Preparing for illness or death of a parent
Peace of Mind Planning for older parents of people with disability
This page has information to help people to be prepared for when a parent or carer becomes ill or dies.
Organisations that can help with resources and support:
Legal
DDWA
Future Living Trust
State Administrative Trubunal
MP Commercial Lawyers
Planning
DDWA
Future Living Trust
Office of the Public Trustee
Office of the Public Advocate
Microboards Australia
Valued Lives
Inclusion Solutions
Citizens Advocacy
Circles of Support
Financial
Future Living Trust
State Administrative Trubunal
Advocare
Lifestyle
Future Living Trust
Microboards Australia
Guardianship
Office of the Public Advocate
Administration
Office of the Public Trustee
Developmental Disability WA
- Legal
- Planning
Leticia Grant
Teresa Pracilio
Mary Butterworth (CEO
Phone: (08) 9420 7203
Email: ddwa@ddwa.org.au
Website: https://ddwa.org.au/
Workshops
- What if I die tomorrow
- Guardianship & Administration
These workshops are designed for parents, carers, families and guardians of people with intellectual and other developmental disabilities. Topics covered include:
- Wills and estate planning
- Special disability trusts
- Keeping records: personal, health, medical, financial records, property and service providers' details
- Guardianship and administration
- Relationships and support networks
- Emergency care plans and more!
Workshop attendees are provided with the following planning resources
- A Caregiver’s Guide to Future Planning - An information checklist for people with disability
- A Caregiver’s Guide to Future Planning - An information checklist for Parents and Carers
Check the website for workshop dates: https://ddwa.org.au/workshops/
DDWA Resources
Making Decisions After Turning 18 - a guide to Guardianship and Administration
This resource provides information to assist families and carers with young people with intellectual disabilities to prepare them for decision-making when their child turns 18. Topics include:
- the circumstances when a Power of Attorney or Administrator may be required;
- the circumstances when an Enduring Power of Guardianship or Guardian may be required; and
- when to ask the State Administrative Tribunal (‘SAT’) for an order to appoint a person to be a decision-maker for a person with an intellectual disability and when the SAT can review appointments.
Information and Referral
You can call DDWA for free individual guidance, information and referral on these topics and many more.
Future Living Trust
- Legal
- Planning
- Financial
- Lifestyle support and safeguarding
Future Living Trust is a WA based charity that helps you to plan for the future. They offer resources, online training and one to one planning.
Future Living Trust Resources and Services
- Disability Wills and Planning
- Future Planning & Education
- Personal Safeguarding Services - who will look out for my child when I am no longer around?
- Financial and Property Trusts
- Safe and Secure – Future Living - online education program for parents where you learn how to build a roadmap for your child’s long-term future from the comfort of your own home, anywhere in Australia.
- Trustees for Financial (protective and specialist disability trusts) and Property Trusts
- Provide referrals to Lawyers and Financial Planners with disability specialisation
- Personal Safeguarding Service- volunteers visitor
Office of the Public Advocate
- Planning
- Guardianship
Phone: (08) 9278 7300
Telephone Advisory Service: 1300 858 455
Email: opa@justice.wa.gov.au
Website: https://www.wa.gov.au/organisation/department-of-justice/office-of-the-public-advocate
The Office of the Public Advocate (OPA) provides access to advocacy, guardianship and administration services which protect and promote the financial interests and welfare of adults with a decision-making disability.
Resources
Private Guardian’s Guide: this guide provides information for people who are considering taking on the role of guardian. There is also information for people who have been appointed as a guardian by the Western Australian State Administrative Tribunal.
Download the Private Guardian's Guide here: https://www.wa.gov.au/system/files/2025-08/private-guardians-guide.pdf?
Easy Read Factsheets: OPA have produced a library of easy to understand documents to help people understand what they do. They can be found on this page:
Useful FAQs and links to other websites and resources:
Planning Ahead – Parents of children with decision-making disability.
Office of the Public Trustee
- Planning
- Administration
The Public Trustee manages the financial affairs of people who have been deemed legally incapable of doing so themselves. It offers independent, professional trustee and asset management services to the Western Australian community. These include Will and Enduring Power of Attorney drafting, deceased estate administration, and personal trustee and administration services.
Resources
Private Administrators’ Guide: https://www.wa.gov.au/media/8067/download?inline
Private Guardian's Guide: https://www.wa.gov.au/media/28518/download?
