Hi Betty.

I don't think parents ever stop worrying about kids with disabilities. BUT
you have to start preparing us when we are young to be independent. I know there
is disparity in services
throughout the USA, but then you should look to model programs or legislation
and say, we need that in our area. The Lanterman Act in California, for
instance, created the opportunity for people living in institutions to live in
their communities, and have the support structure they need to not only help
people with developmental disabilities, but to also give their parents peace of
mind in their old age.

I know of many people with severe disabilities who live in their own
apartments with the help of dedicated staff. They get money from in-home support
services as well as Regional Center pays an agency of the person's own choosing
with additional support. Granted if somebody has severe mental retardation, then
additional help and support is carefully given, however even those with
cognitive disabilities can make many decisions about their own lives. Like what to
make for meals, what they want to do on any given day, who to spend time with.
etc.

Mag, 47, with quad athetoid CP/fibromyalgia, arthritis, djd.