Several days ago, Super Dad and I attended a session at a local autism support group on special needs trusts and estate planning. It is hard for me to imagine “estate” planning, since the few assets we have are far from an “estate”. But that is all the more reason we need to be thinking about the future for LuLu.

What we learned from the attorney who spoke, who specializes in special needs planning, is that we need to make provision for whatever inheritance that LuLu could receive from us so that it doesn’t negatively impact whatever disability assistance moneys she may receive through SSI or Medicaid as an adult. Without proper planning while the child is young, inheritances can wreak havoc with an adult child’s life.

In Georgia the law allows for the reaction of a Special Needs Trust (and it does in several other states as well). Setting up a trust can initially be a bit pricey, but the purpose is to remove the future inheritance assets from going directly to your child with special needs. Instead they go into the trust where you have specified what they are to be used for and named a trustee to administer the trust. This tool should also be used for any inheritance that extended family may want to pass to your child as well.

At this point, we can’t imagine what LuLu’s future holds. Will she be considered disabled in the eyes of the government to the point that she’ll receive SSI and Medicaid benefits. (We begin working on this process this year.) We’ve been told that she has some severely impacted life skills, but that getting a child with mental illness issues qualified as disabled is a tricky process. LuLu’s autism diagnosis and symptoms that can be attributed to autism may not be severe enough to qualify her alone.

The mindset you have to have when pursuing SSI disability and when doing special needs estate planning is to prepare for the worse (and still hope for the best). You need to project to the future what you think the worse case scenario is…that your child will not be able to live independently and care for themselves and/or hold a job without continued assistance. This thought process can be uncomfortable, especially for those who are “working hard” to help their children gain skills and improve. The therapists, teachers and other professionals in your child’s life will be full of positives about how your child is progressing. But step back and take a look at where your child is at the present and project that into the future…in a worse case scenario. Then plan accordingly.

State laws vary widely; so special needs estate planning really needs to be done with an experienced attorney or financial planner who specializes in these things. There are also some very important and hard decisions to be made with the planning, such as who is the trustee of your child’s estate trust or do you need to establish guardianship over your child once he/she turns 18. While your child is young is the time to be thinking about these issues.

Special Needs Estate Planning Sites

National Alliance on Mental Illness’ Special Needs Estate Planning Guide

Special Needs Law Attorney in Georgia

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