Healthy Dying for People with Disability Project
A blog post written by Darren Mathewson
Preparing for the end of life is a challenging time. For people with an intellectual disability, it can also be complicated and confusing. That’s why supporting people with an intellectual disability at end of life is such an important element of person-centred care - for the person, their support staff, and their carers and families.
Li-Ve Tasmania is implementing the Healthy Dying for People with Disability (HD4PWD) project. This project is designed to provide meaningful support and information for people with intellectual disability and the community of carers supporting them. The project’s goal is to enhance the workforce capability of disability and mainstream service providers who care for people with a life-limiting condition. It does this by supporting better systems and practices, and great communication. It also educates and connects mainstream health services and disability support providers.
To support this, the project has developed ‘Communicating for end of life – a toolkit’. The toolkit is relevant for both disability and mainstream health providers and links disability support providers, families of people living with disability, carers, health services and health care providers. It contains a set of practical tools to build capacity and capability around decision making, accountability, communication, documentation and coordination.
Tools such as Stop and Watch, the Hospital Passport and the Medical Appointment Form are practical ways of sharing information and coordination between providers when a person living with intellectual disability enters hospital or visits a GP or shows signs of being unwell.
Working together can make such a difference to someone’s care with the shared goal of providing the best possible care at the right time and in the right place.
The HD4PWD project team is working with the Program of Experience in the Palliative Approach (PEPA) to deliver workshops about the principles of palliative care and the practical resources the toolkit provides to support a holistic approach to palliative care education. The workshops are tailored to be relevant for both healthcare and disability support providers, including registered nurses, disability support workers, positive behaviour support managers, support coordinators, quality and clinical leads in community care, team leaders, disability coordinators, Department of Health planning, policy and project consultants and more. The project is funded by the Department of Social Services Information Linkages and Capacity Building (ILC) program.
Find out more:
To download the free toolkit, head to https://livetasmania.org/hd4pwd.
For more information contact: healthydying@livetasmania.org or call the team on 03 6227 5400
Darren Mathewson
Chief Executive Officer
Li-Ve Tasmania