Medicaid Funding Reductions Affect Family Caregivers in Maryland

Families caring for disabled relatives in Maryland are adjusting to state-level reductions in Medicaid-funded caregiving programs that take effect July 1. Melissa Gonce cares full time for her 28-year-old son Jason, who is nonverbal, has profound cognitive limitations and requires constant supervision.

Under a Medicaid program that permits family members to be paid as caregivers, she earns about $67,000 a year. Six years ago she took over his care after repeated incidents in which he returned from a day program soaked in urine, dehydrated and distressed.

Under her care, Jason’s seizures stabilized and he made small gains in independence and daily routines. Gonce said her constant fears about his well-being eased. She is also raising a 14-year-old son. The state will reduce family caregivers’ wages and cap the number of hours they can be paid each week.

For Gonce, the changes are expected to result in an annual loss of roughly $18,000. Some households that pay multiple family caregivers say their incomes could drop by more than $80,000.

A federal spending package signed by President Donald Trump last year is expected to slash Medicaid funding by about $1 trillion over the coming decade. Trump’s Medicaid reductions will begin affecting state budgets next year. Maryland acted earlier, cutting $126 million this spring from programs serving people with developmental disabilities amid inflation-driven deficits.

Amanda Hils, a spokesperson for the Maryland Department of Health, said the changes were necessary to rein in costs of programs supporting people with disabilities, which had grown by more than 144 percent over the past five years. The cuts aim to ensure the long-term stability of the programs.

The Democratic-controlled state Legislature and Gov. Wes Moore adopted the measures after hearings in which dozens of disabled program recipients and their families asked lawmakers to restore funding.

Paying family members to care for disabled and elderly relatives had broad bipartisan support until recently as a way to address a shortage of home-care workers. The approach grew out of a 1980s policy change under the Reagan administration that used Medicaid funds to support home- and community-based services as an alternative to institutionalization.

States and the federal government share the costs of the system, which has long had waiting lists numbering in the hundreds of thousands nationally. Many states expanded paid family caregiving options to provide consistent care by trusted relatives rather than rotating outside workers.

Enrollment growth later increased costs and drew scrutiny from some conservative policymakers who described the programs as prone to fraud and waste. Molly Morris, co-founder of the Self-Direction Center, said attacking paid family caregiving could overwhelm a system that is already strained with too few workers and long waiting lists.

Jason Resendez, president and CEO of the National Alliance for Caregiving, stated that the payments compensate for services required because of serious illness or disability rather than simply paying relatives to be present. Gonce said she now faces a decision on whether she can absorb the reduced payments and continue caring for her son at home or whether she will need to return him to programs she believes previously failed him.

On Wednesday, Vice President JD Vance announced the Trump administration was withholding $1.3 billion in Medicaid funds from California over fraud concerns that included home care. Republicans on the House Oversight Committee also sent a letter to Ohio’s Medicaid director questioning payments to family caregivers.