Mrs Maria Heaton1
1South Easter Sydney Local Health District (SESLHD), Sutherland, Australia
Biography:
Maria Heaton is the Intellectual Disability Palliative Care Lead CNC for SESLHD, with over 12 years as Paediatric Palliative Care CNC. Her lived experience as a carer for her children Tristan and Tiarna, both diagnosed with Lissencephaly, shaped her advocacy and clinical leadership. Maria was named NSW Carer of the Year in 2012 and co-chairs the ACI Intellectual Disability Network. She has served on the NSW Carers Advisory Council and the Council for Intellectual Disability Board. Maria holds a Masters in Nursing Education and champions compassionate, inclusive care for people with intellectual disability.
Abstract:
Background:
In Australia, individuals with intellectual disabilities face higher rates of premature death and life-limiting conditions. To address the gaps in specialised palliative care for this vulnerable group, a Local Health District developed the Intellectual Disability Palliative Care Model of Care (ID PC MoC).
Aim:
Developed in 2024, the Intellectual Disability Palliative Care Model of Care (ID PC MoC) aims to improve palliative care outcomes by coordinating care, streamlining referrals, enhancing access to specialist services, and reducing emergency department visits and avoidable hospital admissions.
Methods:
The model is based on person-centred, holistic care, multidisciplinary collaboration, and support for families and caregivers. It aligns with the United Nations Convention on the Rights of Persons with Disabilities and the National Safety and Quality Health Service (NSQHS) Standards. The model integrates intellectual disability expertise within generalist and specialist palliative care services, ensuring equitable access for patients with intellectual disabilities, including Aboriginal and Torres Strait Islander individuals.
Outcomes:
Key components include a clear service referral pathway, access to specialist intellectual disability and palliative care clinicians, and robust care coordination. A Clinical Nurse Consultant (CNC) within the Community Palliative Supportive Care Service leads the model. The governance structure includes a steering committee providing expert advice and ensuring alignment with best practices. Consultation with health, NDIS providers, and consumers has been positive. Feedback highlights the invaluable support provided by the ID PC CNC.
Conclusion:
The ID PC MoC is currently being piloted, with learnings expected for other marginalised groups accessing palliative care. The model addresses existing care gaps and promotes collaborative, integrated care, setting a precedent for palliative care services across Australia. This model is also being externally evaluated by the National Centre of Excellence in Intellectual Disability Health over 2 years and is currently in the process of getting ethics approval.