About this course

Learning Objectives

• Articulate what advance care planning entails and the dimensions of advance care planning.
• Describe the barriers to and reasons for advance care planning in individuals with IDD.
• Explain strategies to integrate advance care planning into the person-centered planning process.
• Discuss how to advocate for ethical practices and approaches to advance care planning for individuals with IDD.

Learning Levels

• All Levels

Target Audience

Course Instructor(s)

• 

  Christina Marsack-Topolewski, Ph.D., LMSW

  Associate Professor of Social Work

  Dr. Christina Marsack-Topolewski is an associate professor of Social Work at Eastern Michigan University. She received a bachelor’s of science in Special Education from Wayne State University. Training under a fellowship at the University of Michigan, she received her master’s in Social Work. Dr. Marsack-Topolewski received her PhD in Social Work from Wayne State University. She has worked with individuals with intellectual and developmental disabilities (IDDs) and their families for over 20 years. Her practice work has been in both the public schools and a clinical setting. She has over 70 peer-reviewed publications in national and international journals and encyclopedias. Her research predominantly focuses on individuals with IDDs, their caregivers, compound caregiving, coping and self-care, service use and delivery, as well as future planning. Dr. Marsack-Topolewski was awarded the Ronald W. Collins Distinguished Faculty Award for Research Excellence. She has collaborated on multiple grant-funded projects tailoring services to individuals with IDDs and other disabilities. In 2019, she was appointed to the board of the National Task Group on Intellectual Disability and Dementia Practices. She is engaged in policy advocacy and has provided testimony at the state-level (Michigan) to advocate for state house bills that would provide legal protections for vulnerable populations, such as individuals with IDDs. The first of these was signed into law in Michigan in December 2023.

Disclosure

References

• Acharya, K., Schindler, A., & Heller, T. (2016) Aging: Demographics, trajectories and health system issues. In I. L. Rubin, J. Merrick, D. E. Greydanus, & D. R. Patel (Eds.), Health care for people with intellectual and developmental disabilities across the lifespan (pp. 1423–1432). Springer International Publishing.
• ACP Decisions. 19 Evidence-based benefits of advance care planning. Retrieved from https://www.acpdecisions.org/19-evidence-based-benefits-of-advance-care-planning/
• Carr, D., & Luth, E. A. (2017). Advance care planning: Contemporary issues and future directions. Innovation in Aging, 1(1), 1–10. https://doi.org/10.1093/geroni/igx012
• Cheung, J. T., Au, D., Ip, A. H., Chan, J., Ng, K., Cheung, L., ... & Woo, J. (2020). Barriers to advance care planning: a qualitative study of seriously ill Chinese patients and their families. BMC palliative care, 19(1), 1-9.
• Church, H. L., Marsack-Topolewski, C., McGinley, J. M., & Knoke, V. (2021). Advance Care Planning Within Individualized Care Plans: A Component of Emergency Preparedness. Developmental Disabilities Network Journal, 2(1), 3.
• Heller, T., Scott, H., & Janicki, M. P. (2017). Caregiving and intellectual and developmental disabilities and dementia: Report of the pre-summit workgroup on caregiving and intellectual and developmental disabilities. https://aadmd.org/ sites/default/files/Presummit%20on%20IDD% 20Brief-FINAL80 120 17a.pdf
• Lee, C. E., Burke, M. M., & Stelter, C. R. (2019). Exploring the perspectives of parents and siblings toward future planning for individuals with intellectual and developmental disabilities. Intellectual and developmental disabilities, 57(3), 198-211.
• Lougheed, D. C. (2019). Approach to providing care for adults with intellectual and developmental disabilities. Canadian Family Physician, 65(Supp 1), S14-18.
• Marsack-Topolewski, C. N., & Graves, J. M. (2020). “I worry about his future!” Challenges to future planning for adult children with ASD. Journal of Family Social Work, 23(1), 71-85.
• McGinley, J., Marsack-Topolewski, C. N., Church, H. L., & Knoke, V. (2021). Advance care planning for individuals with intellectual and Developmental Disabilities: A State-by-State content analysis of person-centered service plans. Intellectual and Developmental Disabilities, 59(4), 352-364.
• Moran, J. (2017). General aging in intellectual and developmental disabilities: Aging with an intellectual and developmental disability. Center for Developmental Disabilities Evaluation and Research. Presented January 2017.
• Moran, J. (2017). General aging in intellectual and developmental disabilities: Aging with an intellectual and developmental disability. Center for Developmental Disabilities Evaluation and Research. Presented January 2017.
• The Arc Center for Future Planning. (2016). Where to start. https://futureplanning.thearc.org/pages/ learn/where-to-start/expressing-wishes-for-the future
• United States Department of Health and Human Services. (2007). Literature review on advance directives (#HHS-100-03-0023). U.S. Government Printing Office.