Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Thursday, December 14, 2006

Trust Funds and Christmas Concerts

The kids and I just went to a Parents of Autism Info Group. Today the focus was on Supplemental Needs Trust Funds and Special Needs Trust Funds. The whole point of these trusts is to ensure that once you die, your special needs or disabled child will have access to money you want to leave to him without that money disqualifying him/her for things like Medical Assistance and SSI.

One of the interesting points that was brought up is that if you are on SSI as a disabled adult, the most in assets you may own (excluding your house) is $2000. This number has not been raised in over 20 years. The amount of assets you may have to stay on Medical Assistance is $3000. This amount has also not been raised in a huge amount of time. The question us parents asked is WHY? The answer was obvious, special needs adults don't vote (very rarely in any case), so their voice is not heard.

I have no idea how independent Sandis is going to be as an adult. My hope is he will function just as well as I do and have (perhaps better as I half-assed functioned until I was 25 and then I was forced to function). But, I really don't know what the future holds for him. I have no way of knowing if his autistic traits will disable him as an adult. I know they certainly pose problems as a child, but he is so smart! I hope that his intelligence will make up for the many social and sensory delays he has. I hope. But I don't KNOW.

I'm thinking of starting up a supplemental needs trust for Sandis. As the Grantor and trustee of this trust, if Sandis ends up completely independent and he does not need this trust, I can simply pull the funds and GIVE them to him, or just pull the funds and close the trust. I'm torn. All this estate planning, will planning, etc.....It is a lot to take in and consider. What will happen when the kids are gone? Who should I designate as a power of attorney if I can not handle my financial responsibilities and tasks myself due to illness or injury? Who should I ask to commit to be their full time guardian (and advocate for their unique needs) in the event of my death? AAACCCKKK!

I'm not gonna die man! I'm gonna live forever!!!! Nothing bad is ever going to happen! H
ow do I prepare for all this cripe on my salary? If Sandis isn't independent as an adult, how do I make sure he is cared for when I am gone?

Honestly, I don't think I'm ready for this question. I really don't. So, decision made, estate planning and trust fund planning gets set on the back burner for 90 days, at which point I will revisit and reevaluate what I perceive our needs to be.

I feel so much better!

Sandis has his Christmas Concert at school tomorrow. they couldn't have picked a more convenient time. Friday morning at 11:30. Hmmph. Thank god my work is understanding! As an added treat, Bob is attending! He often isn't in town until friday night, and I know Sandis is so excited! Sandis has been running around the house belting out "this land is your land, this land is my land, from california to the....." for WEEKS now. I'm not necessarily expecting that to stop (I think singing soothes him) but it will be nice to see him perform with the other kids.

I'm crossing my fingers he doesn't push one of the kids off the risers, which has been a problem recently at recitals. Ah well, I can't say he isn't fiesty!

5 comments:

BetterCell said...

I suggest that you put all your concerns regarding a Special Needs Trust and Power of Attorney on a piece of paper and find a "Good" Attorney that can draw up the necessary paperwork to protect Sandis and your daughter as well of course answer your questions and concerns.

In Search Of Balance said...

Feisty is the best. Good for him.

Best wishes to all of you as you make those difficult decisions.

Scott said...

Yeah, those are really hard things to "mentally wrestle" with.

I do applaud your decision to wait on it though! To decide that you are not quite ready or able to decide is a decision! I suppose just as long as it doesn't stay on the back burner forever. Still, the relief of simply making that decision is tangible.

I think the concert sounds like a lot of fun! Can't wait to hear how it goes.

Chrissie in Belgium said...

OMG Sarah, I thought I was a neurotic planner - you too! Good idea, this and definitely be put on the side burner for 90 days! Nzvzertheless, I do think you have a valid point in dealing with the issue, but LATER. One never knows what life has in store for us.

Chrissie in Belgium said...

OMG, look at my spelling....

and=can
nzvzertheless=nevertheless

z seems to be next to the e on the keyboard....