In The Politics of Autism, I write:
One California regional center serves 5,000 adult clients who live with their parents. “And every one of those clients will age,” says the center's executive director. “People who grew up in our system are now middle-aged, and their parents are older.” Adds Frances Gracechild, the executive director of Sacramento's Resources for Independent Living, “We have this phenomenon of aging parents with increasing need for support themselves, and they're still taking care of their grown developmentally disabled children. It's quite a burden to meet when you're facing your 70s.”At Stateline, Jen Fifield writes of Beth Munro, 68, who cares for a severely disabled daughter.
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. Tennessee passed a law in 2015 to ensure that anyone with an intellectual disability and a caregiver over 80 got the services they needed, and this year the state expanded the law to those with caretakers over 75. And in 2014, Connecticut passed a similar law that is helping about 120 people with a caregiver over 70.
But the waiting lists for needed services in these states and many others are still thousands of names long. In recent years, states such as Maryland, Virginia and Pennsylvania have put money into their budgets to try to chip away at the lists, and they get federal matching dollars to help pay for it. Some states are prioritizing people with urgent needs, while others are prioritizing students as they age out of school.