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Posted by Royalene on October 22, 2000 at 20:09:31:

In Reply to: adults with downs syndrom posted by Ray Wachter on December 27, 1999 at 15:41:50:

: I have an adult, 30yr old daughter, with downs syndrom. As my wife and I are closing in on retirement, I'm looking for information for respite care for up to 3 weeks occassionally. Also, I would like to find information on facilities that could take care of her needs full time if my wife and/or I should be incapable of seeing to her needs in the future. For that matter I would like information as where she could live when my wife and I pass away. Any help on books or reference material that one could recommend would be greatly appreciated. I would like to start planning for her future while I'm still in good health. At this point my daughter is in good health, holds a job, and participates in many social activities. I would like to insure that her future adult life, without her parents, could at least continue as it has been.
: Thanks

Ray, I am sad that nobody has responded to your question. My husband and I became guardians of my brother-in-law, 33 years old DS, with severe diebetes. His mother dies of cancer (knowing for 4 months) yet did not make any provisions. Eight children in the family, we decided to take him in our home. Since this has happened, the family no longer talks to him. It is so sad. I am glad that you are looking in the future. TAlk to an attorney, regarding guardianship, maybe a will and money going in a trust fund for special needs. Is there any organizations like ARC. They may even suggest an attorney. Good Luck, let me know. We have had Joey for 6 months and are still waiting for respite care for him. We also needed to move, so he could have his own bedroom, ending up moving to a different county, now waiting even longer.

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