About trying to live with ms and discovering that suddenly most places are inaccessible and that life as a handicapped person is very different.
Friday, February 27, 2009
The Care Industry
The local councils give handicapped people such aids as wheelchairs and hoists.
The criteria for the assistance are that handicapped people can take part in daily life.
However this benevolence does not encompass a real concern for citizen’s welfare as if it were so much more would be done.
As we are very rarely given what we really need and each application takes months, once it has been agreed, the paperwork has to be sent to the council for approval this last part of the trajectory takes two months until you get the aid.
For burocrats cost is everything that is their goal, sadly this often means that people have aids that are not properly adapted to their needs which are very short-sighted and in the long term not efficient or cost effective.
It seems that the buying policy is to buy a job lot of ugly, heavy wheelchairs and give everyone that applies for a wheelchair one of them regardless of their actual requirements.
No consideration is made of general health and welfare nor do they seem to trust the feedback from their clients ignoring any comments about shortcomings of the aids.
Have run in to this attitude myself time and again and inevitably it is more expensive as well as very upsetting...
My first wheelchair was given me on the basis that the advisor liked it.
I did not like it as it was too heavy, clumsy moving plus the seat was set up in such a way that the only way to sit was slumped backwards which made feel more handicapped plus the brakes were too tight for me to apply myself.
There was a wheelchair that was very suitable for me but this was from a different supplier plus it was more expensive.
I lost my appeal and was given the heavy wheelchair which I never used as it was not suitable
All in all a useless exercise and a total waste of time for all concerned.
Last year I was given an electric wheelchair that was not adapted for me as that was considered too expensive.
I immediately said that I could not sit properly and the backrest was not comfortable, was told that I needed to try it out for longer as I could not possibly have an informed view of it so quickly.
As it has turned out my feeling about the wheelchair and the lack of support was sadly correct.
The consequence of my case manager and advisor ignoring my feedback and requests for help has been a horrible pressure sore and 6 months in bed up to now before I can sit up again.
That is much more expensive in terms of the increased care I have needed plus the opportunity cost of having months of my life literally taken away from me..
Hope they finally either adapt my chair or get me one that is suitable.
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9 comments:
Hi!
Yeah I love how other people get to decide things for us, especially when they don't even know who we are.
They nickel and dime us to death and then give all our money to the rich.
I'm speechless...
Love,
Ana
Keep making noise ( i dont mean that noise is bad) but to those that are making the decisions it may sound like background noise:)!!
If your physio can be an advocate that will help alot. You have come so far so keep on going!
It is always with great foreboding I await a meeting with the representatives of the "Care Industry". Even when the people are sympathetic the bureaucracy is still obstructive. Sometimes the people are just plain weird!.
The woman who found the wheelchair we warehoused for a period (I used it once to carry a TV for my neighbour) so nice even had the cheek to complain about you blogging it. They want to screw us in secret- speak out while you can!
Reading your post I cannot help but notice Patti's old wheelchairs that have become part of our front room furniture. MS progression affects even what kind of wheelchair. We USE them for guests and visitors. Amazing how able bodied people react to finding themselves sitting in a wheelchair. Hopefully it also improves their understanding.
Caregivingly Yours, Patrick
http://caregivinglyyours.blogspot.com/
BR's first wheelchair came on loan from a nationwide medical equipment provider, and the only one serving San Francisco. The chair was brand new, but entirely wrong for someone taller than 5'6". I called to see what other options they offered, and was told they don't stock anything that Medicare doesn't pay for. If you are obese, they have a bariatric wheelchair, but if you haven't yet started shrinking due to old age, they have nothing for you. The only alternative was to buy a chair and have the insurance company reimburse a token amount.
Same story for the hospital bed that was too short, and the hoyer lift that couldn't get BR into the tub because of casters that were too large.
We spent our money on the most important item -- the chair, and have made due with the others.
When the alternating pressure pad on the bed sprung a leak, it took over a week to replace. By that time, BR had developed two pressure sores. They weren't nearly as bad as yours, but the extra care required certainly cost the insurance company more than a higher quality pad would have.
BR has been using a Roho inflatable cushion on his wheelchair, and it has made a world of difference.
the wheelchairs our lot over here give out are useless.mum was shaken to bits the first time i took her out in it several years ago.luckily my friend pam bought mum a lovely pneumatic tyred one.we use the other just to take her out to car,you take careherrad,love mort.xx
Hi Herrad:
I am hoping that the money we sent you can go a long way to getting the right cushion for your chair. Please let us know what happens in that regard.
Love,
Anne
Herrad,
I wrote a post and used this one of yours.
http://justana-justana.blogspot.com/2009/02/america-no-money-for-health.html
If you have any problem I can delete it.
Hope you're fine.
Love,
Ana
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