There is a lot of talk about The Silos in our world of kids with disabilities. The first few weeks after we moved to British Columbia, we were in a rosy state of honeymoon. We had found Aaron a school that accepted and believed in him, and all was well.
Then reality started creeping in. In Alberta, I had childcare, respite, a pediatrician, a pediatric dentist, an audiologist, a psychologist, an optometrist, a behaviour coach, Special Olympics, other adapted recreation programs and a social communications program all set up for our boy.
In this new province, I am starting from scratch. It feels like when Aaron was first diagnosed, but this time (thankfully), I’m not in the midst of thick grief and juggling a newborn baby and his young siblings while I’m filling out forms and running around to appointments. I’m 12 years wiser, but still incredibly frustrated because I know the people in the systems can do better.
Here’s what I have written in my ‘to do’ scribbler:
Eight weeks into living here, and this is a MESS. I can’t secure funding for after-school care for Aaron, and the daycare won’t even consider him without funding. For some reason, the school wants another audiology test, even though he had one in January. The psychologist wants to give him an IQ test so he can get funding for high school (um, NO). Our awesome nurse coordinator back in Alberta requested a referral to a pediatrician here, but I haven’t heard anything back. We have to go to yet another ministry to apply for respite funding, but I haven’t heard back yet either. Back in Alberta, the ‘Family Support for Disabilities’ (I put that in quote because they don’t actually support families) people with the Ministry of Human Services rejected our application for funding for Aaron’s dental surgery that happened in February because we did not get all their (stupid) forms filled out and signed before surgery (plus they sent me the wrong form to begin with and I got it all signed and then had to start all over again when they sent it back, rejected) because he had surgery very quickly because we took a cancellation spot. We are waiting to hear if he’s been accepted for a week long overnight Down syndrome summer camp (thankfully my lovely Alberta pediatrician filled out the medical form for us because we do not have a pediatrician here yet – see above) but the Nursing Director has to ‘approve’ him. To travel on the ferry at the ‘disabled’ discount, we have to fill out a form proving his disability and we do not have a doctor to fill out the form (see above). I am waiting to hear if an awesome-sounding summer day camp will accept him, because he’s 12, not 13. People don’t return my calls or emails, show up for our pre-scheduled phone meetings, and I spent hours each week just following up on something I’ve already initiated.
This is what The Silos look like in real life. And this is for a kid who only has Down syndrome – he does not, thankfully, have any active medical concerns right now. (Although he did get bit by a tick last week, but seems fine thank goodness because he does not even have a doctor to go to).
This whole mess is infuriating and frustrating. They send me forms and I dutifully fill them out and mail them back and then they send me a letter telling me to refill out forms that I’ve already filled out. I am so sick of filling out forms and photocopying paper and walking to the mailbox because nothing is electronic and spending my days off in ‘intake’ meetings repeating the same information over and over about my child and convincing them that he’s either: not very disabled or super disabled so that we can access their programs.
And I actually WORK in a children’s hospital and have some understanding about how to ‘navigate’ this damn system. We can even pay out of pocket if we have to. (And what of the families who do not have my advantages? I fear they are just lost forever, laying at the bottom of some Damn Silo).
But when I consider all I’ve written above, I just want to crawl back into bed.
WHAT IS THE SOLUTION TO THE SILOS?
Yes, please, leaders in health, education and child and family development, please keep on meeting and chipping away at these Damn Silos. This gives me a glimmer of hope for the future, but I’m sad to report that change is not going to happen in Aaron’s generation. I really hope it does for families behind us in our journey. These Damn Silos took decades to carefully construct, and they aren’t going to be dismantled anytime soon.
Here are three simple things that I firmly believe we need:
- Connection with other families. If you are working with a new family who has a new diagnosis, or who are new to an area, please find a way to connect us up with other families in our world.
- Family leadership and advocacy skills. Teach us how to effectively make our way around these Damn Silos.
- One person who will actually help us. Nobody helps us. Or, they will help in their little piece of The Silo and then they are done with us. Or they say they will help us, but then they don’t return emails or phone calls – so that’s not really any help at all, is it?
Note: these must be done in conjunction – just hiring a ‘navigator’ isn’t going to help if we cannot do things ourselves or be connected with our peers for support.
In future blog posts, I will provide more reflective insight into these three solutions. I am currently neck deep in the Ranting Stage of Frustration. I will pop back up once I’m able to be more constructive. Right now, I’m going to put my head down on my desk and have a little sleep.