The Trainee’s Role in Curriculum Advocacy Within Disability Medical Education

The prevalence of disabilities in the United States is growing, with most recent data estimating that 27% of adults have a disability.1 There has been a similar increase in developmental disabilities among children, with a prevalence of 17%.2 Developmental disabilities are defined as severe, chronic conditions that manifest before 22 years of age with associated cognitive and/or physical impairments resulting in functional limitations in at least 3 major activities of daily living and requiring assistance throughout the lifespan.3 Intellectual disability, a type of developmental disability, has a prevalence of 1%4 and encompasses diagnoses that cause impairments in intellectual and adaptive functioning related to conceptual, social, and practical skills.5 Intellectual and developmental disability (IDD) is a term meant to be inclusive of developmental disabilities with a particular focus on those causing intellectual disability. People with disabilities, especially those with IDD, experience significant health care disparities compared with people without disabilities.6–9 Compared with people with other disabilities, people with IDD are less likely to undergo preventative cancer screenings6–8 and attend routine dental visits.10 They are also more likely to report having a fair or poor health status compared with people without disabilities.6–9 Furthermore, people with IDD are more likely to have problems getting needed care, experience delayed treatment, and have unmet health care needs.9 Physicians harbor significant misconceptions about patients with disabilities, especially those with IDD. In a national survey of US physicians, only half of respondents strongly agreed that they would welcome patients with disabilities into their practices and only 40% felt very confident that they could provide the same quality of care to patients with disabilities as patients without disabilities.11 When working with individuals with IDD, physicians report addressing caregivers rather than patients, recommending sedation for routine procedures, and assuming patients are incapable of making responsible decisions.12 Another study found that most practicing doctors have a superficial or incorrect understanding of how accommodations should be implemented within their practices, whether a patient can be refused care for having a disability, and whether patients are responsible for the cost of their accommodations.13 Interviews with primary care physicians revealed feelings of frustration and insecurity working with patients with IDD. The physicians interviewed attributed their discomfort to a lack of disability training in medical school and residency.14 Trainees demonstrate similar difficulties. In 2009, 81% of surveyed US medical students reported having no clinical training in caring for patients with disabilities.15 More recently, surveys of internal medicine and family medicine residents revealed 35% received disability-specific education during medical school and only 11% received such training during residency. Ninety-six percent of respondents expressed a desire for more education on this topic.16 This gap in training is reflected in medical students’ performance on practice interviews with standardized patients with visually apparent disabilities, during which 26% of medical students avoided the topic of disability.17 Of particular concern, students are also less likely to accurately obtain a history, perform an appropriate physical examination, and determine the initial workup for standardized patients with disabilities compared to those without disabilities.18 Despite these findings, US medical schools are not required to teach students about patients with disabilities. The Liaison Committee on Medical Education, the accrediting body for US medical schools, recommends but does not require that medical students learn about patients with disabilities.19 This used to be true of US dental schools as well; however, in 2018, under the advisement of the National Council on Disability,20 the American Dental Association revised its Principles of Ethics and Code of Professional Conduct to prohibit the discrimination of people with physical and intellectual disabilities in dental care.21 This legal precedent paved the way for the Commission on Dental Accreditation to revise the dental school accreditation standards, requiring disability competency of all graduates.22,23 Dental schools have shown by example how this widespread change can be achieved. Disability advocates have called for a similar disability curriculum requirement in US medical schools.24–29 Until this occurs, curricular interventions must take place at the level of individual schools and programs. In recent years, several medical schools have independently developed disability curricular content with positive results.25,30–41 Interestingly, many of these curricular changes have been spearheaded by trainees with faculty support. Trainees are increasingly being recognized as advocates within the health care system.42 Medical students are commonly involved as student representatives on medical curriculum committees alongside faculty, playing an important role in educational policies and curriculum decisions.43,44 Diversity initiatives aimed at disability