From: Frank.Whitney@f1000.n261.z1.fidonet.org (Frank Whitney)
Newsgroups: misc.handicap
Subject: Pipe Dreams
Date: 13 Apr 92 21:04:23 GMT
Reply-To: Frank.Whitney@f1000.n261.z1.fidonet.org
Organization: FidoNet node 1:261/1000 - Nerve Center, Pikesville MD

Index Number: 21073

[This is from the Spinal Injury Conference]

BG>>Hundreds of thousands of disabled  persons live outside of nursing faciliti
BG>>at the present time without the support of your attendant program. As soon
BG>>the program is  implemented, it will be abused. At  the present time, paren
BG>>of children with a disability can secure  four hours of respite care each d
BG>>from our  medicaid program.  Some parents  choose to  work, others  shop, a
BG>>still others watch TV while the home health aide cooks dinner.

BG>Excuse me,  but by saying this  you are displaying appalling  insensitivity
BG>the needs of  able-bodied care-givers; something I have noted  being done by
BG>number of disABLED individuals. I know. I  am disABLED myself, and I have be
BG>guilty of this behavior.

To bad that I missed the original thread of this message.  From what I
can gather though, I am in agreement with much of what you are saying.
I know that when my girlfriend and my family was taking care of me it
seemed like I never really appreciated what they were doing for me.
This was especially true of my girlfriend.  It seemed like the more she
would do for me the worse I would treat her.  It wasn't until we
separated that I realized what a gem I had lost.
I also think that 4 hours a day is generally going to be quite
sufficient for the parents or other care givers to get the proper
respite care that they need.  I know that when I was living at home or
with my girlfriend that 4 hours was probably the maximum time that I
needed to get ready for work and to then get ready for bed.  Much more
time then that and I wouldn't have needed any further assistance from
either my family or my girlfriend!

BG>OK, so we are the ones who are  "disabled". Fine. But it can be more stressf
BG>than many of us  realize or are willing to admit for  an able-bodied person
BG>act as care-giver, on whatever level. Why  should we begrudge them a few hou
BG>respite from  what can otherwise  seem like a life  sentence at hard  labor
BG>that is what is  needed to restore their morale? Remember,  *we* depend of t
BG>state of their morale, too.

It is true that we are putting stress on our able-bodied care givers but
as I said before, I don't really believe that my person requires much
more then 4 hours of respite time.  Of course, I am working on a
full-time job and am spreading the work of my care around.  Were I not
working on a full-time job, I don't know how I would be reacting.

BG>>Family, wives, parents all over the country are helping their disabled fami
BG>>members cope with their  needs of daily living. They do  it much cheaper th
BG>>any federal program and  with a much greater sense of love  and caring than
BG>>paid attendant.

On this issue I have to disagree with you here.  Just because they are
family members doesn't mean that you are going to get any better care.
Sometimes it is going to be quite the opposite.

BG>In many  cases, that may  be true.  In many other  cases it is  definitely N
BG>true. My father died because there was  nobody available for a couple of hou
BG>a day to  see that he got a  balanced diet and took his  medicine for diabet
BG>and cancer.  I came to check  on him whenever I  could arrange transportatio
BG>and  in every  instance I  found  freeloaders had  moved  in on  him and  we
BG>stealing his things.  No matter how many  times I ran them out,  they would
BG>back soon after I departed. Now tell me how an attendant "who didn't love hi
BG>would have  been bad  for him.  He didn't  need "love"  from an  attendant,
BG>needed service. The idea that family members can, or will, care for each oth
BG>in this age of the dissolution of the nuclear, to say nothing of the extende
BG>family is a myth that belongs  with the other fondly-recalled falsehoods abo
BG>The Good Old Days.

I couldn't agree with you more.  I'm happy that you were able to look in
on your father but I'm sorry that you always found him lacking in the
proper essentials.

BG>>If they, the disabled, are coping without the aide, then why create a progr
BG>>that will end up costing billions.

This is where my not knowing the background of the situation is not
allowing me to make a proper interpretation of the value of the program.
Personally I don't get any supplemental aid and although it would be
nice, I'm not looking for any at the present time.
Frank.
___
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