Palliative Care for people living with disability

Living with a serious illness can be very hard.

It can feel even harder when you also have a disability.

Our goal is to make sure people with disability get the same good and caring and palliative care as everyone else.

We want your care to support your:

  • Dignity
  • Independence
  • Choice

We work with:

  • You
  • Your family
  • Your carers
  • Your support networks
  • NDIS providers (if you have them)

We work together to make sure your care matches what matters most to you.

Our services are:

  • Accessible
  • Inclusive
  • Respectful of your communication, mobility and support needs

We help you live as well as possible by:

  • Managing your symptoms and helping you feel more comfortable
  • Giving you clear information so you can make your own decisions
  • Working with your disability supports to help you stay independent and keep your routines
  • Supporting your emotional, spiritual and cultural needs
  • Including your family, carers and support workers when we plan your care
  • Planning ahead so that your wishes are known and respected

To contact the Community Palliative Care team please phone 1300 068 458.

Resources for patients

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If you are living with a disability and a serious illness, these resources can help you learn what to expect and where to get help.

  • ISLHD Palliative Care information leaflet

Palliative care easy read resources:

 

Education and learning resources for support providers and carers

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These short online programs help Disability Support Workers feel confident when supporting someone with serious illness.

They include real-life stories, examples, and tips to help you:

  • Communicate well
  • Notice changes
  • Provide caring and respectful support

PalliBytes - Disability Support Worker Online Learning Program

Three short modules (total 1.5 hours) designed specifically for Disability Support Workers.

Learn how to support people with serious illness and develop confidence in palliative and end-of-life care.

Modules include:

  • Understanding palliative care and your role
  • Communicating with people, families, and care teams
  • Supporting quality of life and comfort

Access the course here: PalliBytes Disability Support Worker Program

Talking End of Life (TEL) Modules and Videos

Free learning for people supporting someone with intellectual disability.

Modules include:

  • 5 modules about your role as a disability support worker
  • 3 modules on key issues around dying and death
  • 4 modules about helping people plan for their own end of life

Access the TEL modules and videos: TEL: Talking End of Life - CareSearch

Some key videos to help you support other people in the same home:

For Deeper learning:

For those wanting to explore palliative care in greater depth, the Palliative Care Curriculum for Undergraduates (PCC4U) offers free, evidence-based online modules that cover key principles of palliative care, communication, and supporting people with diverse needs.

These modules are suitable for anyone wanting a broader understanding of palliative and end-of-life care.

Access PCC4U here: https://pcc4u.org.au/learning/modules-landing/ 

Consider using the PEPA learning guide for disability support workers for further guidance.

Practical care resources for support workers and carers

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Looking after someone who has both a disability and a life-limiting illness can feel complicated at times. These resources help support workers and carers provide safe and gentle care.

Self-Care

Practical Care Videos and Tips

Symptom Management

Help with pain

Help with anxiety

Common symptoms at end of life

Help with restlessness

Help with rattly breathing

Help with shortness of breath

Help with feeling sick or vomiting

Help with troubling visions, sounds and thoughts

Resources for carers, families and loved ones

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As a carer and/or family member, you may need assistance to help you provide care in a way that also looks after your own health, wellbeing, and personal goals. This assistance can include:

  • provision of information, education, and resources to support you in your caregiver role
  • the availability of timely in-home support, which includes services and equipment
  • access to and availability of planned and emergency respite care services
  • identifying your emotional and physical health needs early and throughout the persons’ illness, and in bereavement
  • addressing your needs for greater financial support, including access to the carer's allowance
  • providing information and support to you if you are responsible for making decisions on behalf of the person, such as being their power of attorney, enduring guardian, or medical treatment decision maker
  • guidance on who to go to if you are concerned about the person’s care

Busting palliative care myths: 

Let's talk about death and dying:

Advance Care Planning

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Advance care planning helps people think about and share what is important to them if they become very unwell and cannot speak for themselves. People with disability have the same right to plan for their future health care as anyone else. We support people to be part of these talks in ways that work for them. We use clear language, give extra time, and use communication supports if needed. If someone cannot make some choices on their own, we work with family, carers, and substitute decision-makers to write down the person’s values and wishes, so care matches what matters to them.

Grief and Bereavement

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Griefline provides free, confidential support to people experiencing grief, loss, or loneliness. It offers telephone counselling, 24/7 online forums, grief resources/education and information and can provide training to staff on grief/loss.

Megan Devine ‘It’s OK that you’re not OK’ (2017): www.refugeingrief.com   

Anticipatory grief information:  https://www.mariecurie.org.uk/information/end-of-life/anticipatory-grief

Responding to grief and bereavement: 

Supporting others in the home with grief: