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-FIFTEENTH
ANNIVERSARY ADA SPEECH By John Boyd |
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FIFTEENTH ANNIVERSARY ADA SPEECH By John Boyd July 2005 Kryptonite never killed Superman; complications from quadriplegia did. I am referring to Christopher Reeves and if we learned anything from his life, we would have learned that everyone is at risk of becoming disabled. After my accident at the age of fourteen, I learned more than I ever wanted to know. First, I learned how much I took for granted and after that; it was a continuing learning experience on how to compensate for what I had lost. Christopher Reeves was fortunate to have the resources to provide his needed care. But, this is not true for most quadriplegics. After a short rehab stay, they may be incarcerated in a nursing home because the needed care is too expensive to be paid for out of pocket. And, did you know that young people with various disabilities are there also? But from the disabled population, quadriplegics are more and more likely to be placed in a nursing home. I know, my first stay in a nursing home started at the age of twenty and ended seven years later. My current nursing home stay started when I was forty-one and that was six years ago. I met many quadriplegics during these placements and I remember all of them wishing to return to the community. This may seem selfish to some people in this country; however, our leaving the “system” will help in the long run. Now if Paul Revere were alive today, I think his new warning alarm would be: “The baby boomers are coming, the baby boomers are coming!” Yes, the population born after WWII is becoming old enough that illness and age may start them thinking about their long term cares needs and whether being placed in a nursing home is necessary. When this groups meets those already living in nursing homes, I believe the system will go bust. There must be a change in the way we handle care for the people in need. As it is now, there is a large bias for housing people with significant disabilities in nursing homes. The nursing home lobby has ensured the government will continue to have Medicaid and Medicare pay out almost $5,000 a month to house the sick, the elderly and the disabled. And yet, there are other options such as personal care waivers and purposed Federal Legislation such as MiCASSA – (Senate Bill S971, House Bill HR2032) and Money Follows the Person (S1394). These are two very reasonable legislative alternatives to the current system. The MiCASSA proposal (Medicaid Community Attendant Services and Supports Act) has been before the American People since November of 1999. It was a response to the Olmstead decision; when the Supreme Court ruled that needless institutionalization was discrimination according to the ADA laws. I could bore you with endless facts and figures about the feasibility of personal care waivers, which pay for in home care verses nursing home care. But what I would like for you to understand is that Medicaid is in more financial trouble than Social Security and I believe that the Bush Administration and Congress have no real answer for either dilemma. One example, if I were to have a toothache needing medical attention, Medicaid will not pay to fill the tooth and soon they will not pay to pull it either. So I have to give you this one fact; Last year, 2004, Florida received $2.5 billion for Medicaid spending and almost 89% of that was used to pay for long-term care in nursing homes. People, I hope you are listening; we paid nursing homes $2.25 billion dollars to care for the ill, elderly, and people with disabilities and that includes quadriplegics, like myself. From my perspective, nursing homes are virtual prisons without the bars. I know; combined, I have lived in a nursing home for more than 13 years now. I receive $35.00 a month. Medicaid pays to keep me in the nursing home and feels $35 is enough for me to live. This is not a place I would choose to live and the nursing home’s walls and fences make me feel trapped. When I make personal plans, I have to think about who is scheduled to work and will my time conflict with the time of those who assist me as they must assist others also. When I do leave, I must sign out and let the nurses know where I am going. I guess I am a trustee. I was told Medicaid pays exactly $4,470 dollars a month to house me in a nursing home. If I were given two thousand dollars less, I could live in the community, paying for my own assistance, and have a better quality of life. It would save Medicaid $24,000 each year. Now, multiply that figure by the number of people living in nursing homes who desire to live in the community and we will quickly begin to get the System of Medicaid back on track and end the momentous waste of your hard earned tax dollars. We are at a crossroad in this great country and the time has come for us to demand change. History has shown that the greatest empires demise has started from within. Misspending to care for the aged and disabled populations is eroding our children’s financial future. Let’s not repeat history and protect our country’s future; contact your representatives and ask they pass MiCASSA (and Money Follows the Person). For more info refer them to the: ILRC or NCIL the National Council on Independent Living in Washington D.C. BY JOHN BOYD
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