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.

If you are concerned about your special needs child’s sibling, and want to be sure your plan for your special needs child works for their siblings as well, call Parker Counsel Legal Services at 833-733-2668 or email to set up a short information call to see how our special needs law firm can help you.

Seek out others like you and learn from them

support- scrabbleIf you’ve been a parent of a child with special needs for very long, you know how many things you run into that the ordinary parenting books, and ordinary parents, can’t answer for you.  The very best thing I ever did for myself as a parent of children with special needs is to hook up with other parents.  There are many ways to do so – your school may sponsor special ed parent meetings, local disability organizations may sponsor parent meetings.  Online you can find parent groups connected by email, and many parent support groups are on Facebook.

Join a group and listen.  Make a point to participate by answering questions and asking your own.  Share the good, the bad, and the ugly about your days.  You’ll learn a lot.  You’ll learn about resources for your kids. You’ll learn about treatments and techniques that others use.  You’ll learn about programs for your kids.  You’ll learn about ways others have found to deal with insurance, and doctors, and therapists, and bureaucracy.  You’ll learn what the future may hold for your child.

And most importantly of all, you’ll learn that you are not alone.  You’ll learn that there are people who understand your life and that you can talk to without judgement.

You may know I have two personal needs children of my own, and I belong to several parent groups.  And frankly, I have learned and still learn frequently from the clients sitting in my office as we drift away from discussing executors and trustees and start talking about our lives.  No matter where you live and how much you know, there is always more information out there, and parents are often the best source.

Some online parent groups you may want to check out:

North Shore – Seacoast Special Needs Parents

Pioneer Valley Special Needs Parents

Austin Special Needs Facebook Group

Parent Support – Veterans of the Fight

Adults with Cerebral Palsy Advising Parents of Kids with CP

Parents of Severely Disabled Kids

If you belong to a great parent group, please post it in the comments for others to check out.

Parker Counsel Legal Services serves families in Central Texas, Western Massachusetts, Northern New Jersey, and the New Hampshire Seacoast with special needs estate planning, special needs trusts, and guardianships. Contact us for a consultation at 833-RED-BOOT (833-733-2668) or legal@parkercounsel.com