One of the first ten or twenty things we learned about after discovering Ellie has Down Syndrome was that when we re-write our will we need to create a Special Needs Trust for her. It seems that people with disabilities who are going to rely on Social Security and Medicaid and other state services are not allowed to have much, if any, personal wealth. By that I mean something like less than $2,000. But what exactly is a Special Needs Trust, and how do we go about writing one? If I remember correctly (mommy brain says, "don't quote me") $2,000 was the magic number when we applied for Medicaid in Alaska, and Virginia. Approved in AK, but denied in VA. That's another blog, ugh.
Back to Special Needs Trusts. I still don't know the exact answer to those questions. What I do know is that when we rewrite our will, which we've been putting off for 4 years now, we shouldn't name Ellie as a direct beneficiary. Nor should our family name her as a direct beneficiary. Once we have that Special Needs Trust we can have that Trust be our beneficiary. We can use trust money to provide various things for Ellie. I'm not sure exactly what. More things I have to find out.
Since it's so complicated and deals with the issue of what to do if we die early, I tend to put this off. That's not the mature way to handle things, but it's my coping mechanism.