Your will and your special needs child

[carrieq]

My oldest son is 5 and has autism.  We are getting ready to finalize our will and testament, power of attorney, and living will before we go on an adults only trip for our 10 year anniversary.  The only thing holding us up is deciding what age our children need to be before their share of the trust is turned over to them.  My brother is named their guardian if something were to happen to us so that's covered.  The future is an unknown, but based on conversations with his OT (who also has a child with autism that's a few years older than mine), she feels he will be very close to 'typical' as the years go on.  I don't want to any of my children (I have another son that is 2 and we plan to adopt in the future as well) to inherit their trust at 18.  I would like to wait until at least the age of 22/graduating college/holding a job, etc but should I wait longer based on the possible lower maturity level of my SN son?  Should I wait til 25?  auntie what are your thoughts/plans regarding this issue?

[auntie]

Our attorney suggested a hope for the best, prepare for the worst strategy.

I have an only, so I don't have to consider the needs to provide support through college for other children.

IMHO, your OT seems overly optimistic in terms of estate planning. At five it's difficult to predict how independent your DS will be. Only about 15% of those with an Aspergers dx (the most high functioning of those on spectrum with no ID or adaptive/language delays) are able to maintain full time employment. There's also the possibility that your DS could develop a comorbid condition that will impact his ability to be an independent adult- at 5 he's too young for you to know how he'll develop as a student or whether he'll be one of those on spectrum who develops a crippling mood disorder in his teens or schizophrenia as a young adult.

I would strong urge you to shelter his funds in a special needs trust so that it doesn't interfere with governmental programs like SSI or subsidized housing should he be unable to support himself at 18. My son is a college junior and I haven't revoked his Trust. I plan to if he demonstrates the ability to be independent before I die. If we were to die with the Trust in force, he could still petition it via his Trustee to access the funds if he wanted to buy house or pay for grad school. I have a separate Trustee for money and Guardian in my Will.


Even if your DS does get to a point where he's truly independent, you can expect a child with ASD to have the social and emotional maturity of someone half his age. An attorney can discuss the best strategy for fairness in distribution. You want funds available for college at 18, but not sports cars. You want the distribution to be "equal" so one option is a set distribution at 18 and 25 (or even later) for each. And then a final cut when the youngest hits the last milestone.

My parents original Will had an 18(college) and 30 (house) distribution with a final split of the excess when DS hit 40 for the grandchildren. They've since rewritten. I have not shared my parent's current Will with DS and my nieces. But I have explained the thoughts behind providing a safety net for DS via a SN Trust in the event of my death. I truly hope I can one day just leave him everything, but for now- safety first.