The Reconciliation Bill is a Disability Justice Issue
By Matthew Cortland
When the coronavirus pandemic began to ravage long-term care institutions across the country, we didn’t just lose our elders: even now, a little over a quarter of a million disabled people, all aged 18-64, are in nursing facilities. This estimate doesn’t take into account disabled and medically complex children who live in nursing homes — nor does it account for people confined to psychiatric facilities, jails, and other congregate settings because of their disabilities. These are incredibly dangerous places; more than 138,000 people in nursing homes have been killed by the coronavirus. These deaths have been underreported, if not outright hidden from the public.
This isn’t just a policy failure. It’s a violation of our rights. But while it is true that these deaths are partially to blame on the Trump administration’s deregulation of the nursing home industry, the problem existed long before then. In 1990, Justice Ruth Bader Ginsburg ruled in Olmstead v. LC that disabled people have the right to receive support and services in our own homes, rather than only in facilities. Yet disabled people still end up institutionalized at disproportionate rates — often without their consent.
The time to rectify this is now — and voters agree.
In new Data for Progress polling of people who self-identify as disabled, 89 percent indicate they would prefer to receive support and services at home compared to a nursing home or other long-term care facility. Notably, every demographic supports this provision by at least 80 percentage points, indicating overwhelming support for home and community based services (HCBS).
But at present, access to HCBS is limited. Across the country, more than 800,000 people in need of home care languish on waitlists, including more than 25,000 children in Texas.
During the general election, President Biden promised to clear those waitlists. His Build Back Better reconciliation framework included provisions for substantial investments in HCBS — and previous Data for Progress polling shows that those investments constitute the most popular provision of the bill. Care investments were popular then, and they’re popular now; it’s exceedingly clear that passing them would be good politics for a party facing a steep uphill battle in the 2022 midterms, as well as a party leader facing sinking approval ratings.
Beyond that, investment in HCBS is simply the right thing to do. The pandemic has exposed inequities across race, class, gender, and disability. And those at the intersection of multiple marginalized identities have borne a disproportionate load of this pandemic.
Disabled Americans were neglected long before the coronavirus pandemic — and that has to change. Disabled children should not be separated from their parents and forced to live out their lives in a nursing home. A married couple of 50 years shouldn’t be separated because there isn’t enough home care funding. People with disabilities shouldn’t be institutionalized for lack of access to services at home.
Disability activism has long embraced the rallying cry, “nothing about us without us.” Its meaning is simple: policymakers cannot pass legislation that affects people with disabilities without having us at the table. And following the 2020 election, President Biden has a mandate — and a duty — to deliver on our agenda. Biden was narrowly elected on a platform that promised investments in life-saving home and community based services and policy that guarantees the rights of disabled Americans. Now, it’s time for him, and Congressional Democrats, to deliver. Biden’s legacy depends on it — and so do the electoral prospects of his party.