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Ever since a caregiver force-fed her with a spoon when she was 4, Caroline Munro has not let anyone but her mother feed her.

The 22-year-old has cerebral palsy and an intellectual disability. She doesn’t speak, and she functions at a preschool level. Her mother, Beth Munro, feeds her with a fork or with her hand at their home in Rockville.

As Beth Munro 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 disabled people. The list is thousands of names long, and as in many states, names on the Maryland list often stay on it until a caregiver falls ill or dies.

Nationwide, about 860,000 people older than 60 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 a 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 allowing them 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 older than 80 got needed services, and this year the state expanded the law to those with caretakers older than 75. In 2014, Connecticut passed a similar law, which is helping about 120 people with a caregiver older than 70.

But the waiting lists for needed services are still long. In recent years, states such as Maryland, Virginia and Pennsylvania have budgeted money to chip away at the rolls, 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,” she said, “and you get nowhere.”

First generation

The generation of caregivers older than 60 watched over decades as the United States grew more understanding of people with disabilities. A deinstitutionalization movement swept the country in the 1970s and ’80s, and for decades now, most people with disabilities who receive Medicaid help have been cared for at home by family members.

In 2013, spending for community- and home-based services surpassed spending for large institutions such as mental hospitals and nursing homes. By that time, 14 states no longer had any large state-run institutions for people with intellectual or developmental disabilities, and many others had only a few, according to University of Colorado research.

Deinstitutionalization has provided care that is more personalized while also saving states money. But it has meant fewer residential options and longer waiting lists.

About 198,000 people were waiting for home- or community-based services in the 34 states that reported data in 2013, according to University of Minnesota research.

If states aren’t able to provide services for everyone, they should focus on providing family caregivers with more support, such as high-quality case management and respite services, said Susan Parish, director of the Lurie Institute for Disability Policy at Brandeis University in Massachusetts.

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

Some steps in some states

Beth Munro said she has felt that way at times. She said she has been caring for Caroline on her own since her daughter 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, such as 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 (R) 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 decades-long fight to educate people and get more funding, said Cristine Marchand, executive director of the Maryland affiliate of The Arc. In the past, the organization would suggest a new way to cover the expenses — a tax on snacks or telecommunications, for example — and each time the governor at the time would take the money and use it for something else, Marchand said.

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 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.

Hope for an ‘active life’

Beth Munro said it’s tough to find the strength to lift her daughter in and out of the bathtub every night. But she’ll soon be getting extra help: Maryland officials just approved 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 things she likes, such as sewing, taking photos and dancing in her wheelchair — with help from others.

“That’s the main thing,” Munro said. “Not only that she’s well taken care of, but that she has an active life, doing things that she likes to do.”

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