Estate Planning with a Special Needs Child

My husband and I recently went through the process of having a will (and other end of life documents) drawn up by an attorney. It was a hard, enlightening, and empowering process that you can read about on my personal blog if you feel so inclined. Since then, I've gotten several questions from parents who have a child with special needs or from service providers who work with people who have a disability asking about how this process works, so I wanted to share some of the most basic details here. 

Thinking about what would happen to our son in the event of the unthinkable was always something that weighed heavy on my mind. It would literally keep me up at night sometimes. We knew there were people who loved him unconditionally and that they would look out for him, but I worried about whether they would have everything they needed to help him transition and eventually to thrive. After talking about it for a couple of years, I asked one of the social workers at our local autism center if she knew any attorneys who helped with estate planning for families like ours. She gave us the information for a local attorney who specializes in estate planning when there are children with special needs involved. An attorney who deals with estate planning in general may be able to facilitate this process without issue, but it was nice to work with somebody familiar with disability law because she thought about our son's lifespan and all the potential legal issues that may present themselves because of his disability.  

Many people traditionally set up their wills to leave their assets to a trust meant to benefit their children. Basically this puts an adult (or multiple adults) in charge of the resources until the child turns 18 and ensures that whatever assets you have are used to benefit the child. The person who oversees the trust is know as a trustee and you get to decide who that person is. It can also be somebody entirely different than the person who will take over guardianship if you feel like it's important to have multiple parties involved. The benefit of having a trust in place is that you are ensuring that your assets can only be used for certain purposes and only to benefit the child. Your greedy brother in law can't use your life insurance payout to go buy a boat. Hopefully you don't have a greedy brother in law, but people do weird things when they are grieving. 

The difference in special needs estate planning is that there is a special needs trust established rather than a traditional trust. This sort of trust basically ensures that no matter how much you leave your children, that it will not impact their eligibility for income-based government programs like SSI, Medicaid, etc. This is so incredibly important for disabled people- just because they inherit money does not mean that they should lose access to critical services. And even if you're thinking "well, I'm not rich, I'm not going to leave them that much", we all know that it doesn't take significant income to make you ineligible for these life-saving programs. It's better to 1. ensure that whatever you have goes towards their care and 2. protect your children from losing their benefits. By the way, if anyone else in your child's life plans to leave them an inheritance, in the absence of a special needs trust these gifts could also impact their eligibility for services. As long as you are alive, you are the trustee so if you have a loved one that leaves money to your child, you will be able to access it through the trust at any time. And if you're thinking "but my child doesn't receive any of those services", I'd just caution you to recognize that one day they may need access to those resources even if they don't need them know.  

Here are some things to think about as you approach the estate planning process: 

  • It's important to work with an attorney who is familiar with special needs estate planning. They will think about things and plan for things that an attorney without this experience may not and they will help you update the information and think about other legal considerations as your child ages. For instance, just before your child turns 18 you may need to consider a conservatorship or other legal means for protecting your child's assets. An attorney experienced in this field will help you stay on top of these special considerations. 
    • I would recommend contacting local social service agencies that work with people who have disabilities to find out if they know attorneys in your area who specialize in this. When you do finally contact an attorney, ask them about their experience in special needs estate planning and don't hesitate to walk away if you are not comfortable with their answers. This process is too important to do half-way or to do incorrectly. 
  • Try not to have sticker shock. Our attorney estimated that this initial process would cost us about $2,500 (perhaps a bit lower). I'm still waiting on our final bill but I was initially taken aback by the cost. Given our age, she currently recommends we update it every 5 years (or sooner if needed) which will be a much less significant cost. 
    • I realize this presents a barrier for lots of people. In my mind, it was worth taking the money out of savings because it will ensure that our loved ones have immediate access to everything they need to care for our son and that there will be zero confusion about our wishes. Based on everything I've heard, it is far far far more expensive for your loved ones to try to sort this stuff out after your death than if you have it all done in advance. The last thing I wanted was for our loved ones to be stuck with a hefty bill or for the resources that were meant to help sustain or son to be spent on legal fees. If you can afford it or save up for it, I'd argue it's worth the expense. 
  • Realize that it's about more than the assets. While money and property are often the focus of end of life planning, so is the human part. Our attorney helped us pull together a ton of information about our son's daily routine, needs, service providers, etc. It's information that will be incredibly helpful should somebody need it. It also forced us to have some hard, but good, conversations with our loved ones about the role they can play in our son's life in the event of our death. Nobody should have to guess about your wishes and I hated the idea of our loved ones trying to figure out who should be responsible for our son in the midst of their grief. Finally, it was peace of mind for me. I am confident now that our son will be well cared for and that our loved ones will have access to everything they need to help him thrive. And that's a gift in and of itself. 

Feel free to reach out with specific questions you have about this process. I plan to follow this article up with other, more detailed information, but hopefully this gives you a place to start and some important things to consider as you begin this process.


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