Advancing Compassionate Hospice & Palliative Care for People with Neurodevelopmental Complexity (CPC-NDC) |
|
About the CPC-NDC Initiative | In British Columbia, the disability care system and the hospice/palliative care systems operate as two complex and entirely disconnected ecosystems. This fragmentation leaves highly vulnerable populations of children, youth and adults with neurodevelopmental disability and/or medical complexity without a palliative approach to care and dignified end-of-life support. It forces families and caregivers to bear an unsustainable burden. To bridge this gap, the initial collaborative effort in 2022 was to form a Steering Group with individuals from the Pacific Autism Family Network (PAFN); the Sovereign Order of St. John of Jerusalem, Knights Hospitaller Vancouver Commandery (SOSJ); and the BC Centre for Palliative Care (BCCPC). In 2024, the BC Hospice Palliative Care Association joined the Steering Committee. This collaboration helped spark broader and meaningful engagement with experts and providers across the disability and health sectors, researchers, and people with lived experience. This wider collaborative effort is referred to as the CPC-NDC Community of Practice (CoP). .png){kind=small}  .png){kind=small}  |
The Action Plan: Moving from Talk to Action | Advancing Compassionate Hospice & Palliative Care for People with Neurodevelopmental Complexity (CPC-NDC) is a strategic action plan developed by the CPC-NDC Community of Practice. It synthesizes years of cross-sector relationship building, lived-experience storytelling, and the actionable findings of the February 2026 Provincial Roundtables to provide a blueprint for equitable, person-centred palliative care. In February 2026, the CoP held in-person and online roundtable events to identify concrete actions to improve hospice and palliative care for individuals with neurodevelopmental disabilities and medical complexity (NDC). Attendees identified key priorities and confirmed their commitment and readiness to continue to collaborate. |
2026 CPC-NDC Strategic Action PlanRead the full 17-page Action Plan, including the collaboration history, proposed Working Groups, and implementation framework. |
|
Why Action Is Needed | Despite pockets of excellence, the current system is highly fragmented, leaving the most vulnerable populations behind. Our healthcare and social systems operate in silos, meaning that outcomes currently rely on “who you know” rather than reliable, standardized pathways. Some of the most urgent gaps identified include:
|
The Path Forward: Four Key Working Groups |
| 1. Strengthen Education and Awareness There is a recognized need to address cultural attitudes and increase understanding through education. Potential areas for action include developing accessible, plain-language resources for the public, integrating relevant content into continuing medical education (CME), and exploring opportunities to incorporate these topics into provincial training programs. |
| 2. Support Unified Patient Information Improving coordination and continuity of care was identified as an important priority. Future opportunities could include exploring a provincial approach to shared patient information, such as a "Source of Truth" passport, that brings together collaborative care planning, advance care directives, sensory and communication preferences, and quality-of-life indicators. |
| 3. Advance Inclusive Decision-Making The community identified the importance of making decision-making processes more inclusive and responsive to individual needs. This includes exploring language around palliative care that reduces fear, promotes personhood, and recognizes the value of every life. It also highlights the need for flexible care processes that allow neurodiverse individuals additional time, repeated check-ins, and supported, relational approaches to decision-making. |
| 4. Improve Guidance for Non-Hospital Settings There is an opportunity to strengthen support for caregivers working across a range of residential and community settings. Potential areas of focus include targeted training, stronger connections with health-care experts to help guide workers as individual care needs change, and clearer guidance around the delegation of care tasks. |
Our Next Steps: Advancing the Work | Building on the completed groundwork, the Action Plan identifies four next steps to sustain collaboration and advance system improvements.
|
A Call for Investment in System Transformation | This initiative represents a rare, community-driven coalition that is actively dismantling long-standing silos that divide the disability and palliative care sectors. We are calling on philanthropic partners, government leaders, and system advocates to invest in the next phase of this work, transforming aligned ideas into coordinated, sustainable action. We have the blueprint, the community momentum, and a demonstrated ability to drive real-world impact. What remains is the targeted investment required to operationalize these solutions and scale them up including:
The time for aspirational dialogue has passed. The need is immediate, and the path forward is clear. Join us in making compassionate, coordinated care a reality for every British Columbian living with neurodevelopmental disabilities and medical complexity. |
For More Information | To learn more about the CPC-NDC Community of Practice, our working groups, or how to invest in the next phase of this system transformation, please contact: Diane Finegood Pablita Thomas |
About the associationBCHPCA represents its members: individuals and organizations that deliver hospice/palliative care and bereavement services and programs across British Columbia and the Yukon Territory. | Contact usEmail: office@bchpca.org Unit 1100- 1200 West 73rd Ave, | Stay InTouchKeep up to date on upcoming events and recent job postings |
The BC Hospice Palliative Care Association (BCHPCA) recognizes the traditional land of the First Nations, Métis and Inuit peoples who have walked before us and minded the lands we now call home for time immemorial. Hospice Societies have been able to support, aid and care for many people on these same lands. The BCHPCA Offices are located on the ancestral, traditional, and unceded lands of the Coast Salish Peoples, including the territories of the Musqueam, Squamish, and TsleilWaututh Nations.
|
Copyright © BC Hospice Palliative Care Association 2024 | Privacy Policy | Website by Merge Creative Inc |