Health insurance coverage: key to unlocking Autism’s prison cell

"600 Words by Esther J. Cepeda"

Quick quiz: what do the following all have in common?

Kids so sensitive to lights that Christmas trees are out of the question, toddlers who never learned to turn and look when spoken to, early childhood vaccines (maybe), mystery genes that keep a young brain from creating enough connections to relate to any part of our hectic world (maybe), health insurance companies, and the state of Illinois.

The answer is autism.

That’s autism with a capital "A" for the parents of the 26,000 autistic kids in Illinois who hope state lawmakers will give them a shot at "normalcy" by requiring insurance companies to pay up to $36,000 a year for occupational, physical, speech and behavioral therapies, and psychiatric and psychological services.

We would be joining Louisiana Gov. Bobby Jindal, who signed on the dotted line Wednesday, and seven other states that have passed laws ending insurance discrimination against autistic children by making crucial, life changing early-childhood interventions a covered benefit.

Aside from Dustin Hoffman’s character Raymond in the flick "Rain Man," or the pain it is to be around most autistic kids, people don’t know much about autism.

That they are "a pain" is not a criticism; it’s a tremendous understatement and a tragic reality.

In my few years of being a special ed. teacher I had my share of trying to connect a wide range of autistic kids – from the lively, hair-yanking, high-pitched-screaming ones to the highly-functioning who nevertheless couldn’t bear to wear collared shirts or drink anything warmer or cooler than room temperature – to ABC’s and colors. When it wasn’t physically jarring (I probably fall into the mild Asperger’s spectrum myself) it was completely emotionally draining.

Never mind the kids – the ones with the constantly vacant expressionless gazes who in some cases were mostly "gone" forever – even worse were their parents: an endless parade of lonely souls carrying living the daily grief of an entire life lost to autism. The most broken of them blame themselves for not knowing – or having – enough to get help early.

"With autism, early intervention is the key," said Nicholas Zacny, the 31-year-old parent of five-year-old Fiona Zacny who – thankfully – was diagnosed by her doctor at 18 months and was fortunate enough to have been living in Indiana where, since July 2001, insurance companies have been on the hook to pay for expensive therapies.

"She was diagnosed and got into a program where a behavioral therapist and occupational therapist came into our home once a week. In Illinois they don’t have that sort of thing and insurance tends to be very limited," Nick said.

High controversy swirls around whether autism is caused by early-childhood vaccinations, or can be cured through special diets or by removing heavy metals from kids’ bodies. But there’s no question that providing kids with trained therapists who can teach them how to cope with the too-loud sounds, too-bright lights, and too-scratchy clothes in our endlessly stimulating world works miracles, as was the case for Fiona.

"I would take her to my grandparents’ house and she’d scream and cry was terrified, now when she sees her grandparents she’s like a normal child," Nick told me, adding that if the law passes in Illinois the opportunity to bring Fiona, who currently lives with her mom in Indiana, to live here with him would become a reality, "should the need arise."

Nick constantly promotes two autism advocacy organizations – Autism Speaks and Talk About Curing Autism – who have supported him, Fiona, and the rest of their family throughout her young life. He says you can hit either website to write to your legislators for changes in existing laws or participate by donating time or money.

I say you can make a big difference by just learning a few things. Then, give an understanding smile to the tired-looking family with the wild kid next time one ventures out to your favorite restaurant or store.

- one in every 150 children born in the US (approximately 1 million) have autism

- it receives less than 5% of the research funding of many less prevalent childhood diseases

- "prevalence of autism among Hispanics is lower than non-Hispanic ethnic groups (1 in 300) but is most likely due to under-diagnosis and not that fewer Hispanics have autism," according to Easter Seals

- the length of time from concerns to early intervention for autistic African American children is 20 months – much longer than the 5.2 month national average, according to the National Early Intervention Longitudinal Study.

"If this legislation passes it will take a huge burden off the backs of families," Nick said. "All families need this, it’ll go a long way and people just signing a ballot to support and encourage the legislature to do the right thing will help."

Esther J. Cepeda writes the "600 Words" & "Pregunta del Dia" columns, and is also the Chief Marketing and Communications Officer for the Illinois Student Assistance Commission. Her views and reporting do not necessarily reflect those of ISAC. "600 words" is a registered trademark of EeJayCee, Inc., Copyright 2008. May be reprinted with permission, contact

eejaycee@600words.com

Comments

[frank]

There is a scholarship fund for financially disadvanaged children with autism. the url is http://www.autismgrant.org/

[another ASD Mom]

I disagree with this statement in the article
"1 in 150 children are born with autism"

According to TACA families and surveys - 90% report back that their child developed normally for a period of time, regressed and then later diagnosed with autism. This is different than "born with."

That is why so many families are up in arms. It is very difficult to watch a child regress so severely.

