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On February 14, 2022, the National Council on Disability (NCD) issued the Health Equity Framework. Within the framework is a call to action involving an “all-of-government approach to comprehensively address the health needs of the over 64 million people with disabilities in this country and in our territories.” Some might wonder why such strong language is used, but most in the disability community understand that people with disabilities will continue to experience life-threatening health disparities without strong and assertive action.

Health disparities- described as preventable differences in the burden of disease, injury, violence, or opportunities to achieve optimal health experienced by socially disadvantaged populations have impacted people with disabilities for decades. They are even further magnified based on race and ethnicity.

People with intellectual/developmental disabilities (IDD) are at particular risk for health disparities because they often have trouble accessing appropriate health and dental care for both acute needs and preventive care. As a result, they have an increased prevalence of chronic conditions such as diabetes, cardiac disease, and stroke.

The NCD’s Health Equity Framework provides four specific, actionable steps for addressing the root causes of health disparities in people with disabilities. It’s time for the federal government, healthcare community, and disability community to come together and take collective action to ensure we make the Council’s recommendations a reality by:

  1. Designating people with disabilities as a Special Medically Underserved Population (SMUP) under the Public Health Services Act
  2. Requiring comprehensive disability clinical-care curricula in all US medical, nursing, and other healthcare professional schools and require disability competency education and training of medical, nursing, and other healthcare professionals
  3. Requiring the use of accessible medical and diagnostic equipment
  4. Improving data collection concerning healthcare for people with disabilities across the lifespan

For decades, people with disabilities and advocates have sounded the alarm about the need to support people to attain and maintain good physical and mental health as a prerequisite to achieving the best possible quality of life. Yet we still have a healthcare system that has, in the words of the Council, “failed 26% of the United States population, so much so that people with disabilities utilize the healthcare system for disease management instead of disease prevention and can even view the healthcare system as a source of potential harm”.

Inaction is no longer an option. You can make a difference by reaching out to your local public health department to talk about the unique needs of people with IDD, encouraging medical and nursing schools in your community to incorporate disability-specific training in their curricula, talking with your healthcare provider about the importance of accessible medical and diagnostic equipment, and exploring ways in which healthcare data collection can be leveraged to the benefit of people with disabilities.

Together we can work to ensure that everyone, with or without a disability, has the opportunity to receive capable, compassionate, and competent healthcare in their communities.

About the author: Lorene Reagan RN, MS, Director of Public Relations at IntellectAbility, is a career-long IDD nurse and former state IDD Bureau Chief, Medicaid Policy Administrator and national consultant to state Medicaid programs. She is always interested in talking with others about health equity for people with IDD and can be reached in office at 727-437-3201.

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