National Council on Disability 

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families 

February 14, 2022

Dear Disability Community Stakeholders:

The health and well-being of people with disabilities have long been ignored in this 

country despite the existence of an overwhelming body of studies and reports that 

unequivocally document the significant and continuing prevalence of health disparities 

that exist between persons with disabilities and our nondisabled counterparts.

The latest contribution to that body of work is a December 2021 study appearing in 

JAMA, Risk of Adverse Maternal Outcomes in Pregnant Women with Disabilities,

revealing significant maternal health disparities between women with physical, sensory 

or intellectual disabilities, compared to women without disabilities. As addressed in the 

study, women with disabilities had higher risk of gestational diabetes, placenta previa, 

premature rupture of membranes, preterm premature rupture of membranes, and 

postpartum fever as well as maternal death. The study cites a number of contributing 

factors to these disparities, including providers’ lack of clinical knowledge of their 

patients’ disabilities, providers’ negative attitudinal disability beliefs, and their low-level 

of comfort in managing pregnancies among women with disabilities. All of those factors 

are recurring themes contributing to the lack of health equity for people with disabilities. 

That considerable body of research underscores that indifference, inattention, and 

ignorance have prolonged those disparities, and as we have witnessed during the 

pandemic has left people with disabilities vulnerable to contracting the COVID-19 virus 

and less resilient to combat against its effects. Despite the decades-long existence of 

federal nondiscrimination mandates, people with disabilities are still subjected to 

pervasive and systemic discrimination by healthcare providers, which exacerbates 

those disparities -- and providers do so while supported by federal financial assistance. 

Enough. 

With the release of Health Equity Framework for People with Disabilities, the National 

Council on Disability (NCD) calls for an all-of-government approach to comprehensively 

address the health needs of the over 64 million people with disabilities in this country 

and in our territories. The framework requires the combined action of Congress; the 

Departments of Health and Human Services; Justice; Education; and Veteran Affairs. 

While the framework contains 39 discrete components, there are four foundational 
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pillars – special medically underserved population designation; disability clinical-care 

curricula development and adoption; disability data capturing; and accessible medical 

diagnostic equipment enforceable standards. Individually and collectively those 

foundational components are critical to achieving health equity for people with 

disabilities, and the remaining components flow from their adoption and 

implementation. 

Last February, in my Vision and Priority Statement, I articulated that NCD’s abiding

focus during my tenure as Chairman will be on the healthcare needs of people with 

disabilities. The Health Equity Framework is a result of that focus. During the last 10 

months developing the framework, we met with representatives of national disability 

rights organizations and sought counsel and input from a multi-disciplinary Dream 

Team of our country’s leading experts on disability health equity, health disparities and 

healthcare accessibility, each of whom have dedicated their professional lives to 

addressing the healthcare needs of people with disabilities. We also have met and 

communicated with the Administration’s Domestic Policy Council, numerous offices 

within various federal agencies, and with staff of congressional committees that have 

jurisdictional responsibility for various components of our framework to begin 

discussions regarding the framework’s components. We have also had discussions with 

organizations outside of government, such as The Joint Commission, which accredits 

more than 22,000 U.S. health care organizations and programs, soliciting their support 

to undertake specific measures addressing certain aspects of the health inequity faced 

by people with disabilities. 

All of those meetings and discussions helped shape the framework. As we met, we 

learned of certain federal agencies’ and departments’ ongoing actions to address our 

framework components. For example, with input from NCD and its Dream Team, the 

Office of the National Coordinator for Health Information Technology has begun efforts 

to address the uniformly lacking disability-related data in public health surveillance 

programs. Last September, the Department of Health and Human Services Office of 

Civil Rights announced its intent to pursue rulemaking under Section 504 of the 

Rehabilitation Act of 1973. NCD has consistently advised that those proposed rules will 

require the adoption and implementation of accessible medical diagnostic equipment 

standards, translating the US Access Board’s 2017 voluntary standards into 

enforceable regulations. Similarly, in December the Department of Justice in the Unified 

Regulatory Agenda revealed that it will issue its Advance Notice of Proposed 

Rulemaking addressing accessible medical diagnostic equipment in September 2022.
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In furtherance of NCD’s disability policy advisory mandate, we will continue to assist 

those agencies in their efforts. We will also continue advising the respective 

congressional committees with jurisdictional authority over the various components of 

our Health Equity Framework for consideration of legislative adoption and 

implementation. Over the course of this year, we will organize convenings to help better 

inform our federal partners on the necessity of certain components of our Health Equity 

Framework and implementing our recommended targeted solutions.

While there is still a significant amount of heavy lifting required to advance our Health 

Equity Framework, we express our profound gratitude to our Dream Team of advisors: 

Dr. Lisa Iezzoni, Dr. Kristi Kirschner, Dr. Margaret Turk, Dr. Priya Chandan, Professor 

Elizabeth Pendo, JD; Dr. Rosaly Correa-de-Araujo, Professor Barbara Kornblau, JD; 

Dr. Bonnie Swenor, Dr. Susan Havercamp, Dr. Michael McKee, Dr. JoAnne Theirry, Dr. 

Deborah Klein Walker, Dr. Cheri Blauwet and to NCD council member, Dr. Rick Rader, 

for their invaluable assistance in critiquing the framework and assistance in its 

development. We will continue to rely on our Dream Team as we move forward. 

Additionally, my deep appreciation to NCD’s health equity subcommittee, Vice 

Chairman Jim Brett, immediate past Chairman Neil Romano, and Dr. Rick Rader for 

their many hours of work in developing the framework and NCD’s Senior Staff Attorney 

Advisor Amged Soliman for spearheading the work of the subcommittee.

One out of every four people in this country and our territories report having a disability. 

Disability, whether acquired at birth or over the course of one’s lifetime, is a natural part 

of the human condition. The fact that the significant health disparities between people 

with disabilities and their nondisabled counterparts have been known but not addressed 

can no longer be tolerated. The fact that disability-based discrimination continues 

systemically and pervasively within our healthcare sector with the support of federal 

funds is alarming and should be a concern to all.

In his special message to the Congress on national health needs, in February 1962, 

President John F. Kennedy stated “. . . one true measure of a nation is its success in 

fulfilling the promise of a better life for each of its members. Let this be the measure of 

our nation.” Approaching 32 years ago this July, a federal promise was made to people 

with disabilities - a promise of independence, freedom of choice, control of their lives 

and the opportunity to blend fully and equally into the rich mosaic of the American 

mainstream; or as articulated by President George H.W. Bush, “a federal guarantee of 

fair and just access to the fruits of American life.” We have failed in that promise. 

Attaining and maintaining good health is the predicate for engaging in every aspect of 

American life. As long as maternal health disparities exist between women with 
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physical, sensory or intellectual disabilities compared to women without disabilities; as 

long as people with physical, intellectual or developmental disabilities have a life 

expectancy that is less than half of someone without disabilities; as long as people with 

disabilities are significantly more likely to have unmet medical, dental and prescription 

needs than those without disabilities; and as long as disability-based discrimination 

remains pervasive and systemic throughout our healthcare system aided by federal 

funds, our great nation carries a shameful blot on its measure of success. 

We look forward to engaging the Administration, Congress, our federal partners, and 

the disability community on the details of our Health Equity Framework and making the 

current absence of all of its components historical reference.

In Solidarity,

Andrés J. Gallegos

Chairman