Preschooler Abandoned In School Bus

Officials: Special Needs Student Spent Hours Alone

HARTFORD, Conn. -- Authorities are investigating how a young special needs preschooler was abandoned on his school bus for hours. A 3-year-old boy, who school officials said has an autism-related disorder, was supposed to be in classes at Burr Elementary School in Hartford's South End.

Instead, the special needs preschooler was left behind, stranded on a bus by himself for roughly six hours.

Besthoff said the bus driver parked the bus in a lot in Hartford's North End before getting back on the bus for the afternoon route. That's when the driver is said to have heard a scratching sound. The boy's mother told school system officials that the boy, who is not verbal, appears to be OK.

Hartford Mayor Eddie Perez, who is also the chairman of the Board of Education, said he is outraged and is demanding immediate answers. In addition to questioning the bus driver and bus monitor, officials have also questioned the district's policy about students who do not show up for class. Current policy mandates teachers to call home the first day a student is absent.

The city admits that the boy's parents were never contacted when he failed to arrive at school. The city said that teachers may not call home for two or three days of a student not showing up for school. In response, district officials said the policy of teachers calling parents the day a child does not show up for class will be enforced. "This is a failure of the system. We got to look at the system, at the policies we have," Perez said. The contractor that hires special education buses for the city said that the bus driver and bus monitor were suspended without pay pending the results of an investigation that is expected to span several days. "I talked to the superintendent and asked him to make sure that there will be consequences as a result of this," said Perez said.

A number of Hartford schools have started a pilot program that involves an automated phone system to call a child's home each day the child is absent. Perez said he hopes to have the automated system in place for all 42 of the city's schools by Jan. 1.

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Funny how the local ESD can't understand why I refuse to bus Derek and would rather drive him to all ESD related services. A few weeks ago while having lunch with my husband I was flabbergasted as I watched a local school bus pull into the parking lot, it was an obvious special needs bus, with students on board. I watched as the driver stayed at the wheel, but the aide jumped out, and came inside for almost 10 minutes to pick up food and then boarded the bus with it. What if something would have happened in those 10 minutes?

Reading that story above though, makes my stomach turn and my heart ache.

New Blogger

hi,

i just started a new blog tonight as the first step in what promises to be a major (read: long term!) project.

http://cureautism.blogspot.com/

i am going to be writing articles to submit to magazines and newspaper, possible a radio feature for a few NPR stations (if we find the dirt i think we will), and a film documentary. once the information starts to come together we are going to start putting it out there with the film being the last thing that happens.


could you please pass this along via your bulletin since you are have so many myspace friends who are dealing with autism? gathering people's stories is the first step in starting all of this.


many thanks,
jessica davis


------------

I'm adding you to my list Jessica, I wish you much success with this! Its wonderful to know more people on our side.

Joe Barton Autism Parent Meeting - TURNED AWAY BY POLICE!

Thank You Mike!

DAN! Conference Seattle WA, Oct 6-8th 2006

Recovery from autism is no longer just a dream. Thanks to our dedicated physicians and scientists in the DAN™ project, remarkable improvement and frequently even recovery have become commonplace.

More progress has been made in developing effective treatments for autism in the past 3 years than in the past 3 decades! Thanks to the parents, dedicated physicians and research scientists who make up our Defeat Autism Now!™ team, many of whom will be speaking at this conference, recovery from autism is no longer just a dream. Recovery is now a reality for a significant fraction of the population of autistic children, and the proportion who recover is increasing steadily (see our video of recovered kids at www.Autism-RecoveredChildren.com).

When Sidney Baker, MD, Jon Pangborn, PhD and I convened the first DAN!™ Conference (actually, a think-tank with 30 participants) in 1995, we knew we would make progress. But the surge in progress we are now experiencing is truly astonishing.

The autism world has taken notice – our DAN!™ doctors and researchers are now in high demand at non-DAN!™ Conferences in the U.S. and overseas.
Victory over autism is within reach. There are still important gaps in our knowledge, but we are filling them quickly.

– Bernard Rimland, Ph.D., Director, Autism Research Institute


For more information, registration, and schedule please visit HERE

"CAN List"

Last month Derek had an allergy test ran, this was his first we had been able to have done. We knew from trial and error that gluten and casein proteins are not good for his system, and I suspected that the little amounts of soy he does get probably wasn't either.

I certainly wasn't expecting the list of allergens we got back though:

All dairy
Garlic
Cucumber
White Onion
Pumpkin
Radish
Zucchini Squash
Almonds
Amaranth Flour
Kidney beans
Lima beans
Pinto beans
Soy beans (or any soy for that matter)
String beans
Coconut
Lentils
Oats
Green peas
Peanuts
Sesame
Wheat/Grains
Honey
Eggs (white and yolks)


A lot of it was a bit of a shocker. It probably took me a good 24 hours to process this, I felt pretty defeated at the time, that the gluten and casein hadn't been the only key all along. I roamed around the house, digging through kitchen cupboards and the fridge saying "he can't have _____ anymore, he LOVES ____! What am I going to do now?"

