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For Alaskans with disabilities, concern over rationed care

With the recent activation of statewide crisis standards of care, we’ve entered a new phase of the Covid-19 pandemic.

These newly implemented standards provide ethical guidelines to health care providers for situations where they lack sufficient resources to care for a volume of patients that is overwhelming our health care system. We are only just beginning to see the rationing of care that forces providers to make incredibly difficult decisions about who will live and who will die. Ongoing hospitalizations related to Covid-19 and the resulting resource shortages will almost certainly make rationed care more commonplace in our health care system.

As Alaska’s largest Center for Independent Living, Access Alaska, supports community living and independence for hundreds of Alaskans experiencing disabilities. We provide information and referral services, individual and systems advocacy, peer support networks, independent living skills training and the supports that enable Alaskans with disabilities to live and thrive in their communities. As a voice for the disability community, we have serious concerns about how the rationing of care will impact Alaskans with disabilities.

As hospitals around the state work to implement the activated crisis standards, we want to emphasize that federal law prohibits discrimination in the provision of medical treatment. In a letter drafted in March 2020, Susan Henderson, executive director of the Disability Rights Education and Defense Fund clarified that:

• The presence of a disability, including a significant disability, is not a permissible basis for denying people access to care or giving them a lower priority for care.

• The fact that a disabled person may have a lower likelihood of survival is not a permissible basis for denying care or allocating the person a lower priority for care. If the person will benefit from care, then they are entitled to access care on an equal basis as others.

• The fact that a person with a disability may require reasonable accommodations during treatment, or more intensive treatment, is not a permissible basis for denying care or allocating the person a lower priority for care.

• All medical decisions about providing care must be based on current objective medical evidence, and not based on generalized assumptions about a person’s disability. Treatment decision may not be made based on misguided assumptions that people with disabilities experience a lower quality of life.

While we’re encouraged to see that Alaska’s Patient Care Strategies for Scarce Resource Situations include provisions to prohibit discrimination, we are nonetheless concerned that the impacts of rationed care will fall disproportionately on Alaskans with disabilities. Given this new stage of the pandemic, we urge medical providers, and state and local leaders to recognize that the lives of people with disabilities are just as valuable as those without disabilities. Rationing care in a way that targets people with disabilities and chronic conditions is unethical and illegal.

We recognize that there are difficult days ahead, but we will continue to work hard to ensure that Alaskans with disabilities receive the same care and consideration as anyone else in our communities.

Eric Gurley is executive director of Access Alaska, Inc.

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