Educating Providers through Narrative Advocacy: Promoting Health Equity for Individuals with Intellectual and Developmental Disabilities (I/DD) and Chronic Health Conditions
Humans are not ideally set up to understand logic; they are set up to understand stories. – Roger C. Schank, Ph.D.
The Center for Community Inclusion and Disability has developed educational outreach to sensitize and inform a variety of healthcare providers about the healthcare needs of persons with intellectual and developmental disabilities (I/DD) and chronic health conditions.
Narrative advocacy, in which individuals with I/DD and chronic health conditions share personal stories of their healthcare experiences with providers, is a powerful and effective educational tool.
Guided by key documents including the National Council on Disability Health Equity Framework for People with Disabilities (PDF), Core Competencies on Disability for Health Care Education (PDF) and the Ray Graham Association Health Resume (PDF), educational sessions (offered both in-person and online) will provide opportunities for information sharing and dialogue. Links to these documents can be found in the Selected Resources section below.
Funding Source
U.S. Department of Health and Human Services, Administration for Community Living, Office on Intellectual and Developmental Disabilities (Grant No. 90DDUC0056).
Funding Period
July 1, 2020 – June 30, 2023
Project Personnel
Janet May, M.Ed.,M.S., Project Coordinator
University of Maine
Center for Community Inclusion and Disability Studies
5717 Corbett Hall, Rm 241
Orono, ME 04469-5717
207.581.1383
207.581.1084
800.203.6957
207.581.1231 (Fax)
TTY users call Maine Relay 711
janet.may@maine.edu
Avery Olmstead, Community Member Consultant
University of Maine
Center for Community Inclusion and Disability Studies
5717 Corbett Hall, Rm 234
Orono, ME 04469-5717
207.581-1084
800.203.6957
207.581-1231 (Fax)
TTY users call Maine Relay 711
Maggie Hoffman, Family Member Consultant
University of Maine
Center for Community Inclusion and Disability Studies
5717 Corbett Hall, Rm 234
Orono, ME 04469-5717
207.581-1084
800.203.6957
207.581-1231 (Fax)
TTY users call Maine Relay 711
Links
Selected Resources
- Core Competencies on Disability for Health Care Education (PDF) – These core competencies establish the baseline expertise required to provide quality care to patients with disabilities.
- National Council on Disability Framework to End Health Disparities of People with Disabilities (PDF) [Updated May 2023] – This Policy Brief provides rationale for the need of an all-of-government approach to achieve health equity in the United States and our territories for the largest unrecognized minority group in this country, the over 61 million people with disabilities, and sets forth a framework to achieve health equity for all people with disabilities.
- Physician Practice Readiness Form – Caring for adult patients with intellectual or developmental disability (PDF) – This form will help you prepare for visits with adult patients with intellectual or developmental disabilities for a positive experience and to achieve the best outcomes for both caregivers and patients.
- Ray Graham Association Health Resume (PDF) – The Health Resume is a tool to facilitate communication between the patent and provider. It is to be used throughout all phases of treatment and included in every person with IDD’s electronic medical record.
Selected Peer-Reviewed Journal Articles
- Agaronnik, N., Campbell, E., Ressalam, J., & Iezzoni, L., (2019, February). Exploring issues relating to disability cultural competence among practicing physicians. Disability and Health Journal, 12(3), 403-410. https://www.sciencedirect.com/science/article/am/pii/S1936657419300263
- Bourne, M. J., Smeltzer, S. C., & Kelly, M. M. (2021, November). Healthcare inequities among adults with developmental disability: An integrative review with implications for nursing education. Nurse Education in Practice, 57. https://www.sciencedirect.com/science/article/abs/pii/S1471595321002614?via%3Dihub
- Breuner, C. C., Alderman, E. M., Jewell, J., Committee on Adolescence, Committee on Hospital Care. (2023). The Hospitalized Adolescent [Policy Statement] (PDF). American Academy of Pediatrics, 151(2), ISSN 0031-4005. EISSN 1098-4275. https://publications.aap.org/pediatrics/article/151/2/e2022060647/190500/The-Hospitalized-Adolescent
- Lagu, T., Haywood, C., Reimold, K., DeJong, C., Sterling, R. & Iezzoni, L. (2022, October). ‘I am not the doctor for you’: Physicians’ attitudes about caring for people with disabilities. Health Affairs, 41(10), 1387-1395. https://www.healthaffairs.org/doi/epdf/10.1377/hlthaff.2022.00475