So after my little pity party, I realized the list of "can'ts" in my head was the issue, I was focusing on what he can't have anymore. Instead I opened up a notepad and started writing his Can List. I went through his foods and started finding replacements, or finding stuff he currently ate that was still ok. The list keeps growing and I feel much better about this.

I am so thankful too that the two years of gfcf have helped him so much with food, and other treatments and time have made food adversions to taste, texture and color disappear. To replace his peanut butter I bought hazelnut and cashew butters. He also always had honey on his sandwich, which I replaced with three different kinds of pure all fruit spread. He ate a hazelnut and strawberry spread sandwich last night without issue. Then asked for another :)

We'll have some rough days ahead, a few favorites are on that list, and just cannot be replaced. He loves black and pinto beans with rice. No suitable replacement for that. It will work out though, it has in the past.

My advice to parents just starting out on a gfcf (or whatever free) diet : Rotation, Rotation, Rotation! Do not end up in the same spot as we have here. Much of this has come with little rotation. I've been giving honey on his sandwiches for two year, only rarely have I given him jelly. I was too concerned about phenols. He eats a lot of legumes, hence why black beans, pinto beans and peanuts are up there, I used that as a protein source because he ate such little meat. I should have been offering the meat more often than I do. We settled into a food pattern with him, so happy that he would eat more than just the 4 foods he ate two years ago. We worked so hard the first 6-12 months on getting him to try new things that when it seemed like he had a more balanced diet (anything more than milk, yogurt, applesauce, banana and french toast is balanced!) we stopped trying so hard.

Now we know better. The good news is that hopefully we'll be able to add some of these foods back in, slowly, on rotation. I've learned to rotate what he will be eating. Instead of all rice bread, rotate in tapioca based breads too. He's drinking all rice milks, so I'll use a potato based milk as well. I also bought two different pancake mixes last night, one is mostly rice based, the other is corn and tapioca based. I cannot stress this enough, because you don't want to end up here!

Cooking is going to get interesting, seems garlic and onion is in everything! I want to make chicken tonight, and all my spices are blends or have the above in them. Curry powder has onion and red pepper. Lemon pepper has garlic. All the Mrs Dash have garlic or onion in them. I need to get creative (any suggestions from anyone?).

For now I need to go add to the "Can" list, afterall, its so much more important than "can't".

Do You Ever Relax?

Interesting question huh?

I'll explain why I'm asking. Yesterday we decided to head up to the mountain to a beautiful lake that we've camped at in the past. Part of our extended family was up there camping and even took my middle son up with them. We thought we'd stay for a few hours, let Derek play in the lake and just "relax".

I think relax was the furthest thing from my mind, and as we drove home and I listened to my husband rave about how wonderful it was up there, and how he had such a great time, I realized how opposite that was for me.

The mountain and lake are beautiful, and I love camping. I can deal with the dirt, no showers and cooking over a fire just fine. I've resisted camping though since we've had Derek, and the last time we were camping was 5 years ago. I have visions of Derek walking off, drowning in the lake, getting burned on a burner or the camp fire. Just don't see how it would work.

In a way he showed me that camping with him is just not possible. He was happy to play in the lake, he loves water. He tried to go out deeper once, but the lake is full of rounded rocks and makes walking really hard, and since his body isn't the same as other four year olds, it shows. Still he was happy staying by the shore in about 6-8 inches of water, he pretty much played for a couple hours and we had to drag him out.

The entire time though I didn't feel like I could take my eyes off him, just fear of what he could or would do. He did start walking off at one point and we had to coax him back over. He kept picking up large rocks, nearly missing his toes, picking up big sticks and nearly missing people with them.

Then we went back to the family campsite, and this was the defining moment. We were there for only an hour and I was not relaxed at all. There is a 1 year old and 3 year old cousin camping with them, so the camp is semi childproofed. As you sit there and watch Derek and the two cousins you see the differences, and I don't mean speech and communication type, but just the way they handle themselves.

The one year old cousin sat on the ground and ate cookies, hung out pretty much and didn't try to take off, or sat in mom's lap.

The three year old cousin sat in laps of relatives, ate cookies, watermelon and cantalope, and pretty much stayed pretty still for that hour.

Derek though, couldn't sit still, was pacing back and forth between the chairs in a 5x8 area. He was eating cantalope and watermelon, but he had to touch EVERYTHING that he walked by. The sides of the camper, the table, the propane grill that was set up (but not on thankfully). The sides of the camper had little metal vent areas that said "Caution Hot" and he was just running his hands up and down everything.

I just couldn't imagine even one night/day camping with him. I don't see how it would be possible, there would be no way to relax.

