In need of information

RedneckMomApril 28, 2005

Hi everyone. I am a new member. I have a 19 year old daughter who was born with Spina Bifida. She is a parapalegic with hydrocephalus. She has had 29 operations to date with more to come. We are a single income family of 5. My husband works and I care for our daughter, sons and the home. She recieve SSI benefits which covers almost all of her supplies and needs.

My question is this. Our home needs to be modified as she is going into a larger wheelchair. Is there any orginazations that could help with these expences? Also, she in her chair wieghs about 155 lbs. It is getting very hard for me to lift her in and out of our van. My back has had it. Do you know of any places where I can purchase a used lift or that donate? I have checked with local Masons and Shriners and have not had any luck. I take her to her doctors appointments and that is about it. She and I both are suffering from depression because we are in the house 24/7. My husband has had 2 back operations and cannot lift her for fear of injuring himself. If that happens we will lose his income and he is the only one working.

I have no help with my daughter. It is really hard bathing her. Our tub has a step on it and I cannot find a tub chair wide enough to fit it.

I do not mean to whine. I have cared for her all of her life with no help from anyone. I am getting older and my body is breaking down. Are there any resources avalible for people with disabilities?

Thank you in advance for your help. :)

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jeanninetx

Just touching the tip of the iceberg here, too late for my brain to work good. Have you asked her Dr. if he can write a prescription for a lift? Medicare paid for my sons lift when the Dr. said he needed one for me to get him from his wheelchair to his bed.
As for the transportation--You really need to check into a wheelchair van. I know the new ones are not cheap, but maybe if you can find a dealer near you, he may have access to a person selling one. I know that is how we sold the sons used van, the dealer selling the new one let us know of a woman on SSI needing one badly. We preferred to sell it cheap to some one who really needed it.
Medicare may or may not help with home problems, if you don't mind, drop me an email and I will be glad to write you.
Our son is a Quad, and I have been his caregiver for over 20 years. I know what you are going through.
jeanninetx@yahoo.com

    Bookmark   April 28, 2005 at 5:29AM
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Glitter53

Hello and welcome, Redneckmom...Although I can't be of much help to you with your requests, as I'm in Canada, I'm pleased you found your way here: there's so much support and encouragement here....Please drop by often and keep us informed of your progress...or just to 'chat'! We've all had our ups and downs so no one here judges anyone...

Blessings
Linda

    Bookmark   April 28, 2005 at 7:31AM
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heydeborah

Greetings from Canada too! i like Linda can't offer any help, i don't think because we are in different countries. we received assistance from Ontario Assistive Devices, The War Amps and March of Dimes and just a little help from the Red Cross. However, i have seen people in our city put ads in the newspaper asking for donations of wheelchairs etc. and you'd be surprises how nice people are out there. Wishing you luck and welcome! ps - i didn't think you were whining at all, you just stated your concerns that's what we're here for! debbie

    Bookmark   April 28, 2005 at 12:29PM
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derryw

HI "Mom" and welcome to the forum. I would second the though of getting an MD prescription for the lift. My experience was that Medicare would pay for at least part of something like that...a lift chair in our case. Also have you looked at what the March of Dimes has to offer? I well-understand the lifting into the car and shower business. You might look for a place that does conversions and ask about the swing-out seats, if the entire van is too much. I know they are dreadfully expensive and use lots of gas.
In out area, there have been several folks who got their vans thru fund-raising efforts thru church and other sources...this is "way out", but maybe your local newspaper could start the ball rolling with a feature story on the need.
Do keep in touch, and , again, welcome! I hope this works out. Derry
PS Have you looked at the "slide across" tub chair at www.drleonards.com? That worked great for my Mom.

    Bookmark   April 28, 2005 at 5:04PM
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RedneckMom

Thank you everyone for all of the info you provided. I spoke with my daughters orthopedic and he sent me an order for a lift to help transfer her into her bed. It will be here in a few more days.
I contacted our local March of Dimes, which is in Atlanta, and was told they ONLY assisted those with premature babies. I was under the impression that they would help all children with disabilities. Guess not.

Derry, I checked out Dr. Lenords site and the bath chair is not wide enough. Thank you for the suggestion though.

I am still trying to think of some fund raisers to help with a lift van. Any suggestions?

Thank you so very much for your help. (((hugs)))

    Bookmark   May 6, 2005 at 12:15AM
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LauraHinNJ

I'd suggest you check with your county social service office regarding programs to help with home modifications.

Here in NJ, in my county, we have a program to help with building wheelchair ramps and other needed modifications.

    Bookmark   May 6, 2005 at 6:30PM
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derryw

"MOM" Look at the website of the Spina Bifida Assoc. of Georgia, maybe.
DW

    Bookmark   May 6, 2005 at 7:07PM
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