You’re Forgetting Someone Important

Special needs planning when your child has siblings

(This guest post was written by Cassidy Parker Knight, the adult daughter of one of our attorneys. )

If you’re a parent of a child with special needs, you’ve probably spent some time wondering about what your child’s future will look like once you’re not around to take care of them anymore – maybe a lot of time, and maybe more worrying than wondering. Where will they live? What money will support them? Who will take care of them?

“the reason you’re worried is because you won’t be around, but the reason your other kids worry is because they will be around.” 

Cassidy and her big brother Dylan

            You may not realize it, but if you have other kids who aren’t disabled, they’ve thought about it too. Of course, the reason you’re worried is because you won’t be around, but the reason your other kids worry is because they will be around. They may worry that you plan on your disabled child living with them and they don’t want that, or they may worry that any financial burden will fall to them, and wonder what happens if they can’t afford it. If they’re older, they may worry that there is no plan, and that it will be all on them to figure out after you’re gone.

            I think I was in middle school the first time the thought occurred to me that someday, my parents would be gone and it would just be me left to care for my brothers. It’s overwhelming, at just 12, to start worrying not only about your parents dying someday, but all the lifelong responsibilities that will come with those deaths. And the older your kids get, the more aware they’ll become of what those responsibilities entail. I’ve spoken to siblings who made decisions about college, their profession, where they live, and whether they start families all based on their future responsibilities for their siblings.

            For a parent, it must be overwhelming to think about planning a future for your child that you won’t be a part of. It can be easy to think that you’re shielding your other kids from that worry, but in reality, the opposite is true. Your disabled child’s adult siblings are your biggest allies, and filling them in on any estate planning you’ve done or wishes for the future you have will also be a kindness to them. It can also help you both to spot problems with the plan while you still have a chance to make your voice heard—for instance, if you want your child with special needs to live with your abled child and you learn that your abled child doesn’t want that, it’s probably important to you that you have a say in the alternative.

            In all the conversations I’ve had with other siblings though, the most common worry I hear about the future is not about the responsibility or having to take care of their sibling—it’s about the uncertainty. If you have the estate planning under control, fill your child in, especially if they’re not really a child anymore. Let them know what roles they should and shouldn’t expect to play, and give them an opportunity to tell you whether that fits the role they want to play. Most importantly though, there should be a plan. If that part hasn’t been done yet, starting that process would really be the greatest kindness you could do all of your children.