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The Hidden Costs of Autism

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I’ve already written about how much ABA therapy costs and how it’s not covered by medicare, and how what the government does give us as parents isn’t nearly enough to properly treat our kids. However, there is a lot more to Autism than ABA. There are a lot of hidden costs. Now, I’m not saying the government should fund all of these things too. I’m simply saying that if they’d get off their asses and pay for ABA, the hidden costs wouldn’t be such a burden for parents.

First, a reminder of ABA costs, in case you’re not a regular reader. And why aren’t you?!

BIs: 30hrs/week @ $30/hr x 48 weeks = $43,200

BC (remember, this is a required team member): $120/hr x 3hrs/mo (avg) x 12 months = $4320

SLP: $100/hr x .5/hr per mo. x 12 = $600

OT: $100/hr x .5/hr per mo. x 12 = $600

PT: $30/week x 48 weeks = $1440

Total: $50,160

PER KID. I have two.

(This is ours. Other people spend more on OT or SLP or PT. We spend less than that on BIs because we can’t afford it, obviously, but that is what is reasonable. Some people do 40 hrs/week)

What hidden costs, you ask?

1) Safety proofing the house Remember when your little one was just starting to move and you had to baby proof? Now imagine that kid is 5. Strong and clever. And just as clueless about safety. How easy is it going to be to baby proof that? I’ve spent hundreds of dollars on door knob covers, that I have then had to duct tape on.

I’m currently considering replacing carpets that he’s destroyed with urine, having electricians come and move some outlets to the ceiling. Also, I need shelves hung that I can put the DVD player and printer on. Because those things have moving parts and moving parts are crack to kids with Autism.

I’ve already put in a security system that announces loudly when doors or windows open. By the way Vivint is AWESOME. We’ve had their system now for a year and a half and it’s been excellent. So that’s not cheap, but is totally worth it. Seriously. I think it may have saved Crackle’s life a few times already.

2) Gluten free diets Gluten-free diets aren’t cheap. I mean, even the federal government acknowledges this in the form a of a tax deduction for people with Celiac Disease. However, they make it really really difficult to claim. You can only claim the difference in price between gluteny food and gluten free. And you can only claim it for someone with a biopsy-confirmed dx. So if your whole family is eating gluten-free to support your Celiac patient, because it is virtually impossible to keep crumbs out of their food, too bad. You’re on the hook for the costs. And if you do claim it, prepare to have it audited.

Now, gf can be done on the cheap. If you’re not interested in eating bread, pizza, anything breaded. Because the substitutes for these foods are expensive. Even gluten-free flour for doing your own baking is expensive. But if you stick to fruit, veggies, seeds, nuts, rice, beans, you know, whole foods, you can eat pretty cheaply. I can feed our family of 5 for about $6 quite easily. But the kids do like baking and crackers and whatnot, so usually our grocery bill is pretty high.

3) Babysitting When I was a teenager, I babysat kids for $2/hr. Nowadays, the average teenager gets $5/hr. However, I can’t leave my boys with a teenager. I can barely look after them myself on a bad day. I have to get someone who has First Aid training at minimum. Babysitting costs $15/hr. for someone with enough skill to manage. And even then we’ve had a number of duds.

4) Doctor’s appointments Doctor’s appointments are the bane of my existence. If anyone of us has an appointment, either MrFCS has to take the time off work (and God bless his union for making this possible) or I have to hire the aforementioned babysitter. For example, Crackle needed blood work the other day. I couldn’t find a sitter, so MrFCS had to take the morning off so he could look after Pop for me, because it is simply not possible to look after both of them when Crackle has to be physically restrained. If Pop has an appointment, someone has to look after Crackle, because it is impossible to keep them both out of trouble and talk to the doctor. If I have an appointment, I cannot take them with me. So we use MrFCS’s vacation days for doctors appointments and days when I’m sick.

5) Alternative medicines & treatments “Autism. There’s nothing I can do for you.” — Pediatrician. Oh good. Let’s not work on those symptoms or figure out if there are any underlying issues contributing to the problem. Moron. Our GP gives us 10 minutes per visit. 10. Minutes. Unless the kids have an acute health issue, like a sore throat, this is useless. So we see an ND for most of our health needs. She’s lovely. She’s a DAN! doctor and is well versed in alternative therapies that are science-based (herbal medicines are wonderful). However, she’s not covered by medicare. Nor are the supplements she prescribes covered by our insurance. So that’s a fortune. But she’s done more for the kids than the half-assed ABA has. And she fixed my seizures, something none of my allopathic doctors could manage.

6) Therapy equipment And speaking of the half-assed ABA. You know what else isn’t covered? All the equipment needed to do it. Oh sure, some of it can be claimed under that measly $22,000, but then that cuts into the actual therapy. And again, only some of it is covered. OT equipment such as trampolines are not covered. Computers, iPads and apps are expensive. And then there are the little things that all add up. Like therapy balls, flash cards (OMG. $120 for one, albeit large, set of flash cards?!), PECS binders, printer cartridges, etc. get expensive quickly. Getting set up with equipment in the beginning costs about $700. Without a computer, iPad, trampoline or therapy ball. After that it’s probably a few hundred a year.

7) Couples Therapy I’m only sort of kidding with that one. :) MrFCS and I are okay, but many many families aren’t. The stress of Autism in a family is a recognised cause of marital breakdown. Couples therapy, psychologists, etc. are even covered by Autism funding (if you’re willing to take it out of your kid’s ABA).

So… I’m tempted to put up a donate button. Instead, if you’re so moved, go to CanadaHelps.org and donate to VSCA (Victoria Society for Children with Autism). They provide families with money to spend on respite care. It’s a wonderful group. I’m a member, but I don’t attend meetings. I’d have to hire a babysitter.

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This page contains a single entry by published on November 4, 2011 6:21 PM.

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