Infusing IDD into Medical School Education
Pictured: Illustration showing medical students learning and studying.
Looking at the past and taking a leap into the future.
By Joanne Florio Siegel, LCSW, ACSW and Vincent Siasoco, MD, MBA
At times social change seems slow and progress barely achievable. The beginning of the disability advocacy movement can be traced as far back as to the end of World War II when disabled war veterans returned home from war and were seeking rehabilitation services and vocational training. But in the United States, it was not until the 1960’s Civil Rights movement and 1963 legislation enacting the Developmental Disabilities Services and Facilities Construction Act and the Community Mental Health Centers Act that the federal government supported the release of patients from institutions into their communities along with outpatient therapeutic treatment, including newly developed antipsychotic medication.
Below is a summary of advances in major U.S. legislation that has laid down the legal basis to support the inclusion of people with disabilities, including those with Intellectual and Developmental Disabilities, into the mainstream community.e blend of compassion, expertise, and a commitment to making a positive difference in the lives of others.
Pictured: Chart showing a timeline from 1940s-1999 showing the progression of the Civil Rights Movement, creation of the ADA and the Olmstead Decision
But even with all of the legal and policy impetus, the area of healthcare for adults and children with intellectual and developmental disabilities (IDD) has remained an area of need. The 2005 US Surgeon General’s “Call to Action to Improve the Health and Wellness of Persons with Disabilities”, cited insufficient education and training for health care professionals in the needs of persons with disabilities. Indeed, families and individuals with IDD continue to voice concern over their inability to access primary health care, oral health care, specialty medicine, diagnostic, therapeutic, treatment and rehabilitative services. In 2023 the NIH held hearings to update the HHS 504 Rule address and strengthen the rule which had not been reviewed for the past 40 years. The changes recommended in medical care were reflected follows:
Discrimination in medical treatment: Ensures that medical treatment decisions are not based on biases or stereotypes about people with disabilities, judgments that an individual will be a burden on others, or beliefs that the life of an individual with a disability has less value than the life of a person without a disability. These include, for example, decisions about life-sustaining treatment, organ transplantation, rationing care in emergencies, and other vital medical decisions.
Accessibility of medical equipment: Adopts the U.S. Access Board’s accessibility standards for medical equipment to address barriers like exam tables that are inaccessible because they are not height-adjustable, weight scales that cannot accommodate people that use wheelchairs, and mammogram machines that require an individual to stand to use them. The rule would require most doctor’s offices to have an accessible exam table and weight-scale within two years.
“Since its founding, The Rose F Kennedy Center, a University Center for Excellence in Developmental Disabilities at Einstein/Montefiore has trained numerous graduate students and fellows through its LEND program and Developmental Pediatric Fellowship opportunities. Continuing medical education classes for practicing physicians were also made available through CME courses but this did not attract many participants who had established practices and specialties.”
In 2017, the then director of the RFK UCEDD, Theodore Kastner, MD asked—based on my work with self-advocates—if I would include self-advocates and caretakers in the second year medical school class Nervous System and Human Behavior. After submitting a grant application for the AAMD’s National Curriculum in Developmental Medicine and Dentistry (NCIDM) in 2019, the RFK UCEDD was awarded an National Curriculum Initiative in Developmental Medicine grant (now called NICHE) to “Infuse IDD into the Medical School Curriculum” at the Albert Einstein College of Medicine at Montefiore.
Six aims of the NCIDM project were incorporated into the Einstein curriculum:
Improve medical student knowledge
Patient care
Interpersonal and communication skills
Professionalism through practice
Practice-based learning
Systems-based learning
The hope was to introduce IDD as a patient population to medical students early in their education and career to impact both knowledge and more positive attitudes toward providing care to this IDD population. Didactic, SA and patient panels, as well as Observed Structured Clinical Exams (OCSEs) were included. Pre/post-test surveys were administered to the medical students. The results of this effort, Infusing intellectual and Developmental disability training into Medical School curriculum: a Pilot Intervention, were published and reflect significant medical student impact in improved knowledge as well as positive attitudes towards people with intellectual and developmental disabilities occurred during the period of the study.
Since the NCIDM (NICHE) project there have been unanticipated positive results of the NCIDM project with the advocacy by students to include additional opportunities for IDD to be included throughout the three-year course work for students at Albert Einstein College of Medicine.
In 2020, Vincent Siasoco, MD came on board as faculty at the Rose F. Kennedy Center Children’s Evaluation and Rehabilitation Center as we looked to expand the experiences that students could have with the IDD population. That year, an Einstein student chapter of the AADMD was established. Students with the same interests and passions came together to hear lectures from physicians specializing in the care of patients with IDD and continue to participate in different activities. They volunteer in partnership with Special Olympics New York through its Healthy Athletes program and learn firsthand the importance of inclusiveness. The student chapter assisted in organizing a Rare Disease Day event at Einstein and a Hispanic Heritage Day event in collaboration with Positive Exposure, a nonprofit that promotes equity and compassion through photographs, films, and events both virtually and at its NYC gallery. Students in the chapter not only learn about the IDD population, but also gain leadership and advocacy skills.
In 2021, one of the students informed us about a second year course called, “Transition to Clerkship,” where students learn skills needed to communicate, coordinate, and care for the patient whether they are in an exam room, the ER, hospital floor, outpatient primary care, or specialty setting. Through the students’ advocacy, Einstein gave us another platform to provide more training to medical students on how to care for the population through this course.
Pictured: The Albert Einstein College of Medicine
Photo Credit: Getty Images
In 2023, Einstein established a new course titled, “Service-Learning Program” in which first-year medical students rotate onsite in a non-clinical setting at different Community Based Organizations (CBO) in the Bronx. The Bronx Adult Day Program at ADAPT Community Network, a non-for profit organization in NYC serving individuals with IDD, is one of those CBOs.
“Medical students are not only learning about the very basics of medicine in school, but also understanding the patient in their environment along with the social determinants of health that can be a barrier to care. All of these experiences complement this, and as a next step to the Transitions to Clerkship course, a third year clinical rotation was set up at the ADAPT Community Network clinic and Rose F. Kennedy CERC adult Primary Care clinic where third year students could rotate through and obtain hands on experience and interact with patients with IDD.”
To conclude, these courses and the efforts of student leaders in the medical field of education at the Albert Einstein College of Medicine have given hope to the idea that a new cadre of physicians will have the skill set, understanding and desire to move the field of medical education forward for those with intellectual and developmental disabilities into the 21 century so that the dream of true acceptance and inclusion will continue to be viable.
About the authors
Joanne Florio Siegel, LCSW, ACSW with over 40 years of clinical and community experience in the field of developmental disabilities, Joanne is currently the Co-Director of the Rose F. Kennedy University Center of Excellence in Developmental Disabilities (RFK UCEDD) and has dedicated her career toward enhancing the lives of people with intellectual and developmental disabilities and their families through clinical services, self-advocacy facilitation, community education and policy development. As Senior Educator in the Department of Pediatrics at Einstein College of Medicine, she is championing an effort to infuse “IDD through the Lifespan” into the medical school curriculum at the Albert Einstein College of Medicine.
Vincent Siasoco, MD, MBA is a board-certified Family Medicine Physician. Assistant Professor, Department of Family and Social Medicine and Department of Pediatrics, Albert Einstein College of Medicine. Director of Primary Care, Rose F. Kennedy (RFK) Children's Evaluation and Rehabilitation Center and Director of Community Engagement/ Demonstration Projects at the RFK University Center for Excellence in Developmental Disabilities, Montefiore Medical Center. Medical Director, ADAPT Community Network.