System of Care at Risk

CONCORD, N.H. -- Scratch the parent of a child with a significant disability and you find this fear: What will happen to my child when I am gone?
And by gone, I mean dead. We hope, of course, that our children outlive us. And those of us who have children needing a lot of help throughout the day wonder, who will do this when he is 50 and I'm dead?
It didn't used to be this way. It used to be worse. Had my son Samuel been born in 1965, the year I was born, doctors would have counseled us to put him in an institution and forget about him.
If parents chose to buck the norm and keep their child at home, they were completely on their own. There were no programs to help a family with a child with a disability. And there was no societal support for their decision. Friends, family and clergy pressured families to give up their "defective" children for the good of the family as a whole.