National Council on Disability (NCD)

• The National Council on Disability's (NCD) mission is to be a trusted advisor.
• NCD collaborates with people with disabilities.
• Collaborations extend to the President; Congress; federal entities; state, tribal, and local governments; and other organizations.
• NCD's advisory role focuses on disability policies, programs, procedures, and practices.
• These efforts enhance equal opportunity.
• NCD convenes stakeholders to acquire timely and relevant input for recommendations and action steps.
• NCD gathers and analyzes data and other information.
• Current debates and agendas are engaged and influenced with current research.
• Solutions are identified and formulated to emerging and long-standing challenges.
• NCD provides tools to facilitate effective implementation of policies.
• NCD was first established as the National Council on the Handicapped in 1978.
• It began as a small advisory council under the Department of Health, Education, and Welfare.
• This initial establishment was through the Rehabilitation, Comprehensive Services, and Developmental Disabilities Amendments of 1978.
• NCD became an independent agency in 1984 via Public Law 98-221, known as the Rehabilitation Amendments of 1984.
• Its name was changed by Public Law 100-630, the Handicapped Programs Technical Amendments Act of 1988, on November 7, 1988.
• NCD was charged with reviewing federal disability programs and policies in 1988.
• In 1986, NCD recommended enacting an Americans with Disabilities Act (ADA).
• NCD drafted the first version of the ADA bill, which was introduced in Congress in 1988.
• NCD is composed of nine members.
• Four members are appointed by the majority and minority leadership in Congress.
• Five members are appointed by the President.
• NCD advises the President, Congress, and executive branch agencies.
• This advice promotes the goals of the Americans with Disabilities Act.
• These goals include equality of opportunity, economic self-sufficiency, independent living, and full participation in society.
• These goals apply regardless of the type or severity of disability.
• A person's ability to live, learn, and earn is based on the ability to attain and maintain access to appropriate healthcare.
• Good health for people across all categories of disabilities has been elusive due in part to barriers and bias within the US healthcare system.
• The failure of the US healthcare system to appropriately consider and treat 26% of the US population has caused many people with disabilities to only utilize the healthcare system for acute episodes or basic disease management instead of disease prevention or general wellness, and may even view the healthcare system as a source of potential harm.
• Barriers and biases within the US healthcare system are due to a lack of disability cultural competency curricula in medical, nursing, and other health professional schools
• Significant health disparities exist between people with disabilities and their nondisabled counterparts as a result of the barriers and biases, and are particularly acute in certain disability subpopulations.
• The life expectancy of individuals with physical, intellectual, or developmental disabilities in the United States today is less than that of individuals without disabilities.
• People with disabilities are more than three times as likely to have arthritis, diabetes, and a heart attack.
• People with disabilities are also significantly more likely to have unmet medical, dental, and prescription needs.
• The NCD released and continues to regularly update its Framework to End Health Disparities for People with Disabilities (Framework), after consulting with both people with disabilities and a multidisciplinary team of disability and health policy experts, and after years of the NCD's own health disparities research.
• The Framework contains five core recommendations that, if achieved, will be significant steps forward in ending health disparities for people with disabilities.

Recommendations Made by NCD Concerning Health Disparities of People with Disabilities

• The US Department of Health and Human Services (HHS) should designate people with disabilities as a Health Disparities Population.

• In September 2023, the Director of the National Institute on Minority Health and Health Disparities (NIMHD) designated people with disabilities as a Health Disparities Population.

• The designation encourages significant research into the healthcare concerns of people with disabilities by the National Institutes of Health (NIH) through funding.

• Prior to the announcement, NCD had extensively advised NIMHD of the justification in support of this recommendation.

• With the decision, HHS agreed that research is needed to understand the barriers and unmet healthcare needs faced by people with disabilities and to develop effective interventions to address them, and that this research would be facilitated through the designation.

• Congress should designate people with disabilities as a Special Medically Underserved Population under the Public Health Service Act.

• NCD continues to work with Members of Congress regarding the Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population Act (HEADs UP Act), which NCD helped draft.

• The bill aims to designate all people in the United States with intellectual and developmental disabilities (I/DD) as a “Special Medically Underserved Population” (SMUP).

• It would provide government programs aimed at increasing access of people with I/DD to essential healthcare services, including federal funding for health centers and public health infrastructure such as federally qualified health centers, eligibility to apply for federal funding to develop and operate community health centers, and access to loan repayment and training programs in workforce development and training programs for providers who treat the underserved population, including the National Health Service Corps scholarships

• NCD recommends passage of the HEADs Up Act, which would mark progress toward that end by designating an important subpopulation with specific health disparities.

