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 unhealthy 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 participate fully in their communities. CDC works to ensure that people of all abilities can live their lives to the fullest.
- Launched three new 5-year funding cycles to support national and state programs to reduce health inequities and improve health outcomes for people with disabilities throughout their lives.
- Supported projects to address the greater impact of COVID-19 on people with disabilities:
- Included disability champions within 14 state, 1 territorial, and 10 city and county health departments within public health emergency preparedness and response programs. These programs helped to ensure that (1) issues impacting people with disabilities are considered in planning and emergency response efforts and (2) local emergency response plans are updated to better serve the needs of people with disabilities during outbreaks, pandemics, and other national emergencies.
- Developed and launched an online central repositoryexternal icon of COVID-19 resources. This repository provides technical assistance and training for health departments and organizations that serve people with disabilities. The online repository also offers informational resources for audiences who may need connections and referrals to local emergency services and support.
- Developed a suite of COVID-19 resources, in both English and Spanish, for people with intellectual and developmental disabilities who also have literacy challenges, their direct care service providers, and healthcare professionals. These resources included posters, interactive activities, stories, videos, and tip sheets. They are housed on a dedicated web platform for easy access.
- Expanded surveillance and research to improve the lives of people living with congenital heart defects (CHDs), spina bifida, and muscular dystrophies. Examining 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 2021, NCBDDD
- Highlighted the healthcare needs and characterized health outcomes among the growing population of people with CHDs. NCBDDD studies showed that adults living with CHDs may be more likely than the general population to report additional cardiovascular issues, such as heart failure and stroke. Additionally, women with CHDs may have a higher risk of some pregnancy-related health complications than women without CHDs. NCBDDD also funded eight state health departments to examine how and when critical CHDs are diagnosed and any differences in time of diagnosis between different populations.
- Informed standards of care and treatment for patients with spina bifida. NCBDDD and investigators from the National Spina Bifida Patient Registry compared surgery during pregnancy versus after delivery for children with myelomeningoceleexternal icon, the most serious type of spina bifida. This research helps inform conversations between healthcare providers and parents about potential risks of surgery during pregnancy for expecting mothers and their infants with spina bifida. Through a quality improvement project among pediatric and adult clinics, NCBDDD also continued to address the care needs of people living with spina bifida as they transition from childhood to adult care.
- Better described the characteristics of people living with muscular dystrophies. Data from NCBDDD’s Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet) showed that, compared to non-Hispanic white males, Duchenne and Becker muscular dystrophies were more common in Hispanic males, but less common in non-Hispanic Black malesexternal icon. Another NCBDDD study from MD STARnet described the sociodemographic, clinical, and mortality characteristics of individuals with seven types of muscular dystrophiesexternal icon.
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 will 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 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. Additionally, CDC is committed to the ongoing efforts to expand surveillance systems by including disability status measurements in national surveys. 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
- Glidewell MJ, Farr SL, Book WM, et al. Individuals aged 1–64 years with documented congenital heart defects at healthcare encounters, five U.S. surveillance sites, 2011–2013.external iconAm Heart J. 2021;238:100-108.
- Khavjou OA, Anderson WL, Honeycutt AA, et al. State-level health care expenditures associated with disabilityexternal icon. Public Health Rep. 2021;136(4):441-450.
- Okoro CA, Strine TW, McKnight-Eily L, et al. Indicators of poor mental health and stressors during the COVID-19 pandemic, by disability status: a cross sectional analysisexternal icon. Disabil Health J. 2021;14(4):101110.
- Oster ME, Riser AP, Andrews JG, et al. Comorbidities among young adults with congenital heart defects: Results from the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG — Arizona, Arkansas, and Metropolitan Atlanta, 2016–2019. MMWR Morb Mortal Wkly Rep. 2021;70(6):197–201.
- Rogers-Brown JS, Wanga V, Okoro C, et al. Outcomes among patients referred to outpatient rehabilitation clinics after COVID-19 diagnosis — United States, January 2020–March 2021. MMWR Morb Mortal Wkly Rep. 2021;70(27):967–971.
- Ryerson AB, Rice CE, Hung M, et al. Disparities in COVID-19 vaccination status, intent, and perceived access for noninstitutionalized adults, by disability status — National Immunization Survey Adult COVID Module, United States, May 30–June 26, 2021. MMWR Morb Mortal Wkly Rep. 2021;70(39):1365–1371.
- Tanaka ST, Yerkes EB, Routh JC, et al. Urodynamic characteristics of neurogenic bladder in newborns with myelomeningocele and refinement of the definition of bladder hostility: Findings from the UMPIRE multi-center study.external icon J Pediatr Urol. 2021;17(5):726-732.
- Verlenden JV, Zablotsky B, Yeargin-Allsopp M, et al. Healthcare access and utilization for young adults with disability: U.S., 2014-2018.external icon J Adolesc Health. Published online October 15, 2021.
- Worley G, Greenberg RG, Rocque BG, et al. Neurosurgical procedures for children with myelomeningocele after fetal or postnatal surgery: a comparative effectiveness study.external icon Dev Med Child Neurol. 2021;63(11):1293-1301.
- Zhang Y, Mann JR, James KA, et al. Duchenne and Becker muscular dystrophies’ prevalence in MD STARnet surveillance sites: An examination of racial and ethnic differences.external icon Neuroepidemiology. 2021;55(1):47-55.