The political fight in Congress is over the way Medicaid is funded, and families like the Donatellis find themselves on the frontline of the battle. People with disabilities account for 14 percent of the enrollees in Medicaid but 40 percent – the largest share – of the spending. They and their families see themselves as a big target for cuts.

"We're worried about the implications of the plans in Congress," said Max Donatelli. "People like Craig used to be hidden in institutions. We're deathly afraid of going back to those days."

"He and others can live in the community and contribute to society, but they need support," he said. "And, there are others more incapacitated by their disabilities whose needs are great through no fault of their own. They use ventilators. They have tubes that need to be changed. They need help going to the bathroom."

Medicaid operates as an entitlement in which people who qualify for coverage get it, depending on eligibility requirements and benefit levels in their state. The federal and state governments –and counties in New York – share in the cost.

Republican proposals in the House and Senate would replace the current system with per-capita caps on federal funding. The Senate bill calls for lowering the growth rate of spending starting in 2025.