In The Face Of Ethical Aberrations In Several States Colorad
DENVER, April 9, 2020 /PRNewswire/ -- The Governor's Expert Emergency Epidemic Response Committee developed Crisis Standards of Care (CSC) after collaboration with experts and communities. Governor Polis has authorized the Colorado Department of Public Health and Environment to enact the standards when or if necessary.
The Colorado Cross Disability Coalition (CCDC), The Arc of Colorado, and over 140 organizations thank Gov. Jared Polis for ensuring that people with disabilities and other vulnerable populations receive equitable care under the CSC during the COVID-19 epidemic and other crisis situations.
Specifically, the revised CSC Plan provides standards that hospitals and other health care practitioners should implement once activated by the Chief Medical Officer for the Colorado Department of Public Health and Environment (CDPHE): (1) disallow medical "rationing" based on disability alone, (2) prevent other discrimination by establishing a blinded triage process, (3) specify that all hospitals in Colorado have a plan for providing effective communication accommodations with/for people who are disabled, and (4) clarify that no person who uses a ventilator as part of their regular care will have their ventilator taken away or receive less than equitable care.
"We are grateful to Gov. Polis and his team for their leadership in waging the war against COVID-19 and for ensuring that American civil rights and ethical values are upheld – even, and especially, when it comes to emergencies where medical care resources may become scarce and hard decisions must be made," says Julie Reiskin, Executive Director of the CCDC.
"Every resident in this state deserves and should receive equitable care, even during the most uncertain of times," says Lt. Governor Dianne Primavera. "Our Crisis Standards of Care guidelines are informed by ethicists, physicians, and experts, including those in the Colorado disability community who have been intimately involved with the response to the COVID-19 pandemic. When a crisis like this hits, we must protect everyone's rights, civil liberties and health."
"My family and I were appalled when we learned some states are creating policies that discriminate against people with disabilities and would absolutely jeopardize the life of my daughter," says Dominic Capuano, father of a 12-year-old with Down syndrome from Littleton, Colorado. "We are just so grateful that our Governor, the CCDC, the Arc of Colorado, and the Global Down Syndrome Foundation are getting this out right before the peak of COVID-19 so there is no doubt that our Clarissa can get the care she needs if she needs it."
While Reiskin acknowledges that some further revisions may be needed to the guidelines around care allocation on the basis of resource-utilization requirements/duration of mechanical ventilation, Colorado's CSC Plan is authorized through executive order of the Governor for implementation by CDPHE's Chief Medical Officer. Activation of crisis standards in the Plan provides the legal authorization for its implementation and use in health care settings, in addition to liability protections for those providers that follow its terms.
The Colorado CSC Plan provisions are also in stark contrast to those in other states, which in two cases specifically state that people with disabilities or medical conditions using a ventilator could have their ventilator taken away so that a more able-bodied person can be treated for COVID-19.
The Arc and the Center for Public Representation (CPR) have taken the lead with other disability organizations to file complaints to the U.S. Department of Health and Human Services Office of Civil Rights (OCR) against the states of Alabama, Kansas, Pennsylvania, Tennessee, and Washington for publishing or having COVID-19 related guidelines that would blatantly and illegally discriminate against people with disabilities.
Under the Alabama Department of Public Health's Emergency Operations Plan, for children and adults, hospitals are ordered to "not offer mechanical ventilator support for patients" with "severe or profound mental retardation," "moderate to severe dementia," and "severe traumatic brain injury."
In Kansas, the state recently developed a protocol called the "Toolkit for COVID-19." The protocol specifically withholds life-saving treatment from patients based on their disability diagnosis – without an individualized assessment of their prospects for recovery – including people with "advanced untreatable neuromuscular disease," people with "advanced or irreversible immunocompromise," and people with some forms of cancer. In addition, hospitals could take away ventilators from individuals with disabilities or medical conditions who regularly use their own ventilators.
The Interim Pennsylvania Crisis Standards of Care for Pandemic Guidelines were just published on March 22, 2020 and discriminate against and jeopardize the lives of people with disabilities. For children and adults, the "scoring" of who gets care and who doesn't takes into account long-term survival. The guidelines also discriminate against people with preexisting conditions that are disabilities and those with "severely life-limiting" co-morbid diagnoses, which can be left to interpretation.
The standing Guidelines for the Ethical Allocation of Scarce Resources in Tennessee exclude many people with disabilities from critical care, including ventilators. They further exclude people with metastatic cancer, some people with dementia, and some people with traumatic brain injury.
In Washington state, the Department of Health published descriptions of the goals and flow charts associated with emergency COVID-19 treatment that mirror the existing policy of the state-run University of Washington Medical Center (UWMC). Under this policy, the priority would be to uniformly treat people who are younger and healthier and to leave those who are older and sicker—including people with disabilities—to die.
According to The Arc and the CPR, all five states have protocols or guidelines in place that discriminate against people with disabilities and violate federal disability rights laws including the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504), and Section 1557 of the Affordable Care Act (ACA), and places the numerous lives at serious risk.
"Our civil rights laws protect the equal dignity of every human life from ruthless utilitarianism," says Roger Severino, OCR Director. "HHS is committed to leaving no one behind during an emergency and helping health care providers meet that goal. Persons with disabilities, with limited English skills, and older persons should not be put at the end of the line for health care during emergencies."
OCR has issued guidelines and statements underscoring that the policies associated with these states are aberrations in humanity and ethics, violate federal law, and that legal action can be taken if these policies are carried out.
The 140+ disability organizations that helped result in an ethical CSC guideline in Colorado includes the Colorado Cross Disability Coalition, The Arc of Colorado, arc Thrift Stores, Global Down Syndrome Foundation (GLOBAL), Anti-Defamation League (ADL), American Civil Liberties Union (ACLU), Atlantis Community, Inc., The Denver Foundation, Special Olympics Colorado, El Grupo Vida, One Colorado, Atlantis ADAPT, Disability Law Colorado, and Alliance Colorado.
The Colorado Cross-Disability Coalition (CCDC)
The Colorado Cross-Disability Coalition is the largest disability rights organization in Colorado that is run by and for people with all types of disabilities with a mission to advocate for social justice.
The Arc of Colorado
The Arc of Colorado promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes.
Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer's and Cognition Center – all on the Anschutz Medical Campus.
GLOBAL: Anca Call
CCDC: Julie Reiskin
The Arc of Colorado: Christiano Sosa
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SOURCE Global Down Syndrome Foundation