I then started thinking about how I am with him versus my older two. We stopped at a little play place in a mall on Saturday, and I don't think my eyes left him, and if I lost sight of him I stood up to find him. With my other two, at age four I probably would have brought a book to read while they were playing!

Its just SO different, just one of those things that I think other parents don't realize and maybe take for granted.

So, my blog friends, Do You Ever Relax?

Mystery Rash Part II

Rash is still here.

Aaaahhhh!! Can you hear the frustration?

Thankfully, not as bad, and not all the time, it seems to be going away. Slowly. I've learned more about hives in the past weeks than I care to know.

Right now it seems to show up when he's active or stressed, but in researching that, those type of hives don't usually occur in young children.
Of course I suppose it could still be some sort of food, but what I don't know, he's back to a very basic gf/cf diet.

On a good note we've put him in a weekly social skills class that his consultant runs, I hope that it will be helpful, of course insurance won't cover it and it requires me to drive an hour away each week for it.

Our EYS start up next week so that routine will be good. That and mommy getting a break, which she intends to haul herself into a gym, so the word "break" is subjective :)

My favorite thing though is his new preschool decided to do a 1.5 hour free play every Friday! That means he'll get to meet and hang out with some of his new classmates, and hopefully I can meet some moms who would be willing to do some playdates.

Lastly, I've decided to give myself another project. Of course I have a ton of free time (don't you all too?) to work on this. I'm going to start a website for Oregon trying to connect all the other websites, support groups, services.....everything.... together. Its going to be an interesting undertaking.

That's all the update for now.

Mystery Rash

On Tuesday Derek started getting this rash all over, arms, legs, trunk, ears, neck...it would just come and go.

First we thought it was from something outside, because it first showed up not long after he was outside playing, but also just after he had ate some pancakes that I made him, which I made a little differently this time. I added in some applesauce that has cinnamon in it and I used canola oil which I had purchased to replace our vegetable oil.

We thought then maybe it was the cinnamon applesauce, that the "natural cinnamon flavoring" might be the cause.

Next we wondered if the benadryl we'd been giving him off and on for the last few days was causing some sort of adverse reaction.

Ah the fun of trying to figure out where this stuff comes from.

We gave him benadryl again Tuesday night, and his skin seemed to calm down, so we figured it was outside that caused.

Wednesday & Thursday it was back again, so now I'm worried it was the benadryl and didn't give him any.

Thankfully this morning we had our first DAN! doctor appointment. I hadn't intended to need to discuss anything, but because of the obvious symptoms we ran through all the things that might be the cause. Of course it all flared up again while we were in the office, which is a good thing, because kids never present in front of doctors when you need them too!

Doctor thinks it could be the canola oil, but to cut out both the newer foods (even though he's had cinnamon before, just not in the applesauce) go back on the benadryl and we're going to see if we can get him to drink some activated charcoal to clean out anything in his system that is causing this reaction. I'm hoping its food/gut related but if not it will be off to his pediatrician to get a handle on this.

Anyway the other point of my post was to share what I found about canola oil, I just figured it was like other oils, but switched to it because the vegetable oil I had was soy based and I try to limit soy as a good percentage of the kids with casein issues also have soy issues.

After reading this article though, I see not all oils are created equal:

The Great Con-ola from Dr Mercola's site.

And to be fair, I found this article at Spectrum Organics explaining their process to make the oil.

The Preschool Ordeal

So I did it. I finally filled out the forms and wrote out the check to put Derek into a typical preschool next fall.

The whole thing has been such an ordeal, first the school district agreed with us at an IEP meeting that he needed to be with more typical kids, he was moving through their program at a quick pace. Then they arranged for me to meet with a district rep to "look" at preschools in the area. After a week of playing phone tag with the lady we finally met one morning. She gives me this poorly designed brochure on how the district can help you with this process and has relationships with preschools in the area.

And her idea of "looking" at preschools? A 3 inch binder that was filled with copies of webpages of the preschools in the area. Um, ok. I'd already done all that, I was looking for you to tell me which schools you support and cover within this district so I can pick one.

"Oh we don't pay for that, its the parent's responsibility"

Whaaaat?

So you tell me my child needs typical peers, this I know, and yet you want to hand me a binder of preschools, a brochure that tells me you help with this process but this isn't part of his IEP, that you won't cover it?

Nope. And even better, on his IEP they wrote in "Parent's haven't picked school yet" where they want a reason for denying the service of putting him into a preschool.

Granted, I know I might have a valid argument here, but I'm so tired of fighting with the district, insurance companies and everything else I gave up on this one. Not only that, I could see them dragging their heels and not wanting to do anything for months, and around here preschools have become really popular and people sign up for them a year in advance! Wasn't like this 5-6 years ago when I put my 10 year old in one.