inclusion,45,46 implicit bias,47 racial sensitivity,48 and LGBTQIA+ (lesbian, gay, bisexual, transgender, queer, intersex, asexual) education49 are frequently trainee-led. The limited literature on this topic suggests that the co-creation and implementation of learning modules by trainees and faculty not only has positive results but is also preferred by students.50–56 Despite the demonstrated role that trainees play in advocating for improved curricula related to other topics,48,49,57 there is no literature discussing trainee-led IDD curriculum initiatives. In this paper, the authors describe their personal experiences designing and implementing IDD curricular content at their training institutions. They also provide trainees with an advocacy manual entitled IDD Curriculum Advocacy Toolkit (Supplemental Digital Content 1-9, Supplemental Digital Content 1, https://links.lww.com/MLR/C811, Supplemental Digital Content 2, https://links.lww.com/MLR/C812, Supplemental Digital Content 3, https://links.lww.com/MLR/C813, Supplemental Digital Content 4, https://links.lww.com/MLR/C814, Supplemental Digital Content 5, https://links.lww.com/MLR/C815, Supplemental Digital Content 6, https://links.lww.com/MLR/C816, Supplemental Digital Content 7, https://links.lww.com/MLR/C817, Supplemental Digital Content 8, https://links.lww.com/MLR/C818, Supplemental Digital Content 9, https://links.lww.com/MLR/C819). The purpose of these narratives is to share lessons learned from the development of trainee-led disability curricula and to provide a framework for future curricular projects. Highlighted throughout the narratives is not only the key role trainees play as advocates and teachers but also the mutual educational and professional benefits that arise from trainee and faculty collaboration in curricular reform and development. TRAINEE PERSPECTIVES Shannon Strader, DO, Class of 2020 Medical School Advocacy My Background Having a twin with cerebral palsy inspired me to pursue a career in medicine. I attended medical school at Lincoln Memorial University-DeBusk College of Osteopathic Medicine (LMU-DCOM) with the goal of eventually treating patients with disabilities. Disability Curriculum Needs Assessment Throughout my medical school training, I was surprised by the lack of disability education in our medical school curriculum. As I progressed throughout the coursework, I noticed there was minimal content related to patients with disabilities. A group of students and I also noted that our peers expressed feeling unprepared to care for patients with IDD during clerkships. These students and I evaluated the curriculum more formally, looking for learning objectives or lecture content related to this population. We found one PowerPoint slide dedicated to cerebral palsy, one to Down syndrome, and one to autism throughout the four-year curriculum. When reaching out to students at other medical schools, they reported similar experiences and thoughts on a lack of IDD curriculum. We also identified barriers to change, including the need for funding and the identification of experts to deliver the educational content. We realized that we did not have any local experts in the field of IDD, requiring the recruitment of speakers from outside the area. Both factors posed a risk to the sustainability of an educational project. Additionally, we noted that there was little, if any, room for new content within the curriculum. Disability Curriculum Advocacy We identified a faculty member involved in a national organization dedicated to patients with IDD called the American Academy of Developmental Medicine and Dentistry (AADMD). This faculty member supported our proposal to create a curricular event dedicated to improving students’ confidence in caring for this population. Given her knowledge of the curriculum, this faculty member was able to tailor our proposal to also fulfill the medical school’s requirement for interprofessional education. This greatly impacted the buy-in of school leadership resulting in a mandatory session for second-year medical students. Students identified experts in the field of IDD by partnering with other health care disciplines within the university, outside academic institutions, community organizations, and the Tennessee Department of Intellectual and Developmental Disabilities. To financially support the creation of new content, students secured grant funding from AADMD with the assistance of faculty. Outcome of Advocacy Efforts We designed a lecture-based and discussion-based experience focused on IDD from an interdisciplinary perspective. The overarching goals of the session were to increase students’ exposure to people with IDD, reduce the stigma associated with IDD, promote the use of respectful language, improve students’ confidence engaging with individuals who use nonverbal communication, understand the importance of interprofessional collaboration, gain comfort with durable medical equipment, discuss disability accommodations, and educate students on reporting suspected abuse or neglect. The content was created and delivered by an interdisciplinary team including speech language pathologists, psychologists, nurses, medical students, behavior analysts, physician-scientists, and physiatrists. Physician assistant students, nursing students, special education students, undergraduate students, and