Description:
This presentation will explore the concept of palliative care, including its continuum for individuals with chronic, noncurative, and end-of-life illnesses. Attendees will learn how disability-affirming approaches can make palliative care more accessible and foster meaningful partnerships with individuals with developmental disabilities. Practical resources will be shared, along with two case examples to illustrate key concepts. The session will include small-group breakouts for deeper discussion and reflection.
Learning Objectives:
By end of the program, participants will be able to:
1. Define palliative care and describe its continuum, including for individuals with chronic, noncurative, and end-of-life illnesses.
2. Explore practical resources to support the implementation of inclusive palliative care practices.
3. Analyze two case examples to understand the application of key concepts in real-world scenarios.
Trainer:
Melissa Levin, MSW, LICSW, (she/her) is a is a senior social worker at Dana-Farber Cancer Institute and a program specialist for The Neuro-Inclusive Oncology Care and Empowerment Program. She provides supportive psycho-social oncology services to people who have intellectual and/ or developmental disabilities (IDD) and are facing cancer. She also works on systems improvements to remove barriers impacting health outcomes. In her prior roles, Melissa worked as a special education school social worker, and as a researcher alongside disability advocates delivering a self-advocacy curriculum to youth with IDD across several schools and community sites in Massachusetts. She is a former Boston Children’s Hospital LEND fellow (leadership education in neuro-developmental and related disabilities). She is a mom of three elementary-aged kids, one dog, and a flock of chickens.
References:
- Adam, E., Sleeman, K. E., Brearley, S., Hunt, K., & Tuffrey-Wijne, I. (2020). The palliative care needs of adults with intellectual disabilities and their access to palliative care services: A systematic review. Palliative Medicine, 34(8), 1006–1018. https://doi.org/10.1177/0269216320932774
- Curd, J. (2025). Perspective chapter: Global perspectives on disability and palliative care. In Global perspectives on disability and palliative care. IntechOpen. https://doi.org/10.5772/intechopen.1009162
- Dunkley, S., & Sales, R. (2014). The challenges of providing palliative care for people with intellectual disabilities: A literature review. International Journal of Palliative Nursing, 20(6), 279–284. https://doi.org/10.12968/ijpn.2014.20.6.279
- Sue, K., & Mar, N. (2021). Attitudes on palliative care for adults with developmental disabilities. Journal of Palliative Medicine, 24(3), 391–396. https://doi.org/10.1089/jpm.2020.0274
- Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M., & de Veer, A. J. E. (2017). Advance care planning in palliative care for people with intellectual disabilities: A systematic review. Journal of Pain and Symptom Management, 54(6), 938–960.e1. https://doi.org/10.1016/j.jpainsymman.2017.04.016