I’m a compulsive planner which means I
need like to know what’s going to happen next; and if I can control what that is, even better. FYI — I know what we’re having for dinner every night for the next two months.
When it comes to my children, I have to remind myself to stop obsessively looking forward. However, there are some things that really must be arranged in advance when you have a child with a disability.
Though I hope to be around for a long time to care for my family, even I, the master of control, can’t control that. So as unpleasant as it seems, we recently updated our wills and named our children’s guardians and Powers of Attorney.
We also created a document listing all accounts, assets, debts, passwords, and any other crucial information
family members would need in the case of, you know, our demise.
We set up an RESP
for our son. He’ll need it to help with law and medical school. After that, he’s on his own. I’m sure his astronaut salary and Pulitzer prize money will be enough to get by on. (What? I tend to dream big.)
So with those details in place, I can relax and just enjoy my kids, right? Well, not exactly.
My daughter puts a kink in that plan. Her developmental delays mean she will always require some level of care. Since we don’t want the burden to fall upon her brother’s shoulders, we’ve made some extra provisions.
And this where it gets complicated… and where I wish my son would hurry up and finish law school and help his poor legalese challenged mother out!
Our financial advisor helped us set up an RDSP. “A registered disability savings plan (RDSP) is a savings plan intended to help parents and others save for the long term financial security of a person who is eligible for the disability tax credit (DTC).” source
Then our lawyer helped us create a Henson Trust in our daughter’s name—this will protect her assets (typically an inheritance), as well as her right to collect government benefits and entitlements without being dinged with government taxes and fees.
Don’t forget to also put together some kind of document (ours is a big ol’ binder) containing your child’s medical records, medications (doses/schedule), doctor, dentist, and therapist information, your child’s likes and dislikes, strengths and challenges, education related information, and daily schedule.
That way in case of, what I mentioned before – I’ve knocked wood about a dozen times writing this – the people taking care of our special kids will have this “Life Plan” to follow and will be in a better position to fully understand their needs.
When my husband and I are no longer around to provide for our daughter financially, she’ll need funds to sustain a good quality of life. Our lawyer got the ball rolling, but since then my husband and I have been floundering a little, trying to figure out a lot of this out on our own.
I could attempt to explain RDSPs and The Henson Trust and everything else involved in developing a “Special Needs Plan” but it’s complicated and always changing. And since there’s so much riding on getting it right, I’ll leave the details to the experts.
If you are raising a child with a physical or mental disability, www.specialneedsplanning.ca is a good place to start. It’s a great resource with the information you will need to start developing a plan.
Also, talk to parents who have already set up such provisions. I find other parents are often the best (and easiest to actually understand) source of information.
Once you have a plan in place, be sure to review it yearly, and update it as needs and situations change.
Then, all you need to do is relax and love your children like crazy.