So most of them were already full as it was, as of last December. One thing I really wanted was a co-op, first so that I could be around the situation to see how he's doing, and second the cost factor. I also just like the idea of community involved in something like this, parents who take the time to be involved in their children's education.

We picked one, and I guess the next decision is him needing an aide. I think he will need one, at least daily for the few couple weeks, then phase out over the next few weeks. I doubt he'll need one all year, or even half a year. I'd really like to put in my own, but I know the district will fight me on that, and the idea of them putting someone in who doesn't even know Derek, that will take two weeks to get to know him, just bothers me. I need someone who knows him ahead of time, what makes him tick, and foresee problems before they are out of hand.

Derek's in a hitting phase, he's been hitting instead of using words, granted this is pretty typical for a 2-3 year old, and he just turned 4, but he's behind socially and I know that. My fear is that little Johnny is going to take a toy away from Derek and instead of Derek saying "hey give that back" or telling someone he'll just hit. Parents and teachers won't see little Johnny taking the toy, they'll just the end result of Derek hitting. Hence Derek gets labeled as a "hitter" and/or "problem child". I need an aid who has all eyes on this and can explain to a teacher or parent helper what just went on.

I'd do it myself but at the same time I don't want Derek to rely on me always being there, I think it might do more harm than good.

Ah, the frustrations!

Little Bit of Fun

From Mom-NOS Blog

5 things in my refrigerator:

- gf/cf chicken nuggets I made but my son won't eat
- lots of fruit to make a fruit salad tomorrow
- leftover chicken
- mostly gone bottle of merlot
- vanilla rice milk


5 things in my closet:

- a Hanna Andersson bag with girls socks that I'll never use
- a diaper bag/back pack that I need to sell
- shoes
- a cute hat from Hanna for Derek that he wore last winter
- stuff that I probably have no idea was in there

5 things in my purse:

- chapstick
- Look Ma New Hands from Bath&Body Works (I love this stuff!)
- cinnamon flavored mints
- not enough cash (ever)
- keys (unless I've lost them again)


5 things in my car:

- XM Radio and all the contraptions to make it work
- wet wipes
- Real Simple magazines to read if I get a free moment (ha!)
- papers I need to throw away
- pair of flip flops


5 friends I'm tagging:
I'll edit as I pick my victims :)
If you want to play let me know and I'll link you here.

Autism Enlightened

Yet another excellent video, detailing children with autism being treated biomedically and parents seeing positive results.

Autism Enlighted

Newest ATEC Score

ATEC website through ARI

A full two years since the first score was given, in those two years:

- 2 years of gf/cf diet (recently limiting soy)
- 9 months of chelation (9 months of td-dmps, 3 months of td-ala)
- 10 months of ABA

Summary Scores (this is the total, not broken down), the scores are 0-180, with 0 being the most typical child, the lower the score, the better.

June 2004 (before any diet/therapy/etc) - 90
December 2005 (1.5 years diet, chelation, aba) - 54
June 2006- 26

In two years to go from moderately on the spectrum to nearly typical, this isn't nature taking its course, this isn't him just getting better, its what we've done to for Derek.

I ponder all the time if we SHOULD be doing all this, there are plenty of parents who just roll with it, let autism be their child. I don't know where their children are on the spectrum, or how they will be as teenagers or adults. Maybe they'll be fine, hold jobs, get married, go on with life. Maybe they won't.

I didn't feel I could take that chance, that by some miracle Derek just got better, maybe he would have. Maybe not.

I KNOW he has opportunity now, at this rate he will be able to live on his own as an adult, hold a job and be part of society. Will he be totally "normal"(define normal)? Don't know. But even if he has quirks, they will be more accepted, easier to ignore and may not be so obvious. I was reading a story today that a mom wrote out about her teenage son, he had been doing well until he hit his teen years and now his quirks and stims have picked up so much he's embarrassed to be in public. I don't want that for my son, if I can help him now, and he has as normal as childhood as possible, then I've done well. He's happy now, when he wasn't before, just sitting there, zoning off into space or running around in circles oblivious to us all, or running up and down a hallway with his hands on the bumpy walls.....that's not childhood.

Now he's playing outside with his siblings, and we're looking at putting him into a preschool this coming fall. I'm looking for playdates, maybe even a short summer camp or activity like a gym or music class for his age. THAT is childhood.

On another good note, his insurance recently has updated to start including 12 visits a year to a naturopath. The better news is that there is a DAN! doctor in our area that is not only an naturopath, but an approved provider on his insurance. For the first time we can finally see a DAN! doctor. I feel like this will be one more piece of our puzzle in place, someone to order and run the right tests, so much that we still need to work on with his diet and skin issues.

Just wanted to let parents know who aren't sure what to do right now, this all does pay off, I know it doesn't work for everyone, but it really does work for far more than not.

