LOUISVILLE Growing up, Priya Chandan, MD, MPH, watched her older brother, who has Down syndrome, navigate the world and witnessed the challenges he faced. This experience set her on a path to a career in developmental medicine. Chandan is committed to improving healthcare for individuals with intellectual and developmental disabilities (IDD) by addressing one of the root problems: discomfort in the medical community that stems directly from a lack of clinical provider training. Chandan received a grant from the American Academy of Developmental Medicine and Dentistry and Special Olympics International as part of the National Curriculum Initiative in Developmental Medicine (NCIDM), whose mission is to bring IDD-focused curricula to medical schools.
Chandan, a physician-scientist, is an assistant professor at the University of Louisville. There she holds a joint appointment in the Department of Health Management & Systems Sciences in the School of Public Health and Information Sciences and in the Division of Physical Medicine & Rehabilitation in the Department of Neurological Surgery.
Throughout her career, Chandan had noticed how, due to medical advances, the lifespans of those with IDD had greatly increased, but knowledge among clinicians about how to interact with adults with IDD had not kept pace. “Intellectual and developmental disabilities were once considered pediatric conditions, so most providers did not get any training in this area, and we have a growing adult population that providers aren’t comfortable with,” says Chandan. “Research has shown that a lack of competence makes providers hesitant to provide care for these individuals.”
Chandan envisioned a simple fix—better training. Better training for medical students and clinicians would lead to better care for adults with IDD, and the natural place for her to start was with Special Olympics International.
“Because of personal experience with my brother, I’ve always been interested in developmental medicine, but my first experience working in this field was during an internship with Special Olympics International (SOI),” says Chandan. During this internship, she had the opportunity to work alongside SOI Healthy Athletes staff, who direct programs that offer free health services and health information to Special Olympics athletes.
Early on, SOI saw the value in expanded training for clinicians, and a partnership was established with the American Academy of Developmental Medicine and Dentistry (AADMD), and the National Curriculum Initiative in Developmental Medicine (NCIDM). Funding was secured to establish the first cohort of Medical School Partners, which includes the University of Louisville, Baylor University, and the University of Colorado. The program plans to expand to four cohorts and 12 medical schools.
The premise of NCIDM is simple. Chandan explains, “The goal is to provide training in the field of developmental medicine, which includes the care of individuals with IDD across their lifespans. Training all providers is important because these patients will be patients in every area of the healthcare system.” Inclusive health encompasses policies, services, and all aspects of medical practice.
One aspect of the program is an ambulatory elective for fourth year medical students, offering a new rotation experience at Lee Specialty Clinic. “The students who have participated are planning to go into a variety of medical fields, but they all understand the growing need for familiarity with this population,” she says. The elective has been successful and has introduced an ever-increasing number of medical students to the care of adults with IDD.
A second aspect of the program is an innovative approach for interdisciplinary clinical conference sessions with second year medical students. Medical school faculty had first envisioned adults with IDD speaking directly to students, but realized that for many with IDD, the idea of speaking in front of a group was intimidating. Chandan and her collaborators were aware of the value of this information to the students, but were cognizant of barriers the format presented, so they developed a Photovoice program to bridge the gap.
In the Photovoice program, athlete-leaders who are participants in Special Olympics Kentucky were asked some key questions, such as what advice they have for medical students. The answers to these questions were illustrated with related photographs. The final product is a package of information with pictures, quotations, and scenarios that can be used as an aid in conversations between adults with IDD and medical students, arming the athlete-leaders with a guide that empowers them to lead conversations with students on their own.
Chandan’s work also led her to the role of clinical director of MedFest, an event created by Special Olympics of Kentucky in 2005. During MedFest, both residents and practicing clinicians are recruited to provide free sports screening physicals to Special Olympics athletes. At MedFest, residents have a unique opportunity to “…gain experience working with these individuals in a non-acute setting. They are getting to know them as people and learning communication strategies to use when working with them in clinical settings.”
Though Chandan’s career has revolved around inclusive health, she realizes very few providers have had any training or the opportunity to gain skills in this area. For all clinicians, her advice is to listen to the patient with IDD, talk to them as an adult, include them in their treatment plan, and give them the same respect you would any other patient. Says Chandan, “Even though you may need the caregiver at times, it’s crucial to talk directly to the patient. The patient may need some support from a caregiver, but you need to address the patient first.”
“The goal is to provide training in the field of developmental medicine, which includes the care of individuals with IDD across their lifespan. Training all providers is important because these patients will be patients in every area of the healthcare system.”— Priya Chandan MD, MPH
“Even though you may need the caregiver at times, it’s crucial to talk directly to the patient. They may need some support from a caregiver, but you need to address the patient first.”— Priya Chandan, MD, MPH