Improving Health of People with Disabilities
CDC’s 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, hearing, seeing, concentrating, remembering, 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 health promotion programs for the same reasons everyone else does–to stay well, active, and part of the community. CDC works to make sure that people of all abilities are able to live their lives to the fullest.
Accomplishments
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Updated the clinical care considerations for individuals with Duchenne muscular dystrophy to improve their care and quality of life. This set of three articles, funded by NCBDDD and published in Lancet Neurology, offers an update of the original articles from 2010, and outlines the latest clinical considerations. These consensus-based care considerations are intended to raise the standards of care and provide physicians, families, and caregivers with information to provide and manage the best possible care for people with Duchenne. They cover 11 medical subspecialties, including three new topic areas:
- Endocrinology/bone health;
- Primary care and emergency care; and
- Healthcare transition from pediatric to adult care.
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Advanced better public health programs for people with disabilities by providing interactive, customizable access to state-level disability data via CDC’s Disability and Health Data System (DHDS). CDC updated DHDS to include the latest 2016 Behavioral Risk Factor Surveillance System (BRFSS) data on U.S. adults with disabilities, including cognitive (serious difficulty concentrating, remembering, or making decisions); mobility (serious difficulty walking or climbing stairs); vision, self-care, independent living; and – for the first time – deafness or serious difficulty hearing. DHDS provides state-level disability data on approximately 30 health indicators, such as smoking, heart disease, and receiving the flu vaccine. To promote the use of DHDS and show how the data can be used to plan for disability inclusive programs and services, NCBDDD developed, in collaboration with the National Association of Chronic Disease Directors (NACDD), two webinars (“DHDS: Beginner’s Guide” and “DHDS: Beyond the Basics”) as well as one NACDD-sponsored podcast (Health Yeah!External).
- Disseminated the newest prevalence data on U.S. adults with disabilities by disability type and healthcare access. Using 2016 BRFSS data, researchers found that 1 in 4 U.S. adults – 61 million Americans – have a disability, with mobility disability being the most common, followed by cognitive disability. Disability-specific differences in healthcare access are common, particularly among young and middle-aged adults. This information enables healthcare professionals to address barriers to healthcare access, ensure inclusivity in public health programs, and improve the health of people with disabilities. These data were published in CDC’s Morbidity and Mortality Weekly Report.
- Targeted various opportunities for improving the health of people with intellectual and developmental disabilities (IDD) by funding 10 State Disability and Health Programs to analyze Medicaid data and identify patterns of health and healthcare utilization among people with IDD. Working with NCBDDD, awardees reviewed data showing the most common health conditions for outpatient care and emergency department visits. They have also begun to produce informational videos focused on diabetes self-management education and support for people with IDD, their caregivers, and healthcare providers.
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Initiated efforts to help individuals with disabilities and/or potentially disabling long-standing conditions transition from pediatric to adult care. CDC convened a coalition of 33 partners to develop actionable steps they could take to ensure that short- and long-term changes occur to achieve smooth transition for individuals with disabilities and/or with disabling, long-standing conditions. To further address this common goal of smoother healthcare transitions, the coalition will continue to meet to discuss
- Clinical practice and coordination issues;
- Access to care; and
- Family and self-readiness for transition.
CDC is dedicated to promoting inclusive communities, programs, and policies that provide opportunities for people with disabilities to live full, healthy lives. CDC will continue to educate families and stakeholders about the need for public health programs that are fully accessible to all. By providing effective tools and resources to increase access to healthcare services and by promoting the healthy development of people with disabilities across the lifespan, CDC hopes to narrow health differences between people with and without disabilities.
Notable Scientific Publications
Alabi NB, Thibadeau J, Wiener JS, et al. Surgeries and health outcomes among patients with spina bifidaExternal. Pediatrics. 2018;142(3):e20173730.
Birnkrant D, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: Diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional managementExternal. Lancet Neurol. 2018;17(3):251-267.
Birnkrant D, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: Respiratory, cardiac, bone health, and orthopaedic managementExternal. Lancet Neurol. 2018;17(4):347-361.
Birnkrant D, Bushby K, Bann CM, et al. Diagnosis and management of Duchenne muscular dystrophy, part 3: Primary care, emergency management, psychosocial care, and transitions of care across the lifespanExternal. Lancet Neurol. 2018;17(5):445-455.
Courtney-Long EA, Stevens AC, Carroll DD, Griffin-Blake S, Omura JD, Carlson SA. Primary care providers’ level of preparedness for recommending physical activity to adults with disabilities. Prev Chronic Dis. 2017;14:E114.
Glidewell J, Book W, Raskind-Hood C, et al. Population-based surveillance of congenital heart defects among adolescents and adults: surveillance methodologyExternal. Birth Defects Res. 2018;1-9.
Hinton CF, Kraus LE, Richards TA, Fox MH, Campbell VA. The guide to community preventive services and disability inclusionExternal. Am J Prev Med. 2017;53(6):898-903.
Kruger J, Hinton CF, Sinclair LB, Silverman B. Enhancing individual and community disaster preparedness: Individuals with disabilities and others with access and functional needsExternal. Disabil Health J. 2018;11(2):170-173.
McDermott S, Royer J, Cope T, et al. Using Medicaid data to characterize persons with intellectual and developmental disabilities in five U.S. statesExternal. Am J Intellect Dev Disabil. 2018;123(4):371-381.
Okoro C, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of disabilities and health care access by disability status and type among adults – United States, 2016. MMWR Morb Mortal Wkly Rep. 2018;67:882-887.
Duchenne Muscular Dystrophy: Updated Resource to Guide CareExternal
Listen as Georgina Peacock, Director of the Division of Human Development and Disability at CDC, discusses updated considerations that can help improve care for people who have Duchenne muscular dystrophy.
Spotlight On: Special Olympics
Special Olympics and NCBDDD have been working together for 16 years to prevent injury, illness, and premature death for people with intellectual disabilities by improving equitable access to quality health care, education, and services. This partnership for health is particularly powerful. In the United States, there are more than 675,000 athletes who compete in Special Olympics that are being reached through programming, education, prevention activities and healthcare partnerships. Further, with more than 135,000 coaches and 686,500 volunteers, there are many community members influencing the health of the athletes.
Jackie Kennedy, an athlete with Special Olympics Connecticut, attended the 2017 Summer Games to compete in track and field. What she got was so much more than a medal. Jackie was one of 643 athletes who visited Special Olympics Healthy Athletes – a program that provides free health screenings in a fun, welcoming environment (surrounding area and conditions). During the dental screening, Jackie learned she had an abscessed tooth that needed immediate care. Through partnerships with the University of Connecticut School of Dental Medicine and the Department of Developmental Services, Special Olympics was able to refer Jackie for immediate follow-up treatment at a place where providers were trained to work with people with intellectual disabilities. These providers worked to ensure it was a positive experience, helping Jackie become more trusting of doctors and dentists, ensuring her much-needed urgent care was of the highest quality. “I don’t get to go to the dentist and doctor as often as I need to. I look forward to Healthy Athletes screenings every year,” explained Jackie. “It’s the best thing that Special Olympics offers.”
Special Olympics Health is working to ensure Special Olympics athletes can perform at their best, on and off the field, and have equal access to quality health care, health education, and resources. Our impact on the health and well-being of Special Olympics athletes in the United States is substantial, in some cases saving lives by discovering unknown health issues or providing partnerships to health care that otherwise would not be available. We not only serve these athletes but also train healthcare professionals, who then return to their practices with increased knowledge of, and compassion for, people with intellectual disabilities.
