April 29, 2020; Chicago Tribune and the Huffington Post

In the wake of the wave of deaths in long-term care facilities around the country, we must consider not only the fate of the elderly, but of the people with disabilities who have been forced into situations where their freedoms have been taken due to a lack of public funding for community supports. This and other exclusionary pre-existing conditions have created a need for the centering of the rights and needs of people with disabilities in any community-wide response to crisis.

About 25 percent of US adults, or 61 million people, live with a disability. People with disabilities are extra vulnerable to the virus for a lot of reasons, but a main one is how difficult it can be to practically distance oneself. People who rely on others for basic needs, or who find it difficult to navigate public spaces like grocery stores, can’t isolate themselves.

The disabilities advocacy community is on the case, but this is the kind of situation, as with disaster preparedness, that could have used a little systematic forethought and an all-in plan of action—which, of course, has not been the case here.

“I’m very reliant on family, and fortunately they have training,” says Bryan Dooley, 29. Dooley has cerebral palsy and uses a wheelchair; he is a member of the North Carolina Council on Developmental Disabilities and on Disability Rights North Carolina’s board of directors.

“Not all people have that,” he said. “It’s a very tough situation.”

NPR’s Mikaela Lefrak explains that people who are deaf or hard of hearing face extra complications in a world where everyone wears masks. Some people use lip reading and facial expressions to communicate; others work with interpreters, who sometimes aren’t allowed into medical facilities.

“In-person interpreters are better for clear communications, but I would rather not put the interpreter at risk of COVID-19,” said Robb Dooling, a federal employee in Washington, DC, who is deaf and advocates for people with disabilities.

Respect Ability, a disability advocacy organization, issued a press release explaining what the CARES Act did and did not do for people with disabilities. For instance, the bill provides $955 million for Aging and Disability Services Programs under the mandate of the Administrative on Community Living (ACL). However, it does not address one of the community’s major coronavirus concerns, which is their extreme vulnerability to “medical rationing.”

The release states, “Further advocacy is needed to cover these gaps in coverage and ensure that family members who need to take leave in order to meet the critical needs of their loved ones are covered.”

Other groups have taken issue with action (or lack of action) at the state level. Disability Rights Connecticut challenged the weak, apathetic language issued by the Department of Developmental Services. They called the department’s language, which asks hospitals to allow support personnel to accompany a person with disabilities to hospital, an “inadequate half-step in the right direction” that “guarantees no real protection.”

Several Democratic senators—including, of course, Elizabeth Warren (D-MA)—have heard this call and begun to urge Congress to prioritize the needs of this community. On Wednesday, they sent a letter to the leaders of both parties in both houses, urging greater care and more resources.

“This unprecedented public health emergency has exposed the pre-existing scarcity of medical treatment, equipment, and other resources available to the disability community,” they wrote. “It is essential that Congress use this upcoming package as an opportunity to mitigate these disparities.”

They called upon Congress to boost Medicaid funding, support home care services, protect civil rights, expand paid leave, and provide emergency income relief, and ensure access to food, medicine, and PPE for people with disabilities.

People aren’t counting on that coming fast, though. Betsy MacMichael, executive director of a nonprofit that aids people with developmental disabilities, says, “There’s a wide range of experience I’m hearing about,” MacMichael said. “What I’ve been recommending to people who ask me is, ‘It will be great if there’s guidance, but make your own plan.’”—Erin Rubin

The original article ran in the Nonprofit Quarterly (NPO) on 5/1/20.