What To Do After You Find Out Your Child Has Special Needs (Part 2)

In my last post I mentioned the importance of reaching out to your local county resources sooner rather than later. Now let’s just assume you’ve done that, pat yourself on the back. Good job! You are not done yet, though. There are legal and financial concerns to ponder. I will use our situation as an example, because all of the legalese can be overwhelming enough (at least it was, for me!). It goes without saying that laws vary from state to state and country to country and may even change over time. That is why it is worth investing in quality legal and financial advice. This leads me to point #2.

  1. Update your will and plan your estate!

When I became a parent, it hit home that (gasp!) I’m not going to live forever. My husband Mike and I had made a will when Jack was around 3 months old, before we knew of his challenges. Once we knew he had cognitive disabilities, we had to redo our will, this time using a lawyer who specialized in “special needs trusts” and estate planning. I remind you I am not a lawyer, but basically a trust is a legal way to protect your assets for the future.

Let me illustrate the importance of having a special needs trust. When someday Mike and I die, (hopefully at a ripe old age in our sleep!), my kids, (Jack and Megan), are our next of kin. Let’s pretend we just had a regular will. With a regular will, we would have split our estate 50/50—this estate includes our house, investments, life insurance, minivan—everything! A regular will would be a major headache for the future guardian of Jack. We are no Rockefellers, but our estate is worth well over $2,000, the magic number for governmental program eligibility. If we had a regular will, Jack would “own” too much in order to qualify for the Medicaid he currently receives with our county waiver. He would also be ineligible for Social Security, that he would otherwise be eligible for as an adult with severe cognitive disabilities. In order to become eligible, Jack’s assets have to total less than$2,000. The special needs trust changes that grim scenario. Fortunately, our lawyer planned our estate specifically so that Jack won’t lose his current and future eligibility for either program! By being in the trust, his share of our estate doesn’t count towards qualifying for the programs. Without the legal trust, Jack would lose his benefits. By having the assets in Jack’s special needs trust, his future guardian can withdraw funds to simply enhance his quality of life (I.e., take him on a vacation, buy him a television) —–without losing access to federal and state assistance programs.

I highly urge you to communicate your estate planning situation to your loved ones. Make sure that in their own wills, that they do not leave money directly to your child with special needs, but bequeath it to the trust. This is for the same reasons I listed above about eligibility. I know from personal experience how awkward that conversation can be, but it must be done to protect your child.

It may seem depressing or morbid, but estate planning is essential to securing a stable future for our kids. But who says it has to be all gloom and doom? When Mike and I met with our lawyer multiple times to create our plan, we called them our “death dates” and even would go out for coffee afterwards. Nothing says “romance” than planning for our eventual demise!


Do you have any questions or experiences you wish to share? Please comment below!

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