A common concern unites many families who have a member with an intellectual or cognitive disability. That is:

“How can we make sure our son or daughter, brother or sister, has a good life when we can no longer provide the love and support we give them now?”

The Premier’s Disability Advisory Council, with support from the Disability Bureau, held workshops in Ulverstone, Launceston and Hobart during May 2008 at which family members were asked to consider what might need to be done to plan for the possibility of not being here tomorrow.

The workshop presenters, both parents of adults with disability work for a family support agency in Brisbane called Mamre Association. For the past six years Sharon Bourke and Jeremy Ward have been working with families across Queensland through a program called ‘Pave the Way’ (see www.pavetheway.org.au).

The workshops were based on some fundamental beliefs that underpin Mamre’s work with families:

• future planning begins with developing a clear vision for the best possible life we can imagine
• People keep other people safe – inviting others to share our vision and our planning is one way to help secure our hopes for the future
• Imagine better - future planning begins with developing a clear vision for the best possible life we can imagine
• There is no recipe – every family will create their own vision and plan, at their own pace
• The future starts now – it is never too early or too late to plan.

Planning was approached from the position that parents want the best possible lives for all their children. It is because of the greater vulnerability of sons and daughters with disability that planning and action taken now can increase the likelihood of a safe and happy future.

Parents attending the workshops were reminded of the gifts their sons and daughters bring to their lives and the contributions they have to make to the wider community. Parents were encouraged to welcome other people into the lives of their family member. Although this may seem a hard thing to do – a step at a time approach was recommended.

First of all it was suggested that parents should start talking about their hopes and fears to other family members and then as they felt able to talk to other important people such as close friends and allies. Families were encouraged to dream and to develop a vision and plan with these chosen others.

Sharon Bourke spoke about the support circles and the role they can play in helping develop a plan for the future. Jeremy Ward spoke about the legal and financial aspects of planning including wills, trusts and trustees, guardianship and administration and special disability trusts.

Thanks to a number of organisations, schools and colleges that helped promote the workshops 161 people, in total, attended over the three days. The feedback from workshop participants was overwhelmingly positive.

“A tough subject covered very comfortably”.

“I found the idea of a support circle helpful and challenging”.

“It will help move me to get my head out of the sand and start planning”

“Lots of these days appear to be ‘talk fests’ without any outcomes. Today was not one of those”.

“It touched many raw nerves for me as I am passionate about my little man’s future”

“It has made me really think about the future and now I’m motivated to do something about it - plus the know-how. Thank you very much”.

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