Thinking about the future worried Courtney Johnson.
The 25-year-old blogger and college student has autism and several chronic illnesses, and with the support of her grandparents and friends, who help her access the complex web of social services, she lives relatively well. independence in Johnson City, Tennessee.
“If something happens to them, I’m not sure what will happen to me, especially since I have a hard time navigating things that need more red tape,” she said.
Johnson said she hasn’t put in place a plan to ensure she gets the same level of support going forward. She is especially 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 love being able to know what’s going to happen, and thinking about the future makes me a little scared,” she said.
Johnson’s situation is not unique.
Experts say many people with intellectual disabilities and developmental delays have no long-term plans when family members lose the ability 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 flawed social safety net – has set the stage for a crisis in which people People with disabilities are no longer able to live independently in their community. If that happens, they could be stuck in nursing homes or state-run institutions.
Peter Berns, CEO of Arc America, a national disability rights organization, said: “There is a potential for great loss of life to individuals if we do not address the issue. this topic.
According to the Centers for Disease Control and Prevention, about a quarter of adults in the US live with a disability. Nearly three-quarters of Americans with disabilities live with a family caregiver, and about one-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 a disability have plans for the future, and a smaller fraction have reviewed those plans to make sure they’re up to date, said Meghan Burke, associate professor of education specifically at the University of Illinois at Urbana-Champaign.
“Participating in it once is fine, 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 uncovered several barriers to planning for the future: financial constraints, reluctance to converse, confusion about government services. Disability planning is also a complex process, with many questions for families to answer: What are the health needs of their loved one? What activities do they like? What are their wishes? Where will they live?
Burke had firsthand experience answering those questions. Her younger brother has Down syndrome and she hopes to become his primary carer in the future – a situation she says is widespread and widespread.
“This is an impending intergenerational crisis,” she said. “It’s a crisis for aging parents and it’s a crisis for their adult children with and without disabilities.”
Nicole Jorwic, head of advocacy and campaigns for Caring Across Generations, a national caregiver advocacy organization, said the network of federal and state programs for people with disabilities can be “extremely complex.” complicated” and full of holes. She witnessed those gaps when she helped her brother, who has autism, access services.
“It’s really hard for families to plan when there’s no system they can rely on,” she said.
Medicaid pays for people to get services in home and community settings through programs that vary from state to state. But Jorwic said there are long waiting lists. Data collected and analyzed by KFF shows hundreds of thousands of people across the country. Even if everyone is eligible, Jorwic added, hiring someone to help can be difficult because of persistent staff shortages.
Jorwic said more federal money could shorten those waiting lists and speed up Medicaid reimbursements for healthcare providers, which could help with workforce recruitment. She blamed chronic underinvestment in Medicaid disability services on a lack of available positions and a lack of workers to help people with disabilities.
“It’s going to be expensive, but this is the four-decade grant that should have been made,” she said.
Congress recently spent about $12.7 billion to strengthen state Medicaid programs for home and community-based services for people with disabilities, but that money will only be available through March of this year. 2025. The Better Rebuilding Act, which passed Congress, would add $150 billion, and funding has been removed from the Inflation Reduction Act, which became law over the summer this, to the disappointment of supporters.
The family of Jeneva Stone of Bethesda, Maryland, were “confusion” 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 nearly impossible for him to move.
“No one is going to just sit down and tell me what’s going to happen to my son,” she said. “You know, what are his picks really?”
Stone said her family has made several plans, including setting up a special needs trust to help manage Rob’s wealth and an ABLE account, a type of savings account for people with disabilities. They are also working to provide Rob’s brother with a medical and financial power of attorney and create an assisted decision-making agreement for Rob to ensure he has the final say in his care. mine.
“We’re trying to install that scaffolding, mainly to protect Rob’s own decision-making ability,” she said.
Alison Barkoff is the administrator of the Community Life Administration, a division of the U.S. Department of Health and Human Services. Her agency recently released what she calls a “first” national plan, with hundreds of actions 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 in organizations and other types of segregated environments that can and should be supported in the community, ” said Barkoff, who noted that those results could violate the civil rights of people with disabilities.
She said her agency is working to address direct care workforce shortages and provide affordable, accessible housing for people with disabilities, as well as a lack of training focused on people with disabilities among health professionals.
Ending up in a nursing home or other educational setting may not be the worst outcome for some people, Berns said.
Berns’ organization, Arc of America, provides a planning guide and has compiled a directory of advocates, attorneys and local support organizations to help families. Berns says ensuring people with disabilities have access to services – and the means to pay for them – is only part of a good plan.
“It’s about social connections,” says Berns. “It’s about jobs. It’s about where you live. It’s about taking care of your health and making decisions in your life. “
Philip Woody felt as though he had prepared quite well for his son’s future. Evan, 23, lives with his parents in Dunwoody, Georgia, and needs round-the-clock support after a fall as a child resulted in serious brain injury. His parents provide much of his care.
Woody said his family has been saving for years to care for their son’s future, and Evan recently got off the Medicaid waiting list and is being supported to join an adult day program. disabilities. He also has an older sister in Tennessee who wants to be involved in his care.
But two big questions are asking Woody: Where will Evan live when he can no longer live at home? And is that setting a place where he can thrive?
“As a parent, you’re going to take the best care of your child,” Woody said. “But then no one after you’ve passed away will love them or care for them the way you did.”
Kaiser Health News is a national health policy news service. This is an editorially independent program of the Henry J. Kaiser Family Foundation not affiliated with Kaiser Permanente.
