NCD letter to HHS Secretary Becerra concerning health equity

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June 8, 2021

The Honorable Xavier Becerra
Secretary of U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington, D.C. 20201

Dear Mr. Secretary:

The pandemic, and our collective response thereto, is having a devastating impact upon people with disabilities. The true magnitude of which, however, is not yet fully known as there is incomplete and unreliable data regarding the COVID–19 infection rates, hospitalization rates and outcomes for people with disabilities. For example, of the 594,000+ reported COVID–19 U.S. deaths, it is unknown how many of those are people with disabilities as disability status is not a recognized component of mortality data and the US Standard Certificate of Death does not capture disability as a demographic characteristic of decedents. We, the National Council on Disability (NCD) will be unveiling, this September as our 2021 Progress Report to the President, Congress and federal agency leaders, a comprehensive analysis of the effects of the pandemic upon people with disabilities.

The purpose for which I write to you now, on behalf of NCD, as your federal advisor on policy matters affecting people with disabilities, is to request a meeting with you to discuss addressing ableism within our healthcare system and among healthcare professionals. There is a significant body of literature that speaks to the dangers of physicians’ implicit bias, attitudes and beliefs contributing to inadequate or inappropriate clinical decisions and results in the failure to make appropriate recommendations for preventive care for people with disabilities as well as for minority and ethnic groups. The latest was published in Health Affairs this past February, which revealed that 82.4% of US physicians nationwide believe that people with significant disabilities have worse quality of life than nondisabled people.[1] The pandemic has exacerbated this insidious pre-existing contagion within our healthcare system and among healthcare professionals. Ableism manifested in the adoption and implementation of Crisis Standards of Care and other medical rationing policies by states, healthcare systems and hospitals. It was so profound and prevalent that your Office of Civil Rights (OCR) issued a bulletin, on March 20, 2020, to ensure that entities covered by civil rights authorities were mindful of their obligations under their federal nondiscrimination mandates.[2]

Addressing ableism is one component of a broader health equity framework for the over 64 million people with disabilities in our country and in our territories that the NCD is in the midst of developing. Ableism must be addressed by strengthening our federal nondiscrimination mandates and ensuring their robust enforcement (which we know you pursued as California’s Attorney General), and also through education, all of which is within the purview of the Department of Health and Human Services (HHS).

With respect to strengthening our federal nondiscrimination mandates, as we set forth in our February 22, 2021 letter to then Acting Secretary Cochran, through information obtained in HHS OCR’s proposed Request For Information regarding Section 504 of the Rehabilitation Act, Section 504 can be strengthened considerably through rulemaking to address the pervasive systemic discrimination of people with disabilities within our healthcare system. OCR’s adoption, for example, of the US Access Board’s 2017 standards for medical diagnostic equipment would significantly address the disparate treatment of persons with paralysis and mobility disabilities as compared to those without by healthcare providers. We recommend your review of our just released report, Enforceable Accessible Medical Equipment Standards: A Necessary Means to Address the Health Care Needs of People with Mobility Disabilities (ncd.gov). We have other recommendations to strengthen Section 504 that we look forward to putting forth.

With respect to addressing ableism through education, we would like to discuss with you specifically mandating the adoption and implementation of disability cultural-competent curricula in all undergraduate medical and allied health professional education as well as post-graduate residency and fellowship programs that is conducted in over 1100 teaching hospitals.[3] The legislative mechanism for doing so exists, in part, in Section 5307 of the Patient Protection and Affordable Care Act, 42 U.S.C.A. § 293e (West). Section 5307 gave your office authority, acting through the Administrator of the Health Resources and Services Administration, to make awards of grants, contracts, or cooperative agreements to public and nonprofit private entities (including tribal entities) for the development, evaluation, and dissemination of research, demonstration projects, and model curricula for cultural competency, prevention, public health proficiency, reducing health disparities, and aptitude for working with individuals with disabilities training for use in health professions schools and continuing education programs, and for other purposes you may determine as appropriate. Id. § 293e(a)(1). We recommend that such curricula incorporate the Core Competencies on Disability for Health Care Education drafted by the Alliance for Disability in Health Care Education. See Core Competencies on Disability for Health Care Education - Nisonger Center (osu.edu).

I look forward to learning of your thoughts regarding these important matters and meeting with you to further discuss. You can reach me at (202) 272-2004 or via email at agallegos@ncd.gov. As a matter of courtesy, on June 21, 2021, our acting Executive Director and General Counsel, Joan Durocher, will contact your office to coordinate a meeting if we don’t hear from your office before then. Ms. Durocher can be reached at jdurocher@ncd.gov. We look forward to further discussion.

Respectfully,

Andrés J. Gallegos
Chairman

 

Cc:     Robinsue Frohboese, Acting Director & Principal Deputy Office for Civil Rights




[3] Regarding oral healthcare, NCD has successfully worked with the Commission on Dental Accreditation to revise its curricula standards, thereby making the training of treatment management for people with disabilities a part of standard dental training curricula in the US. NCD was additionally successful in working with the dental community to revise the American Dental Association’s Code of Professional Conduct to state that a patient may no longer be denied care based on their disability – a standard adopted by many states as law.