• Sens. Robert P. Casey Jr., Tim Kaine, Tammy Duckworth, and Jeff Merkley introduced the Health Equity for People with Disabilities Act in the US Senate.

• The act seeks to modify certain grants to health centers that offer primary health services to medically underserved populations, ensuring that members of such populations with disabilities receive accessible health services.

• This seeks to clarify that among the groups already classified as medically underserved populations, the needs of people with disabilities will be a priority to reduce health disparities.

• Under this disability priority, health centers across the United States would also be able to use quality improvement grants to focus on improving accessibility accommodations and reducing barriers to care within their clinics, which may improve healthcare services to millions of Americans with disabilities.

• Standardized disability clinical care curricula should be required of all US medical, nursing, and other healthcare professional schools and disability competency education and training of all medical, nursing, and other healthcare professionals.

• NCD has collaborated with relevant nongovernmental organizations to raise awareness of the need to include disability clinical care and competency training in medical and nursing education programs.

• These organizations include the Association of American Medical Colleges, the Accreditation Council for Graduate Medical Education, and The Joint Commission (on hospital accreditation).

• The Accreditation Council for Graduate Medical Education and the Association of American Medical Colleges are organizing a national conference serving heads of medical education programs around this issue for March 2025.

• Improved health data collection for people with disabilities should be required across US government programs.

• The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) and the Interagency Committee on Disability Research (ICDR) relaunched and reimagined the Disability Data and Statistics Working Group.

• This working group focuses on establishing greater coordination and collaboration related to disability statistics, terminology, and data collection.

• The ICDR released a toolkit, Surveying the Landscape of Disability Data and Statistics, that catalogs federal research and resources and outlines the current federal landscape of disability data and statistics, with the intention of promoting interagency collaboration at the federal level.

• The Administration for Community Living leads a cross-agency initiative called I/DD Counts, an initiative established to maintain accurate data on the prevalence of I/DD in the United States and its territories and to improve the collection, analysis, and interpretation of the health-related data of people with I/DD.

• Accessible medical and diagnostic equipment should be required.

• The final revised Section 504 (of the Rehabilitation Act) rule by the Office for Civil Rights of the HHS included significant requirements mandating the use of accessible medical and diagnostic equipment (AMDE).

• The final rule adopts the Architectural and Transportation Barriers Compliance Board’s (US Access Board) standards for AMDE, making them required and enforceable.

• Within two years of the effective date, recipients using examination tables and/or weight scales must have at least one accessible version of the equipment.

• This historic rulemaking cited to and incorporated many of NCD’s research-based recommendations, including its repeated advisement to require AMDE.

• The NIH is working on developing accessible home medical tests for people with disabilities.

• NIH seeks to make improvements in the design of home medical tests in three focus areas: individuals who have low or no vision, individuals with fine motor skill difficulties, and older adults.

  • Issues to be addressed include: the need for more intuitive test packaging, the need for clearer instruction, the need for easier maneuver test components (small test components, difficult to manipulate, frequent accidental test damage or contamination), and the need for more descriptive results (currently, they often lack a clear readout and lack a nonvisual means of result interpretation).
  • The goal is to ensure that tests that consumers use in their homes are accessible for people with vision disabilities and disabilities that impact dexterity.

• HHS, Office for Civil Rights, entered into a settlement with the New Jersey Imaging Network to resolve a civil rights complaint of disability discrimination based on Section 504 of the Rehabilitation Act and Section 1557 of the Affordable Care Act.

• The settlement ensures that New Jersey Imaging Network will comply with the law, including newly issued rules, by having processes and procedures in place to provide people with disabilities the same access to care as those without disabilities by providing the same appointments and ensuring access to appropriate equipment.

• Under the terms of the settlement, New Jersey Imaging Network will:

  • Revise its existing policies and practices to make appointments available during normal business hours to all patients.
  • Document requests for mobility assistance or other reasonable accommodations.
  • Provide patients with a description of available accommodations.
  • Notify patients of their rights under the law.

The National Council on Disability (NCD) serves as a trusted advisor, collaborating with various stakeholders to enhance equal opportunity for people with disabilities. NCD focuses on disability policies, programs, procedures, and practices. They gather data, analyze information, and identify solutions to emerging challenges.