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I can tell you that there are at least a dozen CHARGErs in Pgh whose

families are not registered with the Foundation. Some examples:

Two mother feel that they can handle it without any outside help.

Several mothers feel that their child is mildly affected and feels sadness

when seeing other more (even though their kids are involved, they're just

accustomed to dealing with they're share of problems).

Two families refused medical treatment for their kids this year allowing

them to die in the NICU (most likely the docs told the family that their kid

would be blind, deaf, and MR with no hope of a worthwhile life).

I hear about these and other families through my contacts at various

agencies and through friends, but they don't want to be contacted so my

contacts cannot release names and so forth.

BTW, I too had a nightmare with SSI and had to repay almost everything I

made even though the attorney got to keep her money!

Jeanne

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