Off-topic: estate planning with extra-needs kids

[4KookieKids]

We need to update our will, and someone mentioned to us that it can be complicated when you have kids with extra needs because leaving equal amounts to each kid doesn’t actually turn out very fair if half the kids have to use a significant portion of their inheritance towards medical expenses and therapies and support services. In particular, we need to talk with someone about setting up a trust for the kids, I think, but are there any special things we need to be aware of when we have two kids with extra needs (one more easily labeled with ASD, so insurance actually covers much more than for the other child, who doesn’t currently have an easy label) and two more kids who seem typical but are still very young (so it’s possibly something would crop up down the road). All our kids are still under ten. 

I have a PhD in math, but legal issues go right over my head... lol.

[PeterPan]

I don't think our wills have anything divided among kids. There's an estate in trust, an executor, and legal guardians. The legal guardians are expected to follow a letter of intent and we made sure they agreed to that before we put them. Google letter of intent.

Fwiw, we have some very particular understandings with our guardians. We basically told them, because our ds is not given to change, that in the event of our demise we would expect them to move into our house to care for him and that our estate was to be spent on his care. So I guess you could consider that unfair, since basically dd would be left with no cash inheritance as all the estate that is fungeable would be spent in his care. In the event that dd was old enough to care for him (which she almost is), the guardians understanding is that he is to go to her and the estate pays for his care and maintenance. 

If dd outlives us, she would take everything and care for ds by providing him with a house or basement apartment. She's capable of independent living, and he's capable of independent living with assistance. He'll need someone nearby to problem solve and probably to cook for him. 

So no, it's not at all fair and there are no guarantees. I don't know how anyone could even expect it to be fair. Life isn't fair and autism isn't fair and having extensive support needs isn't fair. If there's something you think is really valuable to assign as inheritance (a piece of jewelry, etc.), fine. But really, even that can change in your mind. I would leave divisions of things to the executor to deal with using the principals you lay out and the common sense of the moment and put your effort in a good executor, good legal guardian, letter of intent, and possible trust.

You've probably already thought of this, but having assets in their name can affect eligibility for medicaid waivers, etc. I really don't know about it, just saying check. My ds qualifies with our board of developmental disabilities and is on the wait list for the waiver, meaning hopefully as he turns 18 he'll roll over onto it. 

[Lecka]

I’m not very familiar with it, but ABLE accounts are supposed to allow savings without impacting adult services.  

I think see if you can find out if any organizations in your area have information sessions.  

Or if you are hiring someone who does special needs I think that is good.

I emailed with someone briefly who does special needs planning, but didn’t follow up.  For the person I emailed with, if I had followed up I think they would have been very informed. 

[Crimson Wife]

We recently opened an ABLE account. Up to $100k can be in it before eligibility for assistance gets affected. I should figure out if there's a way to make an ABLE account a life insurance beneficiary instead of our DD directly. That would really only be an issue however if DH and I died simultaneously or within a short period of each other. Obviously that can happen but isn't super-likely at our ages.

There is a local attorney who is himself a father of a SN child and now he specializes in SN family law (estate planning, conservatorships, etc.) He puts on workshops periodically but I've never made it to one. I know we're going to need to bite the bullet at some point and deal with all of that. It hasn't been a priority because we've had more pressing issues and not a ton of assets to worry about. But circumstances could change depending on what happens with this start-up DH is now working for plus the potential for inheritances from parents/in-laws/childless aunts & uncles. We're not counting on the latter given that many of the previous generation lived to their 90's but you never know. 

[kbutton]

On 7/15/2018 at 3:57 PM, Crimson Wife said:

We recently opened an ABLE account. Up to $100k can be in it before eligibility for assistance gets affected.

 

Regarding the ABLE accounts, I think you basically have to qualify for a waiver before you can sign up for one. Maybe Crimson Wife can shed some light on that. If NOT, then one thing you should check into is what happens to that ABLE account if a child qualifies for services when younger but then doesn't end up on a Medicaid Waiver--is the account still usable.

Also, there are such things as special needs trusts. I believe Met Life had some podcasts via The Coffee Klatch Network that you might be able to find on itunes. The broadcasts are on the web, but the itunes archive is MUCH EASIER to search. http://thecoffeeklatch.com/

We have a regular trust, but we need to do a better job with it--update it and write a letter of intent. 

[Crimson Wife]

To sign up for an ABLE account, we did have to provide Fidelity a copy of the letter from Social Security stating that they had deemed her "disabled". Given that she has two separate genetic disorders (hearing loss and a neurological syndrome), there is a very high probability that she will continue to qualify for Social Security disability upon turning 18. Right now she doesn't receive a monthly benefit due to our income but after she turns 18 SSA will only take into consideration her own earnings (if any) and she would then get one. Apparently Medicare (not Medicaid) will cover her once she has received SSI for 24 months even if she's under 65. I haven't really looked to much into the details of that since we're still quite a ways off from transition-to-adulthood planning.

[PeterPan]

For someone like my ds, he's currently on the waiver waitlists in our state and currently qualified with our county board, but reality is that they're preparing to revamp the laws for our state, meaning everything could change. For kids in that ASD1/2 land where you're not sure about the long-run, having an account that is dependent on qualifying for the waiver might not make sense. Our behaviorist says kids will often qualify when younger and get dropped as their skills improve. We don't know where ds will fall, and right now he qualifies. But that could change when he's 12 or 15.

[Lecka]

My son just qualified in New York, and here if you qualify at 8 you are qualified through adulthood.  

But I don’t specifically know if the thing he’s qualified for is the thing that qualifies for ABLE accounts.  

It can’t just be Medicaid waivers because some states don’t do Medicaid waivers.  Kansas didn’t, they don’t accept the federal funds because they don’t want to meet some conditions (for state matching funds as far as I know).  

[kbutton]

Oh, the Met Life broadcasts brought this up, I think, but family members with good intentions can wreak havoc on things by leaving stuff to SN kids the "wrong" way. That is something to communicate to well-meaning family members that might be inclined and have the means to leave an inheritance.