Press Release
FOR IMMEDIATE RELEASE
IEC Releases National Roadmap for Disability-Inclusive Healthcare
Plan created to support clinicians in giving the best healthcare possible to people with intellectual and/or developmental disabilities
(March 12, 2024) – IEC (Institute for Exceptional Care) today released a plan to improve how healthcare is taught with the aim of better serving people with intellectual and/or developmental disabilities (IDD). The National Roadmap for Disability-Inclusive Healthcare lays out goals and actions influential healthcare groups can take to prepare clinicians – such as doctors, nurses and dentists – to provide more equitable care.
The Roadmap includes:
Commonsense actions for five groups – including educational associations, regulatory and accrediting bodies and professional bodies – that are particularly influential in how clinicians are taught. These groups are trusted leaders working across the nation and can bring about change now and in the future.
An ideal clinician journey that illustrates the transformative journey a clinician may take from limited IDD understanding to clinician readiness.
A call to action toward healthcare culture change nationwide.
The Roadmap was developed by a coalition of more than three dozen leaders, including people with IDD, caregivers/care partners of people with IDD, clinicians, associations that train clinicians and other healthcare leaders. Coalition members with expertise in developing standards, such as the Association of American Medical Colleges, and with experience training clinicians about IDD, such as the American Academy of Developmental Medicine and Dentistry, IntellectAbility, and ECHO Autism Communities, ensure the Roadmap is robust enough to drive change at scale.
Dr. Susan Hingle, Associate Dean for Human and Organizational Potential at the Southern Illinois University School of Medicine and member of the Action to Build Clinical Confidence and Culture (ABC3) coalition that created the Roadmap, said the development process was unique by centering the perspectives of people with IDD.
“People with IDD have been systematically marginalized and excluded, and their health outcomes have been worse because of it,” Hingle said. “Collaboration is essential to improving care. This was the most inclusive process I have been involved in.”
Dr. Hoangmai (Mai) Pham, president and CEO of IEC, said the Roadmap’s release was a critical step forward in reshaping training for practicing clinicians and clinicians-in-training.
“The National Roadmap for Disability-Inclusive Healthcare is an ambitious blueprint that can measurably change healthcare,” Pham said. “This plan demonstrates the hallmarks of IEC’s approach: learning from the lived experience of people from IDD and the perspectives of healthcare professionals and creating commonsense solutions – together – that improve care for millions of people.”
Why it Matters
Despite approximately 16 million Americans living with IDD – conditions such as autism, Down syndrome, intellectual disability and ADHD – the vast majority of clinicians get little or no training in how to care for people with IDD. Only 40 percent of physicians feel confident about their ability to provide quality care for people with disabilities.
This lack of training and confidence has led people with IDD to have a higher likelihood of unmet healthcare needs. Though people with IDD experience higher rates of mental illness and many chronic conditions, they generally receive lower-quality care and fewer preventive services, leading to unnecessary health problems and even preventable deaths.
The Roadmap is already driving action, including a collaboration among IEC, Ability Central and select partners to improve healthcare visits for people with communication challenges, thanks to funding from the Delta Dental Foundation of Michigan, Ohio, Indiana, and North Carolina and the Delta Dental Foundation of New Jersey.
To read the full Roadmap and support its vision, visit InclusiveCareRoadmap.org.
About IEC
IEC (Institute for Exceptional Care) is a national nonprofit working to make healthcare better and safer for people with intellectual and/or developmental disabilities (IDD). IEC partners with people with lived experience of IDD and healthcare professionals to change the way care is taught, delivered, and paid for by creating new programs that center patients. For more, visit ie-care.org.
About the ABC3 Coalition
Action to Build Clinical Confidence and Culture (ABC3) is a coalition of people with lived experience of IDD and healthcare experts working together to scale strategies nationally that better prepare clinicians for serving people with IDD. Founded in 2021, ABC3 undertook a collaborative process to coordinate national strategies that aim to prepare clinicians to serve people with IDD equitably and effectively. With support from the WITH Foundation, ABC3 conducted focus groups with 87 clinicians to inform the goals, actions, and desired journey for clinicians to gain confidence and used results to draft the Roadmap. ABC3 includes 37 individual and organizational members.
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