“The waiting lists are going to grow astronomically,” said Joseph Caldwell, director of the Community Living Policy Center at Brandeis University. “We’re just sort of on the cusp of that.”
The problems of today date back to the 1970s and a deinstitutionalization movement that recognized developmentally disabled children and adults are better off when they are integrated into a community than warehoused in a group home. The shift since then been dramatic, with the institutionalized population shrinking about 90 percent in roughly the past half-century.
Over that time, autism diagnoses became far more common, those with disabilities lived longer than ever before and babies born prematurely survived at significantly higher rates. All of that meant that far more people need services, and governments have struggled to keep up.
The vast majority of people living with an intellectual or developmental disability rely on Medicaid, but the public insurance program typically only covers medical needs. Services such as help with daily tasks or job training are typically funded through a Medicaid program, known as Home and Community-Based Services waivers, that helps states keep people at home. However, states can cap enrollment, meaning some families end up on waiting lists for years and may only receive services when a caregiver dies or becomes incapacitated.
It’s a system that leaves older parents wondering whether they will be able to transition their child to a safe, appropriate environment. More than half of caregivers said they don’t have a plan for the future, and poor people were less likely to be prepared, according to a 2016 survey from the University of Minnesota and disability advocacy group The Arc.
The state often becomes the caregiver of last resort. But that might mean placing a loved one in a home hundreds of miles from their family.
“I think that’s the parents biggest fear: What’s going to happen to our children after we’re gone or no longer be able to take care of them,” said Joe Joyce, 59, of Pennsylvania, whose 21-year-old son, David, is severely autistic and prone to injuring himself. “It’s cheating parents out of their golden years, and it’s not good for them or for the child.”
There were more than 200,000 people in the United States with an intellectual or developmental disability not receiving government services, according to University of Minnesota researchers; another estimate from the Kaiser Family Foundation found there are probably hundreds of thousands more. It’s likely there are also thousands who will soon need services for the first time as their parents become old or infirm.
“A lot of these families aren’t known to the system, particularly aging caregivers,” Caldwell said. “It’s not uncommon to come across caregivers in their 90s.”
There hasn’t been a serious effort in Congress to bolster the nation’s patchwork system for long-term care since lawmakers included an insurance option in the 2010 Affordable Care Act — and quickly abandoned it. The Community Living Assistance Services and Supports Act, or CLASS Act, would have created a long-term care insurance program to help people afford services like home modifications and home health aides, but the Obama administration shuttered the program before it got off the ground, finding it was financially unworkable. Congress formally repealed the program in 2013.
“We can’t call it a crisis anymore,” said Mary Sowers, the executive director of the National Association of State Directors of Developmental Disabilities Services. “If it was a crisis, we would have done something about it.”
It’s a costly problem that is only going to get harder to solve. The average cost to provide support services per person is close to $50,000 per year, according to Coleman Institute for Covering Disabilities at the University of Colorado. With hundreds of thousands of people waiting, the challenge can seem insurmountable.
“Money will always be an issue,” said Allan Bergman, a consultant who has worked with several states on their Medicaid programs. “The issue is not going to get funded in the next three to five years, but states have to start making the investment in real system transformation recognizing that the current system is not sustainable.“
Some states are trying to get ahead of the demographic tsunami.
Tennessee, for example, in 2016 revamped its entire long-term care program, for the first time offering home and community-based services to people with a physical disability, which were previously only available to people with intellectual disabilities. In the first 20 months, nearly 2,500 people received those services, about 20 percent more than in the previous six years combined, said Tennessee Medicaid spokesperson Sarah Tanksley. Tennessee spent more than $100 million on its revamped program in two years, Including funds supplied by the federal government.
State lawmakers also guaranteed that anyone with an intellectual disability and a parent or guardian older than 75 is entitled to services. This was to help people with developmental disabilities adjust to having someone caring for them besides their parents, cushioning the trauma when their parents are no longer around.
“Seventy-five is still old,” said Carrie Hobbs Guiden, executive director of The Arc Tennessee. “I’d love to get it down to 70 and possibly 65.”
Ohio has also overhauled its program in recent years after having one of the nation’s longest waiting lists. There were 49,000 people waiting for services in 2016, according to the Ohio Department of Developmental Disabilities.
Former Gov. John Kasich in 2015 approved $245 million in new spending to create 3,000 new slots for services, an 8.5 percent increase. It was the largest amount spent on developmental disabilities in state history until Gov. Mike DeWine allotted $370 million this year.
“The last two budgets have been the best we’ve ever received,” said Gary Tonks, executive director of The Arc of Ohio.
Kasich also directed counties to comb through waiting lists to prioritize people who need immediate and near-term help, including aging caregivers, and determine whether they would be better served by another program. That review, which has continued under the new governor, is expected to last another year, but Tonks said it could reduce the waiting list by as much as two-thirds.
Some states, though, are facing an uphill fight. Florida spent $140 million between 2013 and 2018 in an effort to remove 6,000 people from its waitlist, but just as many people joined the list during that time.
And the problem there is likely to get worse. More than a quarter of caregivers in Florida are over 60 years old, the highest percentage in the nation, according to research from the University of Colorado.
“It’s a drastically, chronically underfunded system,” said Elizabeth Perkins, associate director at the Florida Center for Inclusive Communities.