Update: January 15, 2021: The US Department of Health & Human Services Office for Civil Rights (OCR) resolved a federal complaint filed by Disability Rights North Carolina (DRNC) and The Arc of North Carolina alleging that North Carolina’s scarce medical resource plan illegally deprioritized people with disabilities in the allocation of lifesaving care. DRNC and The Arc of North Carolina were joined by CPR as well as The Arc of The United States, Bazelon Center for Mental Health Law, Autistic Self Advocacy Network and Samuel Bagenstos. In response to the complaint and engagement with OCR, North Carolina revised its “Protocol for Allocating Scarce Inpatient Critical Care Resources in a Pandemic” to comply with federal disability rights laws and ensure that people with disabilities will not face discrimination through public health emergencies such as COVID-19.
Update: January 14, 2021: CPR, Disability Rights Texas, The Arc and Justice in Aging collaborated with two Texas regional health groups, North Texas Mass Critical Care Guideline Task Force (NTMCCGTF) and Southwest Texas RAC, along and the Office for Civil Rights (OCR), resulting in the approval of revised crisis standards of care. The revised guidelines comply with federal disability rights laws and ensure the nondiscriminatory treatment against individuals with disabilities and older adults, even when public health emergencies such as the COVID-19 pandemic necessitate the rationing of scarce medical resources. In addition to the revision, CPR along with The Arc and Justice in Aging have created resources for stakeholders regarding preventing disability and age discrimination in crisis standards of care.
Update: November 30, 2020: CPR, along with The Arc, Bazelon Center, Autistic Self Advocacy Network, and Professor Sam Bagenstos, has updated our Evaluation Framework for Crisis Standards of Care Plans which was developed to assist stakeholders in evaluating Crisis Standards of Care in their states. You can read the updated framework here and can find more resources on Crisis Standards of Care Plans below.
Update: November 12, 2020: Utah, in collaboration with HHS Office for Civil Rights, revised its August 2020 Crisis Standards of Care (CSCs) to remove the age-based tie breaker. The new standards are here. With this recent change (along with the changes Utah made in August), Utah has addressed the provisions that CPR and our partners alleged were discriminatory. Read our August news item here.
Update: September 17, 2020: The Centers for Medicare & Medicaid Services (CMS) at the U.S. Department of Health and Human Services issued a new guidance document about visitation in nursing homes. Among other things, it describes circumstances when in-person supports are required under federal disability laws. CPR is advocating for CMS to issue similar guidance about other congregate settings. You can read the full guidance here.
Many communities are feeling overwhelmed by the novel COVID-19 pandemic, with many state and local governments declaring a state of emergency. As the number of COVID-19 cases increase, health care professionals predict that there will be a lack of acute care services & equipment, notably ventilators, to meet the increasing demand. As a result of this fear, some states and medical professionals have begun developing guidance protocols for rationing acute medical care, meaning guidelines to determine who will have access to life-saving treatment. Many of these plans rely on disability-based distinctions, illegally discriminating against people with disabilities. In addition, some states and hospitals have put in place no-visitor policies that illegally deprive people with disabilities of support they need to get equal access to treatment.
CPR is fighting to ensure that people with disabilities have equal access to life-saving COVID-19 treatments. CPR, together with other disability rights organizations, has filed a number of complaints with U.S. Department of Health and Human Services’ Office of Civil Rights (OCR) regarding states’ discriminatory treatment rationing protocols and hospital no-visitor policies. Details on those complaints can be found below.
In response to the disability community’s strong advocacy, the U.S. Department of Health and Human Services’ Office of Civil Rights (HHS OCR) published a bulletin on March 28, 2020 to ensure that covered entities follow civil rights laws, including Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act which “prohibit discrimination on the basis of disability in HHS funded health programs or activities.” The guidance explains that entities funded by HHS cannot deny people with disabilities medical care “on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities.” It is also discusses the obligations of hospitals to ensure equal access and effective communication. Access the bulletin here.
Below, you can find analyses, filed complaints and advocacy letters, and related media. We and our partners have created this 50 state overview to track state-level policies and advocacy.