Innovation in Medical Education on Intellectual/Developmental Disabilities

Abstract

The lack of physician training in serving patients with intellectual and developmental disabilities (IDDs) has been highlighted as a key modifiable root cause of health disparities experienced by this high-priority public health population. To address gaps in medical education regarding the lack of IDD curriculum, lack of evaluation/assessment, and lack of coordination across institutions, the American Academy of Developmental Medicine and Dentistry created the National Inclusive Curriculum for Health Education–Medical (NICHE-MED) Initiative in 2016. The aims of NICHE-MED are to: (1) impact medical students’ attitudes and/or knowledge to address underlying ableism and address how future physicians think about disability; (2) apply a lens of health equity and intersectionality, centering people with IDD, but fostering conversation and learning about issues faced by other disability and minoritized populations; and (3) support community-engaged scholarship within medical education. As of 2024, the NICHE-MED initiative consists of close to 40 Medical School Partners, each with their own community-engaged disability curriculum intervention paired with a rigorous evaluation that ties centrally to coordinated program evaluation. The NICHE-MED initiative demonstrates implementation success at scale and is a successful community-engaged curriculum change model that may be replicated regarding disability more broadly and regarding necessary medical education efforts that center other marginalized populations.

People with intellectual and developmental disabilities (IDDs)¹ are at increased risk for poor health outcomes across the lifespan and, as a result, have been identified as a high-priority population. The poor health status of this population has been conceptualized as a “cascade of disparities,”² or the result of a compounding effect of multiple health disparities, including a higher prevalence of associated conditions, inadequate attention to needs by caregivers, inadequate focus on health promotion, and inadequate access to quality health care services.³ Specifically, the lack of health care provider training on IDD and provider bias have been highlighted in recent literature as key, modifiable determinants of the health disparities experienced by people with IDDs.^4–7 Improving the competency of future clinicians is central to recognizing and addressing the health disparities experienced by people with IDDs.^3,5

In response to calls for health care systems to address disparities experienced by people with IDDs,^8,9 as well as broader attention to disability and ableism in health care,^10–15 the field of medical education has developed curricular interventions aimed at better preparing future doctors to care for the population of people with IDDs. These calls and interventions are situated within more general calls for an investigation of curriculum on disability as a broad category, rather than solely IDD.^{3,10,11,16–22} As a result, efforts that are inclusive of IDD are often difficult to ascertain from current literature.

In 2002, the importance of medical education regarding IDD was first highlighted in a Surgeon General’s Conference report entitled “Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation.”⁸ Of note, Rosa’s law, which was signed in 2010, amends federal legislation to change “mental retardation” to “intellectual disability.”²³ “Closing the Gap” identified multiple action steps including health provider training. Since that time, efforts have been limited in both curriculum development and evaluation/assessment. In 2014, a review of the literature highlighted the need for rigorous scholarship on medical student attitudes toward people with IDDs, as student attitudes appear to be responsive to educational interventions.²⁴ A 2018 article asserted that the most prominent barrier for people with IDDs in accessing health care services is the lack of training on IDD in medical professionals’ education. The article also emphasized that all medical students should be taught about caring for patients with IDD because all physicians will at some point in their career provide medical care to people with IDDs, regardless of their future specialty choice. Lack of education related to IDD and disability more broadly perpetuates a feeling of lack of preparation to care for these patients, thus perpetuating the cycle of inequitable access to care.²⁵ Despite this realization, in 2019, it was noted that the majority of medical students in the United States received little to no training about people with disabilities.²⁶

In fact, from 2017 to 2024, multiple scholars have attempted to gauge the current state of disability curriculum in medical schools or have called for disability advocacy in medical education.^6,14,26–40 They have noted that this educational gap continues to persist and have identified directions for moving the field forward, including the importance of longitudinal educational opportunities and longitudinal evaluation/assessment.^26,33 In addition, multiple papers have described specific curricular efforts designed to train medical students to work with patients with IDDs, ranging from seminars,⁴¹ interprofessional care,^41,42 the use of patient narratives,^43,44 and panel presentations.⁴⁵ However, interventions remain limited in scope and size, often described at a single institution.

