others, get married, give back to my community, tried different employment opportunities, engaged in public speaking, participate in politics, and experience the million of moments that make life magical. Taking away funding for wheelchairs and other technologies would be the equivalent of imprisoning people with disabilities, people like me.
I look at Jayson, and I am terrified at what these possible reforms may do to the love of my life and to the countless of others with psychiatric disabilities (mental illnesses). For Jayson to manage his Bipolar Disorder, it takes tens of thousands of dollars in medications every year. Without these, he loses touch with reality and has to be hospitalized. Without coverage, I fear my husband will be Institutionalize. I can’t bear the thought of my husband losing himself to his mind when we have medications to keep him in society, with his family, with his friends, with me. Removing funding for medications is cruel, and it does not live up to the American way.
Look. I get it. We must cut the amount of money the United States governments spend and put more income in tax payers’ pockets. It is not fair that my brothers and tens of millions work their pants off, and they can’t afford healthcare for their families. Jayson and I don’t work because of our disabilities. Yet we have our medical meeds funded. I don’t think that is fair. However, I assure you, Americans without disabilities have access to so many other things. I think we need to remember this as we go about reform. Let’s not pick on people with disabilities and the elderly.
Let’s Keep Being Brave.