Disability Rights California Calls Upon State Policy Makers and Medical Providers to Act Now to Stop Deadly Discrimination Against People with Disabilities Before it Starts

Californians with disabilities and our advocates are horrified by reports from Italy and now Washington State about rationing access to Coronavirus (COVID-19) care via medical treatment triage criteria that will openly exclude people with disabilities from life-saving care.

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Disability Rights California Calls Upon State Policy Makers and Medical Providers to Act Now to Stop Deadly Discrimination Against People with Disabilities Before it Starts

Californians with disabilities and our advocates are horrified by reports from Italy and now Washington State about rationing access to Coronavirus (COVID-19) care via medical treatment triage criteria that will openly exclude people with disabilities from life-saving care. As California readies for the COVID-19 surge we call upon California’s policy makers to make clear and medical providers to act now to stop deadly discrimination against people with disabilities before it starts.

Guidance distributed by the Washington Department of Health last week recommends that triage teams consider transferring hospital patients with “loss of reserves in energy, physical ability, cognition, and general health” to outpatient or palliative care, rather than continuing to treat them. The COVID-19 triage policy for the University of Washington Medical Center instructs doctors to not do what is best for their individual patients with disabilities and instead deny them treatment in favor of a younger, healthier person in the region, although that patient may arguably need it less. This leaves those who are older and sicker — people with disabilities — to die. 

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. California must reject discriminatory rationing of healthcare and instead ensure that our health care providers adopt equitable triage criteria that affirm our bedrock principles of fairness, non-discrimination, and the value of every life, whatever age, race, nationality, or disability status. 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 Monday, Disability Rights Washington filed a federal discrimination complaint against the Washington State policies, asking the U.S. Department of Health and Human Services to step in. One of those affected in Washington is Ivanova Smith, a person with an intellectual disability who is the parent of a young child, a homeowner, and an experienced and effective disability rights advocate. But if she falls ill with COVID-19, she may have a hard time accessing scarce medical resources given the reliance on baseline functional status (including cognition) at multiple steps in Washington State triage protocol. Another person described in the Washington State discrimination complaint is Rose, a young woman with Cystic Fibrosis who has good lung function but fears that her diagnosis alone may exclude her from care.

Let’s not forget that people with disabilities have historically experienced discrimination in the provision of medical treatment. Long-standing triage protocols in other states such as Alabama and Colorado already exclude many people with developmental disabilities or neuromuscular disease. Studies collected by the National Council on Disability document that a large segment of the medical community refuses even to treat patients with disabilities; a quarter of doctors in one study refused to schedule an appointment with potential patients who used wheelchairs. Disabled patients “experience health care disparities, such as lower rates of screening and more difficulty accessing services, compared to people without disabilities.”

Neil Romano, the Chair of the National Council on Disability, made this point in an open letter to federal authorities on March 18, 2020, “The lives of persons with disabilities continue to be devalued in the medical profession due to pervasive negative biases and inaccurate assumptions. The belief that people with disabilities have a lesser quality of life and are less valuable to society has led to deadly consequences - physicians choosing to provide medically scarce resources to non-disabled or healthier people – [which is] a violation of human rights, civil rights and a reinforcement of the belief that people with disabilities are lesser-than and less deserving of life itself.”

We need state policy makers to make clear and hard-pressed medical providers to understand: You may prioritize patients with a greater urgency of need, and delay non-urgent care. Do not allocate scarce resources to individuals with no chance of survival. But do not discriminate against people with disabilities who seek life-sustaining care from which they will benefit, even if they may require more or longer treatment, have a lower chance of survival or have underlying conditions that complicate care. During this time of crisis, we need to stand together and protect and value equally the lives of all Californians.

 

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