Heavy Metals may be Implicated in Autism

Heavy metals may be implicated in autism
30 May 2006


URINE samples from hundreds of French children have yielded evidence for a link between autism and exposure to heavy metals. If validated, the findings might mean some cases of autism could be treated with drugs that purge the body of heavy metals.

Samples from children with autism contained abnormally high levels of a family of proteins called porphyrins, which are precursors in the production of haem, the oxygen-carrying component in haemoglobin. Heavy metals block haem production, causing porphyrins to accumulate in urine. Concentrations of one molecule, coproporphyrin, were 2.6 times as high in urine from children with autism as in controls.

Autism is thought to have a number of unknown genetic and environmental causes. Richard Lathe of Pieta Research in Edinburgh, UK, says he has found one of these factors. "It's highly likely that heavy metals are responsible for childhood autistic disorder in a majority of cases," he claims. The study will appear in Toxicology and Applied Pharmacology.

Lathe says these porphyrin metabolites bind to receptors in the brain and have been linked with epilepsy and autism.

The researchers restored porphyrin concentrations to normal in 12 children by treating them with "chelation" drugs that mop up heavy metals and are then excreted. It is not yet known whether the children's symptoms have eased, but Lathe cites anecdotal reports suggesting the drugs might do some good.

Study Finds MMR Is Linked With Autism

By Lucy Johnston for the Sunday Express
http://www.express.co.uk

Scientists have confirmed the controversial link between MMR and
autism.

The findings corroborate research by Dr Andrew Wakefield, discredited by the Department of Health for suggesting the combined measles, mumps and rubella jab may have contributed to rises in the disorder.
The new study, led by Dr Arthur Krigsman, a child gastroenterologist from New York University School of Medicine, has led to calls for an immediate overhaul of Britain's child vaccination programme.
The research, to be presented at the International Conference for Autism Research in Montreal next week, is still going on but, unusually early findings have been released because of the significance.
The study, which covers 275 children and is being carried out at different medical centres in America, found serious intestinal inflammation in autistic children identical to that described by Dr Wakefield and his colleagues eight years ago.
Gut biopsy tissue from 82 of these children reveals that 85 per cent have evidence of the measles virus in their inflamed intestines. Fourteen have so far been confirmed by more stringent DNA tests.
The news will be a huge embarrassment for the Department of Health which rubbished Dr Wakefield's research on the grounds it was uncorroborated "bad science". Steve Walker, assistant professor at Wake Forest University
Medical Centre, North Carolina, who analysed the gut samples, said the work mirrored Dr Wakefield's study.
"We're very excited by our findings," he said. "Wakefield's study was criticised because it lacked replication. Our goal is to see if the finding was real. Preliminary results show that it was."
Just as Dr Wakefield discovered in his work on the children with a previously unidentified bowel condition, Dr Krigsman's patients had all inexplicably deteriorated, losing language and other skills at around 12 to
18 months of age.
All of the children under both doctors were diagnosed with autism and had come to them seeking help for symptoms of serious digestive problems for which no explanation could be found.
Dr Wakefield, who was forced to resign his job as a gastroenterologist at the Royal Free Hospital in north London after he publicised his theory, welcomed the research. He said: "The Department of Health was able to discredit our research by saying no one else had found similar results to ours but no one else had looked.
"In the light of these results - which are strikingly similar to ours - the Government and its regulators are obliged to act. At this stage it would be prudent and in the best interests of vaccine uptake to make single vaccines available."
Dr Richard Halvorsen, a GP from the Holborn Medical Centre in central London, who is writing a book on the child vaccination programme, said: "This is incredibly powerful evidence confirming the link between autism,
MMR and bowel disease.
"The Government should withdraw MMR until its safety can be proven, particularly as we have safer and effective alternatives."
Jackie Fletcher, founder of Jabs, a support group for parents who believe their children have been damaged by vaccines, said: "This study confirms that the measles virus is present in the guts of these children when it shouldn't be.
"This also shows that the studies, which the Government use as proof of the safety of MMR vaccine, are inadequate. The MMR should be suspended and single jabs reinstated immediately. We cannot take risks with our
children."
A spokeswoman for the Department of Health said it could not comment on the research until it had been presented but she defended the triple jab. "There is no link between autism and the MMR vaccine," she said. "MMR
remains the best form of protection against measles, mumps and rubella."

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My comments:

I am thrilled to see this study replicated and thus far the findings are positive to uphold Dr. Wakefield's work. I've said it many times, and sing the praises of the GFCF diet. This diet was a turning point for Derek, without it he would not be where he's at now. Its difficult to start, but once started and you get going its doable, we're now two years into it and have tried to allow other foods, only to find out that too many give him the dark circles and red cheeks as a physical reaction, but worse by far is the behavioral change.

