On May 1^st, Health and Human Services (HHS) Secretary Xavier Becerra joined staff from the HHS Office of Civil Rights (OCR) and the Administration for Community Living (ACL), along with the director of the National Council on Independent Living (NCIL), to announce a new rule, Discrimination on the Basis of Disability in Health and Human Service Programs or Activities. This update to Section 504 of the Rehabilitation Act advances equity and bolsters protections for people with disabilities. It clarifies and strengthens civil rights protections for people with disabilities, addresses discrimination in medical treatment, adds enforceable standards for accessible medical diagnostic equipment, and ensures accessible web content and mobile apps.

Decades of advocacy, research, and development informed this historic rule, including work from grantees in the NIDILRR community. Here are just a few of their past and present projects:

Health Disparities

• Impacts of Internalized, Interpersonal, and Systemic Ableism in Healthcare Services and Systems conducts exploratory and descriptive research to identify the impacts of three levels of ableism: internalized, interpersonal, and systemic ableism to better understand how to dismantle and disrupt ableism and close meaningful health equity gaps.
• The Rehabilitation Research and Training Center on Equity in Health and Functioning Adults with Physical, Cognitive, Sensory, and Developmental Disabilities from Marginalized Communities identifies and addresses health care disparities experienced by individuals with physical, cognitive, sensory, and developmental disabilities from marginalized backgrounds through a series of interrelated research projects and rigorous training, knowledge translation, and technical assistance activities.
• Using the National Survey on Health and Disability (NSHD) to Document Experiences of Working-Age Americans with Disabilities is building on the success of the NSHD, developing new questions, and fielding new waves of the survey to document the healthcare needs of diverse people with disabilities, as well as employment and community participation. The NSHD has been fielded four times under NIDILRR-funded projects.

Access to Healthcare

• The Center for Disability and Pregnancy Research (CDPR) is a cross-disability initiative to address gaps in knowledge about pregnancy and disability, enhance the experience of pregnancy in women with disabilities, and promote optimal pregnancy-related outcomes for pregnant people with disabilities.
• Development of a Model System for Person Centered Oral Health Care Support for Individuals with Intellectual and Developmental Disabilities is building a model that facilitates both enhanced self-managed oral health care while also providing a platform for training, coaching, and coordinated care for individuals with intellectual and developmental disabilities (IDD) and their support teams.

Accessibility in Healthcare and Healthcare Technology

• The Rehabilitation Engineering Research Center (RERC) on Accessible Medical Instrumentation (2002-2009) conducted research and development to increase knowledge of, access to, and utilization of healthcare instrumentation and services by people with disabilities; and increase awareness of and access to employment in the healthcare profession by individuals with disabilities. Their work informed standards and guidelines for designing accessible medical equipment and instrumentation.
• The RERC on Universal Access to Information and Communication Technology (ICT) addresses key accessibility gaps that inhibit or prevent the use of existing and emerging ICT, from kiosks and websites to artificial intelligence. The team’s long history of NIDILRR-funded research and development from adaptive computing to accessibility guidelines for information technology, contributed to making today’s kiosks and online services accessible.

Civil Rights and Section 504

• The ADA National Network of regional centers assist people with disabilities and public and private entities in understanding their rights and responsibilities under the Americans with Disabilities Act. For example, the Pacific ADA Regional Center hosts a regular webinar series on Healthcare and the ADA.

These are just a few of the NIDILRR-funded research and development projects that have influenced this historic update to Section 504, and other efforts to address access to healthcare, education, employment, and full participation of people with disabilities in their communities. You can explore more than 3,000 current and completed projects and their publications in the NIDILRR Program Database on our website, or contact an information specialist for assistance!