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Advance Care Planning for Individuals with Intellectual and Developmental Disabilities (IDD): Where Do We Go From Here?

CE Hours 3

About this course

Individuals with intellectual and developmental disabilities (IDD) are often forgotten when it comes to conversation, planning, and services in adulthood. COVID-19 provided a wakeup call for professionals, family caregivers, and broader caregiving networks to support individuals with IDD in planning for life for when their health changes and for their final days. This 3-hour training will provide a framework for understanding the multi-faceted nature of advance care planning, barriers to advance care planning, and reasons for advance care planning to support individuals with IDD. The number of older adults with IDD continues to increase; therefore, it is essential to carve out time to support individuals with IDD and their caregivers to plan for the future. This training will devote time to ethical practice and will discuss how to intentionally integrate ethical practice advocacy for advance care planning. This session will provide practical information to integrate advance care planning in work that is already being done to best meet the needs of adults with IDD throughout the life 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

This self-paced course is intended for behavioral health professionals, including Psychologists, Social Workers, Counselors, MFT's and Addiction Professionals.

Course Instructor(s)

  • Christina Marsack-Topolewski, Ph.D., LMSW

    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, dementia, 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

DISCLOSURE OF RELEVANT FINANCIAL RELATIONSHIPS CE Learning Systems adheres to the ACCME’s Standards for Integrity and Independence in Accredited Continuing Medical Education. Any individuals in a position to control the content of a CE activity ― including faculty, planners, reviewers, or others ― are required to disclose all relevant financial relationships with ineligible entities (formerly known as commercial interests). All relevant conflicts of interest have been mitigated prior to the commencement of the activity. The following relevant financial relationships have been disclosed by this activity’s planners, faculty, and the reviewer: PLANNERS AND REVIEWER The planners of this activity have reported that they have no relevant financial relationships. FACULTY The faculty of this activity have reported that they have no relevant financial relationships.

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.