It’s been shown that most medical schools do not offer formal training on how to care for people with I/DD. Currently it’s up to each medical school to decide on whether or not, and how, topics involving I/DD are covered. This is in comparison to dental schools in which the Commission on Dental Accreditation has required all U.S. predoctoral dental education programs to educate students on managing patients with intellectual and physical disabilities.
Through the U.S. Department of Health and Human Services, Office of Disease Prevention and Health Promotion, Healthy People provides science-based, 10-year national objectives for improving the health of all Americans. Healthy People 2020 states that compared to individuals without disabilities, individuals with disabilities are more likely to “experience challenges in obtaining preventive healthcare services.” To address these and other health determinants, the World Health Organization (WHO) recommended to achieve health equity among individuals with disabilities, “The expansion of disability and health training opportunities for public health and healthcare professionals.” 2
CHALLENGES & BARRIERS
In order to understand the importance and need for education and training, one should consider the challenges and barriers that those with intellectual and developmental disabilities face. Disparities in care for those with I/DD continue to exist. It has been noted that approximately 6.5 million people in the United States have an intellectual disability. Despite the increase in life expectancy, adults with any type of developmental disabilities die on average 20 years earlier than adults without I/DD. The World Health Organization reports that those with disabilities are more likely not to have preventative cancer screenings and are more prone to obesity and high blood pressure. Studies have revealed that among adults with I/DD, two thirds had two or more co-morbidities, including obesity and chronic mental health needs. More than 40% were diagnosed with four or more chronic conditions in addition to I/DD. In an individual without I/DD, aging is not accompanied by high rates of medical and functional problems until after 70 to 75 years of age whereas in persons with a disability, these problems can present 20 to 25 years earlier.3 Adults with I/DD are nearly four times as likely to incur high annual healthcare costs than those without I/DD.
The different barriers to access of care are numerous, with lack of education, experience and training for health professionals at the top of the list. Without an understanding of the healthcare needs of people with I/DD, this can lead to poor communication and coordination of care. In addition, a common problem referred to as “Diagnostic Overshadowing” can occur when all the changed or unusual behaviors and behavioral symptoms are attributed to the intellectual disability or, conversely, everything is attributed to a psychiatric disorder without acknowledgement of the impact and interrelationship between one’s physical symptoms and behavioral expressions.4 For example, a patient with an intellectual disability who is non-verbal, is being evaluated for new-onset head banging behavior. The patient is diagnosed with a psychiatric problem and prescribed medication. In actuality, the patient has communication challenges and can't express the pain in their mouth due to a dental abscess.
OVERCOMING EDUCATIONAL & TRAINING BARRIERS
National Curriculum Initiative in Developmental Medicine: In 2019, the Albert Einstein College of Medicine received a grant to develop a special curriculum for medical students on how to treat adults with intellectual and developmental disabilities addressing educational gaps in medical schools in order to reduce health disparities for this population. The grant, part of the National Curriculum Initiative in Developmental Medicine (NCIDM) was funded by the American Academy of Developmental Medicine and Dentistry (AADMD) in partnership with Special Olympics International, and has been led by Joanne Siegel, Co-Director of the Rose F. Kennedy University Center for Excellence in Developmental Disabilities at Albert Einstein College of Medicine. In addition to a didactic piece, 2nd year medical students engaged in small group discussions with adults with I/DD who are self-advocates, as well as with their family members. What started out as a one-year grant funded project, has now been embedded into the curriculum at Einstein and is taught to 2nd year medical students every year.
The National Curriculum Initiative for Developmental Medicine has provided a tremendous impetus in exploring various ways in which medical students can engage directly with adults with developmental disabilities. Within the five years of the NCIDM effort, 18 medical schools across the country have participated in a unique set of program models. At Einstein, in addition to the curriculum enhancement, this effort has led to the creation of an Einstein AADMD Student Chapter under the mentorship of Vincent Siasoco, MD in which there are now over 50 members participating in activities online and in the community that focus on breaking down barriers to effective healthcare, enhancing knowledge, building experience, and developing relationships between future medical providers and people with intellectual and developmental disabilities.
