Older and disabled Americans are languishing for years on waiting lists for home care. Why don’t we fix this?

Published on
November 10, 2022

When President Biden signed the Inflation Reduction Act in late August, giving seniors a much-needed break on drug prices, one important provision in the legislation was left out. It was the $150 billion in funding that would have increased and improved services for the millions of Americans who require home and community-based care — the kind of care more and more of the country’s growing elderly population and millions of younger people with disabilities typically prefer. Pressure had been building from advocates for people with disabilities to include money for services like meal preparation, attendants to help with bathing and dressing, and transportation so people could live and work in their communities. In the end, lobbying and legislative compromises squashed all hope of whittling down the waiting list of some 820,000 Americans who are being deprived of services and a chance to live independently.

The Biden administration had initially proposed $400 billion in funding for this category of care, which “would have gone a long way but still wasn’t enough,” said Nicole Jorwic, chief of advocacy and campaigns for the nonprofit Caring Across Generations. “We had been continuing to tell people this was a health package, but it wasn’t a winning argument in the end.” The U.S. system of caring for people with disabilities is underfunded, unappreciated, and kept in place on a shoestring by dedicated caregivers who sometimes don’t earn much more than the federal minimum wage of $7.25 an hour. The estimated count of 820,000 people waiting for services nationwide is a “minimum,” a Congressional staffer told me. “The number is probably in the millions.” (While waiting lists from one state to the next are not directly comparable, they are a rough indication of the need for services.)

Brandie Makrin knows how challenging the waiting lists and bureaucracy can be. In 2021, her family relocated to South Carolina from Massachusetts, where her then 21-year-old autistic son was still considered a minor and living in a residential facility. He had been doing very well there, and had a part time job thanks to the state’s waiver. But getting services in South Carolina became a nightmare. He was number 13,754 on one of the state’s waitlists for home and community-based services, and number 9,548 on another. With those odds, getting services was unlikely, and Makrin said state officials told her something traumatic had to happen to her son before he could get help, and advised her that if she wanted better services, she should move back to Massachusetts. Eventually, South Carolina officials said there was emergency funding that could be used to provide services for her son. After five months of persistent calling, she finally reached the director of the state’s Department of Disabilities and Special Needs and pled her family’s case. Her doggedness paid off, and the family qualified for the new funds. Her son was then able to participate in an adult day program that promotes socialization and independence four days a week, paid for by South Carolina’s Medicaid waiver. 

“The Build Back Better bill was an effort to play 50 years of catch-up in social policy. Everyone will end up with some type of disability as they age. The economic crisis facing the disability community is huge.” — Rebecca Vallas, The Century Foundation

The seeds of our current dilemma were sown in the 1960s when Congress created Medicare. The federal legislature decided that nursing home care was to be an entitlement, meaning that all Medicare beneficiaries who needed services were entitled to them, assuming they qualified medically and financially. But over the years, new places for care, changes in family preferences, technology and medical advances made it possible and more acceptable for families to find alternatives to nursing homes in their communities. In the 1980s, Congress authorized a home care benefit as part of Medicaid. It was not created as a universal entitlement like nursing home care, but as a benefit subject to restrictions states could and do impose. That benefit is provided under a Medicaid waiver the states obtain from the federal government. States can cap the number of people receiving waiver services and impose other restrictions such as the amount of income and type of disability that qualifies. Someone with high-functioning autism, for example, may not get services.

Over the years, the demand for care has grown as service options have multiplied, but funding has not kept pace with the volume of Americans needing help. That funding shortfall reveals a painful reality. People now waiting for services may never receive them. “The Build Back Better bill was an effort to play 50 years of catch-up in social policy,” said Rebecca Vallas, a senior fellow at The Century Foundation and co-director of the Disability Economic Justice Collaborative. “Everyone will end up with some type of disability as they age. The economic crisis facing the disability community is huge.” Each state decides who gets home care, what kind, and for how long. “The robustness of the benefit package and how long you have to wait for it can be determined by your ZIP code,” said Jennifer Lav, a senior attorney for the National Health Law Program. “Once you get services, you can’t move because you can lose those services.”

When it comes to how long people wait, who gets help, how generous that help will be, and for how long, it’s a giant patchwork quilt of services across the country. In some states, the odds of ever getting help are so low that residents will never leave the waiting list. “Waiver benefits are not entitlements. If a state doesn’t have a spot for you, you don’t get a benefit even if you qualify,” said Maryland elder law attorney Morris Klein. “People go to a nursing home or die before they get off the waiting list.”