[david durham]

Carlton,

The points you make regarding medical insurance payments are the same ones reactionaries make regarding social security... That the money they put in should be earmarked for themselves alone, earn interest and dividends, and then be available to them after retirement. Indeed, this would be by far the best option for me, as I have paid the maximum into social security for years and years. But this would hardly be the best option for society at large.
What gave rise to this discussion was Esther's point that insurance companies should be required to pay for medical expenses associated with autism. The pro's are obvious but the cons include the fact that this will drive up the cost of doing business in Illinois.
Include me unequivocally as being in favor of insurance plans which cover these expenses. Whether we need a law requiring it is another matter. Make no mistake on this point: The reason insurance companies balk at paying for costs associated with this disease is that the sponsoring companies paying for the insurance have bought a plan that they knew IN ADVANCE would not cover such costs.

[Carlton Blanchard]

David,
True.."unless I got real sick". It's like gambling. Only this time the odds are in my favor. People die of cancer. People die of heart disease. I can reduce my own risk on both these. Although, admittedly illness can still happen. However, the point remains, any individual's chances of catastrophic illness are still very slim. Insurance companies know this and convince us to spread the risk out over lots of people. I'd rather keep my own risk and bank my own money.

I'm 43 years old. I went to the doctor in 1985 for what might have been strep throat... I was actually well before the lab tests came back. And I haven't been to the doctor for any illness since then. It's been 23 years. I'd have a pretty good chunk in my insurance fund by now. So given the choice... Bet on the insurance companies or bet on me. I'll take "me" everytime.

[david durham]

Carlton, again you miss the point on several levels.
First, insurance companies everywhere are happy to cover medical expenses of any sort IF they are paid to do so. If they are not paid to do so, logically, they would prefer not to do so. Simple as that.
Given the obscene profits you state the insurance companies are making, I certainly hope you are long the insurance companies in your portfolio. Oh wait, their profits are off dramatically? What are you reading?
You are right about one thing: You would be better off if your company put the $1600 in a special account for you each month. Then you could decide which bills to pay out of pocket or dip into your fund. This would work quite well unless, uh, you got real sick. Then, of course, you would be out of luck. And, of course,the $1600 wouldn't pay your or anyone else's autism treatment bills.

[Maddy]

I may have to move States! How's the weather in Illinois? Can't go anywhere with rain. There again if the medical insurance would cough up then I could spend money on umbrellas instead, an awful lot of umbrellas.
Cheers

[Carlton Blanchard]

Here's the real problem...insurance companies. It is a pitiful shame that insurance companies will not pay for treatment until the law says they must. (And I hope the State of Illinois sticks it to 'em)

For the most part...Americans who have insurance pay huge sums to these money gobbling monstrosities because we fear getting sick. And then when we do get sick there is an excellent chance that they won't pay for coverage.

And make no mistake about it... they are raking in the dough. For example. I pay $402 per month for family coverage. But wait! that's not all. My employer actual pays 75% of my total insurance cost! In other words... between me and my employer we're sending $1600 per month to the insurance company. That's a whopping $19,200 per year. For the love of pete! Short of cancer there is no way I will ever be able to use this much in health care.

A better plan would be for my employer to put that $1600 in a special account for me each month. Then I can decide which medical bills to pay out of pocket or dip into the fund. As of right now... I'd be about $19,000 ahead for the year (just like last year and the year before and the year before and....) At $19,200 per month, my personal fund would generate $768,000 between age 25 and age 65. Now imagine the peace of mind I would have at age 65 knowing that I had 3/4 of a million bucks to pay for my health care needs. Then Uncle Sam could keep his Medicare money.

Of course, to make this really work...medical providers should be required to offer individuals who are willing to pay CASH the same discount they offer insurance companies. Heck! It used to be that CASH was such a great way to get paid that everybody offered a discount for CASH! Read a hospital bill the next time you're sick. You'll notice that if you pay the bill it'll be like $10,000... but the insurance company get's a discount and only pays $3000. What's the deal?! Did they really get a discount? or was the bill inflated so that you'd feel like you got your money's worth on that $27 bandaid and the $13 jello cup.

Anyway, the real point is, these insurance companies make huge bucks and then balk at paying. Esther... I recall that you wrote in your column in the Sunk-Times (sic) that you had some "suspicious moles" removed. I've been down the "suspicious mole" road myself. And of the 3 moles I had removed, 2 turned out to be harmless. Guess what. My insurance company declined to pay for them. Damn. Almost makes me wish they'd been cancerous. And I know I'm not alone. If a doctor feels the need to run a test on a patient, that should be the final word. It should be considered necessary. And hey.. if it turns out you don't have what they were testing for that should be great news! But that's not how the insurance company sees it because it cuts into their profit. And that's what they're there for. To make a profit.

Thank you Esther for giving me the opportunity to rant. And as always, Great column!