Lee M. Diaz M. Bassford T. Armin J. Williamson H. Providing equitable access to health care for individuals with disabilities: an important challenge for medical education. HPHR. 2021;44.
In a recent national survey, over 50% of physicians reported not feeling confident in their ability to provide care to individuals with disabilities. This finding is troubling as physicians are required by the Americans with Disabilities Act (1990) to ensure their practice is accessible to individuals with disabilities. This commentary addresses the need for including disability in medical education and to provide inclusive and quality care for individuals with disabilities. We offer four recommendations to enhance medical school curricula that would educate medical students to provide equitable health services to individuals with disabilities: 1) embed disability training throughout medical education; 2) educate medical students to recognize multiple models of disability; 3) include education and experience with universal design and supported decision-making; and 4) include individuals with all types of disabilities in medical education. Including disability education for medical students should better prepare future physicians for feeling confident in their ability to provide care to individuals with disabilities.
Individuals with disabilities represent one of the largest minoritized groups in the United States, as one in four adults in the United States has some type of disability.1 It has been thirty two years since the passage of the Americans with Disabilities Act (ADA), which legally requires physicians to provide equitable health care to those with disabilities. Individuals with disabilities nonetheless encounter negative health care experiences for a variety of reasons including, lack of trained health care providers,2 negative provider attitudes towards individuals with disabilities,2,3 and lack of accessible medical facilities and equipment.4 Compared to individuals without disabilities, those with disabilities are more likely to have comorbidities,5 are less likely to regularly participate in physical activity,6 and are more likely to be overweight or obese.7 These disparities highlight the clear need for individuals with disabilities to access health care in order to learn about making healthy choices and improving their health. However, one in three adults with disabilities report not having a health provider they regularly visit.1 When individuals with disabilities do access care, they are less likely to receive preventive care and screenings or be asked preventive health-related questions.8–11
The need to provide equitable health care to minoritized communities in the U.S., including the disability community, has been established (See Healthy People objectives, 2030) yet many physicians do not feel confident about their ability to provide care to the diverse disability population. In a recent national study, only half of physicians “strongly agreed” that they would welcome patients with disabilities into their practices (56.5%) and fewer (40.7%) physicians reported feeling confident in their ability to provide quality care to individuals with disabilities.2 Physicians also report having no formal training about their obligation to provide equitable treatment for individuals with disabilities, despite a federal civil rights law (ADA) requiring physicians to provide inclusive care.12
Introducing new material into medical school curricula has a number of barriers, including curriculum crowding, difficulty in introducing multi-system diseases and syndromes into organ-system based curricula, and lack of faculty who practice developmental medicine. A Curriculum Assessment of Needs (CAN) survey of U.S. medical school deans, physician residency program directors, medical students and deans of dental schools indicated the majority of medical schools and residency programs provided three hours or less training in the area of developmental medicine, a specialty area with a focus on serving those with disabilities.13 In this same survey, half of the Medical School Deans indicated that there was insufficient time available in their curriculum to include disability. Further, one national study on disability awareness estimated that only 20% of American medical/dental schools included disability awareness content.14
Physician attitudes toward disability also impact the care they provide. More than 80% of U.S. physicians report that people with significant disabilities have worse quality of life than individuals without disabilties.2 Physician bias may explain why individuals with disabilities are likely to be asked more questions about pain, depression and stress, and less likely to be asked questions about smoking, mammograms, and sexual activity. 8–11,15 Individual and institutional bias also likely contributed to the U.S Health and Human Services Office for Civil Rights releasing a bulletin providing guidance to health care providers that individuals with disabilities (or individuals with limited English skills, or needing religions accommodations) should not be denied medical care on the basis of “stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth‘ based on the presence or absence of disabilities or age” during the Coronavirus (COVID-19) surge in March 2020.16 Clearly, there is a need to train the medical profession on how they can provide accessible health care services to individuals with disabilities. As an interdisciplinary research team working towards improving access to cancer screening in women with disabilities, we provide the following recommendations for enhancements to medical school curricula to increase equity.
Several national efforts are underway to incorporate disability throughout medical curriculum programming curriculum. The National Curriculum Initiative in Developmental Medicine (NCIDM) was founded by the American Academy of Developmental Medicine and Dentistry (AADMD) in 2009 to define and integrate the concepts of developmental medicine into the medical school curriculum of every medical school in the United States.17 To date, eighteen medical schools have participated in a national implementation trial of the NCIDM.
Another group that has worked toward educating providers in disability is the Alliance for Disability in Health Care Education (ADHCE). ADHCE developed six core competencies on disability for health care in 2019. The six core competencies were developed with the assistance of 152 individuals with disabilities, disability experts, health educators and health care providers. The intent of these core competencies was to integrate the six competencies into existing health care curricula, lectures, readings, and patient experiences to further student learning.18
A potential resource the for the development and implementation of education in disability training for U.S. medical schools would be the Association of University Centers on Disabilities (AUCD), a national network of university-based centers (UCEDDs) focused on advancing research, policy, and practice for individuals with disabilities. Despite these efforts and available resources, the Association of American Medical Colleges (AAMC) Liaison Committee on Medical Education (LCME) accreditation standards have yet to include specific curricular requirements for disability.
