This summer, as the pandemic raged and the Americans With Disabilities Act marked its 30th anniversary, one thing became clear: As with many civil rights-related efforts, reality often falls short of a law’s promise. In this case, the coronavirus pandemic has exposed the fragility of health care rights for people with disabilities—even with the ADA in place.
The issue is twofold. While the ADA assures people with disabilities equitable physical access to health care facilities, it does not assure “health equity” as defined by the U.S. Centers for Disease Control and Prevention: the opportunity for all to attain their full health potential regardless of socially determined circumstances.
So while Congress passed the nearly $2 trillion Coronavirus Aid, Relief and Economic Security (CARES) Act in late March—an estimable effort that did much to protect the vulnerable populations that include Americans with disabilities — it has only gone so far to alleviate health care issues for people with disabilities. The next iteration of CARES that Congress is in the process of structuring will likely have the same flaws.
A recap of the basic health care issues that have had negative impacts on people with disabilities during the pandemic illustrates these issues—and shows how legislation must do better not only now, but also in the future. That’s because repeats of this situation, which are devastating to people with disabilities, are very likely. “Infectious diseases have been emerging more quickly than ever before,” Illinois Medical District CEO Suzet McKinney noted.
Due to COVID 19, Patients With Disabilities Face Significant Health Care Discrimination
Although Americans with disabilities are uniquely and profoundly affected by the disease, they “are largely left out of the U.S. coronavirus response,” Johns Hopkins epidemiologist Bonnielin Swenor pointed out. For example, people living with disabilities may struggle with basic public health strategies such as frequent handwashing and social distancing. Or communication can be a barrier for people with vision, hearing and cognitive disabilities. Yet the ADA speaks to all of these issues.
Finding reliable and safe in-home care providers has been difficult thanks to the pandemic. Disability service providers have closed thanks to financial considerations, according to the American Network of Community Options and Resources (ANCOR). The group’s national survey of 191 organizations serving people with intellectual and development disabilities found 77 percent shut down or discontinued programs due to pandemic-related challenges, and 16 percent indicated they don’t expect to reopen — a trend that is likely to continue without additional federal support.
Equitable access to basic health care has also been worsened by COVID-19, to devastating effect. Simply getting drive-up coronavirus tests is fraught for those dependent on state or municipal mobility services. Scarcity raises barriers to the just allocation of medical resources. Doctors have been faced with the unsettling prospect of denying or even taking patients off the limited number of ventilators. Going forward, they must make sure people with disabilities are not left behind by plans for the COVID-19 vaccine rollout.
Health Care Formulas Hurt People with Disabilities
Rather than offering triage protocols to assure sound case-by-case judgments, many crisis policies broadly restrict care based on age or life expectancy; general health and physical ability; or medical conditions requiring daily assistance. But in practice, these formulas put patients with disabilities at a disadvantage. Alabama, Pennsylvania, Tennessee and most recently Utah have settled civil rights complaints with the U.S. Department of Health & Human Services over COVID-19 care policies based on disability, life expectancy or “quality of life.”
More disturbingly, such rules may guide future responses not only to epidemics but all types of emergencies. In Massachusetts, medical practitioners took issue recently with these “crisis standards of care” and their advocacy efforts led to fairer standards.
How to Do Better?
While the ADA made meaningful strides in creating a more equitable and inclusive society for people with disabilities, legislators must recognize that true equity and inclusion will not be achieved without commitment to leveling the playing field for people with disabilities. Complicating matters, COVID-19 may diminish health care capacity. “There will be many hospitals that won’t survive Covid-19, and that means the ones that remain will have to reimagine how they provide care…to vulnerable communities,” McKinney explained.
In the short term, Congress should not let the Sept. 30 deadline to avert a government shutdown and the battle over the Supreme Court vacancy shift their focus from another much-needed relief package. They should heed Speaker Nancy Pelosi (D-Calif.) and “spend the appropriate amount of money to meet the needs of the American people.” More than one in four Americans are living with disability today and a generous coronavirus relief package may allow disability service providers to keep their doors open.
In the long-term, we all need to follow the lead of the Massachusetts medical practitioners who pushed back against crisis care standards — and the kind of health care equity that is not covered by ADA. All lives have equal worth. Marginalizing people based on their age, disabilities and/or managed medical conditions strips them of dignity.
Angela Williams is president and CEO of Easterseals, a leading provider of services for people with disabilities, veterans and seniors.