Last week, disability rights advocates were joined by caregiving professionals and policymakers at a rally in Washington, DC, to call for much-needed investment in the care infrastructure. Rally participants delivered the call to invest in care—with a focus on home and community-based services and living wages for direct care workers—at an important moment, as Congress continues to debate legislature that would provide critical funding like the Build Back Better Act and its reincarnations.
The need for reforms was also discussed at the “U.S. Care Infrastructure: From Promise to Reality” conference last month, a collaboration between IWPR, American University’s Program on Gender Analysis in Economics, and the Carework Network.
“The pandemic has laid bare the inadequate care infrastructure in our society,” explained Dr. Shengwei Sun of the National Women’s Law Center. “It lacks robust support. Unpaid family caregivers, and low-wage caregivers who are predominantly women, immigrant workers, and workers of color have been shouldering the costs and taking care of members of society in need of long-term care.”
The panel brought together experts and advocates from each stakeholder group. Jennifer Craft Morgan of Georgia State University explained that it’s important to break down silos between advocacy groups, because the stakeholders’ interests are, in fact, deeply aligned.
Home and community-based services are a big part of the fight for better care. For people whose income qualifies them for Medicaid, nursing home care is covered but home-based care is not necessarily, explained Robyn Stone at Leading Age. That’s an issue, said Bethany Lilly of The Arc, because many people prefer home and community-based care to institutional environments.
“They want to live in homes and communities. They want to age in place,” said Lilly. “We can incentivize that and reverse the institutional bias that exists in Medicaid, something the disability community really sees as a huge problem.”
Achieving this goal has a lot to do with funding. Without investments like those proposed in the Build Back Better plan, more than half a million people are on waiting lists, hoping to access home and community-based services. This isn’t just a problem for individuals with disabilities, it also impacts caregivers—groups that are not mutually exclusive. Lilly explained, “That is why all of these family caregivers feel so stressed and so strained, because they cannot access the paid services that would help them care for their family members.”
Increased care funding must also be tied to living wages for care workers, many of whom are currently paid minimum wage, as set by the Medicaid program. This encourages neither recruitment nor retention of a high-quality workforce, and it means care workers— who are disproportionately women and people of color— often struggle to make ends meet. No wonder the industry has such high turnover.
“This is where the direct care workforce and people with disabilities have exactly the same interests,” said Lilly. “We all want to make sure we have high-quality services, and we want to make sure everyone is being paid a fair wage. You see people with disabilities and service providers on the front lines together, because everybody understands this is the same fight.”
Research by Dr. Mousumi Bose of Montclair State University and Dr. Fawn Cothran of the National Alliance for Caregiving also addresses this intersection. They found that family caregivers experience serious financial and emotional strain, spending over $500 billion per year on costs associated with providing care. The lowest-income caregivers were more likely to be in need of services related to respite, physical and mental health support, home modification, and accessing services and information. Black and Latinx caregivers were more likely to have lower incomes and more likely to have extensive financial impacts than White caregivers.
It’s clear that, despite their low pay and blatant undervaluation, care workers are critical, indispensable parts of our economic and social welfare. We all share a common interest in investing in the care infrastructure for older adults and people with disabilities, especially with our aging population, to ensure quality care for ourselves, our loved ones, and our community members. That means valuing and supporting caregivers with wages and services that meet their needs. And we can’t overlook the unpaid caregivers who are often not captured in economic analysis but are nevertheless vital to a functioning social and economic system, and are in dire need of paid family and medical leave, among other supports.
