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

  Christina Marsack-Topolewski, LMSW, PhD is a licensed social worker and an Associate Professor of Social Work at Eastern Michigan University. She received her bachelor’s of science in Special Education from Wayne State University, master’s degree in Social Work from the University of Michigan, and her PhD in Social Work with a dual title in Gerontology from Wayne State University. She has 20 years of experience supporting individuals with disabilities and their family caregivers. She has consulted on cases of individuals with disabilities with co-occurring conditions, including chronic pain. Dr. Marsack-Topolewski has worked as a professor, clinical therapist, teacher, consultant, and speaker. She has published over 80 research articles in scholarly journals and encyclopedias regarding individuals with disabilities, family caregiving, and aging.

  Dr. Marsack-Topolewski has served as the lead principal investigator on multiple grant-funded programs tailoring services for individuals with disabilities older adults, and chronic illnesses. She is an appointed board member of the U.S. National Task Group (NTG) on Intellectual Disability and Dementia Practices. Dr. Marsack-Topolewski’s research has been featured on National Public Radio (NPR) and ABC News Detroit. Over the past five years, she testified before members of the Michigan Legislature to advocate for new laws that protect against the exploitation and abuse of adults with disabilities. The first of these house bills was signed into law in the state of Michigan in December 2023. In 2024, she received the Ronald W. Collins Distinguished Research Award for Research Excellence. In addition, she received the Arc of Oakland County’s Advocacy Hall of Fame Award in 2024.

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.