Disability — April 3, 2020 at 10:42 am

ARE WE REALLY “ALL IN THIS TOGETHER”? The disability community is being left behind in our country’s response to COVID-19


Last week, a policy statement from Henry Ford Hospital in Detroit surfaced describing how they would decide who will and will not receive life-saving treatment in their facilities as COVID-19 cases begin to overwhelm their capacity. In part, it stated that “Patients who have the best chance of getting better are our first priority.”

This seemingly innocent and rational statement struck terror into the hearts of people in the disability community. Their terror is well-founded because, when it comes to allocation of scarce medical resources, disabled people all too often are seen as part of the population who don’t qualify to receive them. Detroit Disability Power quickly issued a press release calling for more clear language that explicitly protects people with disabilities.

Disabled and chronically ill residents are outraged by the release of a confirmed Henry Ford Health System letter outlining protocol for rationing care under scarce medical resources and prioritizing “Patients who have the best chance of getting better.”

This vagueness and ambiguity are unacceptable. Such guidance does a disservice to decision making as well as human dignity. Due to a history of ableism in medicine, public policy, and American culture at large, perceived notions of ‘quality of life’ are biased and problematic, often minimizing the value of the vulnerable. We cannot let ‘quality of life’ serve as a pretext for denying treatment, especially vital treatment, to people with disabilities and chronic illness. […]

[W]e call on Henry Ford Health System, and all other local healthcare systems, to clarify their policies and we call on our City & State Government to confirm that they will not tolerate discrimination against disabled and chronically ill people as critical care is rationed during this pandemic.

If your organization would like to sign on to this letter, click HERE.

Yesterday, Detroit Disability Power and 40 other organizations followed up this statement with a letter to Gov. Gretchen Whitmer, calling on her and her administration to ensure that the rights and lives of disabled Michiganders are protected as healthcare rationing begins in our state’s hospitals and other medical care facilities saying, “[W]e ask that the Governor’s Office and the Michigan Department of Health and Human Services clarify our state’s policy for rationing care during health care emergencies and publicly confirm that discrimination in regard to health care access will not be tolerated.”

I spoke with Dessa Cosma, Executive Director of Detroit Disability Power. “Hospital systems around the country are understandably grappling with how to administer scarce resources,” she told me. “Our intent is the same as our health care practitioners — to prepare and protect. However, patchwork policies from hospital to hospital are a disservice to decision making and human dignity. Therefore, we’re asking our elected and public officials to clarify our state’s policy for rationing care during health care emergencies and to publicly confirm that discrimination in regard to health care access will not be tolerated.”

It goes without saying that people in the disability community are rightfully terrified that their lives will be seen as “less than” when hard decisions about medical care rationing are being made. It’s important that all of us step up to be their allies and help to advocate on their behalf. As Seattle Times columnist Naomi Ishisaka writes, “Coronavirus shows everyone what people with disabilities have known all along“:

It seemed to happen in the blink of an eye. Accommodations that people with disabilities had requested for years were implemented nearly overnight.

Jobs that were supposedly impossible to accommodate from home could suddenly be worked remotely. Employees who felt sick were no longer asked to prove it with a doctor’s note; they were given the benefit of the doubt and paid to stay home. Telemedicine, or the ability to get health care remotely, was quickly supported with millions of dollars from the federal government.

These changes were, of course, due to the coronavirus pandemic, which turned what were long ignored priorities for disabled and sick people into priorities for everyone. […]

In anticipation of a potential shift back to the old ways, disability rights advocates have compiled a “digital paper trail” of all the ways accommodations were made for non-disabled people during the coronavirus outbreak as proof that those accommodations can be achieved when there is a will.

In addition to physical and economic threats from the coronavirus, people with disabilities face another existential threat. Will their lives be seen as valuable if life-saving care begins to be rationed? When there aren’t enough ventilators to go around, will their lives be seen as worth saving? A complaint filed by advocates for people with disabilities last week over Washington state guidelines for potential rationing of care argued that the rules would leave people with disabilities to die.

Basas said the concern is very real. “I don’t trust doctors to value my life the same way that I do,” she said. “[When] you’re disabled, you’re not going to be ranked very high up on that list for getting that care and getting that equipment.”

You can send a letter to your Member of Congress and your U.S. Senators on this issue by clicking HERE.

You can send a letter to your state Senator and Representative by clicking HERE.

The Arc, a national group advocating on behalf of people with intellectual and developmental disabilities, is asking people to call or write to their members of Congress and ask them to pass legislation that does four things:

  • Funding for a Medicaid grant program to support access to home and community-based services (to combat institutionalization) and to support the DSP workforce. Congress should pass the Coronavirus Relief for Seniors and People with Disabilities Act.
  • Personal protective equipment (PPE) for direct support professionals. This is urgently needed to protect the health and safety of this critical workforce. Direct support professionals must be designated as essential workforce so that they have access to the PPE and medical supplies they need.
  • Paid leave for caregivers. As more people with disabilities lose their usual sources of care, family caregivers are scrambling and need access to paid leave and sick days to help their loved ones. Congress should include all family caregivers in the emergency paid leave provisions.
  • Help for people on Supplemental Security Income (SSI) to access Recovery Rebates. People with disabilities on SSI are being asked to file needless paperwork in order to access economic stimulus payments. Congress should tell Federal agencies to use their existing authority to share data and file for people on SSI.

You can take this action by clicking HERE.

CSM, a faith-based disability advocacy group out of Germany, put together this useful “Disability Inclusive Community Action – COVID-19 Matrix” for organizations to use when making decisions that will impact the disability community:

Click image for a larger version

The disability community was largely responsible for saving the Affordable Care Act when Republicans were trying to dismantle it after 2016. Now it’s time we step up for THEM during this difficult time. Wherever you are, whatever you do, please make sure you’re centering our disabled brothers and sisters because, now more than ever before, we truly are all in this together.

[CC image credit: SZERVÁC Attila | Wikimedia Commons]