Autism, Aspergers, Rob Gorski,Special Needs Parenting, Reactive Attachment Disorder, Fibromyalgia,

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May 03 2013

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Therapy for kids with Autism, shouldn’t be a privilege, it should be a right

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Autism

by Lost and Tired

May 3, 2013

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In the last day or so alone, Emmett has fallen almost half a dozen times.  He’s fallen up the stairs and down the stairs. 

He tripping over his own feet and doesn’t brace himself for impact, if that makes sense..

One of the things that OT was helping with was this sorta of stuff.  He was working on his coordination and strength.  While he was receiving OT, he was doing much, much better. 

Unfortunately, insurance deemed that he would never make any progress and so they cut him off. 

Since that time, he’s been falling more and more often. 
We have to get him in for a reevaluation and see if we can get him covered once again.

Therapy for kids with Autism, shouldn’t be a privilege, it should be a right.

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15 comments
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yes_thattoo

That whole falling thing really sucks. I still do it, at 20, I just eventually learned to fall properly. (Martial arts instructor was the one who eventually taught me, which is probably cheaper than out of pocket OT for that specific need. And sensory diets are such a good idea.)

KeelyCorinneMiller
KeelyCorinneMiller 1 Like

Since Emmett has Autism, does he not qualify for an IEP? Which would pay for OT, PT, and Speech. My son got Regional Center Services until 3 years of age and then when he transitioned out, the school district gave him an IEP, which covered OT, PT, and speech. All Three of my children receive OT through the school district.

CharlieOz, you sound very cold hearted. Since you do not live in Rob's world, which parallels my families world, you could not possible understand and it sounds like you do not care enough to try. It's either the insurance spends the money now or a lot more later on down the road. You see the now, we see the future.

sophiestrains
sophiestrains

I live in Canada and our healthcare is free (medical). Publicly funded therapies are also free but the waitlists are long (about 18 mos). My advice- create a sensory diet for him yourself. I have 4 children. With the advice of an OT (I'm sure you were provided with recommendations at discharge), books and the internet I have created a basic plan for Sophie which we do for next to free. It involves community rec programs, swimming and lots and lots of park time. Think what you can do, not what you can't do. We are tight financially too, but its amazing how far creative thinking can get you. You can work with him on the stairs, you can make masking tape hopscotch, I don't know what his specific challenges are, but so much is possible once you empower yourself.

CharlieOz like.author.displayName 1 Like

I agree that kids are important and often need intervention, but the big question is: who pays for it?

The doctors and therapists don't work for free. I know your family burns through a lot of medical costs , and I'm sure they're subsidized (unless you're paying out of pocket), but there has to be a point where the people paying the bills say "enough". I don't live in Ohio, but the people paying the costs (the taxpayers) should be assured that their tax dollars see being put to good use. if you don't like the insurance company's decision, you could always get a second job and pay the costs out of pocket. The insurance company can't be expected to cover everything...especially if they don't see improvement.

AMDuser
AMDuser like.author.displayName 1 Like

I heard recently my little sister's kid which is a 3 year old that is on the spectrum was getting OT and there is a place in California that helps families with kids that have a disability"I am Generalizing" said that she is no longer Autistic since she has been going through OT and they are only doing the more severe cases because there funding has not been what it use to be. 

I also hate how places charge SO much for for something that should not be so expensive but now of days it is only about the money and not the person which I hate that. With anything it is about the all mighty dollar. 

azxure like.author.displayName 1 Like

Sorry if this double posts! My kids just lost their subsidized healthcare - and we can't afford out of pocket. My son falls over standing still, trips on flat surfaces, you know. You described it. While I understand why therapy isn't free - I don't want to work for free either! - there needs to be more options put into place.

CharlieOz

How are you working for free? Someone has to pay the doctors. What other options exist that would protect the other ratepayers so that their families don't get shorted when they need life saving treatment and the company ran out of money on OT or PT for a child that fails to respond to treatment?

lostandtired
lostandtired moderator

@CharlieOz I'm gonna have to disagree with you.  The problem is that no insurance company wants to spend the money. Insurance companies are businesses and they are motivated by the bottom line.  

