Estate planning before your own death can be confronting but for parents who will one day leave behind children with disabilities, there are additional complexities. Advocates and legal experts say it’s critical plans are put in place early so the person with disability can continue living safe and happy lives long after their parents are gone.
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00:00It's baking time at Eli Dickinson's house in Perth.
00:08The 34 year old lives with cognitive disability and communicates through assistive technology.
00:15It is very important to me to choose how I live my life.
00:18Mum Jackie Mills says Eli's autonomy now and into the future is a top priority.
00:24Eli's been living in his own home for about 15 years. It's really important that Eli's standard
00:32of living and that his quality of life are maintained.
00:37To make sure that happens Jackie has set up what's known as a micro board. It's a group
00:42of people legally bound to Eli and chosen by him to help make decisions about his future.
00:49That becomes an especially important role when parents or other key caregivers are no longer
00:54around.
00:55While micro boards are one solution, parents are also encouraged to set up a will or a
00:59trust to make long term provisions for their child's needs. Whatever the approach, experts
01:05say it's important, plans are put in place well before they're needed.
01:10If you leave it to when there's a crisis, that is not going to make things better. You need
01:16to have those conversations regularly, early, with all the right people.
01:22If you don't think about these sorts of issues, then you're really leaving all of that to
01:27whoever comes after you to make the decisions about. And that may be fine, but it might not
01:34be fine.
01:35When I'm no longer here, I want to know that Eli is safe. It's also really important to me
01:40that his agency is upheld across his life.
01:43Hard conversations, but important to have.
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