For the first few weeks of the shelter at home order, my social media newsfeed was filled with comments, re-shared Tweets, and even some news articles expressing the sentiment that “there’s no need for all this panic — the virus is only killing the elderly and disabled.” To this day, almost ten weeks into the crisis here in the United States, some of my acquaintances remain indifferent to the threat of the coronavirus because, like the flu, the people at greatest risk of harm are senior citizens, people with disabilities, and people with chronic illness and/or compromised immune systems. Because they are young and healthy, they feel invincible. And although this virus has wreaked havoc on communities across America, including among the young and healthy, there is one area in which able-bodied young adults have a reason to feel confident: there’s a pretty good chance that if health care starts getting rationed, they’ll be at the top of the priority list. 

My daughter Leah will not. 

Leah was born two months early with Down syndrome, long-gap esophageal atresia (meaning she was missing much of her esophagus), holes in her heart and diaphragm, and underdeveloped lungs. At seven years old, she continues to deal with chronic lung disease and increased susceptibility to pneumonia, and she will rely on a feeding tube for nutrition for the rest of her life. She is, without question, the happiest — and most stubborn and sassy — child I know. She loves Daniel Tiger and Elmo, insists on playing her little guitar while watching Coco, loves to play with her friends, and is learning to read. And yet, many people — including doctors and health care policy makers — view her life as less worthwhile in objective terms, at least partially because our country values human life based on potential economic output. 

As the pandemic progresses, many states have been reviving or developing plans for rationing life-saving treatment if intensive care units become overwhelmed. People with disabilities do not fare well under many of these plans. According to a recent article in The Atlantic, “Alabama’s Emergency Operations Plan. . . . says that ‘persons with severe mental retardation’ are among those who ‘may be poor candidates’ for lifesaving care if there is a shortage of supplies like ventilators. The Kansas and Tennessee emergency guidelines suggest that people with ‘advanced neuromuscular disease’ might be excluded from receiving critical care. Washington’s guidelines include considerations about a patient’s ‘baseline functional status,’ which involves factors such as physical ability and cognition.” According to a recent piece by NPR, “New York's plan says that a person who shows up at a hospital with their personal home ventilator could have it taken from them and given to someone else.” Imagine having to decide whether seeking health care is worth the risk that the doctors might decide someone else needs your lungs more than you do. That’s essentially what the New York plan would do to individuals who rely on a home ventilator on a daily basis. 

In California, disability rights activists began calling for direction from the state almost immediately after shelter-in-place orders were imposed. Andrew Imparato, executive director of Disability Rights California, wrote to Governor Newsom and laid out 25 steps the governor could take to protect Californians with disabilities. Imparato urged the governor to issue a directive to all medical care providers “prohibiting discrimination against people with disabilities in offering COVID-19 treatment via rationing of care or treating the lives of people with disabilities, the elderly, and the poor as of less value than others, and prohibiting the unnecessary placement of people with disabilities in nursing facilities and other institutions.” Shortly thereafter, Disability Rights California published an open letter to all California lawmakers and medical providers. Regarding policies that favor younger, healthier people in medical rationing, DRC wrote, “This is illegal disability discrimination, plain and simple, based on the biased assumption that seniors and people with disabilities have less value and experience a lower quality of life. . . . People who need life-saving care should not get it based on an assessment of whether they are worth saving. This means that care should be allocated based on an individualized assessment of urgent need and whether the patient will benefit, not whether they have a lower likelihood of survival or may require longer or more intense treatment.”

On March 30, the California Department of Health Care Services, Department of Public Health, and Department of Managed Health Care put out a joint bulletin reminding health care providers and payers that “rationing care based on a person’s disability status is impermissible and unlawful under both federal and state law.” And although the U.S. Department of Health and Human Services (HHS) has similarly responded to anticipatory legal complaints from disability advocacy groups like DRC by issuing guidance that “hospitals cannot ration treatment based on disability status,” disability rights activists argue that this isn’t enough to prevent discrimination from happening on the ground. The reality is that doctors and other decision-makers may have implicit bias regarding disabled people's quality of life, and such bias can impact decisions in the moment. In the HHS guidelines, NPR reported, HHS Civil Rights Office director Roger Severino wrote, “We're concerned that crisis standards of care may start relying on value judgments as to the relative worth of one human being versus another, based on the presence or absence of disability. . . . We're concerned that stereotypes about what life is like living with a disability can be improperly used to exclude people from needed care.” Along similar lines, attorney Daniel Florio, who has muscular dystrophy, explained to The Atlantic, “People overwhelmingly believe that being disabled implies a worse quality of life than it does.” When doctors and decision-makers act on these implicit biases, Florio said, “what that means in practical terms is that people like us will die.”

