Not Dead Yet, with partners the Disability Rights Education & Defense Fund and the Patients Rights Action Fund, have assembled a total of 30 disability rights and racial justice organizations to support further regulatory action by the U.S. Department of Health and Human Services Office for Civil Rights. Specifically, the groups are urging the formal HHS release of the recently issued but not yet published Request for Information (RFI) on “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (PDF) (RIN: 0945-AA15).
The RFI details and seeks public input concerning disability discrimination in a number of healthcare areas, including life-sustaining care, organ transplant eligibility, Crisis Standards of Care, suicide prevention programs and services, the child welfare system, health care value assessment methodologies (e.g. QALYs), and auxiliary aids and accessible medical equipment.
In the introduction to the RFI, the Office for Civil Rights noted having received reports of discrimination from many sources, making particular note of the National Council on Disability’s Bioethics Series:
OCR has received reports of discriminatory practices from researchers, advocates, organizations of persons with disabilities, and through its own work. The National Council on Disability (“NCD”), an independent Federal agency, has issued studies examining disability discrimination in health and human services and has recommended that OCR provide guidance, regulations, and increased enforcement with respect to multiple aspects of these issues as they relate to health and human services programs and activities funded by the Department.
The advocates’ letter urging formal publication of the RFI is below (and on a separate page here). Interested persons can support this effort by emailing messages to Secretary@hhs.gov.
U.S. Department of Health & Human Services
Office of the Secretary
200 Independence Avenue, S.W.
Washington, D.C. 20201
February 11, 2021
Re: Support for “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (RIN: 0945-AA15)
Dear Acting Secretary Cochran:
As the new administration undertakes its important role of regulatory review, we, the undersigned, write in full support of HHS’s continuation of regulatory action in the form of proposed rulemaking on the important issues related to disability nondiscrimination and Section 504 of the Rehabilitation Act raised in the recently issued Request for Information (RFI), “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities”(RIN:0945-AA15). In addition, we urge HHS to release guidance rapidly on Crisis Standards of Care, as explained below.
Even though much has been accomplished in the near 50 years of the Rehabilitation Act, and having just celebrated the 30th anniversary of the Americans with Disabilities Act, we all recognize that much is left to be done. The COVID-19 pandemic has only underscored and further uncovered discriminatory actions and attitudes in the provision of healthcare against Black and Indigenous people, other people of color, elders, and people with disabilities. With regard to the latter, as recent reports from the National Council on Disability show, people with disabilities still face significant disparities and obstacles to access in healthcare. The issues addressed in this RFI look to root out the common thread they all share: too many medical professionals see life with a disability as less worth living and less worthy of care, sometimes so much less so that they view death as the correct course. Continuing to allow those sentiments to influence the provision or denial of healthcare in any area addressed by these Section 504 issues is a threat to the integrity and equity of all healthcare, particularly because anyone at anytime can acquire or age into a disability.
The RFI addresses important protections for people with disabilities such as life-sustaining care, including in times of crisis, such as during natural disasters and pandemics, and the equitable distribution of scarce medical resources in organ transplants. Since HHS has been playing a critical role in investigating and addressing civil rights complaints regarding Crisis Standards of Care across the country, you are no strangers to the fact that triage teams are deprioritizing care to patients with disabilities based on prognoses after COVID survival; and some payers are using subjective “quality of life” metrics such as QALYs as well as “life cycle considerations” which are both subjective and presumptive, not clinically based, and always cut against older adults. Because these discriminatory Crisis Standards of Care continue to be promulgated by states and the lives of people with disabilities are currently at risk, we urge both immediate guidance and long-term, enforceable regulation on this issue. The RFI ensures the accessibility of suicide prevention programs and services, auxiliary communication aids, and support personnel. It also addresses the issue of potentially mandatory accessible medical device standards—an ongoing healthcare access priority for the community. The RFI also speaks to equality in social services so that people with disabilities cannot be summarily barred from custody of their own children or from consideration to adopt; it also solicits comment on the important issue of the Olmstead obligations of child welfare entities to ensure children with disabilities are served in the most integrated setting appropriate. Thus, an update as proposed in the RFI to the Section 504 regulations could not be more timely.
In light of these considerations and your Department’s concern for and enforcement authority over the civil rights of people with disabilities and all people in healthcare, we strongly support continued regulatory action in the form of proposed rulemaking as outlined in “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (RIN: 0945-AA15).
Thank you very much for your time and consideration.
Sincerely,
American Association of People with Disabilities (AAPD)
Maria Town
President & CEO
American Civil Liberties Union (ACLU)
Ronald L. Newman
National Political Director
American Council of the Blind
Clark Rachfal
Director of Advocacy and Governmental Affairs
Association of Programs for Rural Independent Living
Billy Altom
Executive Director
Autistic Self Advocacy Network (ASAN)
Julia Bascom
Executive Director
Autistic Women & Nonbinary Network
Sharon daVanport
Executive Director
Center for Disability Rights, Inc. (CDR)
L. Dara Baldwin, MPA
Director of National Policy
Center for Public Representation
Cathy Constanzo
Executive Director
Center for Law and Social Policy (CLASP)
Disability Rights Education and Defense Fund (DREDF)
Susan Henderson
Executive Director
Justice in Aging
Kevin Prindiville
Executive Director
League of United Latin American Citizens (LULAC)
Sindy M. Benavides
Chief Executive Officer
Little People of America
Mark Povinelli
President
Minnesota Alliance for Ethical Healthcare
Nancy Utoft
Board Chair
National Association of Councils on Developmental Disabilities
Donna Meltzer
CEO
National Association of the Deaf
Howard A. Rosenblum, Esq.
Chief Executive Officer & Director of Legal Services
National Coalition for Mental Health Recovery
Daniel Fisher
President
National Council on Independent Living (NCIL)
Kelly Buckland
Executive Director
National Disability Rights Network
Curtis L. Decker
Executive Director
National Federation of the Blind
Mark Riccobono
President
National Organization of Nurses with Disabilities
Michelle Kephart
Executive Director
Not Dead Yet
Diane Coleman
President & CEO
Paralyzed Veterans of America
Susan Prokop
National Advocacy Director
Partnership to Improve Patient Care (PIPC)
Tony Coelho
Chairman
Patients’ Rights Action Fund (PRAF)
Matt Vallière
Executive Director
Patients Rights Council
Rita L. Marker, JD
Executive Director
Physicians for Compassionate Care Education Foundation
Dr. Kenneth R. Stevens, Jr., MD
President
Salvador E. Alvarez Institute for Non-Violence
Serena Alvarez, Esq.
Executive Director
TASH
Michael Brogioli
Executive Director
United Spinal Association
Vincenzo Piscopo
CEO/President
World Institute on Disability
Marcie Roth
Executive Director & CEO
CC:
Susan Rice
Domestic Policy Council
White House
Robinsue Frohboese
Acting Director
Office for Civil Rights
US Dept. of Health and Human Services
Alison Barkoff
Acting Administrator and Assistant Secretary for Aging
Principal Deputy Administrator
Administration for Community Living
1 https://www.hhs.gov/sites/default/files/504-rfi.pdf
2 https://ncd.gov/publications/2019/bioethics-report-series
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