American Academy of Developmental Medicine and Dentistry Student Chapter: Founded in 2002, the American Academy of Developmental Medicine and Dentistry (AADMD) is a non-profit membership organization of interdisciplinary health professionals that includes physicians, dentists, medical specialists, and other clinicians. Its mission is to provide a forum for healthcare professionals who provide care for those with intellectual and developmental disabilities and improve the quality of healthcare for this population. At the height of the pandemic, the Einstein College of Medicine turned to virtual teaching like everyone else across the country. The ability to socialize and connect with classmates and teachers was more than difficult. To bring like-minded people together, a Student Chapter of the AADMD was formed and officially recognized at the Einstein College of Medicine in late 2020.
As word got out about the Chapter, its membership rose, bringing together students, residents, and fellows who may not have otherwise connected with each other. Each member brought their story as to why they wanted to join the Chapter, be it through a family member they had with I/DD or just an interest to get involved. Through the Chapter, members were able to network and learn from monthly virtual grand round lectures through the AADMD. Members were introduced to the Bronx Community Self Advocacy group made up of adults with I/DD living in the community. In addition to this, they connected with Special Olympics New York and the Healthy Athletes Program.
Healthy Athletes Program: Established in 1997, the Special Olympics Healthy Athletes program provides free health screenings and education to athletes in a fun and welcoming environment. There are eight different health areas that the program focuses on, including medical, dental, eye, nutrition, and hearing. The members of the Einstein AADMD Student Chapter were able to get involved with Special Olympics athletes, coaches, and family members virtually educating on healthy lifestyles, nutrition, and even providing healthy cooking classes. Students who may never have met an individual with I/DD, have now begun to break down stereotypes, remove fears or hesitations, and are more comfortable in treating people with I/DD. Special Olympics reported that attitudes can be changed through increased quality interactions that challenge prevailing stigmas, as research has shown that structured and positive interactions can lead to attitude change. Special Olympics reported that “84% of health care providers feel better prepared to treat people with intellectual disabilities as a result of volunteering with Healthy Athletes.”
“The Special Olympics Healthy Athletes program offers free health screenings and education to Special Olympics athletes that would otherwise not be available. The Healthy Athletes program is not only a program for athletes but, through hands-on experience at screenings, is also a program for healthcare students; an opportunity to increase their knowledge of best practices in caring for people with intellectual disabilities. Trained healthcare providers have demonstrated improved awareness and self-efficacy in providing care for and communicating with patients with intellectual disabilities after completing the training,” stated Leanne Fusco, Director of Statewide Health at Special Olympics New York.
Though there needs to be more national curriculum guidelines in medical school and clinical hands-on training, any steps that are offered to students in order to learn, engage, and listen to those with I/DD is a step in the right direction. Medical students are already learning about the importance of both social determinants of health and patient-centered medical home model of care. Medical students who are on the right educational path learn about the patient holistically and their surroundings to ensure that quality of care is provided and can be attained. However, more needs to be done to focus a light on the care of this most underserved population – those with intellectual and developmental disabilities.
We need to work on supporting a national curriculum for all medical schools, but in the meantime, any opportunities to expose and engage medical students to better understand this population is valuable for all future physicians.
ABOUT THE AUTHORS:
Vincent Siasoco, MD, MBA, is a Board-certified Family Physician in NY. He is an Assistant Professor in the Department of Family and Social Medicine and Pediatrics at the Albert Einstein College of Medicine of the Montefiore Health System. He is the Director of Primary Care at the Rose. F. Kennedy Center Children’s Evaluation and Rehabilitation Center at Montefiore. He is the Medical Director of the ADAPT Community Network (formally known as United Cerebral Palsy of NYC). He is a Board member of the American Academy of Developmental Medicine and Dentistry, Clinical Director for Special Olympics, and Chairs the Special Olympics NY Health Advisory Council.
Joanne Siegel, LCSW, is the President of the Bronx Developmental Disabilities Council. She is a Principal Associate in the Department of Pediatrics at the Albert Einstein College of Medicine. She is the Co-Director of the Rose F. Kennedy Center, University Center for Excellence in Developmental, Service, Training and Research of the Montefiore Health System.
1. Holder, M. (2004). CAN project: Curriculum assessment of needs. Washington, DC: Special Olympics, Inc).
4. Bradley, Elisabeth; Hollins, Sheila. “Assessment of Patients with Intellectual Disabilities Psychiatric Clinical Skills.” Psychiatric Clinical Skills. Mosby, 2006, Pages 235-253
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