Today, the U.S.
Department of Health & Human Services Office for Civil Rights (OCR) announced the resolution of a federal complaint
filed against Tennessee, one of nearly a dozen complaints filed by a coalition of national
disability advocates – the Center for Public Representation, The Arc of the
United States, Bazelon Center for Mental Health Law, Autistic Self Advocacy
Network, Disability Rights Education and Defense Fund and Samuel Bagenstos — challenging
states’ plans for rationing medical care during the COVID-19 pandemic as discriminating
against people with disabilities. Medical rationing policies have
disproportionately impacted Black people with disabilities, who have higher
rates of COVID-19 infection and hospitalization. Today’s resolution sets a national precedent,
with OCR building off earlier resolutions of complaints regarding Alabama’s and
Pennsylvania’s plans and weighing in for the first time on the discriminatory
impact of a number of provisions common in many states’ rationing plans.
The complaint against Tennessee, brought by the
coalition of national disability advocates together with Tennessee advocates
led by Disability Rights Tennessee and the Civil Rights Enforcement and
Education Center (CREEC), alleged that Tennessee’s plan illegally excluded
certain people with disabilities from accessing life-saving treatment like
ventilators based on their disabilities and deprioritized others based on their
disabilities. In response to the
complaint and engagement with OCR, Tennessee has revised its “Guidance for the Ethical Allocation of
Scarce Resources During a Community-Wide Public Health Emergency” to comply with federal disability
rights laws and ensure that people with disabilities are not discriminated
against even when public health emergencies, such as the COVID-19 pandemic,
necessitate the rationing of scarce medical resources.
The following
are key precedent-setting changes in Tennessee’s policy to avoid discrimination
against people with disabilities:
- No
Categorical Exclusions Based on Disability or Resource Intensity: An
individual can no longer be excluded from medical treatment based solely on a
diagnosed disability or the fact that an individual might require more time or
resources to recover because they have a disability. This is the first time OCR has addressed
resource intensity as a factor. Rather
than making assumptions about a patient’s ability to respond to treatment based
solely on stereotypes, medical personnel must perform an individualized
assessment of each patient based on the best objective current medical
evidence.
- No
Long-Term Survivability Considerations: Due to this resolution,Tennessee is now the first
state to explicitly eliminate longer-term survivability as a consideration in
treatment decisions, changing its Guidance to allow medical personnel to
consider only “imminence of mortality.” Survivability is a factor that can be
fraught with speculation, mistaken stereotypes, and assumptions about the
quality of life and lifespan of people with disabilities.
- Reasonable
Modifications Required: Tennessee’s
Guidance now requires hospitals to make reasonable modifications to the
Sequential Organ Failure Assessment (SOFA)—the tool used to prioritize access
to medical treatment—to avoid penalizing people with underlying conditions that
are unrelated to their ability to benefit from treatment. This is the first
time OCR has weighed in on modifications to assessment tools. It also requires
hospitals and other long-term care facilities (such as nursing homes) to
reasonably modify no-visitor policies when necessary to ensure equal access to
care.
- Reallocation of Personal Ventilators
Prohibited: Medical
personnel may not reallocate the personal ventilator of a patient who uses a
ventilator in their daily life to another patient whom the personnel deem more
likely to benefit from the ventilator in receiving treatment. This is the first
OCR resolution addressing this issue.
“Today’s OCR
resolution makes clear that policies common in many states’ medical rationing
plans – such as denying care based on the belief that disabled people take
longer to recover or by using tools that penalize people for having
disabilities that do not impact their ability to survive COVID19 – constitute
illegal disability discrimination,” said Alison Barkoff, Director of Advocacy
at the Center for Public Representation.
“We hope that states will revisit their policies in light of today’s
resolution.”
“This
resolution makes major progress toward ensuring that people with disabilities have
equal access to the care and tools necessary to fight COVID-19 infection,” said
Shira Wakschlag, Director of Legal Advocacy and General Counsel at The Arc. “We
are grateful to OCR for continuing to recognize the rights of people with
disabilities during this pandemic and we will keep fighting for revisions to discriminatory
policies that could mean the difference between life and death for people with
disabilities.”
In addition to
filing complaints with OCR, the national disability organizations have created
resources to assist to assist stakeholders across the country in evaluating and
advocating for non-discriminatory medical rationing plans at Center for Public Representation and The Arc.
For more information about today’s resolution,
contact:
Alison Barkoff, Center for Public Representation
abarkoff@cpr-us.org or 202-841-7562
Kristin Wright, The Arc of the United States
wright@thearc.org or 202-617-3271
Martie Lafferty, Civil Rights Education and Enforcement Center
mlafferty@creeclaw.org or 615- 913-5099
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