Dear Sen. Leahy,
I am writing to let you know what an important role Medicaid plays in my life and urge you to continue your opposition to any cuts to this life-saving resource. My name is Nathan, I am a C4/C5 quadriplegic, I am a bilateral arm amputee and I am profoundly deaf. I also live on my own, work part-time and am deeply involved in my community. I can tell you right now that none of this would be possible without Medicaid. I have always believed that I can achieve the same goals I had all my life after becoming disabled if I had the proper resources available to me. Since I was 18, I have depended on Medicaid to pay for my at home caregivers and help cover my immense medical costs. It allowed me to move out of my parent’s home, go to college and live on my own after graduating.
Even now that I am married and on my wife’s private health care plan, I depend on Medicaid to cover the personal care assistants who help me get up in the morning and assist with my care during the afternoon. None of this is covered by private insurance and I highly doubt it ever will be. I also face immense co-pays for medications, durable medical equipment, and doctor/hospital visits. Every 5 years I need to purchase a new wheelchair and arm prosthetics cost well over $15,000. I also have to purchase the equipment to maintain and repair these items while I have them. Despite what people will say, 5 years the very long time for a piece of equipment you depend on every day to hold together and it is a struggle just to get insurance to approve repairing or replacing essential equipment like wheels, joysticks and armrests. Every year I need to get new tires and batteries for my power wheelchair in order for it to run and get me to the places I need to be. Every year it seems like it takes longer for insurance to approve these essential expenses. When they do, Medicaid is there to cover the other 20% that my wife’s private insurance does not. There is no way I would be able to cover the other 20% of these things without putting myself and my family financial dire straits.
Last year, I had to stay in the hospital on 3 separate occasions from infections related my disability. Again, Medicaid was there to cover the immense remaining cost our private insurance was not able to cover. I shudder to think what would happen to us if we had to cover these costs ourselves.
The fact of the matter is that I would love to expand my career and work a full-time job. However, current laws dictate that if I do this, I might lose the current Medicaid benefits I have. NOW I am also facing the possibility of losing the benefits I currently have working part time. I am terrified that I will no longer be able to work at my job and my wife will not only have to support us financially but also take care of all my personal care. She already handles so much and works as a school behavioral interventionist mainly so she will have the time available in the afternoon and summers to assist me. I have no doubt that we will not be able to afford our house if I lose my benefits. I fear that I will have to move into a nursing home, which by the way will cost taxpayers even MORE than my current living situation.
My life was dramatically changed when I became disabled 27 years ago. However, with the help of family, friends and valuable resources like Medicaid I have been able to live a fulfilling and productive life on my terms. I urge you to continue to say NO to any proposed cuts to Medicaid and spread the word on how impactful it is on the lives of people with disabilities.