Robyn A Wallace, Tasmanian School of Medicine, CoHM
People with intellectual disability and their families indicate that they want access to and participation in mainstream healthcare rather than separate services for them (Commonwealth of Australia, 2021). Yet mainstream health services present a myriad of physical, attitudinal and process barriers for them (Shady et al., 2022); and clinicians feel overwhelmed and inadequately prepared in carrying out their responsibilities for their patients with intellectual disability (Lagu et al., 2022; Wilkinson et al., 2012). As a result, and as reflected in data on health disparities, people with intellectual disability often miss out on usual safe and high-quality health care experienced by their peers without disability (Trollor et al., 2017; Heslop et al., 2014).
The Australian Commission on Safety and Quality in Health Care has proposed the formulation and application of reasonable adjustments to mainstream health services to facilitate more inclusive health settings for people with disabilities. The Commission describes a ‘reasonable adjustment’ as “a small change to an existing approach or process essential to ensure the person’s access to a service” (Australian Commission on Safety and Quality on Health Care, 2023). Their relevance spans mainstream health systems and different health disciplines, to the individual care of the patient with intellectual disability.
The formulation of reasonable adjustments in each of these settings requires: considerations of the individual and general impacts of living with intellectual disability; defining roles of disability supports in facilitating that access to health care; and working out the practical impact of interface with a disability sector which has differing sets of regulations to the health sector. In turn, implementation of reasonable adjustments can be eased by categorising these impacts as they apply to small changes to the usual knowledge, content, process and organisation involved in clinical care.
In teaching medical students, it is proposed that success in students’ future ability to formulate and apply reasonable adjustments to their mainstream clinical care for their patients with intellectual disability requires a sound medical education in which such ways of thinking are embedded early. This means that teaching medical students about equitable health care for people with intellectual disability is to be structured around insertion of a constant inquiry accompanying usual clinical learning: what small changes to usual clinical knowledge (e.g., biopsychosocial aspects of living with intellectual disability, NDIS, disability values, syndromal implications for health), process (e.g., how to communicate with people with intellectual disability, working out plans of disability supports), content (e.g., nature of intellectual disability, usual disability supports, capacity) and organisation (e.g., longer and more frequent appointments, provision of easy to read material) of care when considering the patient’s intellectual disability, the roles of their disability supports, and the influence of a disability-health sectoral interface (Wallace, 2023).
Medical student learning about common diseases should, as much as possible, include practice questions posed by the medical educator such as: “what if this patient had intellectual disability?”, “what reasonable adjustments would need to be made to improve the access and participation of the patient in their health care of this particular disease?”, and with this, the above process describing how to formulate reasonable adjustments is practiced. Medical educator managers should advise their clinical colleague teachers to include such inquiry in their teaching.
Insertion of the medical education format as described does not exclude other processes of medical education specifically about intellectual disability such as an “Intellectual disability health care capabilities unit” (Australian Government, 2022) but can viewed as necessary and complementary medical school education.
Australian Commission on Safety and Quality on Health Care. (2023). Intellectual disability and the National Safety and Quality Health Service Standards. https://www.safetyandquality.gov.au/publications-and-resources/resource-library/intellectual-disability-actions-clinicians-fact-sheet
Australian Government (Department of Health and Aged Care). (2022). Consultation paper: development of intellectual disability health core capabilities. https://consultations.health.gov.au/primary-care-mental-health-division/intellectual-disability-health-core-capabilities/
Commonwealth of Australia (Department of Social Services). (2021). Australia’s Disability Strategy 2021-2031. https://www.disabilitygateway.gov.au/sites/default/files/documents/2021-11/1786-australias-disability.pdf
Heslop, P., Blair, P. S., Fleming, P., Hoghton, M., Marriott, A., & Russ, L. (2014). The Confidential Inquiry into premature deaths of people with intellectual disabilities in the UK: A population-based study. The Lancet, 383(9920), 889–895. https://doi.org/10.1016/S0140-6736(13)62026-7
Lagu, T., Haywood, C., Reimold, K., DeJong, C., Walker Sterling, R., & Iezzoni, L. I. (2022). 'I Am Not The Doctor For You': Physicians' attitudes about caring for people with disabilities. Health affairs (Project Hope), 41(10), 1387–1395. https://doi.org/10.1377/hlthaff.2022.00475
Shady, K., Phillips, S., & Newman, S. (2022). Barriers and facilitators to healthcare access in adults with intellectual and developmental disorders and communication difficulties: An integrative review. Review journal of autism and developmental disorders, 1–13. Advance online publication. https://doi.org/10.1007/s40489-022-00324-8
Trollor J., Srasuebkul P., Xu H., & Howlett, S., (2017). Cause of death and potentially avoidable deaths in Australian adults with intellectual disability using retrospective linked data. BMJ Open, 7:e013489. https://doi.org/10.1136/bmjopen-2016-013489
Wallace, R. (2023). A system for developing reasonable adjustments to the application of the National Safety and Quality Health Service Standards for adults with intellectual disability in Australian hospital settings. Submitted for publication.
Wilkinson, J., Dreyfus, D., Cerreto, M., & Bokhour, B. (2012). "Sometimes I feel overwhelmed": Educational needs of family physicians caring for people with intellectual disability. Intellectual and developmental disabilities, 50(3), 243–250. https://doi.org/10.1352/1934-9556-50.3.243