members of the community were also encouraged to attend. Throughout the of curriculum advocacy and our faculty as my and are experts who provide their with career their professional development and literature has the role of and in the professional development of trainees and physicians, especially those to Having a faculty with an knowledge of the curriculum was to our as to tailor our proposal to also fulfill the medical school’s also supported in the of grant as as curricular and We discuss key for and and the benefits of collaboration in and for and for Trainees a for and with trainees with similar goals and objectives faculty with similar in and outside of of trainee with their advocacy goals to their professional goals faculty with on key committees curriculum clinical trainees with leadership curriculum content experts at and in community trainee in and for grant funding with local and national community trainee by leadership is for trainees to an appropriate or These are a that this a or is the as to the of this for the The content was developed on the personal experiences with curriculum development and of advocacy and leadership advocacy and leadership content the and of trainees in curricular development for with trainees of curricular content to of the local community for in curricular content and curricular content of curriculum and in curriculum and more and content future experts for education and knowledge curriculum grant modules to learning There are several mutual educational and professional benefits that arise from the collaboration of trainees and faculty on curricular projects. also have significant benefits to the curriculum. The content was developed on the personal experiences with curriculum development and Furthermore, the sustainability and of this was to its interdisciplinary collaboration of individuals of all of training and and the support of community was also that the of people with disabilities, including those with IDD, were in this educational as they are the true experts on their Class of Medical School Advocacy My Background My to working with people with IDD was as a in As an undergraduate I at the which interdisciplinary and to adults with IDD. I also a with the in and These experiences my to pursue a career in medicine to improve the quality and of care for individuals with IDD. I a medical student at School of Disability Curriculum Needs Assessment As I my of medical I noticed a lack of content related to people with disabilities. a faculty member and I evaluated the required undergraduate medical curriculum. We learning objectives and lecture content and noted a of about the care of people with IDD. my I that people with IDD significant health care disparities and quality care compared to people without disabilities. This inspired me to for curricular changes at my to improve the education that future physicians on the care of patients with IDD. Throughout our advocacy my faculty and I identified barriers to we were room in the curriculum for new content, and we needed to buy-in from medical school In very medical physicians were in the care of patients with IDD, to a lack of faculty for curricular Disability Curriculum Advocacy a faculty member with mutual was to the of my advocacy I the of my faculty a community event for was to my faculty in curriculum development and at the School of This to with faculty and tailor our curricular to also the curricular identified by medical school that and was an identified of the university, we the of disability into the mandatory curriculum. Additionally, we within the curriculum that could be by the of IDD content of new to a curriculum with The of our was by the of other medical students and with IDD. with community also to the of community members with IDD throughout the Outcome of Advocacy Efforts advocacy have not only to the of IDD in curricular content but also to the creation of new content to the of people with IDD. we a created by a medical student to more content to the of people with IDD. We also created a of for medical students in with including health and an inclusive with individuals with IDD and their the mandatory curriculum, we created a new session focused on the clinical care of people with IDD. This session an as as group medical students and individuals with curricular initiatives the of related to individuals with IDD into mandatory and the of a grant to a of educational on clinical to the care of people with IDD. 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Advocacy Disability Curriculum Needs Assessment I involved in curriculum advocacy during my as a at of School of Medicine students, and I noticed educational in the undergraduate medical curriculum at related to patients with disabilities. We a of the curriculum by for throughout the curriculum. We found content related to the care of patients with disabilities. We identified barriers to change including an curriculum with limited for mandatory content. In the and medical faculty experts in the many were to and their to create and teach new content. Furthermore, we identified the need for funding to support the of faculty and community members with disabilities. Given these we we needed to be about the sustainability of our initiatives. Disability Curriculum Advocacy the was in disability education within we found support in our faculty, one of was the of in to and experts in the field as as with disabilities. 