Mark Lennihan/AP Photo
Dolores McGinnis, left, and Stacy Munoz-Laporte help Josephine Melecio celebrate her 110th birthday, March 26, 2021, in New York. McGinnis and Munoz-Laporte are nurse care managers with RiverSpring Health, a long-term care program that helps the elderly live independently at home.
Last week, President Joe Biden more than made good on his promises to the disability community. While rolling out the first half of his massive infrastructure plan in Pittsburgh, Biden devoted a full fifth of the plan, $400 billion, to home and community-based services (HCBS) for disabled people and seniors. This is a system that has been starved for years. It is a fantastic amount, according to every disability advocate I spoke with about the issue.
Nicole Jorwic is senior director of public policy at The Arc of the United States, a major intellectual and developmental disability nonprofit. “I keep having to pinch myself,” she told me, a smile evident in her voice. Said Julia Bascom, executive director of the Autistic Self Advocacy Network: “We are shocked and thrilled.”
Long-term care in the United States has been brutally underfunded for decades, and this is especially true for anyone receiving care at home. Though most long-term care for elderly and disabled people is funded by Medicaid, for those not experiencing poverty, the cost can be staggering and unattainable. And the accommodations are less than desirable. According to a 2019 poll by the Nationwide Retirement Institute, most Americans would rather die than live in a nursing home. That poll was taken before COVID-19 swept through. In at least one instance, corpses literally piled up.
Currently, the federal government and states are required to fund care in nursing homes. But there is no formal requirement for states to fund home care. At this point, every state offers some degree of publicly funded home care, thanks to a complicated series of incentive programs. However, that care can and often is drastically limited. People sit on waiting lists for years, hoping to get care and support they need to live in their own homes. This can include skilled nursing, but also things as basic as help showering or getting dressed in the morning. Additionally, wages for home care workers are extremely low—average compensation is $12.08 per hour—and there simply hasn’t been the political will in Washington to raise them. Treating disabled people and workers with dignity is expensive.
How expensive would mandatory funding for home care be? According to the Kaiser Family Foundation, the federal government spent $71 billion on home and community-based services in 2018. How much would it cost to clear out the existing waiting lists to access HCBS services? In late 2017, the Congressional Budget Office unofficially told Senate staff and disability advocates that it would take $150 billion to clear out the existing wait list in every state, according to a source close to the issue. A more official number is currently being calculated, but $400 billion is still astonishing.
President Trump and Sen. McConnell’s relief bills contained no funding for HCBS, leaving the system on the brink of collapse. The most recent relief bill, the American Rescue Plan, contains $12 billion for HCBS, and advocates weren’t even certain the money would be in there until late in the process. Historically, home care and disability services in general simply haven’t been a priority, under Democrats and Republicans. Under President Joe Biden, that appears to have changed, as $400 billion is more than any of the advocates I spoke to had hoped for or expected.
It isn’t entirely clear how the $400 billion will be allocated yet; that’s going to get hashed out by Congress. The White House fact sheet for the infrastructure bill specifically mentions renewing Money Follows the Person, a deinstitutionalization program that, despite massive success, must be renewed every three years and was even allowed to lapse in 2016. Renewal of Money Follows the Person was one of President Biden’s campaign promises, and he seems poised to make good on it.
The White House fact sheet also promises well-paid, unionized caregiver jobs, a major boost over the current, miserably low wages. The relationship between disability and labor hasn’t always been amicable; some unions still fight for institutionalization and abrogation of disabled people’s basic civil and human rights. To be entirely fair, institutions pay workers better than in-home care. In the past few years, however, SEIU and some other big unions have come around on home care, opting to accept deinstitutionalization and organize home care workers instead. Union advocacy seems like it may accomplish what disability advocates have fruitlessly attempted for years. Here, labor and disability interests align perfectly: Comfortable, well-compensated home health aides provide higher-quality care.
Republicans have balked at the idea that infrastructure encompasses caregiving. “We’re up against a gender and racial bias that this work is not worth as much as the rubber, steel and auto work of the past century,” Mary Kay Henry, president of SEIU, told The Washington Post. “The key job right now is we have to in the public imagination and in the congressional debate widen the lens, so that people understand that investment in caregiving is an investment in infrastructure.”
Fortunately, it seems that the White House is willing to stick to its guns. Heather Boushey, a member of the White House Council of Economic Advisers, described HCBS as “an absolutely critical piece of the package” during an interview with Jeff Stein.
Disability advocates have hoped, since the election, to make progress instead of constantly playing defense, as they did during the Trump administration. In March, a discussion draft of a bill called the HCBS Access Act begun making the rounds in disability advocacy circles, seeking stakeholder input. The bill would achieve what advocates have wanted for years by making HCBS funding mandatory, and creating standards and minimums for what home disability services states offer. This would radically improve the quality of and access to disability services in the United States.
Now, there’s buzz that the same goals might be better achieved through the infrastructure bill. After all, there is a lot you can do with $400 billion.
