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Improving the Health of People with Disabilities

Young woman amputee smiling, doing sit-upsImproving 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 opportunity for good health as people without disabilities.

One in five U.S. adults have some type of physical, sensory (for example, hearing or vision), or cognitive (for example, learning, thinking, or remembering) disability, and many people will experience a disability during their lifetimes. People with disabilities (PWDs) need health programs and health care for the same reasons anyone else does – to stay well, active, and a part of the community. Yet, programs, services, strategies, and interventions developed for millions of people to lower the risk for or prevent diseases are not always available, accessible, or effective for PWDs. CDC works to make sure that people of all abilities are able to live their lives to the fullest.

Budget

Accomplishments

  • Developed, authored, and funded a supplement to the journal, Pediatrics, that focused on fragile x syndrome. This wide-ranging resource for healthcare professionals and researchers assisted their efforts to advance knowledge, treatment, and quality of life for people who have fragile X syndrome and their families. The articles contain some of the latest research on fragile X-associated disorders.
  • By increasing the number of State Disability and Health Programs funded in 2017 from four to seven, CDC has expanded the capacity to implement Medicaid data analysis activities toward improved monitoring of the health of people with intellectual and developmental disabilities (IDD). These analyses include identifying patterns of health and healthcare utilization for people with IDD. For example, a recent analysis of Medicaid information, combined with information from other sources in South Carolina between 2001 and 2011, found Medicaid members with IDD experienced more than 21,000 potentially avoidable emergency department visits with costs exceeding $35 million.
  • Expanded tracking of muscular dystrophies from two types (Duchenne and Becker) to eight to address gaps in knowledge about the percentage of people with each muscular dystrophy type, their survival, the care they receive, and differences in who receives care.
  • Delivered 22 presentations in March 2017 at the Third World Congress on Spina Bifida Research and Care that highlighted spina bifida research projects that involved either participating CDC scientists or CDC information. Information from NCBDDD’s National Spina Bifida Patient Registry was the foundation of the majority of these projects.
  • Collected information and conducted surveys to understand the number of people living with congenital heart defects (CHDs) and their long-term health outcomes. This includes a pilot project to track adolescents and adults with a CHD and a second project looking at individuals’ experiences with CHDs across the lifespan. Two of our funded sites – Emory University and New York State Department of Health – launched a survey of parents of adolescents with CHDs to assess barriers to appropriate transition from adolescent to adult heart care. In addition, the three sites in the Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CHSTRONG) are surveying young adults with CHDs and have received more than 1,000 completed surveys so far.
Annual healthcare costs associated with disability are nearly $400 billion.

Looking to the Future

NCBDDD is dedicated to promoting inclusive communities, programs, and policies that provide opportunities for people with disabilities to live a full, healthy life. NCBDDD plans to continue to educate families and other stakeholders about making programs fully accessible to all and providing effective tools and resources on improving accessibility of programs, particularly those focused on physical activity, nutrition, and obesity prevention. An important role for public health programs is addressing gaps in knowledge through each stage of life, such as the often difficult transition of health care for adolescents with mobility or intellectual disabilities into adulthood. NCBDDD will continue to promote the healthy development and inclusion of people with disabilities across their lifespans.

Notable Scientific Publications

Hinton CF, et al. The Guide Community Preventive Services and Disability Inclusion. Am J Prev Med. 2017;53(6):898-903.

Latimer R, et al. Secondary Conditions Among Males With Duchenne or Becker Muscular Dystrophy. J Child Neurol. 2017;32(7):663-70.

Phillips M, et al. PhenX Measures for Phenotyping Rare Genetic Conditions. Genet Med. 2017;19(7):834-37.

Riley C, et al. The Future of Fragile X Syndrome: CDC Stakeholder Meeting Summary. Pediatrics. 2017;139(Suppl. 3):s147-52.

Routh JC, et al. Bladder Reconstruction Rates Differ among Centers Participating in National Spina Bifida Patient Registry. J Urol. 2017;199:1-6.

Smith MG, et al. Capture-recapture Methodology to Study Rare Conditions Using Surveillance Data for Fragile X Syndrome and Muscular Dystrophy. Orphanet J Rare Dis. 2017;12(1):76.

Steele CB, et al. Prevalence of Cancer Screening Among Adults with Disabilities, United States, 2013. Prev Chronic Dis. 2017;14:e09.

Thibadeau J, et al. Understanding the Natural Progression of Spina Bifida: Prospective Study. JMIR Res Protoc. 2017;6(9):e180.

Xinling X, et al. A Longitudinal Assessment of Adherence to Breast and Cervical Cancer Screening Recommendations Among Women With and Without Intellectual Disability. Prev Med. 2017;100:167-72.

Spotlight On: National Association of County and City Health Officials | American Academy of Pediatrics | Spina Bfida Association | Tourette Association of America

Disabilities may include difficulty with movement, hearing, seeing, communicating or concentrating, remembering, or making decisions. CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) works to ensure that people of all different abilities are able to live their lives to the fullest.

Disability and Health

The National Association of County and City Health Officials (NACCHO) has worked closely with NCBDDD on efforts to support local health departments (LHDs). Recently, with funding support from NCBDDD, NACCHO completed an assessment of LHD’s maternal and child health capacity in 10 high-priority jurisdictions for Zika virus infections, based on local virus transmission and travel-related infections. The results of this assessment will help NACCHO and NCBDDD provide training and technical assistance to LHDs as they respond to the needs of their communities.

NCBDDD has been integral in supporting NACCHO’s Health and Disability program, which provides LHDs with the tools and resources needed to include people with disabilities in all department activities. In 2017, with funding support from NCBDDD, NACCHO launched an online e-learning training module, Health and Disability 101: Training for Health Department Employees. The purpose of the training is to educate health department staff about the benefits of including people with disabilities in all public health programs, products, and services.

Genetic-associated Conditions: Fragile X, Spina Bifida, and Tourette and Tic Disorders

Primary care pediatricians participated in a quality improvement learning collaborative aimed at increasing opportunities to diagnose fragile X syndrome and other genetic-associated conditions. Participating teams established and followed practice-specific protocols for the genetic testing of children with at least two domains of developmental delay. Of the number of children who had genetic testing completed during the course of this project, over 60% ended up with a confirmed genetic diagnosis. This finding was possible from the funding and support of NCBDDD.

NCBDDD supports the only federal research that looks at spina bifida  and considers the interdisciplinary teams necessary to treat people with spina bifida. The Spina Bifida Association (SBA) advocates and promotes NCBDDD’s research and findings to advance care, and expand and strengthen research to accelerate new discoveries for people, including adults with spina bifida throughout their lifespans. SBA had numerous accomplishments that advanced care and expanded and strengthened research, such as  hosting the 2017 World Congress on Spina Bifida Research & Care, launching the Adult Spina Bifida Survey, and developing Health Care Guidelines for Spina Bifida.

Comprehensive Behavior Intervention for Tics (CBIT) is a first-line medicine-free highly structured behavioral therapy for Tourette and tic disorders that has demonstrated to reduce tic severity and improve function in more than 50% of people, yet is not available to the vast majority of patients. NCBDDD’s partnership with the Tourette Association of America (TAA) offers workshops at universities and hospitals across the country to inform practitioners about this important behavioral therapy. CDC funded CBIT introductory workshops can improve the lives of patients and families who undergo CBIT, and can result in health care and disability savings. TAA Youth Ambassador Trevor Harris completed CBIT training and  Trevor no longer takes medicine for his Tourette syndrome. “CBIT is hard work but so is living with Tourette. When I want to give up, my family reminds me that I am in control and I manage my tics through CBIT.”

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