By Jen Fifield
ROCKVILLE, Md. — Ever since she was 4, when a caregiver force-fed her with a spoon, Caroline Munro has not let anyone feed her but her mother.
The 22-year-old has cerebral palsy and an intellectual disability. She doesn’t speak and functions at a preschool level. Her mother, Beth Munro, feeds her with a fork or her hand.
As Beth ages — she’ll be 68 in October — she wonders who will care for Caroline when she’s no longer around. But she may never know. Caroline is on a Maryland waiting list for additional Medicaid services for the disabled. The list is thousands of names long, and as in many states, names often stay on it until a caregiver falls ill or dies.
About 860,000 people over 60 nationwide are in Beth’s place, caring for someone with intellectual or developmental disabilities in their home. And many are waiting, sometimes for years, for state-provided Medicaid help for their disabled child, sister or brother, such as placement in a group home, day services, or transportation or employment programs.
If they can’t afford to pay for these services on their own, under the federal-state Medicaid system, their relative could end up in an institution.
As the number of older caregivers grows, and their need for help becomes more dire, a few states have passed laws to give older caregivers a chance to help decide where, and how, the person they care for will live. [Read more…] about What happens to developmentally disabled as parents age and die?