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OPEN LETTER TO THE GOVERNOR
June 20, 2002
Dear Governor Holden:
My name is Dana Miller and I have been a quadriplegic for over 16 years. Of those 16 years, nearly 15 of them I have lived independently. The non Medicaid Eligible program (NME) has made that possible. It has made my life as “normal” as it can be with my disability.
I can manage my own household--like ‘you’ do!
I can decide what to eat--like “you” do!
I can go to a movie--like ‘you’ do!
I can have a hobby--like ‘you’ do!
I can visit with friends and family when I want to--like ‘you’ do!
I can go shopping--like ‘you’ do!
I have been in nursing home type facilities as cutbacks in the medical field makes me go to one of those places for ‘bedrest’ after a surgery. I’m lucky to get a quick rinse for a bath and maybe 20-30 minutes of actual person to person interaction. If the NME Program is cut, I will end up in a nursing home as my parents are in their 70’s and do not have a fully accessible house and cannot do all of my care. Neither of us can afford to pay for all the care I need. It has been well documented that it costs more to sustain a person in a nursing home rather than have a personal care attendant plan in place. If placed in a nursing home I would be able to do “none!” of the above and more, such as go to dog shows, continue in my dog training, spend time on my computer and the most important thing, be independent.
When I have been in the nursing homes, “personal” does not exist!
They talk right over you, talk to each other like you don’t exist
and will leave you naked in the bed for short periods of time while bathing
or changing the bed. Hair seldom gets washed and your lucky if it gets
brushed. I have had aides from nursing homes try and put me in my wheelchair
and it was pitiful! What they consider good and straight would leave me
twisted and soon my muscles would be very sore from not being in the proper
place. If I would ask them to spend more time to get me comfortable in
my chair, they would get irritated and say they did not “have the
time”. or would say, “be right back” and would disappear
and I would have to go and try and find someone to help me get comfortable.
Since my accident I have taken a few college courses to add to my three plus years of college. I did the newsletter for 2 years for a club I belong to. Before Rusk Rehabilitation Center moved across town, I did volunteer work there for about 7 years.I am involved with service dogs, their training and educating people about them. I also plan on putting some obedience titles on my dog in the future. So along with his service dog tasks he is in training now for those titles. Before my accident I showed dogs for 10 years and have had service dogs for 10 years too. You don’t know how excited I am to have the opportunity to get back in the obedience ring, to talk with other ‘dog show’ people, to be around that atmosphere and have people see the accomplishments I have done with my dog--who I have trained myself--and be accepted for what “I” am, not as a poor person in a wheelchair! I also talk to people all over the country and world via my computer about not only dog things, but spinal cord injury groups to keep up on what’s new in that area and ‘tricks of the trade’ in helping me stay healthy and happy!
With good personal care, my service dog and a few customized tools I can spend nearly all day long by myself. The NME program has allowed me to schedule my attendant time so that my weekends are free during the day. I use the weekdays to do the “necessary” things. Also, if an attendant is not dependable or does not give me good care, the NME Program allows me to fire that person and find a good, dependable attendant.
The time I spend by myself is time that the state does not pay for my
existence. If I were in a nursing home, an aide, a CNA, a nurse and administrative
people are all being paid for every hour and minute I am there even if
they are doing nothing for me! If the NME program were dropped from the
budget, my life as I have described it would cease to exist and even more
money would be used in maintaining my existence in a nursing home.
Sincerely,
Dana Miller
1201 Paquin #502
Columbia, MO 65201
573-442-0207
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