Families caring for disabled relatives face unthinkable choices as Medicaid cuts loom

Melissa Gonce cares full time for her 28-year-old son, Jason, through a Medicaid program facing major cuts. She expects to lose $18,000 a year.Kyna Uwaeme for NBC NewsU.S. newsFamilies caring for disabled relatives face unthinkable choices as Medicaid cuts loomPresident Trump’s “big, beautiful bill,” state budget turmoil and new attacks on paid family caregiving have people fearing financial ruin as they fight to keep loved ones out of institutions.ShareAdd NBC News to GoogleMay 15, 2026, 5:00 AM EDTBy Mike HixenbaughPARKVILLE, Md. — Melissa Gonce used to cry when her son came home from his day program soaked in urine, dehydrated and distressed.Subscribe to read this story ad-free Get unlimited access to ad-free articles and exclusive content.Jason, 28, is nonverbal and profoundly disabled, with significant cognitive limitations and little awareness of danger — vulnerabilities that require constant, watchful care.Some nights, the van that was supposed to bring him home arrived hours late. Gonce would call and call, scanning the street, her mind racing. When he finally arrived, he was sometimes slumped over, pants wet down to his socks, his fingertips bitten raw.Six years later, Gonce no longer worries about whether Jason is being cared for — because now she does the job herself. Under a Medicaid-funded program that allows families to be paid as caregivers, she earns about $67,000 a year to look after him full time, bathing, feeding and keeping him safe.The program, Gonce said, “saved my family.”Under his mother’s care, Jason’s seizures stabilized and he began making small gains in independence and daily routines. Her constant fears began to ease.Jason's growing independence and his family's financial stability are threatened by looming Medicaid cuts, his mother says.Kyna Uwaeme for NBC NewsNow, families like hers worry that stability could soon collapse.A sweeping federal spending package signed by President Donald Trump last year — his “big, beautiful bil...