More on Evidence of Harm movie

Participant Productions

Evidence of Harm

OVERVIEW

Genre: Drama
Status: In Development

CAST & CREW

Producer: Ross Bell

SYNOPSIS

When their children descend into the frightening world of autism, a group of parents discover a disturbing link between thimerosal, a mercury-based preservative found in vaccines, and the steady rise in autism and developmental-based disorders. One tenacious mother, Lyn Redwood, risks her family to battle the FDA, CDC and the American government to increase transparency within the organizations and to increase funding for research, despite efforts from pharmaceutical companies and government officials to suppress evidence and prevent parents from gaining restitution for their children’s conditions. When a midnight rider is added on to the Homeland Security Act of 2002 indemnifying the pharmaceutical companies from retribution, the fight for answers and restitution intensifies; even as Lyn continues to fight the war at home in trying to rescue her son Will from the grips of autism.

From Publisher’s Weekly:

The first serious journalistic account of a highly controversial topic, Kirby's book addresses the front-page question: has a mercury-containing preservative called thimerosal, commonly used in children's vaccines, caused a national epidemic of juvenile autism? Following the development of the debate through the eyes of a handful of impassioned parents who formed the political action group, Safe Minds, Kirby, an experienced writer for the New York Times, crafts an engrossing David and Goliath story from this controversy, one in which the giant is an amalgamation of big government bureaucrats and corporate pharmaceutical lobbyists. Whether the association between thimerosal and autism is real remains to be seen, as Kirby points out. And though Kirby clearly sympathizes with the parents' tragic experience of autism in their families and their inherent desire for justice, and though he occasionally demonstrates a lack of understanding about the politics of scientific publication and the wording of scientific articles, his book remains one of the most thoroughly researched accounts of the thimerosal controversy thus far. This is the book for medical professionals and concerned parents to read. It's accessible in its handling of medical topics and compelling in its recounting of the parents' fight to advance their agenda in the face of both political and scientific roadblocks.

From Generation Rescue - Autism Recovery Stories on Dateline

ALERT- AUTISM RECOVERY STORY ON NATIONAL TV

This Sunday evening, June 4th 2006 (7PM- 9PM est), Dateline NBC has a 12 minute segment featuring Baxter Berle and Joshua Shoemaker, two children on the road to recovery from autism. The segment also includes information about the treatment research of Dr. James Adams. Dr. Adams told people at the Autism One conference he saw the piece and thinks it is fair.

Those involved have been informed by the segment producer that the NBC executives REALLY listen to the letters and emails. After viewing, PLEASE COMMENT so they will consider airing future segments on this important topic at
dateline@msnbc.com.

Please send this far and wide. Thank you.

`Til Death Do Us Part

`Til Death Do Us Part
By JB Handley
www.generationrescue.org
March 2, 2006


I wept when I read RFK Jr's piece yesterday on the Huffington Post.
CDC could have had DTP vaccines in the market as early as 1999 or
2000, cutting mercury levels immediately in vaccines by 40% for
young children. CDC chose not to. I wept for my autistic son, born
in 2002. And, I wept with rage for the unimaginable skin-saving
behavior of a bunch of bureaucrats I've never met who, with their
selfishness, completely altered the course of my son and family's
life.

It's been a long time since I've cried. When my son was diagnosed
with Autism, in July of 2004, I cried for a full month, for hours on
end. Then one day, I just stopped. It wasn't helping him, and there
was work to do. Months later, to my astonishment, he began to get
better. And better. And better. Astonished? Hell, yes! You see, I
put the "M" in mainstream. All this garbage about vaccines and
autism was Hippy stuff, nothing more. But, every time a test came
back it matched what all these DAN! Doctors and Dr. Rimland kept
telling us: my son was very, very sick, and he needed medical
treatment.

It's hard for any rational person to understand how long the CDC
will keep up this charade. I'll tell you what, with friends like Dan
Olmsted, David Kirby, Don & Dierdre Imus, Dan Burton, Dave Weldon,
Carolyn Maloney, and RFK Jr., I know who I'm betting on. Dr. Offit,
you're looking a little lonely these days over there, as you wait to
collect your royalty checks from your new vaccine.

I know this is a very public discussion group. I know "moles" read
what's here to see how we "anti-vaxers" are organizing ourselves. I
thought I'd let you know about who you're up against.

First off, we're parents. And you, in covering your ass, have
kidnapped our children's souls. In the wild, the consequence for
what you've done is obvious, but being civilized, we will get you
with the violence of truth. You see, unlike other body-snatchers,
you've made a number of mistakes and left some very clear calling
cards. You've left the measles virus in our children' guts, you've
left mercury in their brains, and you forgot about the parents who
never vaccinated their children who will willingly help us compare
autism rates. You also never realized, because it's not your
specialty, that autism is not only treatable, its reversible. You
didn't take our children's souls, you just buried them. They're
still there, waiting to come out.

