Whose side are you on anyways?

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So I usually do a little bit of a lead in, or a little bit of a story, before I jump right in to what it is I want to get off my chest or the matter at hand. But this time I am just going to go for it because I am so incensed and upset by the situation that has occurred recently.
I will start off just a little bit by saying that my experience as a special-needs parents has led me to realize that there are realistically few places in our society where our children don’t have to worry about being different, or where they don’t have to try to belong, or have to modify the way they do things so that they can feel included. One would think if using the rational brain that a children’s treatment center would be one of these places. We all know that in general many of the treatment centers can be a source of frustration for the families of the children who are clients. And this can be for a variety of reasons, everything from the personalities of the therapists that they are working with, the treatment options available, or the intensity of the actual therapy program. Some parents have nothing but a positive experience, some have quite the opposite, and some fall into place in between the two. I would have to say that in our experience we have had great outcomes from our time spent at our local treatment Centre, Erinoakkids,  but we have also been faced with the same challenges that many families before us have also faced. Up until a few months ago I would honestly have said that the good outweighed the bad. With the exception of perhaps one of the therapists that have been on Team Maclain the remainder of the professionals that we have worked with have been extraordinary. I attribute many of Maclain’s successes, especially in the area of speech and language, to the amazing efforts of the AVT and SLP therapists. We have also had wonderful physical and occupational therapists although with Maclain significant physical challenges, we did not achieve as many great results as we did with his hearing and language. I do not however give any of the credit, to the actual organization. Only to the therapists themselves. Our challenges with the organization have left much to be desired in the way of family centered care. I love buzz phrases like that. People relish the concepts, and pride themselves on putting the slogans up on their wall, but very few can actually deliver a true family centered program.

We recently had an upsetting experience, and I felt that it needed to be highlighted and shared.

A few months back we were at their south millway location, which is just one of their satellite locations. At that particular place, they house many clinics, among them being seating, orthotics, nutrition, and developmental follow up. We are often at this site to see the augmentative communications team, and sometimes the nutrition clinic, and about once a year we go for seating. Lately, our visits have ramped up because we have been doing a lot with Maclain’s communication devices, and he is being fitted for a power wheelchair.

We were pleasantly surprised one day when we walked in and saw that the waiting room had been overhauled. After inquiring, I learned that another foundation had donated the space, complete with new ipads and touchscreen video games. What I great idea I thought immediately, perfect for the kids who have to wait for what is not always a nice visit, and great for the parents, who would rather be anywhere then sitting with their child waiting for yet another therapy appointment or orthotic fitting.  Maclain right away zeroed in on the fun looking electronics, and asked to play. So I happily wheeled him up, and then realized that he could not fit under the table. He also couldn’t reach them from the side because they were too far back. I figured that maybe I needed to sit him more upright, which I did, but again, to no avail. I was shocked? I quickly asked anyone and everyone who I came into contact with, if they knew there was a problem with accessibility? I was told that yes, they were aware, and that they were having internal discussions about what could be done to fix things. Ok, I calmed down a bit, and although still irritated, I was pleased to hear that they were going to find a solution. How it even came to be that the waiting area was revamped in the first place and allowed to be opened with accessibility issues was beyond me, but if they were going to fix it, I would let it go.

As with most things related to my special needs parenting experience, I tend to go to the other parents to see if they have had similar experiences, and to garner their advice. And just as I expected, we were not the only ones who were troubled by the accessibility issue at that location. I also found out that other parents had too made inquiries and were told the same thing I was.

So fast forward a few months, and we have returned for another appointment, and to my dismay, no changes have been made. Now, I am getting mad. I again inquire about what is going on, and find out other parents have also done the same, and this time we are told that they did investigate and there is nothing they can do, and that they will consider this a lesson learned. Um, excuse me? A lesson learned? So, it is ok that the kids at this site can’t all access the great new electronics in your waiting room, and you will make sure that your new location doesn’t have the same problem? Oh, and important to note that no one from the organization willingly notified any of us who had complained about their decision to leave things as they are. We had to go back and ask them. I asked why they weren’t just proactive and maybe use social media as a way of highlighting the concerns, and then posting some politically correct answer, but at least publically acknowledging their error. I was told that if they did that, they would be opening up a can of worms because other parents would find out, or start complaining. I see then, it is better to hide and hope it goes away?

After escalating the concern to the communications department, who never bothered to respond to me directly, but rather just forwarded off my email to their best trained public speaker, I am told that 95 percent of the kids can access it. And while that is still not perfect, it is pretty good right? No, wrong. And I also highly doubt their 95%, especially when they told me that they did not consider kids using walkers when they did their initial assessment. What? You are a treatment centre and you didn’t consider kids in walkers? And you also are telling me that my son is pretty much the only kid in a wheelchair that can’t access the stuff?  And then you directed me to check out the amazing photos of their grand opening launch. Oh, look, not one kid in a wheelchair. Weird. But you are willing to make Ipads available for those kids who are left out, and they can sign them out and use them while they are waiting? So they can do that while they watch the other kids using all the cool other stuff? How is that fair? How does a children’s treatment centre even think about having a two tiered system of access?  You walk and don’t need equipment, so you can use the new stuff, but you over there in the wheelchair, you need to use this Ipad.  And do you really think you can police a program like that? And when the loaner Ipads break or get stolen, you will just replace them? I don’t think so. How would the foundation that made the donation feel about that? There was a nice big write up in the local paper about a joint fundraiser they were doing so they could continue to revamp the waiting rooms and make them a fun place for kids. I had to physically stop myself from opening my front door and yelling out at the top of my lungs

I asked them what input their family advisory council had in the decisions. Guess what? They don’t have one. Shocker.  They used to, but now they said they don’t have any clinicians willing to give the time to sit on a joint council. But was I aware of their comments box? Oh, you mean the comments box that no one uses, that looks like it was made in 1975, people put used tissues in it, and is a totally one sided way of communicating? I will pass thank you.

As if you had to guess, this fight is not over. It has only just begun, and it will not go away. It has now reached a point where it will be escalated to the people at the top, and more parents have joined to get this righted. Sad though, that with all the fights we face, and all the challenges we have, that we have to go this far to get an accessible waiting area for our kids at a children’s treatment centre. A place that should know first hand what we have to deal with every day in our role as special needs parents. Sad.

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One thought on “Whose side are you on anyways?

  1. Brenda
    You articulated the problem so well and I commend you for you courage, passion and advocacy for Maclain and his needs. I have read many similiar complaints about the exact access issue you describe above. They have certainly failed and there is no equal access. I hope the situation is corrected but it is sad and as a special needs parent I find these types of disappointments and failings very hard to tolerate, things should be made as easy as possible for clients but so often this is not the case.

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