Courtney Johnson, who has autism and multiple chronic illnesses, lives a relatively independent life. Her grandparents and friends help her access social services. Still, she says, “it’s kind of scary to think about the future.” Tristan Lane Hide caption
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Courtney Johnson, who has autism and multiple chronic illnesses, lives a relatively independent life — her grandparents and friends have helped her access social services — but she says “the future is a little scary.”
Tristan Lane
Thinking about the future makes Courtney Johnson nervous.
The 25-year-old blogger and college student has autism and several chronic illnesses, but lives relatively independently in Johnson City, Tennessee, with support from her grandparents and friends, who help her navigate a complex network of social services.
“If something happened to them, I don’t know what would happen to me, especially since I’m not very good at navigating things that require more red tape,” she said.
Johnson says she has no plans in place to ensure she has the same level of support in the future, and is particularly worried that if family and friends are unable to help her, she will be taken advantage of or physically harmed, as she has been in the past.
“It’s nice to know what’s going to happen in advance and it’s kind of scary thinking about the future,” she says.
Johnson’s situation is not unique.
25% of American adults live with a disability
Experts say many people with intellectual or developmental disabilities don’t have long-term plans for what will happen if their families are no longer able to help them access government services or provide direct care.
Families, researchers, government officials and advocates worry that a lack of planning, combined with a porous social security net, could lead to a crisis that prevents people with disabilities from living independently in the community, potentially confining them to nursing homes or state-run institutions.
“If we don’t fix this problem, there could be huge personal harm,” said Peter Burns, CEO of the national disability rights group Arc of the United.
According to the Centers for Disease Control and Prevention, approximately 25% of American adults live with a disability. According to the University of Kansas Center for Developmental Disabilities, approximately 75% of Americans with disabilities live with a family caregiver, and approximately 25% of those caregivers are over 60 years old.
A care plan must be a document that is constantly updated because circumstances change.
But only about half of families caring for a loved one with a disability have planned for the future, and even fewer have updated their plans to keep them up to date, says Megan Burke, an associate professor of special education at the University of Illinois at Urbana-Champaign.
“It’s nice to participate once, right? But you can’t just participate once,” she says. “Things change, people change, situations change, so it’s a living document.”
Burke’s research found that there are several barriers to planning for the future, including financial constraints, unwillingness to have difficult conversations and difficulty understanding government services. Planning for a person with a disability is also a complex process, with many questions families must answer: What are your relative’s health needs? What activities do they enjoy? What are their hopes? Where will they live?
Rob Stone was born with a disability that limits much of his movement. His mother, Geneva, says the family is “overwhelmed” with the process of planning for the future. They just want to make sure Rob has a say in where he lives and what care he receives. Rufford Hide caption
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Rob Stone was born with a disability that limits many of his physical movements, and his mother, Geneva, says the family is “overwhelmed” by the process of planning for his future — they just want to have a say in where Rob lives and what care he receives.
Rufford
Burke has firsthand experience answering these questions: Her brother has Down syndrome and she will one day be his primary caregiver. She says it’s a common situation and one in which caregiving work is expanding.
“This is an immediate intergenerational crisis,” she said. “It’s a crisis for aging parents and it’s a crisis for their adult children, with or without disabilities.”
Nicole Jorwick, advocacy and campaigns director for Caring Across Generations, a national caregiver advocacy group, said the network of state and federal programs for people with disabilities is “incredibly complicated” and full of loopholes she saw firsthand while helping her younger brother, who has autism, access services.
“If families don’t have a system they can rely on, it’s really hard to make a plan,” she said.
Advocates see chronic underinvestment in Medicaid disability services
Medicaid pays for people to get services in their homes or communities, through programs that vary from state to state. But Jorwick says there are long waiting lists, which number hundreds of thousands of people nationwide, according to data collected and analyzed by KFF. Even for those who qualify, Jorwick adds, chronic staffing shortages make it hard to hire others to help.
Joewick said more federal funding could shorten waiting lists and boost Medicaid reimbursements to providers, helping them fill staffing gaps. He blames the lack of slots and the shortage of workers to support people with disabilities on chronic underinvestment in Medicaid disability services.
“It will cost money, but this is funding that should be done over 40 years,” she said.
Congress recently spent about $12.7 billion to shore up state Medicaid programs for home- and community-based services for people with disabilities, but that money is only available through March 2025. The Build Back Better Act, which died in Congress, would have added $150 billion, but the money was removed from inflation-busting legislation passed this summer, to the dismay of supporters.
Geneva Stone of Bethesda, Maryland, said her family is “overwhelmed” with the long-term plans for their 25-year-old son, Rob, who has dystonia 16, a rare muscle disorder that makes movement nearly impossible and requires complex care.
“No one is going to sit me down and tell me what’s going to happen to my son,” she said. “What options does he actually have?”
Establishing special savings accounts and plans for “supported decision-making”
Stone said the family has done some planning, including setting up a special needs trust to help manage Rob’s assets and an ABLE account, a type of savings account for people with disabilities. They also are giving Rob’s siblings power of attorney for health care and finances and are working to create a supported decision-making arrangement so Rob has final decision-making authority over his care.
“We’re trying to create that scaffolding, primarily to protect Rob’s ability to make his own decisions,” she says.
Allison Berkoff is acting administrator of the Administration for Community Living, part of the U.S. Department of Health and Human Services, which recently released a “first-of-its-kind” national plan that includes hundreds of steps that public and private organizations can take to support family caregivers.
“I worry that unless we give serious thought and plan, we will end up putting people in institutions or other segregated settings who could and should receive support in the community,” Berkoff said, noting that such an outcome could violate the civil rights of people with disabilities.
He said the agency is working to address direct care workforce shortages, a lack of affordable and available housing for people with disabilities and a lack of disability-specific training for health care professionals.
Evan Woody requires around-the-clock care since his brain injury and lives with his parents in Dunwoody, Georgia. His father, Phillip, says the family has some plans for Evan’s future, but one question remains unanswered: Where will Evan live when he can no longer live with his parents? Phillip Woody Hide caption
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Evan Woody requires around-the-clock care since his brain injury and lives with his parents in Dunwoody, Georgia. His father, Phillip, says the family has some plans for Evan’s future, but one question remains unanswered: Where will Evan live if he can no longer live with his parents?
Philip Woody
But being placed in a nursing home or other institution may not be the worst outcome for some, Burns said, noting that prisons and jails are overcrowded with people with disabilities.
A step-by-step guide to planning accordingly
Burns’ organization, The Arc, offers step-by-step planning guides and has compiled a directory of local advocates, lawyers and advocacy groups to help families. Burns says ensuring that people with disabilities can access services and have the means to pay for them is only part of good planning.
“It’s about social connections,” Burns said, “it’s about employment, it’s about where you live, it’s about health care and life decisions.”
Philip Woody feels pretty prepared for his son’s future. Evan, 23, lives with his parents in Dunwoody, Georgia, but he needs around-the-clock support after a fall as a toddler left him with a severe brain injury. His parents do most of the caring for him.
Woody said the family has been saving for his son’s future for years, Evan was recently taken off the Medicaid waiting list and is receiving assistance attending a day program for adults with disabilities, and he has a sister in Tennessee who wants to be involved in his care.
But there are two big questions plaguing Woody: Where will Evan live if he can no longer live at home, and will that environment be one in which he can thrive?
“As a parent, you take care of your children as best you can, for as long as you can,” Woody says, “but after you’re gone, no one is going to love or care for them the same way you did.”
KHN (Kaiser Health News) is a national, editorially independent program of the Kaiser Family Foundation (KFF).