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Special Needs Parent Succession Plan

The night before 5th grade.

I recently attended a Board of Trustees meeting for the PKD Foundation. I have been on the Board for several years. Six? I can be on the board for another 3 beginning July 1 if the board decides to ask me to serve another term. They wanted to ask me to stay.

Up until about a month ago I didn’t know if I was going to agree to be asked. I have been wavering the last six months. Not because I don’t support whole-heartedly what the PKD Foundation does, but because it’s just been a really long time. I’ve been an engaged volunteer for the years as old as my daughter. Eleven years.

Then I had dinner with a friend who is employed by a non-profit and works with a board.  She encouraged me to stay on the board another three years to make sure the interests I have for the PKD Foundation are the same as someone else who comes on to the board — that I had to be intentional about the future of my position. It was one of the clearest things anyone said to me over the months while I was deciding. Thank you Beth, for your clarity.

It was in that minute that I agreed to be asked again for another term. Over the weekend meeting there was a lot of talk about succession plans. From CEO (I call this Hit By a Bus Planning) to board chair (term over in a year) and it made me think about my personal succession plan. I’m not talking about a will. Or estate planning. I’m talking about regular life issues. I’m referring to the items that are in my head about where to get the special vitamins. A list of the contacts, copies of insurance cards and the quirks of my kids that I allow for because I know them intimately. Maybe also a list of upcoming annual or semi-annual visits that need to be planned for the kids.

If I got Hit By a Bus I know that my husband and family and friends will have it all covered. My husband is involved enough in their daily care to roll with it and they wouldn’t miss meds or general care. I’m starting to understand that I could make it easier though and why wouldn’t I want to do that?

So, in the next couple of weeks, I’m going to make a binder that will largely sit ignored in our kitchen. Here’s what I’m going to include…

  • List of every doctor/specialist/healthcare worker for the kids
  • Notes about every doctor/specialist/healthcare worker
  • List of pharmacies we use and for what drugs
  • Annual and semi-annual appointments that need to be set
  • Copies of the kids’ insurance cards
  • Copies of the kids’ birth certificates
  • A love letter to each of the kids and my husband
  • A long list that I can start and add to of the likes and dislikes of the kids that probably I only know
  • A list of passwords to my blogs and email accounts with a list of online friends who could update my blogs
I’m guessing I’ll add to this list, too. So probably this is an ongoing thing.
Is this morid? I don’t think so. I think it’s smart for any parent/family to prepare for a Hit by a Bus senario but it’s more important for families like ours and especially for the special needs gatekeepers like me.
Please visit Build-A-Bear Workshop’s blog, where co-founder Julia Roberts shares her daughter’s special needs journey. We’re grateful to Build-A-Bear Workshop for supporting this community over the past year.


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  1. October 30, 2012 |