Special Needs Parent Succession Plan
The night before 5th grade.
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
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About The Author
Julia Roberts
Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.
I recently tried to reach you via email, but didn’t hear back. Knowing how it is with so many emails coming into everyone’s Inbox nowadays, I thought that maybe posting a comment would be a quicker and much better way to connect.
I am working with a very special lady, Dr. Julia Kinder, who has an 8 year old daughter with Down syndrome. We’re trying to promote A PETITION REGARDING DOWN SYNDROME and I thought you would be a great resource to help spread the word.
PETITION – https://www.change.org/petitions/medical-school-faculty-require-complete-education-on-down-syndrome-for-3rd-year-medical-students
We’re also having all sorts of activities on her website Celebrating Down syndrome – http://www.juliakinder.com/DownSyndromeCelebration/
We also published a national Press Release about this a few weeks ago, but we need the active Down syndrome community to get involved – http://www.prweb.com/releases/Dr-Julia-Kinder/Down-Syndrome-Celebration/prweb10028318.htm
Please let me know if you would help by posting some of this to your interested audience: colin@juliakinder.com
Your time and efforts are so important as we try to change the stereotypes surrounding Down syndrome – dispelling the myths – and as we try to CHANGE THE WAY IN WHICH THE MEDICAL COMMUNITY PROVIDES RESOURCES TO NEW PARENTS. We can only achieve these goals with your help!
Thank you so much!