The ‘impending intergenerational crisis’: Americans with disabilities face long-term shortages

Thinking about the future makes Courtney Johnson nervous.

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

“If something happens to them, I’m not sure what will happen to me, especially because I have difficulty navigating things that require more red tape,” she said.

Johnson said he had no plans that would ensure he would receive the same level of support in the future. He is especially concerned about being taken advantage of or physically harmed if his family and friends fail to help him – something he has experienced in the past.

“I like being able to know 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 don’t have long-term plans for when family members lose the ability to access government services or directly care for them.

Families, researchers, government officials and advocates worry that a lack of planning — combined with a social safety net full of holes — has set the stage for a crisis where people with disabilities can no longer live independently in their communities. If this happens, they may end up in nursing homes or state-run institutions.

“If we don’t address this issue, there is a potential for a huge humanitarian toll on individuals,” said Peter Burns, CEO of Arc of the United States, a national disability-rights organization.

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

But about half of families who care for a loved one with a disability plan for the future, and an even smaller portion revise those plans to make sure they’re up to date, said Megan Burke, associate professor of special education at the University of Illinois at Urbana-Champaign.

“It’s good to be involved once in a while, isn’t it? But you can’t engage it only once,” he said. “It’s a living document, because things change, people change, situations change.”

Burke’s research found several barriers to planning for the future: financial constraints, reluctance to have difficult conversations, difficulty understanding government services. Planning for people with disabilities is also a complex process, with many questions for families to answer: What are the health needs of their relatives? What activities do they enjoy? What is their desire? Where will they live?

Burke has the experience to answer that question. Her younger brother has Down syndrome, and she hopes to become his primary caregiver in the future — a situation she said is common and diffuses caregiving.

“This is a coming intergenerational crisis,” he said. “It’s a crisis for aging parents, and it’s a crisis for their adult children with and without disabilities.”

Nicole Zorvik, head 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 complex” and is full of holes. She witnessed these gaps as she helped her brother, who has autism, access services

“It’s really hard for families to plan when they don’t have a system they can rely on,” she said.

Medicaid pays for people to receive services in home and community settings through different programs in different states. But Jorwick said there is a long waiting list. Data collected and analyzed by the KFF shows that hundreds of thousands of people have queued up across the country. Even when people do qualify, Jorvik added, it can be difficult to hire someone to help because of a persistent staff shortage.

Zorwick said more federal money could shorten those waiting lists and boost Medicaid reimbursements to health care providers, which could help recruit workers. He attributed chronic underinvestment in Medicaid disability services to a lack of available slots and staffing to help people with disabilities.

“It’s going to be expensive, but it’s four decades of funding that should have been done,” he said.

Congress recently set aside nearly $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 that died in Congress would have added $150. billion, and the fund was left out of the Inflation Reduction Act, which became law this summer, to the dismay of advocates.

One photo shows Rob Stone posing for a portrait outside  He is sitting in a wheelchair.
Rob Stone was born with a condition that greatly restricts his movement. His mother, Geneva, said her family was “overwhelmed” by the process of planning for the future. They just want to make sure Rob has a say in where he lives and the care he receives.(Rah Ford)

Geneva Stone’s family in Bethesda, Maryland, is “overwhelmed” 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 condition that makes it almost impossible for him to move.

“Nobody’s just going to sit back and say what’s going to happen to my son,” she said. “You know, what’s the alternative, really?”

Stone said her family has some plans in place, including a special needs trust to help manage Rob’s assets and an ABLE account, a type of savings account for people with disabilities. They are also working to create a supported decision-making system to give Rob’s brother medical and financial power of attorney and to make final decisions about Rob’s care.

“We’re trying to put that scaffolding in place, primarily to protect Rob’s ability to make his own decisions,” he said.

Alison Berkoff is the acting administrator for the Community Living Administration, part of the US Department of Health and Human Services. His agency recently released what he called a “first-ever” national plan, with hundreds of steps the public and private sectors can take to support family caregivers.

“If we don’t really think and plan, I’m concerned that we could end up with people in institutions and other types of isolated settings that could and should be supported in the community,” said Berkoff, who noted that these findings show that people with disabilities May violate civil rights.

He said his agency is working to address direct care workforce shortages and the lack of disability-focused training among medical professionals, along with providing affordable, accessible housing for people with disabilities.

But ending up in a nursing home or other institution may not be the worst outcome for some people, said Barnes, who noted that people with disabilities are overrepresented in jails and prisons.

Burns’ organization, Arc of the United States, offers a planning guide and has compiled a directory of local advocates, lawyers and support organizations to help families. Barnes said making sure people with disabilities have access to services — and the means to pay for them — is part of a good plan.

“It’s about social connection,” Barnes said. “It’s about jobs. It’s about where you live. It’s about taking care of your health and making your life decisions.”

One photo shows Evan Woody sitting at a table indoors
Evan Woody requires round-the-clock care and lives with his parents in Dunwoody, Georgia. His father, Philip, says his family has some plans for Ivan’s future, but one question remains unanswered: Where will Ivan live when he can no longer live with his parents?(Philip Woody)

Philip Woody feels as though he has prepared his son well for his future. Evan, 23, lives with his parents in Dunwoody, Georgia, and requires round-the-clock support after a fall resulted in a significant brain injury as a child. Her parents provide her with a lot of care.

Woody said his family has been saving for his son’s future for years, and Evan recently got off a Medicaid waitlist and is receiving support to attend a day program for adults with disabilities. She also has an older sister in Tennessee who wants to be involved in her care.

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

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

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