Sarah Bojanowski is a 25-year-old woman living with Down Syndrome, a host of medical problems, and her parents in Williamsville.
“People like Sarah, she can't take care of herself,” said her mother Nancy Bojanowski.
Nancy and Jim are not only her parents, but Sarah's caregivers and will be as long as possible.
“There will be a time when we need care and then who will take care of Sarah? And then there will be a further time when we'll be dead,” added Nancy.
There are about 1,000 families in a similar position right here in Erie County, families taking care of a developmentally disabled child that's now an adult and cannot live on their own. They wonder about the future of their child once they can no longer take care of them.
For years, ever since a 2008 moratorium was passed in New York, the building of any "special interest" homes have ceased. Homes that could help Sarah when her parents can no longer.
Jim and Nancy are frustrated seeing state money being spent, but not on what could be a critical program for their daughter.
“We need to be proactive rather than reactive,” said Nancy.
They just hope there is a change before it's too late.
The State's stance on the issue has been to transition more to an independent living situation. Something that doesn’t work for every family.