My son is 8 years old and we was told he is qutistic but we can not get no insurance blue cross denied us because of my sons condition medicade denied us saying we make to mutch money his meds are reminder this is only 1 of his meds witch is almost 600.00 dollars for 30 tab witch is for 1 month... It is really sad because with out his meds he is at harm to him self and others around him any one no advise please we are in fl

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My 3 year old son was diagnosed today by a neurologist with Aspergers syndrome. We have no idea where to go or what to do next. If anyone has any suggestions, please email us.Any advice or insight would be GREATLY appreciated.

Thank you:)

Tanya & Jorge
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Published: Sunday, May 11, 2008

More Help Needed for Autism, Some Say
New insurance law welcome, but watered down from original.
By Robin Williams Adams
THE LEDGER

LAKELAND FLORIDA | New legislation requiring insurance companies to provide some coverage of autism is a positive step, but people with autism and their families need a lot more help, according to two local women who have spent years battling for better autism programs.

"The entire autism community is thrilled there's anything," said Janet Tucker, whose grandson, Lane Melton, 9, has autism.

"Up until this point, anybody's insurance company has pretty much denied them. ... You get no help with anything. It's all out of pocket."

The legislation recognizes the "epidemic proportion" of autism and its effect on families, said State Rep. Dennis Ross, R-Lakeland, who was on an autism committee that studied the issue. It estimates autism affects almost 200,000 Florida children and their families.

But the legislation, passed on the last day of the session, was a compromise bill, which Ross said isn't as comprehensive as the House's original proposal. It requires large-group insurers to offer $36,000 worth of annual medical coverage for autism to children age 5 and under, with a lifetime cap of $200,000 worth of benefits, according to an analysis sent by his office.

I am afraid I spoke to soon about passage. The house ammended the bill, which looks to be a good thing, as the Gardiner amendment will expand coverage to children who receive Medicaid, and Florida KidCare (a low cost state funded HMO).

I wasn't aware that the Senate version did NOT include these kids! This bill has to serve ALL children in Florida with autism, not just the ones lucky enough to have parents with insurance!

Right now, the bill, with it's ammendments, is in SEnator Geller's hands. His office is working on it right now. Not sure if they will pass it on to the Governor with the ammendment, or send it back to the house.

Either way, time is running out! Tomorrow is the last day of session!

I have the local news ready to fight Tallahasee if the bill is not on Governor Crist's desk by tomorrow afternoon. They aren't running the story with my friend yet today, as they are working it as an even bigger story. Their senior investigative reporter is ready to ask our Governor to extend session if they can't get the bill to him tomorrow.

AoA readers, say a BIG prayer for Florida- our kids need it!

Today was a great, yet crazy day! The bill passed the house (117 Yeas 0 Nays!) , after 5 amendments! I was playing email relay with my senator's aide all day trying to make sense of it.

I spoke with the producer of the 6pm news at our local CBS affiliate, and hooked them up with a mom in my group to interview tomorrow. As soon as they have the story on the website, I will link you guys!

Thanks to everyone who took the time to call, and/ or email!

:)

The bill is on today's calendar for vote! We should know by late today, or morning tomorrow!

Say a prayer- there are many children in Florida that need it!

I have heard that it has passed the senate-

http://www.news-press.com/apps/pbcs.dll/article?AID=/20080423/SS08/80423051/1075

I would hope that the managing editor might find this final comment too not objectionable as it in no way personally attacks any individual exercising freedom of speech. (Not actually a comment, but a couple links to establish the verity of my claim)

http://www.autismspeaks.org/press/insurance_legislation_campaign.php

http://www.ventura33.com/clock/

Thank You

For Tracy and Monica,

I really appreciate your efforts to characterize my comments as you have. I sincerely hope that those following this thread are intellectually sound enough to understand that in reality you have absolutely no idea how this bill might affect my own son.

Over the years what exactly has prevented you as a parent from sacrificing forty hours of your own time to attend the forty-hour conference necessary for you to become your child's own applied behaviorial analysis specialist?

By the way, Kerbob, this sentence in the PA bill "All Pennsylvanians will see a reduction in the need for special education programs and a reduction in long term care costs for the most severely impacted."

doesn't mean they're going to kill or abort autistic kids, a "death sentence" in your words. They're talking about the benefits and savings of EARLY INTERVENTION.

You may want to look into some pharmaceuticals yourself there, paranoia man.

For Monica,

First, it's no secret that Autism Speaks is the force behind the creation of these template bills. So please, don't even go there.

