CESPHN Disability Network Meeting: Palliative and End-of-Life Care
Our engagement team recently had the pleasure to attend the CESPHN Disability Network meeting. Here is what we learnt about Palliative and End of care for People with a Disability.
Table of Contents
💜Closing the Gaps with Compassion, Evidence and Equity
At Leora, we believe everyone deserves dignity, choice, and comfort, especially at the end of life. But for people with intellectual disability, that’s not always the reality.
A recent CESPHN Disability Network meeting focused on the current state of palliative and end-of-life care for people with intellectual disability and the findings were both confronting and deeply motivating.
⚠️ The Reality: Gaps that Cannot Be Ignored
- 38% of deaths in NSW’s intellectual disability cohort were found to be potentially avoidable
- Only 30% received any form of palliative care between 2001 and 2018
- A staggering 70% had no Medicare-recorded palliative care encounters at all
This data shows what many frontline workers have long observed: people with intellectual disability are routinely excluded from the kind of end-of-life care that others take for granted.
🌱 What Needs to Change
One of the most powerful insights from the session came from Maria Heaton, Australia’s only Intellectual Disability Palliative Care Clinical Nurse Consultant (CNC). Maria is leading a first-of-its-kind care model in Southeast Sydney, one that integrates early palliative support, tailored symptom management, and holistic care across nine teams.
Her message was clear:
“Palliative care isn’t about dying. It’s about living well – right to the end.”
She highlighted the importance of introducing palliative care early (at diagnosis or 24 months before death), to build trust, manage symptoms, and provide spiritual, emotional, and practical support.
🏠 Challenges in Group Homes
Maria also shared the complex challenges facing people with intellectual disability living in group homes:
- Inconsistent rules around medication administration, especially with end-of-life drugs like morphine
- Disability support workers (DSWs) often lack authorisation or training to manage complex symptoms
- Funding shortfalls post-hospital discharge
- Misunderstandings between health and disability sectors about roles and responsibilities
These systemic issues not only prevent people from dying at home if they choose to…they can also lead to avoidable pain, distress, and repeated emergency department visits.
To address this, Maria created a Community Intellectual Disability Palliative Care Plan, signed off by GPs and specialists, which gives DSWs clear symptom management guidance. She also delivers regular grief and palliative care training to house staff. It’s a simple, practical intervention making a huge difference.
🏥 Health System Barriers
Unfortunately, many barriers still persist in mainstream healthcare:
- Diagnostic overshadowing (where behavioural changes are misread as ‘disability-related’ instead of symptoms)
- Inaccessible or inappropriate communication
- Poor discharge planning
- Emergency departments lacking palliative care champions or clear protocols
Perhaps most worryingly, people with intellectual disability are still excluded from clinical trials, further entrenching health inequities.
🌈 A Vision for Change
Maria’s vision is one we deeply align with at Leora:
- Navigators or palliative care champions in every ED
- Clear, collaborative discharge planning
- Training and upskilling of both disability and health staff
- Scaling successful models like Southeast Sydney’s across NSW and nationally
- Culturally safe, trauma-informed processes for families after death, particularly in group homes
This isn’t just about improving services. It’s about honouring the lives of people with intellectual disability by ensuring they have the same rights to comfort, control, and compassionate care at the end of life as anyone else.
💬 What This Means for Us at Leora
This session was a powerful reminder that if we want to provide truly person-centred care, we must also lead the conversation on end-of-life inclusion.
At Leora, we are:
- Reviewing how we support early palliative planning in our services
- Exploring how we can better equip our team members through training and system partnerships
- Advocating for care models that work across both health and disability systems, not in silos
We’d like to thank CESPHN, Maria Heaton, and all those who shared insights in the meeting. This work matters deeply and we’re committed to playing our part in making change happen.