What will happen to my son or daughter when I die?

By Linda Hughes

For families with a son or daughter with disability, this is perhaps our biggest worry.  Myself included. It is what kept me awake at 2 am, worrying about my son Jacob.

How will Jacob be able to live a good life? What can I do to ensure he is happy, well and safe? What is needed for him to have a sense of belonging, to contribute, be valued and loved?  Jacob needs help in many aspects of his life, support to make decisions and to enact his decisions. How will his life continue without me?

I have thought about this long and hard! What actions can I take now to plan for the future?

It would have been easy to put my head in the sand. I am busy with work, too tired. And I don’t even know where to start.

A couple of good friends rallied me. When they heard my fears they said what can we do? Where can we begin?

Bringing together a small circle of support around Jacob was our starting point. But even that was hard. In the end I asked one good friend to invite people to join Jacob’s circle.

Jacob’s circle of support are family, friends and people who had worked with Jacob, who developed a good connection and wanted to stay in touch.

Getting Jacob’s living arrangement sorted was the next step. He was 26 and it was clear he didn’t want to live with his ol’ mother forever. Jacob, now 31, lives in his own place in an individualised living arrangement. This is where his home, lifestyle and support are designed and tailored exclusively for Jacob. You can check out Jac’s Place video here

We are now in the process of me “handing over the baton”. With Jacob’s circle of support – a group of committed friends and family - I am sharing some of my responsibilities. But importantly, we are also sharing the joys, the fun and excitement as we help Jacob to live his very best life.

Planning for the future takes time, but more importantly it takes action. All the worry in the world will not keep our family members safe. If you want to know more about what you can do now,   Resourcing Inclusive Communities runs workshops on Future Planning and Individualised Living where you will hear other people’s stories, and learn strategies and tools.

Check our Events page to find out when the next workshop is running, or you can fill our expression of interest form and we will contact you when we are running a workshop in your area.