An influx of COVID-19 patients is testing our health care system and its ability to respond to the needs of the public, particularly the needs of people with disabilities. Now as much as ever, it is essential that our state ensures life-saving care is not illegally withheld from citizens with disabilities. On March 27, 2020, Disability Rights Nebraska expressed our concerns of care rationing and its impact on Nebraskans with disabilities in a letter to Governor Ricketts and other state officials.
Governor Pete Ricketts
Lt. Gov. Mike Foley
NDHHS CEO Dannette Smith
Attorney General Doug Peterson
Speaker of the Legislature Senator Jim Scheer
Judiciary Committee Chair Senator Steve Lathrop
Health and Human Services Committee Chair Senator Sara Howard
Dear Governor Ricketts and other distinguished state officials:
We write on a matter of urgency regarding non-discriminatory access to life-saving medical care for people with disabilities across the lifespan, including those with psychiatric, developmental, intellectual and physical conditions who contract COVID-19. While the impacts of the current COVID-19 crisis are felt throughout the state in a myriad of ways, there is no greater concern than access to life-saving care, and the ability of our health care system to respond to the anticipated need for intensive care and ventilator access for thousands of residents.
People with disabilities are, and will be, at high risk of contracting COVID-19, particularly those who are in congregate residential programs, state-operated institutional settings, prisons and jails, and long-term care facilities. We recognize and appreciate that Nebraska is already making efforts to protect these residents’ safety and their ability to access medically necessary services.
At this moment, it is also critical that state officials take specific steps to ensure that life-saving care is not illegally withheld from citizens with disabilities, including aging adults with co-morbid conditions, due to discriminatory resource allocation or altered standards of care.
All state and private entities overseeing the delivery of life-saving medical interventions must make treatment decisions consistent with the non-discrimination requirements of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. Yet around the country, national and state advocacy groups are confronting outdated and discriminatory policies on emergency resource allocation in which individuals with specific disabilities or functional impairments can be denied access to, or subjected to the removal of, medically necessary ventilators.1
In response to such policies, the National Council on Disability(NCD)2 and the Consortium for Citizens with Disabilities(CCD)3 have proposed important principles for the delivery of care. In keeping with those national organizations, and consistent with our respective organizations’ missions, we urge the state to immediately adopt and disseminate mandatory statewide guidelines which clarify the following:
- 1. that the ADA and Section 504 require government decisions regarding the allocation of treatment/life-saving resources to be made based on individualized determinations, using current objective medical evidence, not generalized assumptions about a person’s disability;
- 2. that the ADA and Section 504 prohibit treatment allocation decisions based on misguided assumptions that people with disabilities experience a lower quality of life, or that their lives are not worth living;
- 3. that the ADA and Section 504 prohibit treatment allocation decisions based on the perception that a person with a disability has a lower prospect of survival;
- 4. that the ADA and Section 504 prohibit treatment allocation decisions based on the perception that a person’s disability will require the use of greater treatment resources; and
- 5. that a person is “qualified” for purposes of receiving COVID-19 treatment if he or she can benefit from the treatment (that is, can recover) and the treatment is not contraindicated.4
Unlike many states, it appears that Nebraska currently has no crisis standards of care—we do not even have documents that, at a high level of generality, state the importance of non-discrimination in treatment decisions made under altered standards of care. We need standards that directly address the resolution of critical questions concerning how allocation of resources will occur at a time when demand exceeds system capacity. Private hospitals and ethics committees who will be on the front lines of thousands of individual treatment decisions need clear and binding guidance from the state. Without that, we fear that limited medical resources will be allocated in a way that maximizes the number of lives saved. This approach to maximization is often informed by an assessment of “comparative ability to benefit” from treatment, which then leads to conscious or unconscious discrimination based on disability.5
Nebraska needs a set of mandatory principles like those listed above, prohibiting discrimination and requiring the application of individualized and objective medical standards that deny or remove care only when continued treatment would be futile. Without the creation of a statewide policy, and a meaningful appeal process, the exercise of medical discretion across the state will be largely unchecked, unguided, and subject to wide variation. The unavoidable result will be highly subjective decision-making, needlessly placing even greater responsibility and stress on treating professionals.
Failure to act also presents the unacceptable risk that misplaced societal views about the relative quality or value of the lives of people with disabilities will result in their denial of life-saving treatment.
We are on the precipice of a statewide crisis in access to care, as the Governor has so aptly pointed out in recent press briefings. We applaud the strategic steps being taken to avert a crisis in managing both the rates of COVID-19 infection and the comprehensiveness of the State’s response. Nebraska has an opportunity to be a national leader on these issues, by acting to establish equitable, democratic and nondiscriminatory standards of care before scarcity begins driving medical decisions across the state.
We stand ready to assist in these efforts, and can quickly bring to bear a range of local and national resources and expertise, including emerging best practices, to support the Governor, the COVID-19 command center, and the Department of Health and Human Services. At a minimum, we ask that you confirm your receipt of this letter and make clear how the state intends to address the disability community’s concerns regarding discriminatory rationing of care.
Thank you in advance for your consideration of this most important issue, and for your long–standing commitment to Nebraska’s citizens with disabilities.
Eric A, Evans, Ph.D.
CEO, Disability Rights Nebraska
cc: Major General Daryl Bohac, NEMA
Chancellor Jeffrey P. Gold, MD, UNMC
Dean Robert W. Dunlay, MD, Creighton Medical School