Stateline Examines What Happens to Developmentally Disabled as Parents Age, Die?

With medical, technological and public health advances, people with disabilities are living longer than before, Parish said. And with family size shrinking over the years, fewer siblings are around to assume care of their brother or sister as their parents age.

Caregivers need help transitioning out of their role — finding the person with disabilities a place to live, money, benefits and a new guardian, Parish said.

"I've worked with several parents who said they've hoped their son or daughter would die before they did because they don't feel there are supports out there," she said.

Beth Munro said she has felt that way, at times. She said she has been caring for Caroline on her own since she was 9 months old. Caroline has a brother and sister, but they live out of state and Beth doesn't want them to have to take over her role. Caroline's cerebral palsy affects both of her arms and legs. She is dependent for all of her care and can't be left alone.

But her laugh is full of life, and she laughs often. Her mother says she is generally a happy person. She is in a day program with other adults with disabilities, and they often go out into the community, like to a nature center or to the movies.

Under Maryland law, people with intellectual or developmental disabilities who are transitioning out of the school system at age 21 receive some services. Yet 7,600 people on the waiting list in Maryland either have no services or need more.

Last year, Gov. Larry Hogan, a Republican, added $3 million to the budget, which served about 120 people who were deemed to be in crisis, and added $3.5 million this year for the same purpose.

This has been a bright spot in a decadeslong fight by the Maryland affiliate of The Arc to educate people and get more funding, said Cristine Marchand, its executive director.

In the past, the organization would suggest a new tax in the state to cover the expenses — a tax on snacks or telecommunications — and each time the governor at the time would take the money and use it for something else, Marchand said.

Whether a state makes progress addressing the issue has less to do with the political party in power and more to do with how much officials know about the issue, or how much influence advocates have, said Bernard Simons, Maryland's deputy secretary for developmental disabilities.

Simons has worked in similar jobs in five other states and he said it’s the same wherever he goes — parents dying or getting sick, and children left with no plan in place.

States, including Maryland, need to be planning more, he said, instead of just reacting to emergencies.

In Pennsylvania, which has one of the largest waiting lists — about 13,800 people — Republican state Rep. Thomas Murt said he has several bills pending in the Legislature that would collect money specifically to provide services for the people on the list using different taxes, including on natural gas, tobacco, and vaping.

Like Maryland, Pennsylvania provides services for students transitioning out of school — about 700 a year. But sometimes it takes an older caregiver falling ill to get help, Murt said. "If another state is doing a better job, I think we should take a look at what they're doing."

Courts have ordered some states to provide more community-based services.

Virginia is making big changes to how it serves people with disabilities because of a 2011 settlement with the US Department of Justice, which found that the state was needlessly keeping people in institutions and failing to provide enough community-based alternatives.

The state agreed to close down four of its five large institutions and serve 4,170 new people with community-based supports by 2021.

In Tennessee, The Arc Tennessee, an affiliate of the national group, pushed the Legislature to help older caregivers.

And, because these people have gone without the state's help for so long, the Legislature wanted to help, said state Rep. Bob Ramsey, a Republican who advocated for the state's new law.

"I felt it really appropriate for us to do something to give them some relief and some assurance that they weren't going to have children, loved ones or friends that were assigned to institutions," Ramsey said.

About 6,000 people are on the state’s waiting list, but that’s only people with intellectual disabilities. Before this year, a person with a developmental disability but not an intellectual disability did not qualify for services. But the state is making changes. As of July 1, people with intellectual or developmental disabilities qualify for services under the state-run health system, as they do in California.

The state plans to provide new home- or community-based services to 1,700 people — compared to the 100 or 200 people it has been helping in recent years — on the waiting list this budget year, according to a spokeswoman, Sarah Tanksley.

In Maryland, Beth Munro has struggled for years to care for her daughter on her own. She said it’s tough to find the strength to lift her daughter in and out of the bathtub every night.

But later this month, she'll be getting extra help. The state just approved 35 hours of in-home services for her, including for bath time.

Still, she hopes her daughter can move into a group home soon, so she can start to learn to live without her mother and do the kinds of things she likes, such as sewing, taking photos and dancing in her wheelchair — with help from others.

"That's the main thing," Beth said. "Not only that she's well taken care of, but that she has an active life, doing things that she likes to do."

*The Pew Charitable Trusts is driven by the power of knowledge to solve today's most challenging problems. Pew applies a rigorous, analytical approach to improve public policy, inform the public and invigorate civic life.

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