BACKGROUND

In this commentary, we describe the American Academy of Developmental Medicine and Dentistry’s (AADMD) National Inclusive Curriculum for Health Education–Medical (NICHE-MED) initiative. Building on efforts in health professions education efforts since 2009,⁴⁶ the goal of this initiative is to address the gaps in the medical education regarding lack of IDD curriculum, lack of evaluation/assessment, and lack of coordination across institutions.^46–50 In 2016, the National Curriculum Initiative in Developmental Medicine began as a multi-year partnership (2016–2021) between AADMD and Special Olympics, with resources from a cooperative agreement funded by the Centers for Disease Control and Prevention. In 2023, AADMD launched initiatives in both the medical and dental education spaces under the umbrella NICHE. NICHE-MED refers to efforts in the medical education space and the project supports medical schools in implementing curricula about health care for people with IDD across the lifespan.^46–50 NICHE-MED is funded through a multi-year partnership with AADMD and Elevance Health. The aims of NICHE-MED are to: (1) impact medical students’ attitudes and/or knowledge to address underlying ableism and address how future physicians think about disability, (2) apply a lens of health equity and intersectionality, centering people with IDDs, but fostering conversation and learning about issues faced by other disability and minoritized populations, and (3) support community-engaged scholarship within medical education (Appendix 1, Supplemental Digital Content 1, http://links.lww.com/MLR/C911). NICHE-MED consists of 4 pillars: (1) Medical School Partner implementation grants program; (2) capacity building through strategic partnerships; (3) advancing the literature; and (4) elevating learners (Appendix 2, Supplemental Digital Content 2, http://links.lww.com/MLR/C912).

Implementation of National Inclusive Curriculum for Health Education–Medical

Between 2016 and 2022, 19 Medical School Partners from 2016 to 2022 received implementation grants and established IDD curriculum. As of 2024, NICHE-MED supports ∼40 Medical School Partners and will continue to grow into 2028.

The outcomes suggest that IDD education developed and implemented as part of the NICHE-MED community-engaged approach to curriculum change was efficacious in significantly impacting medical students’ attitudes and knowledge about people with IDDs (Appendix 3, Supplemental Digital Content 3, http://links.lww.com/MLR/C913). Pre/post-differences were the largest for the attitudinal questions that related to global perceptions of students’ ability to work with patients with IDDs. This suggests that the multifactorial component of education and training yielded some of the largest impacts on students. In addition, the exposure to both knowledge and direct contact with people with IDDs yielded substantial changes in perceived comfort. Previous literature has noted that positive changes in attitudes may lead to an increase in more empathetic, inclusive, equitable, and patient-centered care for people with IDDs in the future^5,51–53 and that increases in knowledge about IDD can yield physicians that understand the unique health care needs of the population and the disparities they face when accessing health care.⁵⁴ However, other literature suggests focusing on knowledge and skills as opposed to attitudes.²⁶ Given that there is currently debate in the disability medical education research literature with regards to which outcome (attitudes, knowledge, and skills) is most durable, lasting, and leads to changes in physician behavior/health care delivery and, therefore, improves the quality of medical care for people with disabilities, the approach of NICHE-MED, which focuses on 2 of these 3 outcomes, is more robust than approaches that focus on a single educational outcome.

Multiple scholars have attempted to gauge the current state of disability curriculum in medical schools and have noted that this educational gap continues to persist and have identified directions for moving the field forward, including the importance of longitudinal educational opportunities and longitudinal evaluation/assessment.^6,14,26–34 In 2017, AADMD convened an expert working group to create evaluation tools for medical student attitudes and medical student knowledge. Working group members were physicians from a variety of specialties, to ensure representation from different lenses within clinical medicine. Each working group member had clinical expertise and experience serving patients with IDDs. Fields represented included internal medicine, family medicine, combined internal medicine—pediatrics (med-peds), pediatrics, physical medicine and rehabilitation (adult and pediatric rehabilitation medicine), and neurology (Appendix 4, Supplemental Digital Content 4, http://links.lww.com/MLR/C914, Appendix 5, Supplemental Digital Content 5, http://links.lww.com/MLR/C915, and Appendix 6, Supplemental Digital Content 6, http://links.lww.com/MLR/C916).

Quantitative data regarding attitudes and knowledge not only evaluated the efficacy of the NICHE-MED community-engaged approach to curriculum change but also aided in advancing the medical education field with respect to assessment and evaluation. The NICHE-MED initiative addresses key limitations in the current literature base, as only a limited number of studies to date assess the impact of IDD education on attitudes and/or knowledge, and when the impact has been assessed, data collection is limited in terms of number of medical student responses and in terms of single institution implementation. A large number of medical student responses and a number of Medical School Partners engaged is a strength of the NICHE-MED initiative and addresses criticisms of previous efforts calling for an assessment of both attitudes and knowledge²⁶ and calling for linkage of pretest and posttest data to allow for assessment of efficacy.⁵³ In addition, through long-term collaboration, enough data were collected from 17 medical schools over 8 years to perform NICHE-MED attitudes instrument validation. A validated instrument is an important contribution to the field and answers previous calls for improved rigor in the evaluation and assessment of medical education efforts.^26,33,55 Without collaboration, this process would have taken several decades.