It certainly makes sense for state plans to consider best practices for triaging critical cases in a pandemic, and these decisions are never easy. A recent New Yorker article laid out the complexities of trying to create a system for triage in a medical disaster. How should resources be allocated — by hospital size and existing resources? By lottery? What kind of lottery? And not every virus can be anticipated. New York’s original plans suggest moving ventilators from one patient to the next after 120 hours without recovery, but some coronavirus patients need more time than that to recover. It seems like a catch-22. In the absence of consistent statewide guidance and policy, the decision-making falls wholly on the people on the front lines, which puts doctors and other health care workers in a difficult position, and also leaves more room for individual biases to play out. But at the same time, health care workers are on the front lines, and the people making statewide policy decisions are thinking in numbers rather than individual lives. So how should these decisions be made?

Matt Wynia, director of the Center for Bioethics and Humanities at the University of Colorado at Anschutz, told The Atlantic that in catastrophic circumstances, doctors should try to save as many lives as possible, but they should do it in a way that preserves people’s confidence in institutions and doesn’t value the lives of certain citizens over others. So when the time to triage comes, Wynia says, medical professionals should not consider a patient’s disability status, but give preference based on whether and to what extent treatment would help them. “If you have Down syndrome, I don’t see why that should matter, unless your Down syndrome comes with a lung condition that makes you less likely to benefit from treatment,” he says.

As the parent of a child with both Down syndrome and a chronic lung condition, that quote was a gut punch. Most of the articles I’ve read, even those that argue against discrimination based on intellectual functioning, do leave room for decisions to be made based on underlying health issues. In a recent Disability Voices United webinar, Dr. Alicia Bazzano of the Special Olympics shared that individuals who have intellectual disability and developmental disability are more prone to pneumonia, partially due to comorbid conditions involving low muscle tone, scoliosis, underdeveloped airways, etc., and partially due to poor access to health care. I worry that the link between ID/DD and susceptibility to pneumonia leaves room for discrimination against people with ID under the guise of concerns about lung function. 

Shira Wakschlag, the legal director at The Arc, an advocacy organization for people with intellectual disabilities, points out that disability-rights laws, such as the Americans with Disabilities Act, are “all about individual determination. . . . A diagnosis is not the whole picture.” Disability rights advocates argue that “states should indicate that they will not include diagnostic categories at all — not for intellectual and physical disabilities, and also not for diseases, such as COPD, that may make someone more vulnerable to the virus, but are also very treatable.” Indeed, many folks with chronic underlying conditions have already fought and won countless battles against illness, infection, and structural anomalies. Who is to say that my child, who has overcome more in her seven years than most adults do in their entire lifetime, doesn’t deserve as much of a fighting chance as any other child? I say she deserves to fight, and she deserves for us to fight for her. 

Love That Max blogger Ellen Seidman recently interviewed Marcie Roth, the executive director and CEO of the World Institute on Disability. Here are Roth’s recommendations to parents who find their children with disabilities facing discrimination in a health care setting:

  • If you believe your child is being discriminated against or denied medical care because of their disability, file a complaint with the Office of Civil Rights here. You can also email the office at OCRMail@hhs.gov or call 1-800-368-1019.
  • Find your local Center for Independent Living (you might want to look this up now). These centers perform a variety of functions, including referrals and information. It's worth a call now to ask if yours would be able to provide assistance in case of an emergency. 
  • Contact your state's protection and advocacy agency, which provides legal advocacy services for people with disabilities. (Look it up here.)
  • You could also call the Disaster Hotline of the Partnership for Inclusive Disaster Strategies, whose mission is to achieve equal access to emergency programs before, during, and after disasters for people with disabilities. The number is 1-800-626-4959.
  • Ask a few friends if they would help advocate for your child should the need arise. Friends will always be there for you, of course, but it's good to make the ask now.

You can also print out and keep on hand this “Know Your Rights” card published by Disability Rights California and the Disability Rights Education and Defense Fund. 

 

Lisa Concoff Kronbeck

Government Benefits Specialist

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