An alliance of self-advocates, doctor groups and other health care leaders has a plan to transform the experiences of people with developmental disabilities as they seek medical care.

More than a dozen organizations worked alongside individuals with developmental disabilities to develop the new National Roadmap for Disability-Inclusive Healthcare, a set of goals and actions that various stakeholders should take to better prepare doctors, nurses and dentists to treat those with disabilities.

The plan, released this week, outlines steps for educational associations, regulatory and accrediting bodies and professional organizations. For example, the roadmap recommends that professional societies incentivize continuing clinical education focused on intellectual and developmental disabilities and it says that regulatory bodies should require learning about intellectual and developmental disabilities as part of licensing renewals and board certifications.

Notably, many of the groups that are empowered to make changes in the field were part of the coalition that developed the new agenda. That includes the Accreditation Council for Graduate Medical Education, which sets standards for physician residency programs nationwide, as well as the Association of American Medical Colleges, the American Dental Education Association, the American College of Physicians and the American Academy of Pediatrics.

“The National Roadmap for Disability-Inclusive Healthcare is an ambitious blueprint that can measurably change health care,” said Dr. Hoangmai Pham, president and CEO of the Institute for Exceptional Care, a nonprofit focused on improving health care for people with intellectual and developmental disabilities that brought the coalition together.

Officials with the Institute for Exceptional Care say that members of the coalition have already started to use the roadmap to work with medical associations and dental practices on changes.

Most doctors receive little if any training on developmental disabilities while in medical school and residency. As a result, research shows that just 41% of physicians feel prepared to offer people with disabilities a similar qualify of care to others.

Disability advocates have been pushing in recent years to add mandated training on intellectual and developmental disabilities to the medical school curriculum, but such efforts have fallen flat so far.

Nonetheless, there have been some signs of progress, with officials from the American Medical Association and the American Dental Association agreeing in 2022 to work toward expanding disability training for medical and dental students.

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