In September 2019, founding members (Claire Staniforth, Angela Gonzales, Tracey Human, and Bob Parke) came together in their recognition of the need for a strategy to address the significant lack of equitable access to a palliative approach to care, that is proactive, reliable, and responsive for people with IDD.
A call to action was put forth, over 70 individuals and organization representatives from Developmental Services, Palliative Care and healthcare sectors across Ontario responded to the call.
In January 2021, the inaugural meeting of the Intellectual and Developmental Disability Palliative Care Committee (IDD PCC) took place with the aim of improving the palliative care and end-of-life experience for people living with intellectual and developmental disability (PWIDD) through capacity building.
In April 2025, the IDD PCC evolved to the Intellectual and Developmental Disability Palliative Care Network (IDD PCN) to continue this important work.
“Change is often dependent initially on the commitment of small but growing groups of dedicated people.”
Dr. Irene Tuffrey-Wijne, Nurse, Professor, Researcher, Author, Leader in IDD Palliative Care
The vision of the IDD PCN is that all persons with intellectual and developmental disability and their circle of support have equitable access to high quality palliative care. This incorporates respect for personhood, dignity, trauma-informed approaches, and early identification of palliative care needs. Palliative care for PWIDD is provided by an effective, responsive, and collaborative care team that includes developmental services at the core along with healthcare and palliative care providers.
To capacity build provider confidence and competency in IDD specific palliative care. To be a partner in enabling equitable access to high-quality palliative care for people with intellectual and developmental disability.
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