By Clayton Jones, LCDR, CHC, USN, Kevin Mintz, PhD, Andrew Peterson, PhD
America is winning the battle against COVID-19. As of mid-June, over 50% of Americans have received at least one COVID-19 vaccine, and pandemic-related deaths are on the decline. But with this breath of optimism comes time to reflect on the Americans we failed, and time to focus on improving our infrastructure to prevent future disasters.
For Americans with disabilities, President Biden’s infrastructure proposal, with its focus on care services, is a necessary step in this direction. But Republicans and moderate Democrats are resistant, even though the proposal has bipartisan support among the majority of Americans. COVID-19 proved that better infrastructure for Americans with disabilities is not just good policy, but a moral responsibility. Lawmakers must now summon the political courage so that America’s care infrastructure is not negotiated away.
Americans with disabilities, particularly people living in long-term care facilities, have borne a disproportionate burden of the pandemic. The COVID Tracking Project estimates that long-term care residents make up 34% of pandemic-related deaths in America. This percentage is all the more shocking when we consider that less than 1% of the total U.S. population lives in long-term care. Families who brought loved ones home, rather than leaving them in COVID-19 lockdowns, also experienced losses. As they settled into informal caregiving roles, families suffered increased stress, uncertainty, and even unemployment.
While the pandemic has resulted in tragic losses, it might also be the impetus for a much-needed shift in the way we think about caregiving.
Sadly, problems with our care infrastructure existed long before the pandemic. For decades, disability advocates have argued that long-term care delivery should move away from institutional settings, like nursing and group homes, and toward community-based services. Densely populated institutional settings are not only poor environments for public health emergencies, but are also segregated locations that provide suboptimal, “one-size-fits-all” care that does not address the individual needs of people with different abilities, nor their families.
While the pandemic has resulted in tragic losses, it might also be the impetus for a much-needed shift in the way we think about caregiving. President Biden’s sweeping infrastructure plan—a plan that not only supports roads and bridges, but also care infrastructure for the most vulnerable Americans—could realize positive and necessary legislative reform for the disability community.
Key to Biden’s proposal is expanded access to home and community-based services through the “Money Follows the Person” program. Long-term care residents often prefer community-based service options, and a bipartisan majority favors increased support to allow Americans to age at home. An additional benefit of Biden’s policies is the emphasis on improved working conditions for professional caregivers. Caregiving is challenging, and professionals are often underpaid and overworked. Biden’s infrastructure plan alleviates these burdens by increasing wages, offering paid sick leave, and overtime. Improved working conditions are a win-win for caregivers and the people they care for. It recognizes caregivers as the skilled professionals they are, making it more likely that Americans receive at-home care they need and deserve.
Opponents of Biden’s infrastructure proposal wring their hands over how to pay for it and the definition of “infrastructure.” For them, infrastructure means roads and bridges, not supporting vulnerable Americans. But even though the Biden administration has made concessions, those wary of the infrastructure plan keep shifting their priorities, showing they are bargaining in bad faith. Lawmakers are now suggesting that a bill should focus on “hard” infrastructure, effectively jettisoning provisions for home care, and showing that the wellbeing of Americans with disabilities is not a legislative priority. This is as wrong as it is shameful.
Investment in America’s total infrastructure, beyond roads and bridges, is what our country needs… Infrastructure allows Americans to do their jobs well, to contribute to the economy, to be prosperous, and to have peace of mind.
Investment in America’s total infrastructure, beyond roads and bridges, is what our country needs. Infrastructure makes our country work; it’s not just about getting people from point A to point B. Infrastructure allows Americans to do their jobs well, to contribute to the economy, to be prosperous, and to have peace of mind. For Americans with disabilities and their families, sustainable and quality caregiving is just as important as roads and bridges. Roads and bridges make America work, but so does our caregiving infrastructure. It’s worth the investment.
The pandemic has exposed structural fissures in inequity, with older adults, the disability community, and other historically marginalized populations suffering more than the rest. Americans with disabilities deserve better, as do all Americans. Biden’s infrastructure plan can repair the holes in America’s safety net exposed by the pandemic. It’s time for lawmakers to act, with or without the help of opponents.
Note: LCDR Jones is writing on his own behalf. The thoughts and opinions expressed are his own and not necessarily those of the U.S. Government, Department of Defense, the U.S. Navy or the Navy Chaplain Corps.