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To sustainability of disability advocacy throughout the I created a called the Disability Curriculum which focused on disability content into the mandatory curriculum at Medical students, of were student representatives to the curriculum were in the to faculty involved in curricular reform and faculty were able to on key curricular reform committees within to provide disability Outcome of Advocacy Efforts As the curriculum would be in for several years, we focused our initial on designing a that could be to students. residents alongside faculty and students to create a disability for and second-year medical students. The framework for such within the curriculum as to promote of of A proposal for the was to the curriculum and to be alongside a of other in which medical students content was created by among and faculty, medical students, and We created learning objectives on we learned from our interviews with people with disabilities. This with with disabilities, the resulting group which were a of and group on the results of our interviews and the of our educational be this was being designed and advocacy were by the Disability Curriculum of the changes medical students physical to patients with disabilities, standardized patients with disabilities, clinical people with IDD, and implementing learning to disability These advocacy are as the curriculum reform to on my advocacy at and I many to the and sustainability of these Throughout these trainees a key role in grant designing and implementing curricular content, and This was by faculty at the and clinical faculty with disability and curriculum These faculty members throughout the to be as we learned and throughout the These initiatives also for of and throughout including faculty of faculty, faculty of of medical students, and This to and collaboration for of support and professional development that all involved Throughout the we also learned how was to people with disabilities in to improve disability education. was to that we be experts in the field of disability people with disabilities be the true experts on their IDD the demonstrate the of trainee and are of initiatives. are more a faculty member with within the or to promote their a with the can be Trainees without to or professional not have the to for curricular Additionally, we identified throughout our including similar barriers to change and to initiatives. advocacy including this knowledge future more In 2018, trainees involved in Committee the Curriculum focused on disability curriculum. to medical trainees students and and dental student from the United States and to create the IDD Curriculum Advocacy Toolkit (Supplemental Digital Content 1-9, Supplemental Digital Content 1, https://links.lww.com/MLR/C811, Supplemental Digital Content 2, https://links.lww.com/MLR/C812, Supplemental Digital Content 3, https://links.lww.com/MLR/C813, Supplemental Digital Content 4, https://links.lww.com/MLR/C814, Supplemental Digital Content 5, https://links.lww.com/MLR/C815, Supplemental Digital Content 6, https://links.lww.com/MLR/C816, Supplemental Digital Content 7, https://links.lww.com/MLR/C817, Supplemental Digital Content 8, https://links.lww.com/MLR/C818, Supplemental Digital Content 9, https://links.lww.com/MLR/C819). The creation of this place years to and as they progressed of training, collaboration and the professional that during the in the were identified and key content was developed the experiences of trainees at their medical and dental schools and programs. The IDD Curriculum Advocacy Toolkit and to the (Supplemental Digital Content 1, proposal (Supplemental Digital Content 2, university, and community (Supplemental Digital Content 3, Disability competency survey (Supplemental Digital Content 4, (Supplemental Digital Content 5, Medical education (Supplemental Digital Content 6, Dental education (Supplemental Digital Content 7, (Supplemental Digital Content 8, which an of barriers to curriculum advocacy and to policies and (Supplemental Digital Content 9, The of this is to as an advocacy manual for especially those trainees who have not identified faculty or community People with disabilities, especially those with IDD, experience significant health care disparities in the United The of disability in medical curricula has not been a for training to for within the curriculum and a lack of required disability competency by accrediting This gap in training has to in knowledge and that to the disparities by this population. 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Until disability competency a requirement for medical school and individual must to not only disability but also content within the mandatory curriculum. This content to a of that all trainees demonstrate competency in the care of patients with disabilities. of the of and are needed to the of disability education on competency in caring for this population. is needed on the of trainees in curriculum development to the of their the authors an IDD Curriculum Advocacy there is more to be Disability curriculum advocacy the AADMD Curriculum The of trainees is working to the IDD Curriculum Advocacy Toolkit to create and content for disability advocates the