Estate Planning and Autism
NOTE: We're often approached by sites to link to their content. And usually we say, "No thanks," as the content isn't in keeping with our mission and we're not here to make other people money. However, this request looked like it might be valuable to our readers, so we're sharing, despite its commercial provenance. Ageing and finances are a topic of angst for most everyone - but with a kiddo on the spectrum? Oy. We're often far poorer than we would have been had we not had to pay the autism penalty, and many of us are just plain broke. But there are families with money (God bless you) and managing it for our kids is important.
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As people grow older, especially parents, they begin to think about the future, and how their children will be provided for after they’re gone. For parents of children without developmental disabilities, this is easier, as those children can typically provide for themselves.
However, when you have a child with Autism Spectrum Disorder, the issue becomes much knottier. Not only do you have to financially provide for that child after you’re gone, you must ensure they’ll be well taken care of and that your death does not compromise the child in any way other than the obvious emotional impact losing you will have.
Below we will discuss what it means to plan your estate when you have a child with autism. We will address the basics – like what exactly estate planning is and the challenges it can bring – as well as what documents you need to have in order in your estate planning, which documents your child needs to be successful and in compliance with the law, and how you should proceed once you have put your affairs in place.
Planning for the future when you have a child with autism can be difficult, but if you take a forthright approach, you will pave the way toward a successful life for your child with autism, even if you are no longer around to take care of them.
What Is Estate Planning?
First things first: What exactly is estate planning? Although the term sounds kind of formidable or complicated, it merely means planning what will happen with your assets once you are gone. An estate is your total net worth according to the state and federal government. It includes bank accounts, homes, cars and any other assets you may have to your name. Typically, people work with estate planning experts to help them figure out how to distribute these assets without encountering legal difficulties, and while keeping as much money as possible in the family. Read more here.
I just finished this whole process (well almost). I live in Texas, with 2 sons on the spectrum (20 and 22 years old).
1. I hired an estate lawyer who specializes in Special Needs (her daughter has Downs Syndrome and is highly recommended by other parents in Houston). She charged $1,200 for my will. It had all the "usual stuff", but also including the language to leave my assets to be evenly distributed into two separate Special Needs Trusts (one each for my sons). If you leave it to the child (using their name), then it will mess up all of their government benefits, medicaid, etc. The beneficiaries are my son's Trusts, and the will has to be worded very specifically.
2. At the same time, I opened 2 Special Needs Trusts with Arc of Texas Master Pooled Trust. It cost $600 per trust to open (but they will not be funded until I die). They were very helpful in filling out the trust agreements. It was kind of complicated, but they were really helpful - answering my emails and phone calls. I wanted to make sure that when one son dies, his Trust money will move over to the other son. (Talk about being optimistic on the amount of money I'll leave them). I not only have my brother and sister as "Primary Representatives", but 4 of their children as alternates (one is only 14, but in 20 years I figure it will be these 4 cousins who will be in charge of watching the money).
3. The part I'm still working on are the "Letters of Intent" for both sons. This is a non-legal document, but it describes everything about them (past and present). It includes everything: daily routine, past medications and reactions, past doctors, present doctors, behavior modifications & therapies.... I haven't finished them, because I'm taking the template the lawyer gave me and putting it on the computer to fit my own needs. Then, I can update them as things change - and I'll mail them to my executors of my will, as well as the Arc of Texas Master Pooled Trust. The Arc suggested that I send them updated copies as things change over the coming years.
I wish I had taken out life insurance when I was a lot younger (I'm 54 and it is too expensive now). Some people fund the trusts with life insurance. Also, I've let it be known to relatives on what I have set up for the boys. Already an aunt is leaving 1/2 of her estate to them (I had to send her the very specific wording for the Trusts, so that her lawyer could put it in her will).
Posted by: Christina D. | April 04, 2017 at 10:32 PM
The timing of this post is impeccable. Spouse and I are in the middle of the planning process. I never realized that the SNT cannot be used to pay for food, shelter, 'basic life expenses'. Seems antiquated but that's another battle. Thanks AoA and to those who left comments.
Posted by: nocposts | April 04, 2017 at 07:17 PM
Our case manager was enthusiastic about ABLE accounts, saying they were tax-free and not counted toward assets for purposes of getting Medicaid. She said I could end it and take out the money penalty-free at any time. It turns out that the purpose if to let Medicaid get back everything it paid when the autistic person dies. They get to take it ALL out of the ABLE account, which in most cases would be all of it. I read that there's a new program in which Medicaid, in cooperating states, would pay the caregiver of an autistic person $1,000 a month. So at $12,000 a year just for that, how much would that be over the person's lifetime?
Special needs trusts don't let you specify what the money will be used for, and it can't be used to pay for food and other things mostly paid for by SS.
I think at this time the best thing to do is find someone to become trustee of your child's estate. Then it doesn't count against them for SS and Medicaid.
I'm sure our society will have to come up with better arrangements, the first generation since the autism/vaccine epidemics started in 1990 is just turning 27 this year, recently aged out of public school, and the full ramifications of the vaccine mania debacle are just starting to hit.
Posted by: ciaparker | April 04, 2017 at 05:02 PM
Assets, snort!
I am in my thirties and have not worked in over three years. Congress should forgive all mortgages of autism families. They helped cause the problem.
Posted by: F U Congress | April 04, 2017 at 06:49 AM