A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Thursday, February 16, 2017

My association wants to change

There are some proposed changes coming to my association. The Spina Bifida and Hydrocephalus Association of Ontario.

To focus on Hydrocephalus and take the opportunity that is there to really step up and fill the need for a national Hydrocephalus Association of Canada.

There was a phone conference last night that I participated in, to get more information. And this is what I learned. (I took notes). I am mixing up the order of some of the points, for what I hope is flow is clarity. (Only members were notified of the conference call, but there wasn't anything in the call that said that those who participated couldn't discuss what we learned). There is going to be a vote of members at the end of the month, and only members are allowed to vote.

I found this picture of change, and thought it would appropriate...


The proposed change is to expand into a national Canadian Hydrocephalus association (and have a corresponding name change).

There is an identified need in Canada for a National Hydrocephalus Association. And the SB&H are in a position to fill that need. SB&H stressed that the proposed change will not impact any services that individuals with spina bifida currently receive, and if anything it will provide the opportunity to increase services to members.

  • There is a national Spina Bifida and Hydrocephalus Association of Canada but I am not that familiar with it. Beyond finding it inferior to our Ontario Association. But I might have to look at it more in the future.
  • My understanding is that they concentrate more on the spina bifida and less on the hydrocephalus.
  • They are connected to individual provincial groups, but not with SB&H
  • So I am not sure (and of course SB&H can't say what another group would do) if they would be able to fill any hole left by our organization concentrating on hydrocephalus only.
They said that they have been approached by clinicians who state that there is a need for a national hydrocephalus association.


Another reason is financial. There is the need to look for alternative financial opportunities and look at sustainability solutions for the association to be able to continue to provide services to their members in the long term.

They discussed that there is a decrease in the incidence of spina bifida (a topic that inspired my previous blog post - Incidence of Spina Bifida and What's the Point). But the incidence of Hydrocephalus is increasing, including congenital hydrocephalus (born with), acquired hydrocephalus (caused by something, often as a child), and Normal Pressure Hydrocephalus (adult). So it would make sense to increase focus on the disease that is increasing.
  • They did not say that they would focus less on spina bifida, just more on hydrocephalus

During the phone conference they stressed that the proposed change is to increase services to members and expand the mandate of the organization.

They also said that nothing online (http://www.sbhao.on.ca/ or http://www.folicacid.ca/) would change.



So that is what I learned in the phone conference.

At the general meeting in September, which I try to go to every year, they mentioned this. At the time I didn't really realize that it would be changing my organization. I thought that it would be something separate while still maintaining the Spina Bifida and Hydrocephalus Association of Ontario, but helping to develop a separate Canadian Hydrocephalus Association.

But for my organization to take out the spina bifida part of their name (their identity?) I find it hurtful and frustrating. We identify the most with the spina bifida aspect, and less with the hydrocephalus aspect. Yes Nick has a shunt and hydrocephalus but it is the spina bifida part that affects our lives. (And maybe the hydrocephalus part too, but it is really all rolled into one).
For us, it isn't 2 different things it all means the same thing. Or else how many diagnosis can one diagnosis have (ie spina bifida which leads to hydrocephalus, also chiari malformation, neurogenic bladder, neurogenic bowel, non-verbal learning disability, ADHD ect).
No, we identify with spina bifida and the rest is just part of the package (but not necessarily everything)


And I know that in the planning stage you can say that you won't effect any spina bifida services. But when your name doesn't have spina bifida in it, then how soon before that starts to fade away...
How can you change your name and your mandate, but still provide services to a diagnosis that you no longer identify with.

A concern that I brought up, is for new parents and newly diagnosed. Where will they go to for information?
They won't go to the folic acid website. They are past that, this has already happened.
And they wouldn't go to a hydrocephalus only website or information, that is not a given yet, that is not the focus. You can only focus on one diagnosis at a time, and hydrocephalus isn't it
  • Or at least it wasn't for me, 80% hydrocephalus rate means 20% won't have hydrocephalus, and Nick's didn't develop until he was 3 weeks old)

As a member of the SB&H association, I have the right to vote on the proposed change. This is my  association and my vote will be counted.
At the moment I am not sure how I will vote.

From my letter I received, the proposed change is: SB&H is recommending changes to its by-laws to facilitate the transition to a new national organization with a focus on hydrocephalus.

There is a meeting and vote on Feb 26th, and the ability to assign a proxy to vote on your behalf.

But I still don't know.

I know change is sometimes necessary, sometimes positive, and no one proposes a change that is purposefully negative.
But for all of the promises and talk that this will be positive, will increase services and not effect the spina bifida families. I think that it will eventually. I think that it will create a slope that will gradually take away from spina bifida (not on purpose), but because the mandate is for hydrocephalus and that needs to be the focus.

So that is what I worry about. I worry that it will take away from (and if not take away, then focus less on) awareness of spina bifida and take away from support and information for new parents. And while there isn't a focus on impacting that termination rate (47%), there will never be.
And that hurts me. That number still haunts me and I feel it is 47% of parents who miss out on belly laughs and smiling faces and being told "I love you so much", all because of fear and negativity and the fact that no one has a crystal ball.
  • And I know that this is my bias.
  • And it isn't even a mandate of my current organization, but to me, allowing me to raise awareness and show what spina bifida looks like, I am making a step to inform the next 47%. So when a parent receives a diagnosis they can say "Oh, I know what that is, I can do this, just like Nickolas' parents" (I heard similar words when I told my then-manager, "Oh, just like Charmaine" an adult with spina bifida I have worked with, and have gotten to know.)
That is what I want from my organization. The platform to say "this is what spina bifida looks like" and I worry I will lose that with a Hydrocephalus-only focus.

 And in case you need a reminder.
This is what spina bifida (and hydrocephalus, and chiari malformation, and neurogenic bladder and bowel) looks like!








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