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A Trapped
Quadriplegic Speaks About Nursing Homes
John Boyd, July 2005
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Kryptonite never
made Superman die; complications from quadriplegia did. I am
talking about 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 recourses to
provide for the care he needed. But, that is not true for most
quadriplegics; after a short rehab stay, they may end up in a
nursing home because the needed care is too expensive. And, did
you know that young people with various disabilities are there?
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
when I was twenty-seven. 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 none of
them wishing to stay in the nursing home system.
And if Paul Revere were alive today, I think his new warning
would be: "The baby boomers are coming, the baby boomers are
coming!" Yes, the population born after World War II 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 in the near future. When these two groups meet,
I believe the system will 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 warehousing people with
significant disabilities in nursing homes. The nursing home
lobby has ensured the government will continue to have Medicaid
and Medicare pay out approximately $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). These are two very reasonable 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 came as an answer 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/apartment 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 has 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 I believe that to some people, nursing homes
are virtual prisons without the bars. I know; I have lived in a
nursing home for close to 13 years now. I receive $35.00 a
month. The nursing home decides what food I will eat and when
food is prepared in mass, considering some people are not
allowed some spices; the food usually is not that good. 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.
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 NOW is the time
for us to demand change. History has shown that the great
empires demise was from within. Misspending to care for the aged
and disabled is eroding our children's finical future. Let's
protect our country's future; contact your representatives and
ask they pass MiCASSA.
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