(New Zealand) Parents of adult autistic children worry about the future after they're gone
Money questions answered: Every week, we pick a question sent in by a reader and offer a response from personal finance writer Gill South. You can submit questions below.
We parents will always worry about our grown-up kids – we hope they’ll lead interesting, safe and happy lives. For most of us, our adult kids are in their own homes or flats here or overseas, calling on us from time to time for support them, but we generally have our lives back.
This column is for those Kiwi parents who will never get their lives wholly back once their kids reach adulthood because their children are disabled in some way and can’t live independently.
And what keeps these parents up at night is what will happen to their beloved children after they die or they become incapable of caring for them anymore. If they are lucky, their child will have siblings or extended family around to take over the reins, but parents will have to plan for a number of scenarios ahead. . . .
We had a question around this issue recently from Kerry* and Tom* about their autistic son Michael* and his younger brother Trevor*:
"We have two sons. The eldest is autistic and while he functions well with us, we are concerned about what happens when we are gone. His younger brother is very bright and very close to his brother and will play a role here.
We have thought of setting up a trust to ensure our autistic son is protected. What do you think is the best approach? We want to ensure that he isn't left in the lurch when we eventually die. Also, how do we factor in the possibility that we may need care of our own one day?"
Through friends who have autistic sons and Autism New Zealand, all roads for this question lead to Nan Jensen, head of Better Lives Legal, specialists in disability law.
Jansen and two of her adult children are on the autism spectrum, so she can speak to Kerry and Tom’s situation with total empathy and understanding.
There is no magic bullet or easy solution for parents who ask this question, she says. New Zealand is a country where government-funded disability supports are limited and benefits are low, so parents of these children have a lot to think about, Jansen tells me.
Parents of disabled children often worry about what happens when they die.
One of the appeals of a trust for parents is the way it can protect their child. Many disabled people are easily coerced so one of the main goals of a trust is to prevent the person from being pressured into giving away their assets or losing them in a relationship property division, says Jansen.
In a trust, the trustees own the assets for the benefit of the beneficiaries. If Kerry and Tom leave their assets to a family trust, then the assets are owned by the trustees for the benefit of the trust beneficiaries, says the lawyer. That way if Michael’s home is owned by the trust, there is no opportunity for someone to coerce Michael into signing a sale and purchase agreement because he doesn’t own the home so can’t sell it. . . .
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