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QUESTION: Our problem is that we are now faced with obstacles in
obtaining attendant care for it --- an very important and necessary
component. I originally wanted --- and still want --- 24-hour
attendant care to be available to us. It's not that we need 24-hour
attendant care per se, wanting to be wait on us "hand and foot". But
we, people with disabilities, lead busy lives like anyone else does.
We want to further our education, find employment, socialized with
others, and do all sorts of other activities that our non-disabled
peers do. However, with limited and periodical attendant care and the
way it is delivered put us in a straight jacket as to what we can do
in our daily lives. And the more disabled we are the more we are
restricted from doing what we could accomplish in our daily lives if
the system for attendant care was changed to fit our needs
and lifestyle.
Our first barrier is that Project itself cannot hire its own
attendant care, as regulations mandate. If it does, it will have to
become a licensed nursing home facility with regulations of that of a
nursing home. We certainly don't want that since nursing home
regulations are out of sync ith meeting our daily needs and, above
all, we want to have "complete control" of what we say and do in our
own apartment which is the primary goal of Lexie's Dream. So we had
to resort getting funding from the Community Service Program for
People with Physical Disabilities (or CSPPPD for short) to assist each
resident in his or her daily routine. The process of applying for
CSPPPD funding is its caseworker and the consumer such as
myself get together to determine how many hours of attendant care each
individual needs on a daily basis. But CSPPPD will only give a person
the minium number of attendant care hours to fulfill daily needs and
every minute of attendant care has to be accounted for. I've been
accessed for funding from CSPPPD for five hours of attendant care a
day when I move into Lexie's Dream Apartment Complex. Believe me,
five hours go very fast when you have so many needs as I do. To make
matters worse, when a person with a disability has CSPPPD funding for
attendant care, then he or she is not allowed to obtain any more
attendant care, even from other sources. This is because CSPPPD
mandates that it can be the only funding source that determines the
amount of hours of attendant care a person gets if he or she
applies for funding from them. If, in other words, a person gets more
attendant care, then CSPPPD claims that he or she doesn't need funding
from them for attendant care.
Therefore, I was wondering if anyone out there was in a
similar situation and was advocating to rectify this dilemma. Or if
anyone found "loop holes" in these regulations that would turn the
tables around to their favor, enabling people with disabilities to
live independently with a higher quality of life. Specifically
speaking, I'm referring to the regulations that 1). won't allow a
project such as mine to hire its own attendants without it having to
become a licensed nursing facility with regulations of that of a
nursing home, and 2). for an individuals to be able to obtain more
attendant care hours without losing funding from CSPPPD for attendant
care.
If you have similar situations like these especially in
efforts to rectify them, I'd be anxious to hear from you. You could
write me here or E-mail me at foxf...@enter.net. Take care, and have a
good day!
ANSWER: Sorry, I can't offer you any help I'm afraid.
Just writing to say, well done to you for getting this far.
I am paid to provide a day-service for people who more-or-less require
24 hour nursing care for the physical difficulties they have. The fairly
remote hospital they lived in closed and everyone moved into smaller
housing complexes near or in the city, provided by the National Health
Trust.
However, the nursing care is just that. Almost nothing else is provided
regarding getting out and about or encouraging friendships and visitors.
Although the people live right next to the main artery of the city
roads, they are still very, very segregated due to the lack of staff,
helpers, local family, friends, etc.
Socialising is seen as an 'extra' here in Britain, and because the
nursing care cost 300 per week, it seems no-one is entitled to any help
from other organisations, as you have described.
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