“The robustness of the benefit package and how long you have to wait for it can be determined by your ZIP code. Once you get services, you can’t move because you can lose those services.” — Jennifer Lav, senior attorney, National Health Law Program

That’s the case in Maryland, where the state’s wait list for home and community services, which it calls a waiver services registry, now numbers some 22,000, elder law attorneys told me. A year ago, The Washington Post reported that “(m)ore than 25,000 residents sit on wait lists to be approved.” I contacted the Maryland Department of Health to confirm the current number on the list, and a spokesperson for the department said, “We do not have a wait list. We have a registry. Every Marylander is free to enter their name on the registry. However, we know that a vast majority of people on the list are medically and financially ineligible.” Elena Sallitto, another elder law attorney, told me, “It’s estimated that it is eight years before you’re up for services.” In July 2021, the state said “the registry is inviting” people on the waiver services registry to submit an application for the waiver. Sallitto said that 80% of the invitations are supposed to go to those most at risk for institutionalization. The other 20% are targeted to those who’ve been on the list the longest.

In Florida, waiting lists are even longer. There are nearly 52,000 people waiting in the queue for long-term care services. This January, 22,000 Floridians were on another list for people with developmental disabilities. In this last legislative session, the legislature appropriated about $60 million to move some 1,000 people with developmental and intellectual disabilities off the waiting list, which advocates say barely makes a dent in the list — and it doesn’t seem like the actual number of people on the list is being whittled down. “In Florida, there’s not a lot being done to expand either of these Medicaid waivers,” said Nancy Wright, an elder law attorney in Gainesville.  “My best guess is there’s no will to provide the funding. The sad truth is there’s not a sense of responsibility for taking care of these most vulnerable people.” It’s not hard to see what that means. Gabriel Parra, who heads the advocacy group The Arc of South Florida, says that he gets calls every day from people who want to move to the state and inquiring about the availability of care services. Parra tells them: “The funding situation down here in South Florida is terrible. Please prepare yourself before you make the decision. If you bring someone who has a disability, I wouldn’t recommend coming here unless you have the money to pay for private services.”

 Not all states are as difficult for families needing care as Florida and Maryland, according to AARP’s current long term care services and supports scorecard, which rates such dimensions as quality of life, quality of care, and choice of settings and providers. The 2020 list ranks states and groups them into quartiles. Florida is dead last. Maryland ranks number 13. It scored highly on affordability, access, and care transitions, but lower on other dimensions, such as choice of settings and providers, quality of life and quality of care. (It should be noted that some of these criteria have little or nothing to do with how long people wait for services.)

Washington state ranks number two on AARP’s long-term scorecard. Not only has the state enacted a program to help residents pay for long-term care, but its residents don’t typically endure long waits for care in their homes or communities. Some 65,000 of the state’s residents receive care they need in their homes or in their communities. “That’s because the state made a commitment to funding care in the community in the early 1990s,” said Bea Rector, the assistant secretary for the state’s Aging and Long-Term Support Administration. “Regardless of age or disability, the Legislature needs to find ways to appropriate money for increases in caseloads,” she added. “It creates a right to services in the community and puts pressure on the government to find a way to fund it.” She said the state has “low eligibility requirements on purpose.” The goal, Rector said, “is to keep people out of the more expensive institutional settings and at home longer.” There are, however, about 15,000 people with intellectual and developmental disabilities on another waiting list, although the legislature has just funded case management for these people.

When people in any state are fortunate enough to get services, the benefits are obvious. But making it off the waitlists and receiving benefits doesn’t signal the end of the struggle. Twenty-one-year-old Zoe Grisez, a senior at the University of Denver majoring in English and theater, lives with spinal muscular atrophy, a disease similar to ALS. She was diagnosed when she was 14 months old. “I live independently on the college campus so my mom and dad don’t have to follow me around,” she said. She accomplishes that objective with the help of Colorado’s Medicaid waiver for the elderly, blind, and disabled, which she recently transitioned to from another of the state’s waivers. The new waiver program offers more flexibility in paying her caregivers competitive wages and hours that accommodate their preferences and schedules. That also allows her to select the eight caregivers who rotate during the day in four-, eight- and 12-hour shifts. They help her with “every aspect of life — dressing, preparing food, accompanying me to classes.” She is able to use her hands and take notes, and has an accommodation from the university for longer times to take tests. Campus buildings are “not very accessible,” she said, so Grisez needs caregivers to open doors, including those to the university library where she works part time as a writing consultant. “I want to be an editor someday,” she told me. Grisez may be one of the lucky ones able to find the help she needs, although she says it’s difficult to find reliable caregivers and keep them interested in the job. “I’m constantly anxious about losing them and so I am consistently in a hiring cycle.”

