What is the Healthy Dying for People with Disability project?

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Healthy dying for people with disability (HD4PWD) supports people with intellectual disability at the end of life. It is a toolkit to support people’s goals and deliver the best possible outcomes in life and death.

Why is this important?

Preparing for the end of life is a challenging time. For people with an intellectual disability it can be distressing and confusing and the role of primary health care nurses is critical in enhancing and complementing the care provided by Direct Support Workers and clinicians to improve the outcomes for people with intellectual disability, particularly at end of life.

An estimated 668,100 Australians (2.9% of the population) have an intellectual disability. Navigating the disability and health system is complex and at end of life, these complexities are compounded.

Compared with the rest of the population, people with an intellectual disability die younger. They often have multiple medical conditions, require specialist input, frequent hospital visits, and multiple medications. They experience:

  • more than twice the rate of avoidable deaths
  • twice the rate of emergency department and hospital admissions
  • complex mental health conditions
  • diagnostic overshadowing.

In response to these health inequities, Li-Ve Tasmania has implemented the Healthy Dying for People with Disability project. The project is designed to:

  • provide meaningful support and information for people with intellectual disability and their carers
  • enhance the workforce capability of disability and service providers caring for people with a life-limiting condition.

The project achieves this by supporting improved systems, practices, and communication through education and connecting providers.

Communicating for end of life - a toolkit

The Communicating for end of life – a toolkit, an evidence-based resource, is designed to link disability support providers, healthcare providers and services, families and carers. It contains a set of practical tools to build capacity and capability around decision-making, accountability, communication, documentation and coordination at the end of life.


Introduction video

Reflective Practice Learning Module

Take our short learning module to find out how the Healthy Dying for People with Disability toolkit can support best possible outcomes at the end of life.

Start the Reflective Practice Learning Module

About Li-Ve Tasmania

Li-Ve Tasmania is a leader in disability services, offering flexible and individualised supports to suit the needs of people and their families across Tasmania. Li-Ve Tasmania has provided genuine person-centred support to Tasmanians living with disability for almost 70 years. A registered NDIS provider, services include general supports, in-home support, supported independent living, disability accommodation, community access, and transportation and day support programs.

The project is funded by the Australian Government Department of Social Services Information Linkages and Capacity Building (ILC) program.


Contacts

Email: healthydying@livetasmania.org
Phone: 03 6227 5400

Walker, Lynne. Practise Nurses - Working smarter in general practice. RACGP - Reprinted from Australian Family Physician Vol.35. No 1/2. January/February 2006.
Council for Intellectual Disability. The Health of People with Intellectual Disability. Commitments sought from Australian political parties. February 2019.

Page updated 7 November 2022

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