When Lila Carpenter turned four, she was diagnosed with autism and other intellectual disabilities. Her doctors emphasized the importance of early intervention; her father Geoff Carpenter recalled that at that time “there was no real wait and see kind of alternative.” But Medicaid only guarantees coverage for care in nursing homes and institutions, not the local physical therapy, occupational therapy, and speech therapy that would allow Lila to reach her full potential. So the Carpenter family signed up for a waiver to receive Medicaid coverage for what are referred to as home and community based services (HCBS). HCBS provides individuals personalized care in their home or an independent community setting so they don’t have to enter into an institution. Eight years later, Lila is still on the HCBS waiting list.
The Carpenters’ experience is not an anomaly: nearly 820,000 seniors and people with disabilities across the country are on Medicaid HCBS waitlists, with an average wait time of five and a half years. These individuals are left to pay out of pocket for critical care that is generally not covered by private insurance including assistance preparing food, eating, bathing, and getting dressed. Without the HCBS waiver, the Carpenters have had to prioritize Lila’s treatments, cutting down on physical therapy to meet their budget.
This could change with the passage of President Biden’s proposed infrastructure bill. The American Jobs Plan includes $400 billion to expand Medicaid funding for HCBS for people who are currently on waiting lists. The bill would also increase wages and benefits for home care workers paid through Medicaid—predominantly women and people of color who earn an average of $16,200 annually. Despite broad popularity—72 percent of Americans support spending $450 billion to eliminate waitlists for HCBS—Republicans want to remove home and community-based care from the bill.
Republicans who oppose including home and community-based care in the American Jobs Act argue that including home care in the bill stretches the definition of infrastructure. At a May 25 press conference Senator John Barrasso, chair of the Senate Republican Conference, asserted that “Republicans are continuing to focus on things that the American people think of when we talk about infrastructure: roads, bridges, ports, airports, waterways, broadband.” Other parts of the American Jobs Act, by this logic, are not infrastructure. Tennessee Senator Marsha Blackburn clarified this view on Twitter, posting “President Biden’s proposal is about anything but infrastructure” above a graphic citing the $400 billion allocated for home care.
What makes Republicans’ arguments so absurd is that care work is just as central to the functioning of our economy as roads and bridges. Americans understand this: multiple polls indicate that a majority of Americans believe long-term care is part of the country’s infrastructure. As put by Chair of the Council of Economic Advisers Cecilia Rouse, “I can’t go to work, if I don’t have someone who’s taking care of my parents or my children.” And Republicans’ opposition to funding HCBS through the American Jobs Act could backfire; thousands of people responded to Senator Blackburn’s Tweet with negative comments, many of whom noted that alienating seniors is likely not a great political strategy.
If the intention of the infrastructure plan is to get Americans back to work and help the economy rebound from the pandemic, investing in HCBS is a guaranteed win. Research indicates that spending on social care creates twice as many jobs as spending on physical infrastructure. And as the country reopens after the pandemic, many people–especially women–have been slow to re-enter the workforce because of their caregiving responsibilities.
Expanding funding for HCBS is also a key step toward expanding rights for people with disabilities and ending the Medicaid system’s preference for services that are provided in institutional settings. Currently, states receiving Medicaid dollars are required to fund services provided in institutions like nursing homes or assisted living facilities, but not required to fund services that allow people to live with autonomy in their homes and communities. Many individuals in institutional settings do not require a high level of care and would be better served at home due to a lack of programming options–not to mention the disproportionate number of COVID-19 cases and deaths in nursing facilities. Tina Tanner, who lives independently with HCBS support, expressed pride in her ability to live on her own, and frustration that HCBS is not available to others: “it’s something that proved to myself that I can do it and then prove to other people. […] Why can’t these other people that have disabilities do the same thing that she could do?”
Including care work in the infrastructure bill also helps avert future crises. Home care is one of the fastest growing occupations in the country, reflecting both demographic and consumer trends. One in five Americans will be of retirement age by 2030 and the number of individuals who require long-term care services is expected to grow to 27 million by 2050. Older adults increasingly hope to age at home as opposed to entering a nursing home, further driving demand for HCBS. But because home care workers receive poor pay and benefits, the industry is plagued by high turnover rates and a lack of applicants. We should not wait to improve HCBS, just as we wouldn’t wait to replace a bridge until it collapses.
Eliminating Medicaid waitlists and improving pay and benefits for home care workers would dramatically improve the lives of both individuals who need care and their caregivers. Research indicates that better wages and benefits for home care workers would not only improve workers’ financial security and decrease turnover but also increase the quality of care provided. It will allow people with health or functional needs to live with dignity in their communities and ensure those caring for them can do the same. For the Carpenters, “the difference it would make in our lives would be immediate in terms of our ability to care for our child, both the services that she needs and giving her greater access to the community.” If only the Republicans would quit quibbling over semantics.