Okay, so now we come to the elephant in the room. What happens when I am no longer here? This has been one of my top ten thoughts since the day Kate was born. It's a constant, somewhat obsessive concern. Talk to any parent of a special needs child/adult and they will tell you that it's always lurking in the background. Some of us are proactive and put plans in place and others keep it buried thinking they'll have plenty of time to deal with those issues later.
I am the proactive sort. There are plans in place for Kate should/when I pass. Not long after she was born I had an attorney draw up a trust/will for me. It clearly outlines my asset allocations and protects them for my children, especially Kate. In my state , there are strict rules regarding Kate's assets and they are tied to the level of state services she can receive.
You don't want a portion of your estate left to your child with no protections in place. The state will take them to pay for services if you child has assets over poverty level. That's when a trust is helpful. It keeps your assets out of probate and away from the state. Your appointed executor, in this case my brother, doles out the money for Kate.
My sons and I have had many discussions about what my wishes are when the time comes. They really don't like to talk about it but I assure them it is completely necessary!
If you don't take care of this, the courts will. And, it might not end up being what is truly best for your child. Our plan is very clear about where Kate will live, with whom she will live and who will help with daily direct care. We have taken into account all that Kate likes, all she doesn't like and allowing for as much freedom of choice as is safely possible. The boys know what to do, they love their sister and want to take care of her. They will make all the decisions and the executor will assist with the funding.
My advice is to not put this off. Discuss all the angles with the important people in your life. Identify what responsibilities people are wanting or willing to take on concerning your child when you are no longer around. Get comfortable with this topic. Make estate planning a priority. You won't regret doing this and will appreciate the peace of mind it brings you. Find an estate attorney who specializes in special needs planning and get to work!
That takes care of the basics. Now I am getting ready to plan for the particulars, you know, the day to day stuff. I am starting to put together a binder of information about Kate. Something organized, efficient and helpful to assist others caring for her when I am not here. My older son calls it the 'Kate Starter Kit'. It will contain information about medical history, likes and dislikes, nutrition, hobbies , resources, preferred accommodations, etc. It will also contain my vision for Kate's best life. Lay it all out for people; it shouldn't be a time for guessing. It's still a work in progress, but I will include pages for this manual as I develop them.
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