Medicaid Cuts Reduce Pay for Family Caregivers in Maryland

Melissa Gonce cares full time for her 28-year-old son Jason, who is nonverbal and has profound disabilities including significant cognitive limitations and frequent seizures. Under a Medicaid-funded program that permits families to be paid as caregivers, she receives about $67,000 a year.

The arrangement allows her to provide consistent care that includes bathing, feeding, administering medicine and ensuring his safety. Six years ago Gonce said she would cry when Jason returned from his day program soaked in urine, dehydrated and distressed after the van arrived hours late.

Since she began caring for him herself, his seizures have stabilized and he has made small gains in independence and daily routines. " That stability is now threatened by state and federal budget actions. A federal spending package signed by President Donald Trump last year is expected to reduce Medicaid funding by about $1 trillion over the coming decade.

At the same time, Maryland has implemented its own reductions to programs serving people with developmental disabilities.

Maryland officials cut $126 million this spring from programs for people with developmental disabilities. Beginning July 1 the state will lower wages for family caregivers and limit the number of hours they can be paid each week. The Democratic-controlled Legislature and Gov.

Wes Moore approved the measures after hearings in which dozens of families asked lawmakers to restore the funding. Amanda Hils, a spokesperson for the Maryland Department of Health, said the changes were necessary because costs for programs supporting people with disabilities had grown by more than 144 percent over the past five years.

The cuts are intended to ensure the long-term stability of the programs, which are one of Moore’s top priorities, Hils said in a statement. For Gonce, who is also raising a 14-year-old son, the changes will result in an annual income reduction of roughly $18,000.

Other households in the program that pay multiple family caregivers could see income reductions exceeding $80,000. Gonce said she now faces a decision about whether she can continue caring for Jason at home or will need to return him to a day program.

Paying family members to provide care for disabled and elderly relatives through Medicaid had drawn broad bipartisan support in recent decades. The approach developed as an alternative to institutional care, which was often costly and inhumane. In the 1980s the Reagan administration began using Medicaid funds to support home- and community-based services so people could live outside institutions.

The system has faced chronic strains, including long waiting lists, low pay for workers and difficulty retaining staff. Those pressures increased during the pandemic. Many states responded by expanding opportunities for family members to be paid as caregivers, allowing relatives to provide consistent one-on-one care instead of relying on understaffed programs or rotating workers.

Enrollment in these programs grew rapidly, increasing costs for states. Some conservative policymakers have questioned continued payment to family caregivers, citing concerns about program costs and potential fraud. The federal reductions will begin affecting state budgets next year.

Molly Morris, co-founder of the Self-Direction Center, which supports Medicaid self-direction programs, said reducing paid family caregiving could place additional pressure on an already strained system with workforce shortages and waiting lists. " Morris said.