Easy Read Factsheets: The Public Trustee have produced a library of easy to understand documents to help people understand what they do. They can be found on this page:
State Administrative Tribunal
- Legal
- Financial
The State Administrative Tribunal (SAT) is an independent body that reviews a wide range of government decisions and determines disputes. SAT's jurisdiction extends to guardianship and administration.
Services
- The SAT can help resolve a dispute, and review and make a broad range of decisions
- Appoint public and private guardians
Phone: 1300 306 017
Email: Link to the SAT Contact Form
Website: State Administrative Tribunal (SAT)
Department of Health, Disability and Ageing
- Health
Contact your Local Doctor (GP) for more information.
Comprehensive Health Assessment Program (CHAP)
Microboards Australia
- Health
- Planning
- Lifestyle support and safeguarding
Jaquie Mills
Ewa Neal
Phone: Ph 0428 258 835
Email: admin@microboards.org.au
Website: https://microboards.org.au/
‘A board just for me’ - Legally structured network of family, friends and supporters providing whole of life oversight.
Resources and Services
- Health planning, including what happens in a health emergency as well as longer term holistic health planning for the person with disability, and training for informal network members in health advocacy. We support people to identify signs of health and how to notice when a person is unwell and also how to design a decision making process so people access health services in a timely way.
- MAPS, PATH and Essential Lifestyle Planning.
- Planning for the person’s choices and decisions to be supported in the future.
- Funeral Preparation and Planning - on the ground planning for what happens for the person when key care givers pass away:
- how will they be told their parent has passed? (And what preparation have they had before hand - how have conversations about death been held, do they know what a funeral is etc).
- Who needs to be contacted to support them?
- How will the person with disability be included in the funeral?
- How will they be supported through grief ongoing?
Valued Lives
- Planning
Kerry Stopher
Peter Barney (CEO)
Phone: 9274 7760
Email: info@valuedlives.org.au
Website: https://valuedlives.org.au
Workshops
- Shaping Tomorrow: A Personal Futures Journey. Creating a Personal Futures Plan can be a way to make sure your loved one gets the support they need to live a fulfilling life, both now and in the years to come
Inclusion Solutions
- Planning
Leanne Pearman
Phone: (08) 9201 8900
Email: info@inclusionsolutions.org.au
Website: https://inclusionsolutions.org.au/
Accredited PATH, MAPS and Circle of Friends Facilitator.
Advocare
- Financial
Phone: 1800 655 566
Email: rights@advocare.org.au
Website: https://advocare.org.au
Advocare is a leader in addressing therights of older people and elder abuse. We help people find the information they need to make informed decisions, to express their preferences, and to stay connected to their community.
We match people with disability with volunteers who assist them by providing ongoing friendship, support and empowerment.
Resources
- Your Money, Your Life, Your Choice -Caring for your assets as you age
https://advocare.org.au/wp-content/uploads/2024/11/Advocare_MyMoneyBooklet_Apr2025_V1.pdf
Steve Pynt is a Lawyer advising and presenting workshops for parents at Future Living Trust and Developmental Disability WA. He has expertise in Wills and Estate Planning including Testamentary Trusts, Enduring Powers of Attorney and Guardianship, and Advance Health Directives.
Citizen Advocacy
- Legal
- Planning
Eloise May
Phone: 08 9445 9991
Email: admin@capw.org.au
Website: https://citizenadvocacy.org.au/do-you-need-help/
Services and support
Citizen Advocacy is a not-for-profit, community-based organisation funded to provide volunteer disability advocacy support tailored to the unique needs, goals, and interests of the individual.
https://citizenadvocacy.org.au/wp-content/uploads/2024/06/2024-06-Friendship-and-Empowerment.pdf
Resources and Support
The National Resource Centre for Circles of Support and Microboards (NRCCOSAM) website was created with input from people with a disability, families and Circles of Support and Microboards (COSAM) organisations across Australia.
There are tools to help you locate and connect with a COSAM organisation near you, read interesting stories about how circles and microboards work, download useful information and watch informative videos about COSAMs. The content and tools will help to decide if you would like to establish your own circle or microboard.
DDWA Resources
Our key focus area resources are designed for families supporting a person with disability across a range of topics including advocacy, behaviour, communication, education, employment, health, legal, recreation, relationships, safety, supports, transition and your home.
