What happens if I die? Estate Planning For Children with Disabilities

It’s not something that any one of us want to think about, but the question, “what if I got hit by a bus tomorrow?” is one that has plagued my parenting life since giving birth to two children on the spectrum. In fact some years back, I posted a harrowing article about a young woman with autism who was left suddenly when her mother died without warning in their home. While it is good for all parents to plan ahead, estate planning for children with disabilities and special needs requires a slightly different approach.

Here are the steps that can ensure a smoother transition, long term care, and will help you rest easy knowing that your child will be looked after if anything happens to you.

1) Get life insurance

This is a must for parents who have a child with a disability. One tip is that the sooner you start life insurance the cheaper it is. No matter if you pass at 48 or 88 your child with autism will always benefit from a policy that you have set up.

2) Write a will

Again, many people fail to write a will because let’s face it, life is busy and none of us want to think about our own mortality. Wills are essential for those of us with dependants because without a will, your child will likely end up in foster care while the government goes through its bureaucratic channels to figure out where to place him/her. Unless there is another parent, your child won’t automatically go to another family member or caregiver without a will.

3) Try to plan to continue as consistent a life as possible

This will of course be entirely dependant on the kind of funding you can leave for your child, but it can also mean getting your child used to plan B years in advance, so that plan B is a relatively normal part of life.

4) Set up custody or a guardianship in advance

Make sure that the person who will be taking on the “parental” care of your child is involved in their lives, so that the transition of care is comfortable and expected under the circumstance. The guardian should also be actively involved in the child’s treatment plan so they are comfortable with it in case they are asked to take over.

5) Have a developmental assessment for your child periodically to see what level of care will be necessary after you are gone

Many children grow to become independent adults who simply need someone to check in on them, while others could require continuous care. You don’t want your child to be saddled with an inappropriate level of care depending on your exit and their growth curve. If your child is developmentally impaired, this step is even more important as needs can change as the child ages.

6) Discuss the “what ifs” and eventuality of your death with your child

While this might sound morbid, this is an especially important  step for children with disabilities who might not otherwise understand that this change is natural, and will eventually happen whether it’s sooner, or later when they are adults. Preparing your child to understand death doesn’t have to be sad or morose; it can be factual or spiritual depending on your beliefs. Encourage your child to share their beliefs and feelings so that they can work through some of them while you are still around. You can even share your estate plan with those that are able to understand as a way to help them feel safe and cared for, and prepare them for that change if it happens.

7) Don’t use metaphors when discussing death with your child

For children with autism if you use euphemisms like “going to sleep”, you may spark a fear of sleeping. It is best to be specific and use specific language. If you have a terminal illness, you can use visual aids to show your child when you will need to be away at the hospital, and you can also use charts and graphs to show them what isn’t going to change in their schedules and lives even if you aren’t around.

While the idea of leaving our children who need our care can be truly terrifying, being prepared and planning ahead can assuage most of those fears. If done properly, it can also prepare your child, and help them through what for any one of us is a difficult transition – losing a parent.

Further Reading: 

Understanding Death and Illness and What They Teach about Life: A Practical Guidebook for People with Autism or Aspergers, and Their Loved Ones by Catherine Faherty

Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum by Karla Hiebert