Civil Rights Complaint Filed by Disability Rights Pennsylvania Resulted in Progress on Pennsylvania’s Medical Rationing Guidelines

Civil Rights Complaint Filed by Disability Rights Pennsylvania Resulted in Progress on Pennsylvania’s Medical Rationing Guidelines

DRP Continues to Advocate to Protect Pennsylvanians with Disabilities and Issues Special Hotline Number for Complaints.

 

For Immediate Release

April 16, 2020

 

Press contact:

Kelly Darr, Legal Director
Disability Rights Pennsylvania
kdarr@disabilityrightspa.org
(215) 238-8070 ext. 221

 

In response to a civil rights complaint filed by Disability Rights Pennsylvania (DRP) and other advocacy groups, the U.S. Department of Health & Human Services’ Office for Civil Rights (OCR) announced today that Pennsylvania has made changes to its proposed guidelines on rationing of scarce medical care resources needed to treat COVID-19 patients that better protect people with disabilities from discrimination.

DOH removed criteria that automatically deprioritized persons needing critical care on the basis of particular disabilities and has included language to ensure that no one will be denied care based on stereotypes, assessments of quality of life, or judgments about a person’s “worth” based on disabilities.  Importantly, OCR cautioned that “[t]his result does not, however, preclude future OCR enforcement in cases of potential discriminatory implementation of Pennsylvania’s policies by any covered health care provider.”

“As a result of DRP’s OCR complaint and advocacy on behalf of many concerned individuals and advocates across Pennsylvania, DOH took critical steps toward setting a rationing policy that will protect the rights of people with disabilities in this pandemic,” stated Kelly Darr, Legal Director of Disability Rights Pennsylvania. “Our work is not done, however, and we remain committed to ensure that people with disabilities do not face discrimination in the application of these standards.  We are encouraged by OCR’s statement that it remains open to future complaints if Pennsylvanians face discrimination under these Guidelines.”

The Guidelines include the following protections for people with disabilities:

• No categorical exclusions. No person will be disqualified from receiving critical care solely on the basis of their disability.   Health care providers cannot use a list of disabilities to de-prioritize those patients for critical care if rationing is implemented.  As the Guidelines explain, such exclusions “will make many feel like their lives are ‘not worth saving,’ leading to justified perceptions of discrimination.”
• A prohibition on the reallocation of personal ventilators that adults with disabilities ordinarily use and bring with them when they seek care.
• No reference to specific disabilities as a basis to reduce the likelihood that those individuals would receive critical care.
• No consideration of life expectancy in the longer term, including 10-year life expectancy after critical care treatment.
• No one can “be denied care based on stereotypes, assessments of quality of life or judgments about a person’s ‘worth’ based on the presence or absence of disabilities or other factors.”
• All rationing decisions must be based on individualized patient assessments by clinicians using the best available objective medical evidence. This means that rationing decisions cannot be based on discriminatory assumptions about a person’s disability or medical condition.
• “Triage officers” – the health care professionals who will be responsible to make any rationing decisions – should receive training on implicit bias and cultural competency.
• Patients and their family members or caregivers who have concerns about rationing decisions should be notified of their right to express their concerns or file a complaint with the hospital. Unresolved or unsatisfactorily resolved complaints can be brought to the Pennsylvania Department of Health.

While the above changes go a long way in ensuring that people with disabilities do not suffer from discrimination, DRP remains concerned about a number of the Guidelines’ principles:

First, in rationing care, the Guidelines allow health care providers to consider predictions about how long a person will live in the short term, including up to five years after treatment, due to a disability or medical condition unrelated to COVID-19.  This rule could unfairly limit access to health care resources for people with disabilities.  To avoid discrimination, health care providers should only consider a person’s immediate term survivability, that is, the likelihood of surviving COVID-19 if provided treatment.

Second, the Guidelines do not explicitly instruct health care providers that they are required under the law to make reasonable modifications to accommodate people with disabilities, including by:

• Making modifications to the assessment tools used under the Guidelines if a person cannot be accurately and fairly assessed due to a disability.
• Making modifications for people whose disabilities might require a longer period of treatment – for example, on a ventilator – in order to ensure an equal opportunity to benefit from the treatment.
• Providing effective communication to people with sensory disabilities and making modifications to restrictive visitor policies to allow individuals with disabilities who need family members or staff to accompany them in the hospital to ensure that they are properly assessed and can participate in their treatment.

“While not perfect, these changes to Pennsylvania’s guidelines are a big step in the right direction in that they now make clear that opinions about a person’s quality of life have no role in deciding who will get life-saving medical care,” said Darr.  “We invite the DOH to continue to work with us to ensure that its Guidelines do not have the effect of discriminating against people with disabilities.”

To continue to advocate for the rights of people with disabilities on this issue, DRP is opening a Health Care Rationing Hotline during the pandemic.  Individuals with disabilities or family members or caregivers of individuals with disabilities who experience discrimination in health care rationing, who are denied effective communication at the hospital, or who are prohibited from bringing a needed family member or staff with them in the hospital should contact DRP at 1.800.692.7443 ext 402.

DRP is the organization designated by the Commonwealth of Pennsylvania as the protection and advocacy system pursuant to federal laws.  DRP is charged under these laws with protecting individuals with disabilities against abuse and neglect, with advocating for such individuals to assure protection of their rights, and to pursue legal remedies in furtherance of these rights.

 

The Guidelines can be found here.

DRP’s Complaint and supplements to the complaint can be found here.

OCR’s press release can be found here.