Improving the Health of People with Disabilities

CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) ensures that people with disabilities have the same opportunity for good health as people without disabilities.

Disabilities may include difficulty with movement; hearing; seeing; or concentrating, remembering, or making decisions. One of every five adults in the United States has some type of disability, and many people will experience a disability during their lifetimes.

Compared to adults without disabilities, adults with disabilities are more likely to be obese, smoke, have high blood pressure, and be physically inactive. These are all preventable factors that can increase the risk for chronic diseases, such as heart disease, stroke, diabetes, and some cancers, which are also more common among adults with disabilities.

Budget

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Accomplishments

• Launched the Physical Developmental Delays: What to look for tool designed for parents who are concerned about the physical development of their child, but do not have a diagnosis. It was developed as part of a 3-year collaboration between NCBDDD and the American Academy of Pediatrics (AAP) in response to research generated from NCBDDD’s Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet). The tool is an interactive checklist which gives parents the language and support they need to talk to their child’s doctor about developmental concerns. 
• Created Fragile X Myth Buster handouts for families and pediatricians to address misperceptions that can contribute to a delayed or missed diagnosis of fragile X syndrome (FXS). This project was developed as part of a collaboration with AAP to help pediatricians decrease the time between suspecting a developmental delay to getting the correct genetic test and diagnosis of FXS.
• Nineteen State Disability and Health Programs and two National Centers on Disabilities were awarded cooperative agreements to work to improve the health and quality of life among people with mobility limitations and/or intellectual disabilities through adaptation and implementation of evidence-based strategies in their communities, and at the state level. These 19 state programs ensure that individuals with disabilities are included in ongoing activities that prevent disease and promote health within the state. The National Centers on Disability—Special Olympics and the National Center on Health, Physical Activity and Disability (NCHPAD)—develop, implement, evaluate, and report on activities aimed at reducing health differences between people with and without disabilities and improving the health of people with mobility limitations and/or intellectual disabilities across their lifespans.
• Released Emergency Preparedness: Including People with Disabilities, an online catalog of materials developed by NCBDDD-funded disability and health programs to support emergency preparedness and response activities for people with disabilities. The catalog includes materials for identifying the needs of people with disabilities; communication and training; and assessment of emergency plans, shelters, and policies.
• Collaborated with the National Association of Chronic Disease Directors to fund communities within five of its State Disability and Health Programs (Iowa, Montana, New York, Ohio, and Oregon) to build disability inclusive communities. Provided technical assistance and guidance to NCHPAD, also funded by NCBDDD, for the development of their Inclusive Community Health Implementation Package (iCHIP), which was used to help the initiative. iCHIP is a set of resources and survey tools used to help communities gather and use information regarding healthy living resources for all members of the community, including persons with disabilities.

Looking to the Future

NCBDDD collects data on people with genetic disorders, birth defects, and disabilities across the lifespan in order to promote full participation for those affected. We strive to ensure that people with disabilities can fully participate in society. We will continue our research and public health programs, with an eye towards reducing health disparities and promoting inclusion for people with all types of disabilities, including those with intellectual disabilities. Health education and promotion is crucial to increase awareness. We will use all appropriate means to reach health professionals and other important audiences with information about disability and health.

Notable 2016 Scientific Publications

Kwon JM, et al. Clinical follow-up for Duchenne muscular dystrophy newborn screening: A proposal. Muscle Nerve. 2016 Aug;54(2):186-91.

Lamb M, et al. Corticosteroid treatment and growth patterns in ambulatory males with Duchenne muscular dystrophy. J Pediatr. 2016 Jun;173:207-13.

Radcliff E, et al. Factors associated with the timeliness of postnatal surgical repair of spina bifida. Childs Nerv Syst. 2016 Aug;32(8):1479-87.

Reichard A, et al. Testing the feasibility of a passive and active case ascertainment system for multiple rare conditions simultaneously: The experience in three US states. JMIR Public Health Surveill. 2016 Aug 29;2(2):e151.

Routh JC, et al. Design and methodological considerations of the National Spina Bifida Patient Registry Urologic and Renal Protocol for the Newborn and Young Child. J Urol. 2016 Dec;196(6):1728-34.

Stevens AC, et al. Adults with one or more functional disabilities — United States, 2011–2014. MMWR Morb Mortal Wkly Rep. 2016;65:1021-25.

Valdez R, et al. Public health and rare diseases: Oxymoron no more. Prev Chronic Dis. 2016 Jan 14;13:e05.

Watson KB, et al. The attributable proportion of specific leisure-time physical activities to total leisure activity volume among US adults, National Health and Nutrition Examination Survey 1999-2006. J Phys Act Health. 2016 Aug;24:1-24.