The heavy costs of raising a special needs child

From tests to therapy, parents raising a child with special needs require additional resources and careful financial planning. How can they tap on available support?
In this week’s Money Talks, Frederic Maury, parent of a special needs child, shares his experiences and advice on how parents can effectively plan for their children’s future.  
Here’s an excerpt from the conversation: 
Andrea Heng: 
What happens when (Ayano’s) caregivers, you and your wife Yuko, die? 
Frederic Maury:
This is what MINDS, together with ADAP (Assisted Deputyship Application Programme) and SNTC (Special Needs Trust Company), help us to tackle because that will happen. That’s a fact of life.
So we have set up a trust with SNTC. So every month, every year, we’re setting aside some money for Ayano. The day Yuko and I pass on … the money gets disbursed monthly (or) quarterly. Essentially according to the instructions we have given and using the funds that we have set aside for her. 
Andrea:
Would that include things like inflation?
Frederic: 
And all of this is done in accordance with the instructions that we have given.
Andrea:
I understand you also have a younger daughter, correct? And she’s not special needs. Where does she fit into your legacy plan?
Frederic: 
Yes, her younger sister is called Sawako. Obviously, she’s fully aware of her sister’s condition. And the way we’ve structured … the legal terms of the deputyship is that first Yuko and I will be handling Ayano’s finances, and when Yuko and I pass on … the disbursement will (follow) our instructions.
And Sawako is entitled if she wants to take our place as legal guardian, but she’s not obliged to do so. It’s optional, and that’s a personal choice.
We did not want her to have that burden because we thought, we are the parents. We’re the caregivers. It is our role to plan for Ayano’s (future). Whether Sawako wants to help in the future, that’s her decision, but it should not be imposed by us on her when she’s so young. She’s (also) entitled to have her own future. 
Andrea:
I think that’s a fair assessment … and it must have put you in quite a tricky position as parents as well to two very different children. Looking further ahead when you and your wife are no longer around, what’s the most important thing you’ve included in this legacy plan to ensure that Ayano is taken care of? 
Frederic:
The most crucial was, I would say, not one thing, but three things. We want her to have a roof, we want her to eat every day, and we want her to get medical treatment if she needs. 
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