Our kids are getting better. But, you don't want to know this. You
sound an autism ALARM, we're documenting thousands of recoveries,
but you don't ever come and see? We're going to show you anyway.
We're videotaping our kids, we're documenting the excretion of
metals from their delicate little bodies, and we're sharing our
stories with every reporter in the free world. And, they're finally
listening. You know why? Because you snatched some kids in some very
high places. And everyone's a parent first.

The 8 million pound gorilla is awake. We're tens of thousands of
parents unified to get our children medical treatment as soon as
possible and to make sure every parent understands the truth and
understands your treachery. If you sit in your little cubicle,
hoping we'll finally go away because you paid for one more study
trying to refute our position, you are sorely, sorely mistaken. You
will have to kill us all to shut us up. And while you've stood by
and tried to take our children away, it's unlikely you could get us
all before we get you. With truth.

`til death do us part, CDC, `til death do us part.

Portland Trail Blazers Autism Awareness Night

The Blazers have teamed up with ARRO, ASO and FEAT-OR for an autism awareness night.

2nd ANNUAL AUTISM AWARENESS NIGHT

Autism is on the rise in Oregon. This disease affects 1/164 children in our state. One of these children is a part of the Trail Blazers family, son of Vice-President of Corporate Sales, Sarah Mensah. In an effort to promote early detection and intervention for other children, the Trail Blazers are inviting all those who know, care and would like to share their support for someone with Autism, to attend the game.

For each purchased ticket, a portion will go towards ASO, F.E.A.T. & ARRO.

All orders are filled on a first come first serve basis and are subject to availability. No exchanges or refunds.

Questions? Please contact Ryan Williams at 503-963-3982 or e-mail ryan.williams@trailblazers.com

PURCHASE TICKETS TO THIS EVENT HERE

A-CHAMP Forms Insurance Coalition

I'm very excited to read this. This bill is only for NY right now, but as parents we can take this to our states and make a difference. To see something getting national attention, and to see a wide range of groups standing behind A-CHAMP on this is great to see.
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A-CHAMP FORMS COALITION TO REFORM INSURANCE LAWS FOR COVERAGE OF "AUTISM"

To Take Action on NY's Insurance Bill for "Autism" Click Here
For Member Organizations of the NY Autism Health Insurance Coalition Click Here

A-CHAMP supports insurance reform legislation that requires health insurance coverage for treatment of autism spectrum disorder and related conditions. In New York we work with and support a coalition of organizations that advocates for the enactment of Assembly Bill A. 699 and its companion bill in the Senate S. 784. You can obtain a pdf file containing the text of the bill by clicking here and supporting legislative information by clicking here.

We have witnessed too many horror stories where insurance coverage was denied for a person with “autism” because the insurer deemed the treatment to be for a “mental health” condition excluded under a policy of insurance. There exists a paradox in the evolving understanding of the etiology of autism – emerging research shows that the disorder is biologically rooted while the old paradigm in medicine, psychiatry and psychology views autism as a psychiatric disorder defined by the Diagnostic and Statistical Manual of Psychiatric Disorders IV ("DSM IV"). All too often, a biologically based problem related to autistic spectrum disorder is dismissed by health insurers as a mental health disorder and coverage is denied. Therapies utilized to treat autism such as Applied Behavioral Analysis ("ABA") and others are similarly denied coverage. Whether it is for treatment of a physiological condition or for a recognized behavioral intervention, insurers use the “autism” “mental health” exclusion to avoid paying claims.

This practice must end. A-CHAMP's view is that "autism," whether viewed as a mental health disorder or as a biological disorder, warrants insurance coverage. Our position is in accord with the position of leading professional organizations such as the American Psychological Association ("APA"). In testimony before Congress the APA supported enactment of legislation that would mandate coverage for disorders that are currently defined under the DSM-IV or the International Code of Diagnosis 9, such as "autism." In A-CHAMP's view “autism” must be covered, however defined and treated, as long as the treatments have a sound basis in medicine and/or psychology.

The cost of services and supports for individuals with the group of disorders labeled autistic spectrum disorder is large and rapidly growing. Our nation is only beginning to struggle with the looming problem of financing the costs of supports and services for those with disabilities. There is universal agreement that early intervention can reduce the long-term lifetime costs of caring for an individual with a neurodevelopmental disability. Denial of insurance coverage blocks early treatment options for most families. A sound policy mandating insurance payment for autism treatments when children are young and can be helped will reduce the long-term costs that must be borne by society through Medicaid and other government programs.

We at A-CHAMP know the frightening statistics regarding costs of the autism epidemic. Some statistics suggest the costs for lifetime supports for a person with autism will be at least $5 million including a study completed in the United Kingdom several years ago, although we believe the cost will be far greater – exceeding $10 million for a lifetime of care (see an illustration of how these costs are calculated here). For a comprehensive government report grappling with some of these issues see the American Council on Disabilities recent report Long-Term Services and Supports: Financing and Systems Reform for Persons With Disabilities.

