Wednesday, April 18, 2012

It Costs To Care


Maybe the most frustrating part of… well, living, is money. You need it to survive and for most of us, it seems like you just never have enough of it. The feelings that some people have towards money is the definition of a love-hate relationship. One person can hand you a fifty dollar bill and expect nothing in return while another will give you five bucks and remind you every single day that you owe them.

Now, I love that Bella’s teachers have taken such a liking to her. I get paperwork from them all the time with great advice and different things we can try at home with her. Unfortunately, the last couple months, the paperwork just makes me wanna scream. They send me these amazing ideas, these things that make little blue birds fly around my head tweeting “hallelujah”… that is, until I read the fine print.

Seriously? These organizations are great, but, where do they think we’re hiding our secret money tree?

I know, I know… money is a touchy subject. Not too many people like to talk about it and some people believe that talking about money with your friends is a flat out “no-no”, but whatever. Truth be told, we’re not rich. I know, you’re surprised, but we’re just your average family, with average income.

The common cost of raising a child with autism these days is about $800 more a month than caring for a neuro-typical child. This includes doctor visits, therapies, applied behavior analysis, advanced treatments, medications, travel expenses, direct non-medical and direct medical costs.

These figures were conducted in a study in 2003 so these prices may be much lower than they are today.


Then of course, we move on to the “other” stuff, like the rainbow in our sometimes cloudy sky; the autism therapy dog. The newest advice we received was a day camp that she could attend that uses advanced therapies for her speech issues. Yup, you guessed it, NOT free… of course. A couple grand for four weeks during the summer.

Don’t get me wrong, please, I think that what all of these great people do with kids affected with autism is amazing. They deserve to have their time rewarded. I just wonder how the parents feel when their children have to miss out on these wonderful opportunities because the price is just too high.

I think a bigger question here might also be, “Why doesn’t our health insurance cover SOME of these treatments”. Most of the time, autistic children only get the speech, occupational and physical therapies they need because those services are offered free. But what happens when those free classes are full and there are no spots left. Those parents either have to find a private therapist and pay out of pocket, or their child simply goes without. The average cost of out of pocket therapy? Between $300 and $1500 dollars EACH per month (sometimes per session!). If you have to self-pay for something like applied behavior analysis, it will run you between 20 and 30 thousand dollars a year.

Believe it or not, there are actually a lot of doctors and health care insurances that are raising the prices for autism treatments simply because they know that parents need them. It’s a pretty selfish way to make a few extra dollars, but that’s what happens when something is in demand.

I’ve made dozens of phones calls over the last few weeks, regarding the slight chance that we might be able to figure out how to get Bella a therapy dog. When the question comes up about payment, none of these places every say the words “the dog costs…” it’s always referred to as a “donation”. One woman openly admitted that she prefers to call it a donation so she doesn’t feel bad for taking so much money from families that are desperate for the kind of relief they’d get from having one of these dogs in their home. While I appreciated her honesty, I couldn’t help but feel a little duped. I almost wanted to say “Well, at least it makes you feel better, your “donation” is roughly the down payment on a house!” The ONLY advice they give you is to start fundraising, now! Some people, I was told, can raise the money in a few days. Others who don’t have a large social group of friends and other people willing to help spread the word, take much, much longer.

I’ve talked to our insurance company as well. At first, just to see what WAS covered, but she might as well of emailed me a list of the stuff that wasn’t covered. Basically, besides regular doctor visits, nothing. Anytime Bella has to go to anyone other than our regular doctor, we have to get a referral (which can take between one and two weeks). We’ve had almost 15 medical visits denied by our insurance only to resubmit them, wait a couple more weeks and have them denied again. I begin to wonder what the point of medical insurance really is.

Hopefully, sooner rather than later, insurance companies, doctors, schools, etc. can all catch up. Kids NEED these early interventions. These therapies can literally change the lives of those affected by autism and many other disabilities.

I’m sure if society can argue and make a huge stink about certain semi-cosmetic surgical procedures being covered on even the cheapest of insurances, these life changing treatments can find a place on the agenda.

Right?