BY LAUREN AGORATUS, M.A.
“By every measure, persons with disabilities disproportionately and inequitably experience morbidity and mortality associated with unmet healthcare needs in every sphere. Minorities with disabilities are doubly burdened by their minority status.”
– “Assuring Health Equity for Minority Persons with Disabilities. A Statement of Principles and Recommendations.”
A recommendation report from the HHS Advisory Committee on Minority Health. July 2011.
People with disabilities are a recently recognized population1 affected by health disparities. Why does this happen and what can be done to address the needs of this underserved group?
HEALTH DISPARITY FINDINGS
Data indicates that individuals with disabilities are adversely affected in all healthcare areas, especially considering factors such as developmental disabilities, race/ethnicity, as well as those with mental health issues. In fact, people with significant mental health challenges may die up to 20 years earlier than their peers due to preventable physical disease, not their mental health diagnosis.2 These disparities led to the National Association of County and City Health Officials’ (NACCHO) “The Essential Elements of Local Public Health” inclusion of people with disabilities as a priority in their work supporting community public health initiatives.
WHY ARE THERE HEALTH DISPARITIES FOR THIS GROUP?
Key factors in poorer health outcomes are “social determinants” of health. About half of all preventable deaths are due to social, environmental, and behavioral factors.3 Some of these are factors relating to:
• Community/neighborhood threats such as being close to environmental hazards, having fewer safe spaces for exercise, or having higher levels of violence
• Lack of education
• General health concerns
• Insufficient access to services
• Limited – or no – disability awareness on the part of providers
Studies have found that people “with disabilities are more likely to be unemployed, impoverished, have less than a high school education, and have higher levels of risk factors such as obesity, smoking, and being physically inactive.”4 This is true for children, youth, and adults.
Besides stigma and provider awareness, other barriers include physical accessibility to healthcare provider offices, medical equipment, diagnostic testing, and interpreters for sign language.
When compared to those without disabilities, people with disabilities are:
• less likely to receive preventive care, including dental care
• at higher risk for obesity related diseases
• at higher fall risk
• at higher risk for mental illness.5
HOW TO ADDRESS DISPARITIES FOR INDIVIDUALS WITH DISABILITIES IN THEIR COMMUNITIES
Access to primary care and prevention/wellness, including immunizations for vaccine preventable disease, is the key to best health outcomes for people with disabilities. People with disabilities “are less likely to receive preventive care and health screenings despite being at a higher risk for many chronic conditions and illnesses.”6 Often, the focus is on the person’s disability or special healthcare condition rather than wellness; yet screening, immunizations, and prevention will be cost effective and improve outcomes.
Since they often see specialists, people with disabilities may not have a “medical home” and miss the care coordination that occurs in primary care.
Prevention plays a key role in addressing disparities by preventing co-morbidities. It was found that “87% of persons with disabilities reported experiencing a secondary medical condition.”7
It is also essential in planning for emergency preparedness to include consideration of people with disabilities.
Community agencies can help raise awareness of people with disabilities and health disparities and prevention/wellness. These include:
• Family to Family Health Information Centers
• Centers for Independent Living (CILs)
• Area Agencies on Aging
• Aging and Disability Resource Centers (ADRCs)
(Note: In some states, ADRCs are one entity due to partnerships with Centers for Independent Living and Area Agencies on Aging.)
NACCHO has a new factsheet released 6/17 on inclusive community health promotion. Key strategies include:
• A needs assessment on what people with disabilities require in the community
• Community partnerships and addressing health literacy (barrier to healthcare access)
• Using accessible communication (Braille, ASL, large print, TTY, language line)
• Ensuring accessibility of medical offices and equipment (see ADA checklist)
• Utilizing evidence-based practices proven effective
The Center for Disease Control and Prevention (CDC)’s Building Healthy Inclusive Communities initiative recognizes that “creating opportunities for healthy, active living by people of all abilities is a priority as we plan our communities.” It is noted that 1 in 5 people have a disability. The initiative has covered topics such as physical activity, accessible streets, etc. There is also information on the CDC website, “Disability and Health.” This section includes disability inclusion, healthy living, and resources for caregivers.
The Maternal and Child Health Bureau also focuses on this issue through AIM: The Alliance for Innovation on Maternal and Child Health, which seeks to expand access to care for maternal and child health populations including children with special healthcare needs. Family Voices (“keeping families at the center of children’s healthcare”) is a partner in the MCHB AIM grants to provide the family perspective and to share best practices in health promotion for children and youth with special healthcare needs. Family Voices’ “Impact” goal is to promote a holistic, culturally relevant approach to health and wellness for all families and children including those with special healthcare needs. Their Impact website includes tools such as a Well Visit Planner and Bright Futures guides.
Individuals with disabilities are affected by disparities in healthcare. By addressing barriers and partnering with agencies, these disparities can be reduced, resulting in better outcomes.
ABOUT THE AUTHOR:
Lauren Agoratus, M.A. is the parent of a child with multiple disabilities. Lauren serves as the Coordinator for Family Voices-NJ and as the central/ southern coordinator in her state’s Family-to-Family Health Information Center, both housed at SPAN, found at www.spanadvocacy.org
CLOSING THE GAP : HEALTH DISPARITIES RESOURCES
American Association on Health And Disability
The AAHD Health Promotion Resource Center for People with Disabilities is intended to provide visitors with current and valuable information about multiple aspects of health promotion and wellness for people with disabilities.
Family-To-Family Health Information Centers
Family Voices Impact on Health And Wellness
Centers For Independent Living
National Association Of Area Agencies on Aging
Aging And Disability Resource Centers
National Association Of County And City Health Officials
ADA Accessibility Checklist
Centers For Disease Control (CDC)
Building Healthy Inclusive Communities
Health and Disability website section
2. Liu et al. “Excess mortality in persons with severe mental disorders: a multilevel intervention
framework and priorities for clinical practice, policy and research agendas.” World Psychiatry. 2017 Feb;16(1): 30–40.
3. Spencer, Lloyd, McGinnis. “Using Medicaid Resources to Pay for Health-related Supportive Services: Early Lessons.” Center for Health Care Strategies, Inc. Brief, December, 2015.
4. Ulrich. “Challenges for People with Disabilities within the Health Care Safety Net.” Health Affairs
Blog. November 18, 2014.
5. Office of Disease Prevention and Health Promotion: Healthy People 2020 Evidenced-Based
Resources. “Access to Health Services” and “Disability and Health”.
6. “More Health Screening for People with Disabilities” American Association on Health and
Disability, March 2011.
7. Kinne, Patrick, Doyle. “Prevalence of Secondary Conditions Among People With Disabilities”.
American Journal of Public Health. 2004 March; 94(3): 443–445.
Exceptional Parent Magazine; December 2o17