Impending Intergenerational Crisis”: Americans with Disabilities Lack Long-Term Care Plans

Impending Intergenerational Crisis”: Americans with Disabilities Lack Long-Term Care Plans

Thinking about the future makes Courtney Johnson nervous.

The 25-year-old blogger and college student has autism and multiple chronic illnesses and lives relatively independently in Johnson City, Tennessee, with the support of her grandparents and friends who give her access to a complex network of social services.

“If something happened to them, I’m not sure what would happen to me, especially because I have difficulty navigating things that require more bureaucracy,” she said.

Johnson said she hasn't made any plans that would ensure she receives the same level of support in the future. She is particularly worried about being taken advantage of or physically harmed if her family and friends cannot help her - experiences she has had in the past.

“I like knowing what to expect and thinking about the future is a little scary for me,” she said.

Johnson's situation is not unique.

Experts say many people with intellectual and developmental disabilities have no long-term plans when family members lose the ability to help them access government services or care for them directly.

Families, researchers, government officials and advocates fear that the lack of planning – combined with a leaky social safety net – has created the conditions for a crisis in which people with disabilities can no longer live independently in their communities. If that happens, they could end up stuck in nursing homes or state-run institutions.

"There's just the potential for a huge human toll on individuals if we don't solve this problem," he said Peter Berne CEO of Arc of the United States, a national disability rights organization.

About a quarter of adults in the United States live with a disability, according to the Centers for Disease Control and Prevention. Nearly three-quarters of Americans with disabilities live with a family caregiver, and about a quarter of those caregivers are age 60 or older. according to the Center for Developmental Disabilities at the University of Kansas.

But only about half of families caring for a loved one with disabilities have made plans for the future, and an even smaller proportion have reviewed those plans to make sure they are up to date, he said Meghan Burke Associate Professor of Special Education at the University of Illinois at Urbana-Champaign.

"It's good to get into it once, right? But you can't just get into it once," she said. “It’s a living document because things change, people change, circumstances change.”

Burke's research identified several barriers to future planning: financial constraints, reluctance to have difficult conversations, difficulty understanding government services. Creating plans for people with disabilities is also a complex process that requires families to answer many questions: What health needs do their loved ones have? What activities do they enjoy? What are your wishes? Where will they live?

Burke has firsthand experience answering these questions. Her younger brother has Down syndrome, and she expects to become his primary caregiver in the future - a situation she says is common and adds to the burden of caregiving.

“This is an impending intergenerational crisis,” she said. “It is a crisis for the aging parents, and it is a crisis for their adult offspring with and without disabilities.”

Nicole Jorwick, director of advocacy and campaigns for Caring Across Generations, a national caregiver advocacy organization, said the network of state and federal programs for people with disabilities can be "extremely complicated" and full of holes. She witnessed these gaps while helping her autistic brother access services.

“It's really difficult for families to plan when there's no system they can rely on,” she said.

Medicaid pays for people to receive it Services in the home and community environment through programs that vary from state to state. But Jorwic said there are long waiting lists. The data collected and analyzed by KFF shows that the queue consists of Hundreds of thousands of people across the country. Even if people qualify, Jorwic added, it can be difficult to hire someone to help ongoing staff shortages.

Jorwic said more federal money could shorten those waiting lists and increase Medicaid reimbursements to health care providers, which could help with workforce recruitment. She blamed chronic underinvestment in Medicaid disability services for a lack of available spaces and a shortage of workers to help people with disabilities.

“It will be expensive, but this is four decades of funding that should have been done,” she said.

Congress recently appropriated about $12.7 billion to improve state Medicaid programs for home- and community-based services for people with disabilities, but that money will only be available through March 2025. The Build Back Better Act passed in Congress would have added $150 billion and the funding was left out of the Inflation Reduction Act that became law this summer Disappointment of supporters.

Jeneva Stone's family in Bethesda, Maryland, was "amazed" by the long-term planning process for her 25-year-old son Rob. He needs complex care because he has dystonia 16, a rare muscle disorder that makes it almost impossible for him to move.

“No one is just going to sit down and tell me what’s going to happen to my son,” she said. “You know, what are his options, really?”

Stone said her family has done some planning, including setting up a special needs trust to manage Rob's assets and an ABLE account, a type of savings account for people with disabilities. They are also working to grant Rob's brother medical and financial power of attorney and create supported decision-making for Rob to ensure he has the final say in his treatment.

“We're trying to build this scaffolding, mostly to protect Rob's ability to make his own decisions,” she said.

Alison Barkow is Acting Administrator of the Administration for Community Living, part of the U.S. Department of Health and Human Services. Her agency recently released what she described as a “first.” national plan with hundreds of actions the public and private sectors can take to support family carers.

“If we don't really think and plan, I worry that people could and should end up in institutions and other types of segregated facilities that could and should be supported in the community,” said Barkoff, who noted that these results could violate the civil rights of people with disabilities.

She said her agency is working to address shortages in the United States direct care workers and in the provision of affordable, barrier-free housing for people with disabilities and the lack of disability-accessible training among medical professionals.

But ending up in a nursing home or other facility might not be the worst thing for some people, said Berns, who noted that people with disabilities are overrepresented in prisons and correctional facilities.

Berns' organization, the Arc of the United States, offers a planning guide and has compiled a directory of local advocates, advocates and support organizations to help families. Berns said ensuring people with disabilities have access to services — and the means to pay for them — is just part of a good plan.

“It’s about social connections,” Berns said. "It's about employment. It's about where you live. It's about your health care and making decisions in your life."

Philip Woody feels pretty well prepared for his son's future. Evan, 23, lives with his parents in Dunwoody, Georgia, and needs around-the-clock support after falling as a toddler and sustaining a serious brain injury. His parents take on much of his care.

Woody said his family has been saving for years to provide for his son's future, and Evan was recently taken off a Medicaid waiting list and is receiving assistance to attend a day program for adults with disabilities. He also has an older sister in Tennessee who wants to participate in his care.

But two big questions plague Woody: Where will Evan live when he can no longer live at home? And will this setting be one in which he can thrive?

“As a parent, you take care of your child as best you can while you can,” Woody said. "But then no one will love them or care for them the way you did after you died."

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