Federal Agency Profile
The National Council on Disability (ncd.gov) sounds just like a run-of-the-mill national disability rights organization of some sort. In reality, it’s a small – but mighty – independent, bipartisan federal government agency whose tiny size belies its impact and storied history.
With fingerprints a plenty on many of the disability community’s significant achievements over the years, including recommending and being the origin of the first draft of the Americans with Disabilities Act, the small agency of nine Members appointed by the President and leadership in the House and Senate, plus a professional staff of just over 10 is a trusted advisor to the nation’s federal policymakers on an array of policy topics touching every aspect of life.
Purely advisory in its mandate, NCD makes its mark by researching and then advising policymakers on recommended courses of action to improve the lives of people with disabilities across America, and many recommendations have been related to accessible healthcare. For instance, NCD worked with the American Dental Association and the Commission on Dental Accreditation to revise standards to facilitate patients with disabilities’ access to care by providers actually trained to treat them, and NCD played a pivotal role in the revision of federal regulations that now require the use of accessible medical diagnostic equipment (exam tables and weight scales) in federally funded health centers.
Because NCD touches all topics, cradle to grave, for all people with all disabilities, it can mean work on charter school policy in the morning; competitive, integrated employment at lunch; and disability disparities in U.S. territories to end any given day. For that reason, NCD’s leadership has striven to utilize organizing themes for its work, to help bring cohesion to disparate topics and help cast an overall vision of what the agency is working toward.
After many years organizing its work around seeking to eliminate health disparities as a prerequisite to accessing living, learning, and earning, NCD recently selected a new theme and vision of “building a disability middle class” as a way to organize its future projects in the years to come.
Each spring, NCD’s bipartisan appointed members propose a slate of projects to one other for the next fiscal year based upon areas of concern identified from their respective personal, professional, and affiliation-based ties with the disability community. Council members vote for their top three picks, which the staff work to scope, research, and produce into fulsome policy advisement in the year following.
In May, the Council members selected three new topics for fiscal year 2027, which begins October 2026. Those topics include the impact of artificial intelligence on people with disabilities; the portability of Medicaid home- and community-based services across state lines; and an update on the trends and new dangers of assisted suicide laws on people with disabilities.
As work to scope those three new projects begins, NCD is also continuing or concluding work on currently open projects, which are set for release in coming months, including:
A state, local, territory, and tribal (SLTT) emergency management toolkit, which will include promising practices and guidance to local emergency management entities on how to create an emergency management plan inclusive of people with disabilities.
A report on the disability experience in Indian country. American Indians have the highest prevalence of disability than any marginalized community in the U.S., and American Indians with disabilities living on tribal lands experience additional barriers unique to Indian country. This report will address the increased prevalence of disability and discuss the barriers that exist and services and policies available to American Indians living with a disability on tribal lands, as well as the infrastructure of the Indian Health Service and the connection to the high rates of disabilities for Tribal Members.
Disability clinical-care education and disability competency training. The lack of such training among medical, nursing, and other healthcare professionals contributes to the disparate health outcomes of people with disabilities, is detrimental to quality of care, can contribute to delays in diagnosis and treatment and unsafe or inadequate care, and can perpetuate discrimination in healthcare against people with disabilities. While some medical schools and residency programs in the US do provide such training, the overwhelming majority do not. Consequently, physicians often lack the knowledge, experience, and skills to meet the needs of people with disabilities. NCD’s policy brief will provide pointed recommendations seeking to redress this long-ignored problem.
Young adults with disabilities in nursing facilities. Insufficient information exists on the characteristics and frequency of younger nursing facilities’ residents and the challenges they face in returning to the community. In particular, it remains unclear how the COVID-19 public health emergency’s substantial impacts on the nursing facility sector impacted the institutionalization of younger people with disabilities. Further, it has been difficult for researchers to assess compliance with requirements regarding assisting nursing facility residents to return to the community due barriers in obtaining key data from the Centers for Medicare & Medicaid Services (CMS). A 2016 guidance document issued by the Department of Health and Human Services’ Office of Civil Rights expressed concern that many nursing facilities are misinterpreting the requirements of certain data requirements. This represents a serious potential obstacle to the full realization of the rights of people with disabilities to live in home- and community-based settings. NCD is seeking to obtain additional data in hopes of analyzing the impact of state policies and facilitating greater policy and research efforts to divert younger people with disabilities from future nursing facility placement and support the transition of existing younger residents back to the community.
After each of NCD’s reports is released, its team educates and informs its colleagues across government on findings and recommendations offered. Advocates from nonprofits across the country also use NCD’s reports in similar fashion – to validate concerns, point to recent federal research, and offer practical solutions and next steps.
Over nearly 50 years of NCD’s existence, this combination of internal-to-government and external reinforcement has proven a winning combination, regularly securing policy developments that help improve the quality of life for Americans with disabilities and solidifying the great value and legacy of such a small federal agency.