Watching Daniel Bloom

Doing the math – and it doesn’t add up (a rant)

Posted on: May 21, 2011

I’ve been feeling guilty recently, and wondering if we weren’t so focused on other possible diagnoses for the past 6 months, then maybe Daniel would have had access to therapy options earlier. Sadly, the reality is, it really wouldn’t have made a difference anyway. The truth is, we are on all the necessary waiting lists, and we really couldn’t have gotten on them any earlier than we did.

So I’m left sitting here with a sense of urgency about getting him appropriately assessed and into treatment, and the incredibly frustrating reality that our system does not share that sense of urgency in situations like ours. In fact, the only way to access therapy sooner would likely involve re-mortgaging our house, quite literally. And that is a frightening prospect, and a very, very bad sign for our community and our children.

So now I’m going to rant. Because one of the things this whole experience has made me is angry. Angry at a system that is convoluted and broken. Angry that some of the most vulnerable members of society are being left to sit on waitlists while precious time passes.  Angry that despite the fact that we have good jobs with comparatively good benefits and that we pay our taxes and do do our part and despite the fact that we’re well-educated and fairly well-connected and we have a lot of support/healthcare resources at our disposal…well, despite all that, we’re still feeling lost and we’re still sitting here, waiting, knowing that we have a lot more waiting ahead of us.

When we had kids, we accepted a certain responsibility – we knew that we would spend thousands of dollars a month on daycare, untold amounts of money on clothing and feeding our kids and putting them in extracurricular activities, and eventually, an enormous sum to put them through school. But we never counted on paying through the nose for healthcare.

Living in Toronto/Canada, we have the advantage of a publicly funded healthcare system that provides “free healthcare”.  It does not, however, seem to give us the right to adequate healthcare in a timely manner. 

There is one therapy (ABA/IBI) that is recognized as effective for kids on the spectrum, and it has some promising outcomes; howeer, the outcomes are significantly better in cases where therapy begins early (ie. well before age 4). Here’s the problem – the waitlists to get access to ABA/IBI in Ontario are easily 2-4 years + from start to finish, which means it’s basically impossible to get a child funded therapy during the crucial window that drives those really good outcomes.  So we’re talking about a wait-time that could be life-changing. And that breaks my heart.

What bothers me even more is the fact that I know that if we lived in Connecticut or California (among many other places), Daniel would have received a full assessment long ago, and if he was diagnosed on the spectrum,  he would likely already be getting 20 – 30 hours a week of therapy at a minimum. The reality is, literally a full year after sounding the first alarm bell, we’re still waiting for the publicly-funded assessment by a developmental pediatrician, and the wait is likely to be another 2-3 months before our “number comes up”. Even scarier? I happen to know that if our house was 2 blocks east, the wait would be an additional 8-9 months + (I know this because there was confusion around which list we got on due to our location on the border of two “areas”). Fortunately for us, in this case, we happen to be on the “right side of town”. Despite that, we don’t feel that we can afford to wait, so we will fork out for a (another) private assessment to shave a couple months off the waiting time.

Beyond that, we haven’t even got on the “real” waiting list (ie. the one for ABA/IBI, which, as I noted above, is the only recognized and effective therapy for spectrum disorders).  When you call the Centre that administers most of this care, they basically won’t tell you anything until you have a formal diagnosis/report in hand. In fact, they outright refuse to get into a discussion about waitlist times at all, saying only that that the wait is very long  (that’s verbatim what the woman said on the phone). It seems that the reality is that the wait is up to 2 years (based on research I’ve done).

As it happens, we’ve been fortunate enough to be in a position to “go private”, at least on a couple of things, and we will continue to go that route as long as we can. It may mean giving up vacations, and other “extras”, but that is a small price to pay if it will help Daniel meet his potential. We’re already doing weekly private speech therapy (at $125 a shot/ ~$550 monthly), with PT (physio) starting next week (also $125 a shot/ ~$550 monthly) and a full spectrum assessment (which will run us close to $2000) in a couple weeks from now (note – I’m only sharing these numbers to give a true sense of the situation, and to give some perspective).

In order to accommodate appointments, I am only working 4 days a week, with the 5th day dedicated to doctors and therapists. So to top it all off, we’re also taking a salary hit . If you do the math, giving Daniel the most basic level of therapy will cost us approximately $15,000 over the next year – and we’re only scratching the surface of what may be warranted.

This is already taking a financial toll, and I cannot imagine how we’re going to manage if we need to add 25 hours of IBI/ABA to the mix, plus weekly OT and PT (this kind of therapy is typically $30-50K annually, depending on the number of hours). We’ll figure it out, and we’ll find a way – but it will change our family’s situation dramatically and it will involve giving up a lot.

Everything from the house we buy next year to the camps and extracurricular activities that my older daughter will be able to enjoy will be impacted. It’s a very difficult prospect to come to terms with, but I just have to thank God that we will have the OPTION to make those sacrifices if they are warranted.

What scares me is that our family income is significantly more the “average” family income in this country.  I share this because I’m so distressed about the lack of services available for the children in our community. What on earth would we do if we were living on an “average” income? What are all those families and those children doing?  It’s a scary thought.

I just don’t get it – is it just me, or is there something very wrong and unfair about all of this?

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