One of the ADHCE core competencies includes understanding multiple models of disability beyond the medical cause or impact of a disability. Medical students should consider, compare, and contrast the medical, social models of disabilities, and the World Health Organization International Classification of Functioning (ICF). As the need for a more comprehensive understanding of disability has been endorsed by other experts19,20 educational interventions for medical students have been implemented to increase the knowledge and skills or change attitudes of medical students, though the effectiveness of these interventions has yet to be evaluated.21 Previous literature has demonstrated improved knowledge, attitudes and, skills of providers after participating in cultural competency educational interventions,22 and curriculum designers should examine the evidence from these interventions to identify the elements of the curricula (e.g., modality, quantity, length) that would be the most beneficial for disability awareness educational interventions. Medical students would also benefit from completing in self-assessments before and after participating in educational interventions such as the Disability Implicit Association Test (IAT),23,24 as the IAT has been used to promote awareness of implicit bias in medical students.24 Incorporating the IAT into educational interventions could also serve as a precursor to discussion and reflection. However, there is a need for additional studies that assess the efficacy of Disability IAT interventions in medical students.
Many individuals with disabilities face challenges with accessibility in accessing health care,4 communicating with providers,25 and not being included in decisions about their health.26 As such, teaching medical students about universal design and supported decision making are important elements to providing disability-inclusive care, and these concepts are also recognized in ADHCE’s core competencies. In applying universal design concepts, medical students should consider the design and composition of the health care service, so that the service is accessed, comprehended, and used by the greatest number of people regardless of age, size, ability or disability.27 Applying a universal design lens to educating patients about health conditions or procedures is not only relevant to patients with disabilities, but a wide variety of patients who may not disclose having literacy issues.28Aspects of universal design, such as the use of plain language, employing imagery/diagrams to describe procedures, use of augmentative and alternative communication devices, and physical accessibility in exam rooms should be incorporated into medical education. Many individuals with disabilities have guardians which limits the autonomy and independence in decision making of individuals with disabilities including health care decision choices.29As such, medical students should learn about disability advocacy initiatives, such as supported decision making, to best provide patient-centered health care to an individual with a disability. Supported decision making empowers individuals with disabilities to make their own decisions with assistance from trusted individuals or teams of chosen consultants, rather than a guardian making decisions for them.30 Medical students educated in the use of supported decision-making will be better equipped to provide patient-centered care for individuals with disabilities.
In accordance with the principle of “Nothing about us, without us” it is essential to include individuals with disabilities in medical education. Individuals with disabilities, their families, caregivers, and community advocacy organizations can provide important perspectives and describe their experiences through panel discussions, co-teaching in courses, community activities, and inclusion of people with disabilities in standardized patient programs. Evidence of medical students’ performance on clinical exams with standardized patients with disabilities is notably worse compared to standardized patients without disabilities31 thus medical programs should encourage including standardized patients with disabilities. Exposure to individuals with disabilities, specifically close contact, along with prior knowledge about individuals with disabilities, is associated with improved attitudes of medical students towards people with disabilities,32,33 however there is a need for rigorous assessment of interventions based on such contact. Providing opportunities for medical students to interact with individuals with disabilities may provide exposure to and experience for students who have not had previous contact in the past. When individuals with disabilities are invited to speak with medical students, medical students can be prompted to listen, identify, and reflect upon their disability education and its impact on the care of individuals with disabilities. For example, an individual with a disability could provide accounts of their health care experiences and candid discussions about what the provider did well and what the provider could have improved on.
The disability population continues to grow in the United States. As the ADA was passed thirty-two years ago, individuals with disabilities should receive equitable health care. The four recommendations listed in this commentary can contribute to medical students’ knowledge and skills to provide equitable care to individuals with disabilities. Future research should investigate the efficacy of the recommendations described in this commentary and evaluate the effectiveness of integrating disability into medical education. Potential limitations in evaluating the effectiveness of the described recommendations include finding time in the crowded medical school curriculum and collecting longitudinal data from medical students after graduation to evaluate the long-term effects of disability education interventions.
This work was funded by the Partnership for Native American Cancer Prevention (NACP), a National Institutes of Health (NIH), and National Cancer Institute (NCI) funded partnership under parallel grants, U54CA143924 (UACC) and U54CA143925 (NAU) and by an Interagency Service Agreement with the Arizona Developmental Disabilities Planning Council (ADPC).
The author(s) have no relevant financial disclosures or conflicts of interest.
Michele Sky Lee is a doctoral student in the Interdisciplinary Health PhD program at Northern Arizona University and is a Research Associate at the Institute for Human Development at Northern Arizona University.
Monica Diaz is a second-year medical student at The University of Arizona College of Medicine, Tucson.
Tamsen Bassford MD is an associate professor in Family and Community Medicine at University of Arizona. Her work focuses on models of primary care for adults with intellectual developmental disabilities, and developmental medicine education and training for medical students and residents.
Julie Armin, PhD is an assistant professor in Family & Community Medicine in the College of Medicine at The University of Arizona. Her scholarship focuses on health equity training with medical students and cancer disparities research in collaboration with communities. She is affiliated faculty with the Sonoran University Center for Excellence in Disabilities (SUCEDD).
Dr. Heather Williamson is an Associate Professor in the Department of Occupational Therapy and the Center for Health Equity Research at Northern Arizona University. She is a licensed occupational therapist and a Fellow of the American Association on Intellectual and Developmental Disabilities.