Improving Health of People with Disabilities
CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) works to ensure that people with disabilities have the same opportunities for good health as people without disabilities.
Disabilities may include difficulty with movement, attention, social interaction, hearing, seeing, concentrating, remembering, emotions, or making decisions. Many people will experience a disability during their lifetimes but having a disability does not mean that a person is not healthy or cannot be healthy. People with disabilities need healthcare services and programs that provide information for optimal health for the same reasons everyone else does—to stay well, active, and part of their communities. CDC works to ensure that people of all abilities can live their lives to the fullest.
Accomplishments
- Coordinated and hosted a CDC Public Health Grand Rounds (PHGR) titled “Addressing Gaps in Health Care for Individuals with Intellectual Disabilities.” Partners presented on efforts to improve health outcomes for people with intellectual disabilities (ID) and discussed how enhanced data can be a useful tool to help communities and healthcare professionals reach this goal. A Beyond the Data interview was produced and recorded during this PHGR, featuring prominent partners discussing disability inclusion and how to better understand the needs of people with ID. This PHGR was a first in many ways; namely, it was the first time a CDC guest hosted Beyond the Data, the first time PHGR included local disability partner organizations in an information fair, and the first time PHGR included a person with ID as a panel speaker.
- Guided the establishment of the “Disability Data to Action” Community of Practice (CoP)external icon, which focuses on using disability data and information to educate and inform policymakers. The objective of the CoP is to move from simply describing health differences between people with and without disabilities to developing ways that existing disability data can be used to create policies and health promotion programs, and enable new public health efforts.
- Accelerated its surveillance and research to improve the lives of people living with congenital heart defects, muscular dystrophy, and spina bifida. Examining the health issues and needs across each phase of life can provide data to plan for services and ensure that people with these conditions receive the care they need. In 2020, NCBDDD
- Provided critical data characterizing adults with heart defects who access health care servicesexternal icon, finding that those who access health care have certain characteristics in common, including being middle age, having multiple cardiac and non-cardiac health issues, and carrying public insurance. NCBDDD also found that women with heart defects have a higher risk of pregnancy-related health issues but may not always receive recommended care. Additionally, NCBDDD established the Congenital Heart Defects Surveillance across Time And Regions (CHD STAR) project in seven sites to examine the health of people with heart defects over a 10-year time period.
- Expanded the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) to include two new surveillance sites. MD STARnet collects sociodemographic, diagnostic, clinical, and mortality information for individuals with eight types of muscular dystrophyexternal icon.
- Advanced understanding of the health of individuals with spina bifida, including assessing kidney function surveillanceexternal icon in patients with spina bifida and reporting on differences in continence ratesexternal icon among people with spina bifida in relation to ethnicity.
Looking to the Future
NCBDDD is dedicated to promoting inclusive communities, programs, and policies that provide opportunities for people with disabilities and their families to live full, healthy lives. NCBDDD plans to continue to provide guidance to stakeholders to help public health programs become fully accessible and inclusive by offering effective tools and resources to improve the accessibility of program materials focused in particular on healthy living (such as physical activity and nutrition) and COVID-19 guidance.
By turning existing disability data and information into action, NCBDDD can help ensure that everyone has the same opportunities to participate in every aspect of life to the best of their abilities and desires. Continuing to strengthen NCBDDD’s surveillance systems will help address gaps in knowledge through each stage of life, such as the often-difficult transition of health care for adolescents with disabilities into adulthood. NCBDDD will continue to promote the healthy development and inclusion of people with disabilities across their lifespans.
Notable Scientific Publications
- Chu DI, et al. Kidney function surveillance in the National Spina Bifida Patient Registry: a retrospective cohort studyexternal icon. J Urol. 2020;204(3):578–586.
- Cree RA, et al. Frequent mental distress among adults, by disability status, disability type, and selected characteristics—United States, 2018. MMWR Morb Mortal Wkly Rep. 2020;69(36):1238–1243.
- Downing KF, et al. Adverse pregnancy conditions among privately insured women with and without congenital heart defectsexternal icon. Circ Cardiovasc Qual Outcomes. 2020;13(6):e006311.
- Gurvitz M, et al. Characteristics of adults with congenital heart defects in the United Statesexternal icon. J Am Coll Cardiol. 2020;76(2):175–182.
- Hollis ND, et al. Physical activity types among US adults with mobility disability, Behavioral Risk Factor Surveillance System, 2017.external icon Disabil Health J. 2020;13(3):100888.
- Khavjou OA, et al. National health care expenditures associated with disability.external icon Med Care. 2020;58(9):826–832.
- Leeb RT, et al. Support for transition from adolescent to adult health care among adolescents with and without mental, behavioral, and developmental disorders—United States, 2016–2017. MMWR Morb Mortal Wkly Rep. 2020;69:1156–1160.
- Smith KA, et al. Differences in continence rates in individuals with spina bifida based on ethnicityexternal icon. J Pediatr Rehabil Med. 2019;12(4):361–368.
- Wallace B, et al. Characterization of individuals with selected muscular dystrophies from the expanded pilot of the Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet) in the United Statesexternal icon. Birth Defects Res. 2020 Jul 24.
- Zhao G, et al. Prevalence of disability and disability types by urban-rural county classification—U.S., 2016.external icon Am J Prev Med. 2019;57(6):749–756.