COVID-19 is here. This pandemic has spread to every corner of the United States. This is just the beginning.

The gravity of this crisis is still sinking in, when it’s over we will either be someone or know someone who has gotten sick.

This is a particularly terrifying time for individuals with disabilities and their families. Ableism in the medical community is rampant. Implicit bias toward disability is everywhere, but now, with the choices doctors are facing, it creates life or death circumstances.

A virtual conference with the American Association of People with Disabilities (AAPD) this week outlined what we are facing. Here are the major takeaways from that call which the Center for Family Involvement (CFI) participated in.



  • Deprioritizing ventilator access to people with disabilities
  • Deprioritizing treatment to people with disabilities
  • Deprioritizing care for people with disabilities

Here are some things that are already happening:

  • Policies have been written that are clearly bias – looking at “quality of life” of patients when deciding who to treat, which is completely objective.
  • Triage plans have been created that state ventilators not be offered to people with “moderate to severe mental retardation” or diminished cognitive ability
  • Policies written that reallocate ventilators used at home to help people breathe
  • Directives that deprioritize critical care for people with disabilities during the pandemic
  • Policies are blatantly going against disability rights laws already in existence
  • Individuals are already reporting discrimination. One man with cystic fibrosis was told if he was hospitalized during this outbreak, he would not get a ventilator. Some families have told the CFI they are not getting the medial supplies they need at home because pharmacies are reporting COVID shortages.


It was noted that medical professionals are facing impossible choices. Hospitals are overwhelmed with bed shortages, protective gear shortages, staffing shortages.

When deciding who gets care, who gets a bed, who gets a ventilator – doctors often look to quality of life. But that is an ambiguous measurement. The public often assumes there is an objective way to measure quality of life, but there is not. You have to ask the person. Even then it’s problematic because it’s based on non-disabled norms.

Looking at a chart to decide who gets care is a complete guess; it means that younger, healthy, non-disabled patients will get prioritized care every time. Studies show time and time again that beliefs and bias cloud quality of life judgement. The majority of people with disabilities love their lives.

Who do we believe? The person themself or the person judging who has been taught that the quality of life for people with disabilities is less than?


The Department of Health and Human Services’ (HHS) Office of Civil Rights has issued a bulletin stating that:

  • Persons 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.
  • In this time of emergency, the laudable goal of providing care quickly and efficiently must be guided by the fundamental principles of fairness, equality, and compassion that animate our civil rights laws. This is particularly true with respect to the treatment of persons with disabilities during medical emergencies as they possess the same dignity and worth as everyone else.
  • “HHS is committed to leaving no one behind during and emergency… Persons with disabilities, with limited English skills, or needing religious accommodations should not be put at the end of the line for health care services during emergencies. Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism,” said Roger Severino, Director of the Office of Civil Rights at HHS.

In response to these guidelines, hospitals are getting legal guidance on how to circumvent lawsuits that come about because they plan to not follow them.


Panelists broke down what we need to do right now, as the crisis unfolds.

  • Write on your body if you’re going to the hospital: If you are an individual with a disability who needs help communicating – literally write on your body. Put an advocates phone number. Put necessary information. Also write, “I know my rights.” “My life is worth living.”
  • Demand reasonable accommodations and modifications: interpreter, effective communication with medical professionals, peer support, the need to consider that you might need a ventilator a few days longer but you can fully recover with the right care.
  • Individual assessments: Review each patient, not just a single diagnosis. We need to stress that disability is a factor, a single diagnosis does not define the person. If you look at the whole person, you will see they might recover and thrive if they receive treatment.
  • Demand policies are made public: We need to know what hospital’s policies are so we can react accordingly. This information is not always easy to find. And right now it could be changing.
  • Collect data: Urge hospitals to collect data. What is happening with triage, rationing, and who is getting ventilators. We want to assess how critical care and disability work. We want to understand WHY people are dying. Did they get treatment?
  • Avoid getting sick: The best thing to do now is keep individuals out of hospitals and avoid these triage situations. Many people cannot avoid contact with personal care attendants or nurses. We need to get the home health care workers proper protective gear so individuals with disabilities are safe.
  • One legal expert pointed out that when we decided to underinvest our stockpiles, this had an affect on people with disabilities. But this is NOT a justification for allowing them to be the ones that die.
  • Demand the review of a decision not to treat someone with life-saving interventions.
  • People with disabilities need to be on triage teams where policies are being set.


These issues have always existed. They are magnified now because of the magnitude of this crisis. Panelists went over what we must prioritize when this is over to ensure these kind of inequities in medical treatment never happen again.

  • People with disabilities need on the teams creating hospital policies.
  • We need to have guardrails against people who believe they are free of bias.
  • When stockpiling after this crisis, we must take into account the needs and impact of people with disabilities.
  • We need to request hospital policies are transparent and available to the public.
  • We need to utilize any data collected during this pandemic and use it in planning for the next outbreak or crisis.
  • Ableism should never be a factor in care. How do we change this?

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