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UCP Useless?

Have you received help through United Cerebral Palsy? Post your experiences here.

Moderators: Lori-ann, Tmagic650

UCP Useless?

Postby Tmagic650 » Tue May 23, 2006 8:42 am

For me and others I have known, UCP is more interested in doing nothing rather than helping people with CP just about on every level... They are great at giving excuses and wasting time. Each State's Independent Living Centers are much better sources of one on one help and information.

Wether we have CP or any other condition caused by injury of the brain or nervous system, we have all been lumped together by UCP. We are all human, but my CP may not be like others and I may need a different type of help than someone else
Spastic Diplegia CP
aka Kurt... Sometime walks, sometime rolls
Tmagic650
 
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Location: Billings, Montana

Postby Teryn » Wed May 31, 2006 4:33 pm

Here in Portland Oregon UCP does offer some support for parents of kids with CP. They have a support coordinater to let you know what services are available in your area, a yearly conference with speakers on different topics and a monthly support group for parents. I do feel that they spend a lot of money though on paying the people that work for them and wish there was better use of the money donated.

Kurt,

Have you ever thought of trying to be on one of their committee boards so that you can have a say and input on what they're doing in your area?
Teryn
 
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Postby Tmagic650 » Wed May 31, 2006 6:17 pm

Local area Independent Living Centers have a lot more to offer to people with CP. I was involved with many people who never got any help or support from United Cerebral Palsy. They should change their name to United States Nervous System Advocates... I know several people on their boards. You are a parent, not someone with CP. Try working with them on the level of having CP... They never have anything to offer us adults. Remember, we were once children with CP too. They're a sad supporter to us with CP. To you parents they may be something else. You wil never really understand what your child has to deal with having CP, please remember this
Spastic Diplegia CP
aka Kurt... Sometime walks, sometime rolls
Tmagic650
 
Posts: 49
Joined: Mon May 22, 2006 5:34 pm
Location: Billings, Montana

Postby Teryn » Wed May 31, 2006 6:57 pm

It's funny because in your post I felt some hostility and actually felt defensive about what you said. It made me think that maybe you took my suggestion personally when I was just trying to think of what could be done to change things and make them better. There's no way that any of us can fully comprehend another person's situation. You will never know what it means to be a mom with a child who has CP but that doesn't really matter. What's important is that we support each other and try to make things better for those who will come after us.
Teryn
 
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Postby Tmagic650 » Mon Jun 05, 2006 10:36 am

There are a lot more options open to parents and their children with CP now. It is unfortunate that these parents and children are more "isolated" from information on CP because there is a lot more Mainstreaming. I was one of the first people to be "mainstreamed" in my area of the country. This was in 1966-67 in Los Angeles, California. Because I was educated for the most part, in schools for the disabled, we were able to see and talk about new surgeries and other treatments for CP first hand. One child would experience a treatment. If it was beneficial, others would try it. Parents could compare notes, their children could compare notes. To depend on UCP for anything is just foolish in my opinion
Spastic Diplegia CP
aka Kurt... Sometime walks, sometime rolls
Tmagic650
 
Posts: 49
Joined: Mon May 22, 2006 5:34 pm
Location: Billings, Montana

Re: UCP Useless?

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Re: UCP Useless?

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Re: UCP Useless?

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