|Emily Criss, who has developmental disabilities, with her mother Elizabeth.|
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 people with disabilities. 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 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.
Yet advocates for people with disabilities, such as Nicole Jorwic, director of rights policy at The Arc, a national nonprofit, say there needs to be a federal fix.
“Something that pumps money into the system,” Jorwic said. “And that’s just not going to happen in the current climate in Congress.”
In Maryland, Beth Munro realizes that unless she becomes seriously ill or dies, her daughter might not be placed in a group home.
“I’ve worked really hard at the issue over the years,” Munro said, “and you get nowhere.” (Click to Continue)
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States Look To Help Aging Parents Of Those With Disabilities