Here's the scoop, the insurance companies know that the only doctors that order vitamins, supplements, etc. are doctors that do not engage insurance companies and sign off on group plans as providers.

I am not one hundred percent sure, but it certainly has the look and feel that parent groups pushing these bills for Autism Speaks were promised that organizations like AAP would become engaged in alternative treatments like DAN! making them mainstream course of action. This is perhaps the reason why certain people are mad at the AAP as a bunch of lying, welching weasels.

I guess you've never thrown your phone across the room and cried for hours over the fact that your private insurer exercised the right to deny legitimate claims, limit prescriptions for therapies, etc. etc. etc. None of that is going to change in Florida until just about every single doctor signed on as an insurance group provider agrees to forsake allopathic medicine and work specifically within the framework of a DAN!-type protocol.

I don't see any DAN doctors who will be willing to jump on group insurance plans as providers. Unless something has changed they are mostly cash on the barrel-head, and you fight it out with your plan for reimbursement. And tell me what will weighting down the existing mental health providers with excessive clinical justifications every six months? The insurers have a load of red tape for them laced into this Florida bill.

We learned fast that group insurance didn't give a damn about our son or what those fighting to rehabilitate him thought was medically necessary. They were only interested in cutting their losses by denying coverage, but where or what do they fall back on to justify denying claims? Not a medical board full of diverse thinkers if this bill is passed, but a single person who they undoubtedly intend to influence.

The new insurance bill is simply going to increase premium rates, and perhaps drive a lot of professionals crazy with paperwork which will certainly be used as ammunition to the full advantage of the insurance industry. When premiums are raised all eyes in your workplace are going to be focused on what's causing the rate increases. Our children will become public enemy number one with co-workers within the group. That's because people are basically greedy.

Let's examine the bill in Florida a little more closely...

The bill being pushed provides for "certain" children. That's a reservation. It concedes that this bill is not for ALL ASD children.

The bill limits coverage to three separate and completely distinct forms of the ASD disabilities autistic disorder, Asperger's syndrome, and PDD-NOS. The diagnosis Autism, for example is not even mentioned. According to staff analysis the bill does have provisions for "screening", but the analysis I've read does not even mention coverage for the "official" DSM-IV diagnosis, which was an out-of-pocket expense for us, if I recall.

Oh yeah, the bill may or may not require some families to seek a change in diagnosis to comply with the discriminatory provision against children not among the three covered diagnoses. This will require the family seeking group coverage to make a diagnosis change, BUT it better not be after the ASD child is eight. The reason is because the bill has age discrimination built-in.

Many ASD children do NOT fall in these specific categories. This bill, will, in fact, prohibit any child diagnosed as vaccine-injured, regressive autism, or any other alternative diagnostic term from electively jumping onto group coverage. The actuarial studies that came up with age eight are brutal, aren't they? Age discrimination is unacceptable, except for ASD children.

Let's take a look at limitations in this bill.

Lines 69-76
"However, the coverage required pursuant to subsection may be subject to other general exclusions and limitations of the insurer's policy or plan, including, but not limited to, coordination of benefits, participating provider requirements, restrictions on services provided by family or household members, and utilization review of health care services, including the review of medical necessity, case management, and other managed care provisions."

That's way too much wiggle room for the insurance industry to deny coverage.

For example, if your ASD child qualifies for Med-Waivers, but is among the 17,000 children still on the waiting list, what provision in the above language requires an insurer to pick up the slack? They are pretty good at pointing out potential duplications of benefits. The laws may seem to protect the consumer, but in reality they never do.

Take a look at this from House Staff analysis:

"Since autistic children often require intensive treatment and therapy, current generally applicable limitations for therapies such as speech and occupational therapy and mental health (under which behavioral therapy is included) could be exhausted within the first few months of treatment."

So, your bill is great if our kids were somehow half-autistic. But that's not the case, is it?

Look at it this way. This bill in Florida has nothing to do with improving the coverage for our children. That's because it was never intended to do anything, but benefit the insurance companies.

Autism Speaks made no sense whatsoever in fashioning these bills all across the country except as part of an agreement they entered into relating to the passage of the Combating Autistics Act.

An educated guess as to why these Autism Speaks insurance bills are popping up is related to the level of unreimburseable medical expenses the government is on the hook for in vaccine court. When HHS has to pay out the largest element is the amount of money that a vaccine-injured child requires. So in a truly iron-fisted socialistic way they have put insurance coverage on paper.

Once some form of token insurance is officially on the books they will sever compensation even more severe than they have already with what they've already capped.

