Recently, the National Institute on Minority Health and Health Disparities announced the designation of people with disabilities as a population with health disparities for research supported by the National Institutes of Health. Research has shown that people with disabilities may experience a wide range of health conditions leading to poorer health outcomes and shorter life spans than their peers without disabilities. In addition, discrimination, inequality, and lack of accessible programs and facilities mean people with disabilities may not have access to adequate healthcare. This designation recognizes the importance and need for research to understand and address the complexities leading to disparate health outcomes among people with disabilities.

NIDILRR-funded research to identify and address health disparities and disparities in healthcare access spans disability types and age groups. Here are some of the projects currently working in this space:

• The Context of Living with Spinal Cord Injury: A Program of Collaborative Research Advancing the Science of Environmental Factors and Disability is a multisite collaborative project that includes research to improve the capacity of the national SCI Model Systems (SCIMS) database to conduct ongoing research in geographic disparities in outcomes; to generate robust estimates of geographic, racial/ethnic, and rural-urban health disparities; and to identify the processes that shape health disparities by engaging with people with SCI as they navigate community places.
• Impacts of Internalized, Interpersonal, and Systemic Ableism in Healthcare Services and Systems: A Field-Initiated Project Program 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.
• Michigan Spinal Cord Injury Model Systems (MI-SCIMS) includes collaborative modules of research to identify and enhance understanding of health and healthcare disparities, health management, and healthy aging of individuals with SCI.
• National Center for Disability and Pregnancy Research (NCDPR) 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.
• Northern New Jersey Traumatic Brain Injury System (NNJTBIS) is leading a collaborative modular project utilizing a mixed methods approach to move beyond identifying the existence of health disparities in TBI rehabilitation by examining the ways in which the social determinants of health are associated with the persistence of those disparities.
• RRTC on Equity in Health and Functioning for Adults with Physical, Cognitive, Sensory, and Developmental Disabilities from Marginalized Communities aims to identify and address healthcare 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.

In addition to these, NIDILRR funded the National Survey on Health and Disability (NSHD), which has been fielded four times between 2018 and 2022. The survey has helped gather information about unmet healthcare needs, access to insurance, the impact of COVID on health and access to health services, and much more. Currently, the NIDILRR-funded project Using the NSHD Panel to Document the COVID-19 Pandemic Experiences of Working-Age Americans with Disabilities is exploring and documenting the COVID-19 pandemic-related experiences of working-age adults with disabilities and suggests meaningful interventions and policy initiatives to support their health and function, employment, and opportunities for community living. The 2023 survey is currently open and collecting new data, including new pandemic-related issues as they arise. Explore publications presenting findings from the NHSD.

Our Research In Focus series has highlighted many studies from the grantee community that explored disparities in health and healthcare access, including several that used data from the NSHD:

• Adults with Disabilities Get More Preventive Care, but Less Dental Care, Than Adults without Disabilities
• Adults with Intellectual and Developmental Disabilities from Racial and Ethnic Minority Groups May Perceive Different Barriers to Healthcare than Their White Peers
• Adults with Intellectual and Developmental Disabilities May Face Challenges to Staying Physically Active
• Even with Health Insurance, Transgender People with Disabilities May Have More Unmet Healthcare Needs than Their Cisgender Peers
• Even with Health Insurance, Working-Age Americans with Disabilities May Not Always Get the Healthcare They Need
• Expanding Medicaid Programs May Allow More People with Disabilities to Participate in the Workforce
• People with Childhood Disabilities May Be at Higher Risk for Chronic Diseases as Young Adults
• People with Serious Mental Illness May Be at Risk for Obesity and Diabetes
• People with Traumatic Brain Injury May Be More Likely to Use Prescription Opioids and at Higher Risk for Opioid Misuse
• SCI Advocates and SCI Practitioners Share Their Strategies for Successfully Navigating the Complex Healthcare System
• Sexual and Gender Minorities with Autism Spectrum Disorder May Face Challenges to Getting Needed Healthcare
• Wheelchair Breakdowns May Be Linked to Health Consequences for People with Spinal Cord Injuries
• Which health problems are most common for people aging with physical disabilities?

Our librarians will continue to follow the research from the NIDILRR community and the wider disability and rehabilitation research community on this important topic. If you are interested in learning more about health disparities research, you may want to search the NIDILRR Program Database for current and completed projects or explore what we have collected in the NARIC library by searching in REHABDATA. Our information specialists can also help with your search and in accessing articles and reports on this topic.