All partners to date have opted to use the instruments developed by NICHE-MED, and have received technical assistance from NICHE-MED. An immense amount of time has been invested in creating and maintaining working relationships built on trust and being responsive to the needs of the Medical School Partners. To that end, the supplemental digital content included with this commentary includes not only the NICHE-MED attitudes instruments but also supporting documentation that will assist Medical School Partners and others to continue to advance the field. NICHE-MED attitudes instruments and supporting documentation include question numbers as created in Qualtrics, to aid Medical School Partners and others in cleaning and analyzing data on the backend, as well as to aid them in re-creating instruments in other data collection platforms (Appendix 5, Supplemental Digital Content 5, http://links.lww.com/MLR/C915 and Appendix 6, Supplemental Digital Content 6, http://links.lww.com/MLR/C916). For example, the NICHE-MED team has recently expanded to provide technical assistance in Redcap as well as Qualtrics. Supporting documentation is included not only to assist with data collection but also with data analysis (Appendix 5, Supplemental Digital Content 5, http://links.lww.com/MLR/C915). Online Appendix 5 (Supplemental Digital Content 5, http://links.lww.com/MLR/C915) includes a column that specifies the desired direction of response for Likert items. This will aid those who use the instrument to speak about their results from the lens of ableism; attitudes items that demonstrate change in the desired direction demonstrate a movement toward less ableist attitudes. Attitudinal questions with a target of “3” (neutral response) tended not to yield significant changes and had split directionality in movement with subgroups of students. As a result, these questions were modified in the revised tool, NICHE-MED Attitudes Instrument version 2.0 (Appendix 5, Supplemental Digital Content 5, http://links.lww.com/MLR/C915).

In addition to NICHE-MED’s quantitative data, the qualitative data are also useful from an action-oriented perspective. Qualitative data provide rich insight into how medical students experienced the curriculum, changes they believe would be beneficial, and the system-level barriers they perceive to implementing quality care for people with IDDs. Students described interventions that included contact and experiences with people with IDDs as the most impactful. Students also described the barriers they perceived existed for them to implement care for people with IDDs in the future including communication between themselves and patients, health care system factors, limited exposure to people with IDDs, and student-related factors including their own lack of knowledge about IDDs. Medical students’ comments and recommendations emphasized the importance of integrating IDD education into medical school curricula, as the students strongly advocated for experiential learning opportunities and contact with people with IDDs. Student comments about health insurance and time for appointments as perceived barriers to care highlight the importance of including structural competency in medical education. Structural competency is a critique and extension of cultural competency, which is the movement to encourage health care workers to value diversity and equip them to work effectively across cultures.^10,56 By extension, structural competency emphasizes the need for clinicians to recognize and be able to respond to the broader forces (cultural, economic, political, and legal) that impact individual health.^57,58 Students recognize that structural factors in the form of health insurance, ownership of health care organizations (for profit vs nonprofit vs government), and the increasing trend towards prioritizing efficiency in health care impact the care physicians can provide to people with IDDs.

Taken together, the findings from qualitative analysis of both open-ended questions illustrate the success of NICHE-MED curriculum efforts and highlight the need for additional community-engaged efforts in this space. Students’ feedback was overwhelmingly positive, stating that they liked the inclusion of the IDD curriculum, and requesting additional education and contact with people with IDDs. Notably, additional experience interacting and working with people with IDDs may mitigate the perceived barriers to care, as increased contact increases comfort, and may likely improve students’ communication skills. In addition, the way in which people with IDDs and community partners were engaged was intentional, incorporated expertise from a physician-scientist trained in community engagement (P.C.), and student feedback did not describe perpetuating tokensim as a concern. This speaks to the large amount of technical assistance provided to teams during project/study design, as community-engaged scholarship is a skillset native to public health, but relatively new to medicine and medical education.