Saving the biggest question that a legislator or parent of an affected ASD kid should have...where the hell is section one? All the mark up says for section one is:

Section 1. This act may be cited as the "Window of Opportunity Act."

Excuse me for being ignorant, but I do not see where this bill could allow what you claim with regards to exhonorating the insurance industry, or allowing our kids to be guinea pigs. This is NOT an autism speaks bill, although they are now on board promoting it. Last summer, Senator Gellar's aide emailed me, asking for a cost- benefit analysis on early intervention. He said he tried to contact Autism Speaks, and the ASA in Florida, but had not received a reply.

Of course I had the info, which I promptly emailed to his office, and have been working closely with him, and Senator Fasano on a similar bill, which Fasano droppped in support of this bill. Autism speaks didn't jump on this until recently, as they are too involved planning walks to pay attention to what matters.

At this point, we cannot squabble over what the bill doesn't have, because it DOES have alot of great things, which will help THOUSANDS of kids in Florida.

I am not going to wait until the House and Senate add an experimental drug prohibition to the bill, but I think that is a great idea for a bill to be introduced in next years session, as I am not in favor of medicating my children, nor do I think prenatal screening is the way to go.

The calvalry (in the form of medwaiver) will never arrive in time for Jade. This bill can mean a significant difference in her future.

Hey! The bill is stalled? Yippee!

This Autism Speaks insurance bill totally sucks.

The bill seeks to exonerate the health insurance industry racket for years and years of brutal neglect and discrimination of certain Autistic kids.

This Florida bill needs an experimental drug prohibition to prevent Autism Speaks from conducting liability-free drug experiments. ASD is NOT caused by a SSRI deficiency, BTW.

What's with all the use of "certain" all over the place. Certainly this bill will mean something to "certain" children just as the fact that 17,000 ASD kids are on the Med Waivers waiting list while "certain" ASD kids are provided for. Personally my son has been entitled to benefits since he was three. He's nine now and still waiting for the calvary to arrive.

Many are extremely concerned about any bill about Autism because Autism Speaks demented quest for genetics research is actually going to support prenatal screening. Of course biomakers will lead to abortions.

The following was captured from a form letter crafted by Autism
Speaks for an action alert to push a Pa. Insurance bill. You will
find the "death" sentence for innocent children is the last one in
paragraph five.
-------

We need your help to follow the House's unanimous support of HB 1150
in order to make insurance coverage for autism services a reality.

Senator Jane Orie introduced the Autism Insurance Benefit Resotration
to end the discrimination in insurance coverage against children with
autism and their families, by requiring insurance companies to cover
essential services for individuals with autism.

The House has unanimously passed this critical legislation.

Today, 1 in 150 individuals is diagnosed with autism, making it more
common than pediatric cancer, diabetes, and AIDS combined. When
children with autism receive appropriate services they can make great
gains and improve significantly. Without such services, however, the
prognosis is not as good.

If all interested parties -- parents, insurers, and the Commonwealth -
- share in the cost of care for individuals with autism, then
everyone will see a reduction in overall costs. All Pennsylvanians
will see a reduction in the need for special education programs and a
reduction in long term care costs for the most severely impacted.

The Autism Insurance Benefit Restoration Bill is a common-sense and
fiscally responsible way of helping families to access health care
services that they are currently excluded from receiving due to their
autism diagnosis. I urge you to end this blatant discrimination and
enact this legislation. Thank you for your attention to this critical
issue.

There aren't low cutoffs under this bill for ABA like there are in Texas (where ages 3-5 are eligible). It covers services, including ABA, for persons to 18 years of age. One version in the senate requires a diagnosis by 8, but services are available until 18.

I've sent my e-mails from Plant City, FL! Tracy Stewart, if this bill passes, what is the age limit for services covered? thanks

If you live in Florida, PLEASE send the email to the house reps!!!!!! If you know someone in Florida, please contact them and ask that they contact the house reps!

Jade currently receives no ABA. It is only covered through Medwaiver, and she will wait atleast 5 yrs before we can receive this!

Many of those currently on MedWaiver, and the wait list are adults with mental retardation and dev. delays. They desperately need the MedWaiver to provide assisted living services, job coaches, and continued therapy. Many of these waiting are living in institutions, or with overburdened aging parents. We need to free up the MedWaiver program to increase the independence and inclusion of those who desperately need it!

Florida is facing ENORMOUS budget cuts (no one wants to pay ANY taxes in this state!), and funding for MANY programs has been cut. MedWaiver will receive even LESS funding in the very near future.

Jade needs ABA, not MedWaiver! PLEASE HELP FLORIDA!!!!!!!