Posted in coronavirus

Rationing Away Our Health Care

Joseph Shapiro


“I’ll take all night if I have to!” So shouted 8-year-old Jennifer Keelan on March 13, 1990, as she hoisted herself up the 83 steps of the US Capitol. It was an exhausting journey on her hands and knees, but her muscular dystrophy (and the lack of a ramp) gave her no choice.

She was joined that day by dozens of other people with disabilities. In the famous Capitol Crawl, they made their point better than any speech or written report could have done: For them to have equal access to society, Congress must pass the Americans with Disabilities Act (ADA).

And pass it they did on July 26, 1990. Although the ADA has had a rocky journey and is still challenged on many sides, it has opened up huge opportunities to people who  – literally and figuratively – had previously been unable to access a society that had been built without them in mind.

We need the ADA now, more than ever. In this era of Covid-19, there is a real concern that people with disabilities might be victimized in a different way. Over the last few months, we have learned that the pandemic is much more deadly for older people and those who already have underlying medical conditions. That’s why residents in nursing homes have been hit so badly. And it is obvious that our health care system is not equipped to handle the torrent of critically ill people streaming into hospitals and clinics.

“It’s a moment that people with disabilities have long feared: there’s a shortage of life-saving equipment, like ventilators, and doctors say they may be forced to decide who lives and who dies,” says Joseph P. Shapiro, News Investigations correspondent for National Public Radio.

“People with disabilities worry those judgments will reflect a prejudice that their lives hold less value,” writes Shapiro. “And these are often not just baseless fears – they can be based on their own harsh experiences in the medical system before the pandemic.”

As an example, Shapiro points to the case of Lex Frieden, a research scientist and professor at the University of Texas in Austin. He also headed the agency that wrote the first draft of the ADA.

“But none of that helped Frieden when he went into the emergency room,” says Shapiro. Frieden had become a quadriplegic as a result of a car accident in 1967, and another accident in 2006 crushed his hip. But when the emergency room physician saw that Frieden could not walk, he said, “Well, we’re not going to repair the hip, then.” The result was that Frieden had to start putting more weight on his other hip, which has led to pain and the need to limit the number of hours he spends in his wheelchair.

A few months after his treatment, Frieden returned to the hospital and was able to get that policy changed. But he is surely not alone. There may be thousands of people with disabilities where doctors have refrained from performing standard procedures, based upon incorrect assumptions about the quality of their lives and how the scarce resources might be better used. These assumptions and the resulting stereotypes are just the kind of things the ADA and other anti-discrimination laws were designed to prevent.

As a result, disability advocacy groups are doing what they did back in 1990 – they are taking action. In the past several weeks, complaints have been filed in Alabama, Connecticut, Kansas, New York, North Carolina, Pennsylvania, Tennessee, Utah and Washington state, alleging that medical decisions are being made in a discriminatory manner.

These complaints were filed with the U.S Department of Health and Human Services (HHS). HHS says it is investigating these complaints and has recently issued the following statement:

“[P]ersons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities…Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

This sets a hopeful tone – we’ll see how it plays out. This statement, as well as other information about health care during the pandemic, appears on the NMSS website:

We do not know how badly or for how long this pandemic will overtake our world. But Mr. Shapiro is to be thanked for again helping us understand how in times of crisis, it is often the most vulnerable who pay the highest price.


Mr. Shapiro is also the author of the award-winning book, No Pity: People with Disabilities Forging a New Civil Rights Movement.





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