CONCLUSION

The NICHE-MED initiative is, therefore, a successful community-engaged curriculum change model that may be replicated regarding disability more broadly and regarding medical education efforts that center on other marginalized populations. In fact, over time, there has been a growth of intersectional efforts, for example, Medical School Partners that address issues within both disability and LGBTQ+ health, such as diagnostic overshadowing/trans broken arm syndrome.⁵⁹ Delivering content in an intersectional way helps medical students appreciate and understand general themes that have implications for clinical reasoning and diagnosis skills. They learn an approach to a patient that they can utilize regardless of the patient in front of them, as well as specific considerations for specific marginalized populations.

Previous medical education literature has long called for scale-up of best practices,²⁷ as medical education has a responsibility towards patients with IDDs. If medical education continues to lack content regarding disability and if IDD is not intentionally included in broader disability efforts, the feeling of being unprepared to work with patients with IDDs will persist, thus perpetuating the cascade of disparities experienced by patients with IDDs and by disabled patients more broadly.^2,25 In addition, disability cannot be disentangled from other marginalized identities, necessitating a lens of equity that acknowledges not just intersecting identities, but also intersecting forms of discrimination, such as ableism, racism, and others.

Though the NICHE-MED initiative has had a considerable impact, the IDD curriculum remains a training need. The results presented in this report note that only 27% of medical students reported receiving specific IDD training during medical school before NICHE-MED curriculum interventions. Thus, the focus of the NICHE-MED initiative remains a training need within medical education. Encouragingly, medical students are overwhelmingly aware that they will see patients with IDDs in their future careers as physicians, regardless of what they choose to specialize in, as only 0.43% of medical students estimated that they would not see any patients with IDDs in future medical practice. However, given the scholarly literature on disability and medical education and student reports of barriers to caring for people with IDDs, intervention remains necessary. Ableism remains prevalent and requires intervention at the medical education level in a way that does not over-intellectualize the topic, as disability is first and foremost a social identity like race and gender.

Given that all Medical School Partners have experienced growth in disability curriculum efforts since initial implementation with NICHE-MED, there are lessons learned regarding sustainability in addition to efficacy. Initial, small seed funding has been extremely successful in creating sustainable efforts by giving Medical School Partner teams and community partners an opportunity to come together around a concrete project. Through working together on a NICHE-MED project, Medical School Partner teams have grown over time in terms of depth of relationships with community partners, number of relationships with community partners, and number of trained faculty and self-advocates to deliver educational content. In addition, technical assistance and faculty development of medical educators in community-based participatory research and in community engagement methods provided by the NICHE-MED team have allowed faculty to follow their initial passion for disability curriculum content and pursue careers in medical education in ways that are recognized by academia, allowing for promotion and tenure of junior faculty. A central coordinating team that exists outside of academia, at the AADMD level, has been invaluable in navigating political barriers inherent to the medical education space. In addition, having a central team has been critical to support collaboration regarding data collection. This collaboration across institutions is essential given that paired data were 44% of total data collection.

Final Thoughts

Since the original national blueprint described more than 20 years ago in the 2002 U.S. Surgeon General’s Conference report,⁸ and a review of efforts to educate health professionals about disability in the UK more than 10 years ago in 2013,²⁷ there have been numerous systematic reviews documenting the state of disability curriculum efforts in medical education in the United States and calls to action that advocate for more disability curriculum efforts in medical education,^6,14,26–40 with a recent growth in these types of publications since the COVID-19 pandemic. The NICHE-MED initiative, which started in 2016, is responsive to the recent advocacy calls for more disability curriculum efforts in medical education and demonstrates implementation success at scale. The NICHE-MED initiative consists of close to 40 Medical School Partners, each with their own community-engaged disability curriculum intervention paired with a rigorous evaluation that ties centrally to coordinated program evaluation of the impact of a community-engaged approach to medical education curriculum development. Considerable time (over 8 y) and funding have been required to achieve this impact, with the hope that key stakeholders in the medical education system will move towards requiring this content in medical school now that the feasibility and efficacy of a community-engaged approach to curriculum change has been demonstrated. Partnership and funding at the systems level will be necessary to ensure that every medical student receives a quality disability curriculum that is cocreated with disabled voices in a way that closes disparity gaps rather than contributes to ableism and tokenism. Community partners deserve not just a seat at the table, but equitable compensation for their work in the medical education and health care spaces. Given that every physician will serve patients with IDDS, and disabled patients more broadly, it is the hope of these authors that this report may be used to continue advocacy within the medical education, medical care, and health policy spaces.