I realize that it's a numbers game but when it's your child that's paying the price, it's an entirely different story.  

We also have to think about the future.  It's gonna be a whole lot cheaper of help the generation of people with Autism, while they're young then it will be to pay the price when the this generation becomes the mainstay of the world. 

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azxure

^ I'm not, and that's what I am saying. I understand people do not want to work for free, as I wouldn't want to either. I am fully out of pocket right now on speech as I no longer have healthcare coverage. I cannot afford OT and PT on top of that and I had to decide what was "most" important. I'd love to see more options available, although I have no suggestions for them.

lostandtired
lostandtired moderator

@azxure you don't have to explain.  I totally understand.  It's different when you're on the receiving end and it's your child paying the price.  The truth is, even if you pay thousands a month for insurance, it likely won't pay anyways because it's tied to an Autism diagnosis. 

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MeaghanGood 1 Like

@CharlieOz Insurance companies are really prejudiced against any kind of mental health coverage, in spite of the fact that it's been established that mental illness and autism are biological illnesses. Emmett actually WAS improving, he just wasn't improving fast enough for them. The insurance company decided that, since Emmett hadn't reached a certain baseline after a certain time period, he never would and there was no point. If Emmett got diagnosed with terminal cancer, the insurance company would probably pay for palliative chemotherapy which doesn't "work" (in terms of making him get better) and isn't expected to. If he got, say, meningitis, and was in the hospital fighting for his life, and he didn't get better quickly, the insurance company wouldn't be allowed to cut off his coverage and kick him out of the hospital.

And Rob really can't get a second job right now, even if he could find one that would be enough to pay for the occupational therapy. (Here's pricing for occupational therapy at Akron General, which is near where Rob lives: http://www.akrongeneral.org/portal/page/portal/AGMC_PAGEGROUP/Price_guide/PRICE_GUIDE3a It's expensive.)  Rob's essentially playing the single-parent role right now, because of Lizze's medical problems. He's got to look after a very sick wife and three special needs children who need full-time care.

MeaghanGood

@CharlieOz I just think insurance companies should provide the same level of mental health coverage as they do for physical health. This would wind up saving money in the long run, because people who are mentally sick tend to neglect their physical health, or abuse substances, and are more likely to come down with expensive and preventable conditions. A good example would be my boyfriend of eleven years. He has severe clinical depression, which goes untreated because he can't afford medications or a psychiatrist. In large part because of the depression, he overeats and doesn't exercise. The result is that he's overweight and has developed diabetes. He's young and the diabetes hasn't gotten too bad yet, but it inevitably will get worse and he may lose his eyesight or need an amputation or something down the line. A lot of times he honestly doesn't care about this because he figures life is worthless anyway. Not saying his obesity and diabetes are entirely the depression's fault, but he would benefit enormously in all spheres if he got mental health treatment.

You can hardly say health insurance companies are going broke right now; they're raking in record profits. And if they want to cut coverage...cut coverage for people over 65 who are the most expensive age group and will die soon anyway. Cut it for people with cirrhosis who continue to drink, or people with lung cancer who continue to smoke. Cut repeated rehab for addicts if it doesn't stick the first time around -- how's that for "failed to show enough improvement to make it worthwhile"? Cut it for people who are diagnosed as terminally ill, since they won't last long. That makes about as much sense as cutting mental health coverage does.

A substantial percentage of Americans, perhaps the majority of them, believe they ARE entitled to affordable health care. I'm one of them. You only need to look at examples like, say, Finland, to see that it's possible.

CharlieOz

I understand what you're saying, and my heart breaks with the situation. The bottom line is mathematics is a cruel decision maker.

While OT is surely providing some benefits, there is a limited amount of funding available. Let's look at all the recent medical expenses his family has gone through... it probably adds up to hundreds of thousands of dollars per year. This is all being subsidized by others who pay into the system.

The insurance companies have to maintain adequate reserves for times when critical care is needed. To make a blanket statement that intervention should be automatic for special needs children doesn't take these issues into consideration, and frankly seems indicative of an entitlement mentality...

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