Check out this NPR story reported by Joe Shapiro about families fighting to care for their kids with disabilities at home. It’s a window into families caring for someone with disabilities and getting long-term health care. The story highlights The Arc’s position that people in the Medicaid program should have care at home and in the community, not in an institution or nursing home.

You’ll meet Olivia Welter, 20, of Illinois, who like countless thousands, is cared for at home and requires intensive 24-hour care. She gets life-saving medical care through a program provided by Illinois’ Medicaid program. But since it’s a program for children, she will no longer be eligible for that care when she reaches 21.

It’s expensive to care for Olivia at home – nurses cost about $220,000 a year – less than half the cost of what the state counts as the alternative — having her live in a hospital. Olivia’s parents, Tamara and John Welter, are grateful for what Illinois has done in the past but they figure they’ve saved the state millions of dollars by keeping her at home.