Qualifying for services doesn’t mean someone will actually get them. Finding and keeping quality caregivers presents a whole additional layer of challenges. “A lot of people will be trapped in institutions and others will be forced into them because they can’t find caregivers,” said Bethany Lilly, senior director of public policy at The Arc of the United States, an advocacy group for people with developmental and intellectual disabilities. “As states continue to run out of ARPA (American Rescue Plan Act) funding, it will be a slow-moving disaster coming along,” she said. Caregivers themselves are aging. According to the 2020 report “Caregiving in the U.S.,” from the AARP and the National Alliance for Caregiving, the average age of caregivers is nearly 50, and nearly two-thirds are white, and nearly two-thirds are women. Caregivers themselves face health challenges, which affect their ability to care for others. When they don’t show up for work, their clients who depend on them to eat, bathe, dress, and get into paratransit buses suffer.

“I help people live the best life possible. It doesn’t happen without advocacy. Most everyone will need the caregivers I’m not getting right now.” — Bj Stasio, New York

Bj Stasio, a 52-year-old who was born with cerebral palsy, has needed help all his life. His disability hasn’t stopped him from working 35 hours a week for the New York State Office for People with Developmental Disabilities, where he coordinates services and advocates for residents who have cognitive and physical disabilities. “I help people live the best life possible,” he said. “It doesn’t happen without advocacy. Most everyone will need the caregivers I’m not getting right now.” Stasio himself needs total assistance. That means help with dressing, showering, and getting into paratransit vehicles. He also needs personal care attendants who help place him onto his Hoyer lift, which allows him to do things like move from a chair to his bed. The personal care attendants who are supposed to come once a day “haven’t been coming lately,” he said. “Nobody wants to work for $15 an hour. If I know someone isn’t coming, I just sleep in my chair.” Recently he stopped using personal care aides and instead relies on what he calls “my natural support” — unpaid family and friends who help him. He turned to them, he said, because he could not take the stress and drama of not knowing when and if the attendants would show up.

Joseph Macbeth, president of the National Alliance for Direct Support Professionals, told me, “Medicaid has never really addressed this in a meaningful way. Workers continue to earn poverty-level wages, and it’s a job many people won’t or can’t do.” He pointed out that the job of caregiving requires a high level of acuity and responsibility, yet across all types of services agencies paid a median hourly wage of only $13.36, adding that “very few people want to work for that low a wage and the high level of responsibility and skill that goes with it.” At a minimum, he said, the wage should be $17. Some states like New York require payment at that level for home care aides in New York City and surrounding counties, and $15.20 in other areas. Other states may pay caregivers the minimum hourly wage rate of $7.25. More than half receive some sort of public assistance, according to a report by PHI. Macbeth and others I interviewed noted that the lack of workers is nothing new. “It’s a long-term system failure to adequately fund and address the needs of the direct support workforce,” he said.

“We need a champion,” said Elena Sallitto, the Maryland attorney. While there have been dedicated advocates for people with disabilities in some states, the topic of aging has not had a national champion since Florida Rep. Claude Pepper died in 1989. No one in Congress has assumed that role. It’s been nearly 25 years since the U.S. Supreme Court decreed in the groundbreaking Olmstead decision that the unjustified segregation of people with disabilities constituted discrimination and violated the Americans with Disabilities Act, passed in 1990. That decision required states to end such segregation and required they receive services in the most integrated setting for their needs. “The whole point of the Olmstead decision was to deinstitutionalize folks and integrate them into communities of their choosing, but it hasn’t worked out that way,” said Tony DePalma, director of public policy for Disability Rights Florida. “Is it just money, or is something else wrong? Is it that we don’t have the pounding in our hearts that something has to change?”

Veteran health care journalist Trudy Lieberman is a contributing editor at the Center for Health Journalism Digital and a regular contributor to the Remaking Health Care column.