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Strategic Plan - Disabilities & Health Care Access

Reducing Disparities in Health Care Access for People with Disabilities

Group of people with hearing loss

What Is the Problem?

  • Access to quality and timely health care is critical for everyone. For people with disabilities who may have complex health conditions it is even more important.

  • Health care access encompasses much more than insurance coverage for health care services. Access includes physical access to buildings and medical appointments, attitudes of providers, and accessible transportation, health promotion programs and health information.

  • In 2010, 29% of people with disabilities report unmet health care needs compared to 12% of people without disabilities.

  • Health care access problems differ depending on type of disability.

What Do We Know?

  • The health of people with disabilities is affected not only by their disability, but also from many preventable factors. Proportionately, they experience more secondary conditions (like depression and pressure ulcers) and chronic conditions (like diabetes and stroke) than people without disabilities. Good health care is essential to achieving and maintaining good health.

  • To achieve national health goals set for the general population, health care access issues need to address the needs of the disability community. For instance, general health communication messages may need to be modified in format for people with vision or hearing loss, and may need to be simplified for people with intellectual disabilities.

  • For people with disabilities, health care access means:
    • Physically accessible facilities.

    • Accessible messages and communication services.

    • Accessible medical equipment.

    • Providers with disability knowledge, respectful attitudes, and expectations of good health for people with disabilities.

    • Programs that plan for accommodation for clinical, preventive, and health promotion services.

    • Adequate insurance coverage.

    • Available and accessible transportation.

    • Health promotion programs that are effective with people with disabilities.

What Can We Do?

  • Improve data to understand the health care access problem and enhance state-based practice.

  • Initiate implementation of public health research, programs, and policies to reduce the disparity in health care access.

  • Reduce disparities by applying data to improve practice at the state and local levels and increase disability inclusion in mainstream health care where possible, develop cross-disability programs when necessary, and build condition-specific programs when essential.

  • Improve access to health care services, including health programs and prevention services, to reduce disparities in health for people with disabilities.


  • Demonstrated major disparities in health status and health care access for people with disabilities using population-based data in CDC reports that included Vital Signs, Morbidity and Mortality Weekly Report (MMWR) QuickStats and CDC Health Disparities and Inequalities Report.
  • Documented disparities in reporting a mammogram in the past two years, with 72% of women with a disability having received a mammogram compared to 78% for women without a disability.
  • Improved communication and care of patients with disabilities, by partnering with medical schools and other health training programs to reach students in medicine, nursing, public health and other health professions.

  • The disability and health state network promote breast health screenings for women with disabilities. States have developed:
    • Training programs for technicians, women with disabilities and care providers.

    • Methods to assess the accessibility of mammogram facilities for women with physical disabilities in particular.

    • Resource materials to help women know where to go for facilities that are accessible.

  • Demonstrated that among children with special health care needs, children with reported muscular dystrophy were more likely to have family members who reported financial problems, reduced or gave up employment, and spent more than 10 hours weekly providing or coordinating care.

  • Launched the Pilot Longitudinal Data Collection to Inform Public Health for Fragile X Syndrome. From this study, NBCDDD will learn the challenges and needs of those impacted by fragile X as they navigate from delayed diagnosis, to treatments and services, to the transition to adulthood and adult health care providers.

Looking to the Future

  • NCBDDD is working with disability and health programs to strengthen the linkages between state health agencies and women’s health and chronic disease programs. A toolbox of health care resources for women with disabilities will be developed for use by state and county health entities, local and non-government organizations, providers and researchers.

  • NCBDDD is using an expert panel process to define core competencies for public health staff who work in disabilities, and a curriculum that would provide necessary training.

  • Through our state disability and health network, we are specifically funding states to assess and address health care access in facilities and equipment.

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Notable 2011 ncbddd scientific publications

  • Brustrom J, Thibadeau J, John L, Liesmann J, Rose S. Care Coordination in the Spina Bifida Clinic Setting: Current Practice and Future Directions. J Pediatr Health Care. 2012 Jan;26(1):16-26. Epub 2010 Jul 10.
  • Fang X, Massetti GM, Ouyang L, Grosse SD, Mercy JA. Attention–deficit/hyperactivity disorder, conduct disorder, and young adult intimate partner violence. Arch Gen Psychiatry 2010;67(11):1179–86.
  • Farr SL, Bitsko RH, Hayes DK, Dietz PM. Mental health and access to services among U.S. women of reproductive age. Presented at the 23rd Annual Meeting of the Society for Pediatric and Perinatal Epidemiologic Research, Seattle (WA), June 22–23, 2010. American Journal of Obstetrics and Gynecology 2010;203(6):542.e1–9.
  • Holmbeck GN, Alriksson–Schmidt AI, Bellin MH, Betz C, Devine KA. A family perspective: How this product can inform and empower families of youth with spina bifida. Pediatr Clin North Am. 2010;57(4):919–34.
  • Kemper AR, Ouyang L, Grosse SD. Discontinuation of thyroid hormone treatment for US children with congenital hypothyroidism: Findings from health insurance claims data. BMC Pediatrics 2010;10(9):1–6.
  • Ouyang L, Grosse SD, Raspa M, Bailey DB. Employment impact and financial burden for families of children with fragile X syndrome: findings from the national fragile X survey. Journal of Intellectual Disability Research 2010;54:918–28.
  • Ouyang L, Grosse SD, Swanson M, Thibadeau J, Campbell V. Outpatient medical conditions among children and adults with spina bifida in the United States: Frequency and expenditures. Journal of Pediatric Rehabilitation Medicine 2010; 3(3):177–185.
  • Swanson ME, Dicianno BE. Physiatrists and developmental pediatricians working together to improve outcomes in children with spina bifida. Pediatri Clin North Am 2010;57(4):973–81.
  • Thibadeau JK, Alriksson–Schmidt AI, Zabel TA. The national spina bifida program transition initiative: the people, the plan, and the process. Pediatri Clin North Am 2010;57(4):903

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