Second Generation - Developing a Life Plan

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October 31, 2019

By Lisa Pirihi – Accountabilities Coordinator for Parent to Parent

Developing a life plan, or future planning, for a child or family member with a disability helps to put things into place to ensure that the person has the best possible future, even as parents or caregivers age and are unable to care for them anymore. Planning for the future can cover many different topics, including living arrangements, friends and support networks and financial and legal issues.

Why do it?

Although it can be a difficult topic to consider and talk about (especially when day to day life is busy enough!), it is a stage of life that is best planned for, just as any other stage or transition is planned for. Talking about the issues involved and planning ahead means that when the time comes and changes do occur, these will be less stressful and cause less anxiety for all involved.

Future planning can involve many different people. Although it is centered around the family member with the disability and can include their input and decision making as appropriate, it can also include involvement from siblings, extended family members, friends, support workers and health professionals. Some of the benefits of involving others in future planning include:

Helping to support the parents or main caregivers, reducing any feelings of anxiety they may be feeling about the future;
Hearing fresh ideas from others, along with having a wider group to discuss any issues or problems with; and
Involving more people in the family member’s life, which helps to ensure that they will be safer and less vulnerable.

What could it cover?

When developing a life plan, it is useful to have a clear purpose or vision as to why you are creating it, along with clear communication and agreement between those involved in creating the plan. Any special communication needs of the family member with the disability will need to be considered and provided for. Some of the topics that could be discussed and included in the plan are:

Living arrangements – if the family member still lives at home, consider where they will live in the future and when this transition to the new home will take place. If they have already left home, consider whether their current living situation is suitable for the long term or whether changes will be needed as they grow older.
Friends and support networks – think about whether the family member might need help in building and maintaining friendships or getting involved in community groups or activities. Using the “Circle of Support” tool could be useful here.
Financial and legal issues – determine how the family member will be financially provided for, and also consider legal issues such as Wills/Enduring Power of Attorneys/Guardianship/the PPPA Act etc.
Ongoing health needs or professional support needed – consider what these might be and include relevant information/details of professionals in the plan.
Safeguards – think about what safeguards could be put in place and who could be involved in “keeping an eye on things” to ensure the family member is safe.

Retirement and end of life planning/funeral arrangements – discuss how the needs of the family member may change again during their retirement years.

This is of course not a complete list but just a starting point for the kinds of things that could be considered. The most important thing is just to make a start on thinking or talking about these issues – getting older is a stage of life (there is no denying it!), and making a plan for it will help to ensure the best possible future for our loved ones.

For more information on future planning please see the following article on the Care Matters website which discusses the topic in further detail, and includes links to many other useful websites and resources: