Autistic Musings / NaBloPoMo / Random Life As I Know It

Where There’s a Will

In last weeks discussion in one of my legal studies classes my professor asked the question “So what would you tell the mother of a special needs child if she was in the office to make a will?” This of course piqued my interest.  I am a mother. I have special needs children. I need to get my will finalized.  Huh. I really needed to pay attention to this conversation.

(Not that I wasn’t or was surfing Facebook or doing any non related course work during class. That was the person sitting in front of me, besides me, and probably behind me, too. This class cost something like $2500. That’s some pretty expensive social media surfing).

Then the professor blew my bubble, big time. “Disinherit them,” he said.

His reasoning was this: an adult with special needs will likely need eligible “services” if you will; like county support, housing, medicaid, social security, job support, etc.  He said if you left them a lot of money, they could risk losing all of those services because they are too rich. Sometimes, he said, it’s better to just not leave them anything, so they don’t lose the help that they need.

My heart of course sank.  I am a mother. I have special needs children. They receive services. I want to make sure that once I am gone, they are well provided for. I don’t want them to be homeless or neglected. I want to make sure they are taken care of. I want to treat all of my children fairly, and I do the best I can even now to do that. Why on earth would I disinherit them? That’s what you do to kids who join the circus or get a tattoo or marry the wrong person or something  like that (not that I would disinherit my kids for those reasons). You don’t disinherit three kids whose only “downfall” (and it’s not even that to me) is having a developmental disability. Life is already unfair enough as it is for them. More than anyone, I know this all too well. It is not in my blood, or in my heart to be cruel or unfair to my own children. I’m the one who’s supposed to make sure that doesn’t happen…right?

I’m sure he had no idea that, when talking about the “difficult things we sometimes need to tell our clients,” that I, a student in his class, was one of “those” people who would be hearing that “difficult thing.” But still. I tried to distract myself enough to not burst into tears right then and there in the classroom. I stand out enough in that room of 20 somethings. I don’t need to draw more attention to myself.

The honest truth is that I think about this stuff all the time: what will happen to my kids when I’m gone. (I hope that’s many, many years from now). Ask any parent of a child with special needs, and they will tell you the exact same thing.  We all worry about what is going to happen to our children when we leave this earthly world. As for me, I have three children I need to worry about.

My next thought in class was this:  Dang it. One more thing for me to worry about. First it was getting a diagnosis for my boys. Then it was navigating the world of school IEPS. Then I had to get guardianship of them. Then (now) it is post high school adulthood. Now I have to worry about how to not disinherit them? Great.

One day I am worrying about how to financially take care of my children, the next I am wondering how to not do that once I’m gone? Oh, the irony.

After class I went home to do my own research.  I could’ve sworn that I read or heard somewhere about how to financially take care of your special needs children while still allowing them to receive services once you have passed away and even while you as their parent or family member are alive.  I was right.  It turns out there is a way to do that, it’s called establishing what is called a “supplemental trust.” I’m fairly certain that I heard this from an actual attorney. You do have to draft the will very carefully and very specifically to do that, but yes, you can still leave your special needs child an inheritance. You need to find an attorney (obviously not my professor) who is familiar with special needs laws.

You now know the reason why I’ve chosen to work in the field of law.

There is never going to be one person who is an expert on every single of the millions of  aspects of autism…from diagnosis through the course of their lifetime. And sometimes the people who are supposed to be the experts don’t even have all the answers. The only person who might ever come close, is a special needs parent. I’ve seen some special needs parents, who have managed to find some very little known but beneficial information for their children, after being told that there were no other options.

As a special needs mom, if you tell me it can’t be done, I will set out to prove you wrong. And chances are, I will.

Where there’s a will, there’s a way.

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