Financing health care for people with autism will save money in the long run. More importantly, it will help persons with autism lead better lives. Enactment of a New York bill that ends health insurance discrimination will be a big step forward for all persons with autism.

Statement from Congressman Dan Burton (R - IN)

Recent statement on the floor of the House of Representatives by Congressman Dan Burton (R-IN)

KEEPING MERCURY OUT OF VACCINATIONS
 (House of Representatives - February 16, 2006)

 I think that it is good that they are telling the American people that. But at the same time that that is going on, our health agencies are allowing mercury to be put into almost every vaccine an adult gets and many of the vaccines that children get.

 The interesting thing about it is that it has never been tested. You might say it was tested back in 1929, because they said they tested it on 27 people that had meningitis. All of them died from meningitis, but none of them died from the mercury they were being injected with. But they died anyhow from the meningitis. There wasn't enough time to find out about the neurological problems that might ensue because they were having mercury injected into their bodies.

 We have gone from where 1 in 10,000 children were found to be autistic to one in 166. It is an absolute epidemic. We have also seen a tremendous increase in people that have Alzheimer's and other neurological diseases. Yet we continue to allow our health agencies to allow the pharmaceutical industry to put mercury into the vaccines going into every single human being into this country, and in particular our military personnel overseas.

 It does cause severe neurological problems when it is given over a long period of time. Your brain accumulates this mercury. It doesn't chelate out of the body in a very efficient way. So if you get 10 shots, that mercury stays and keeps building up, and it gets worse and worse as time goes by. The health agencies know this is a problem, and yet we continue to allow mercury to be put into these vaccines.

 It can be done. This Thimerosal is supposedly a preservative. If we go to single shot vials, which don't cost much more than the multi-shot vials being used, you can take the mercury out of them because you don't need that preservative in there, you don't need that kind of purifying agent, if you will, in that vaccine.

Oregonian: Autism in students up sharply

Fewer students are being reported with specific learning disabilities

Thursday, February 16, 2006

STEVEN CARTER

The Oregonian

Students in special education, led by a surge in children with autism, have risen to about 13 percent of public school enrollment in Oregon, new state figures showed Wednesday.

The count of children with disabilities, done each December for the federal government, showed 79,913 between birth and age 21, up nearly 750 from a year earlier.

Children diagnosed with autism, a brain disorder that disrupts a child's communication and social skills, jumped from 5,070 in 2004 to 5,637 in December. Over five years, the number of autistic students rose by 67 percent.

In the same period, Oregon students with specific learning disabilities -- the most common classification in special education -- declined by more than 10 percent, from 33,604 to 30,118.

Educators and researchers cannot fully explain the sharp increase in autism, which also is reported in other states.

"We wish we knew exactly what is going on," said Dr. Bob Nickel, a developmental pediatrician who heads the Autism Training Network at Oregon Health & Science University.

Nickel said one reason is that the autism spectrum has been expanded to include more symptoms and behaviors, and another is that educators and doctors are getting better at diagnosis. The medical and educational definitions of autism are different, but often occur in tandem.

But Nickel said better diagnosis and a wider definition cannot explain the entire increase. Some researchers suspect environmental factors may be a culprit, he said.

"The prevalence in autism has increased around the world," Nickel said. "And the increase has been seen in countries with various levels of environmental concerns. We are a long way from understanding this."

Eric Richards, state director of special education, said Oregon has responded with more training of specialists and has established model classrooms teachers can visit and learn state-of-the-art educational practices for autistic children. The state report also shows that Oregon is educating fewer students with disabilities in separate schools and treatment centers, rather than in regular public school settings.

Five years ago, 2,600 Oregon children with disabilities, including severe emotional problems and brain injuries, were educated in schools or treatment centers exclusively for students with learning or behavior problems. This school year, that figure is 1,400.

Oregon spends about $800 million a year on special education and early intervention with children with disabilities, with about 19 percent of that covered by federal government. School districts get most of their special education money from the state -- $11,000 per student.

School districts are not supposed to get special education money beyond 11 percent of their students, but those with a bigger proportion of special education students can receive a waiver from the state for more money.

The state annually collects information on special education for the U.S. Department of Education, which oversees implementation of the Individuals with Disabilities Education Act. But this is the first time the state has released a general report on special education students and services, and is including information on how they have changed over time.

Nancy Latini, assistant superintendent in the Office of Student Learning, attributes the decline in learning disabilities to finding teaching strategies for kids to keep them out of special education. A child has a specific learning disability if there is a gap between his intellectual ability and his achievement.

Working on early grades

Latini said Oregon educators are getting better at bridging this gap in the early grades. For example, a focused emphasis on reading skills can help a child catch up with peers and avoid being placed in special education.

Latini said the decline in separate schools for special education students is due to recognizing that disabled children belong in their neighborhood schools whenever possible. School districts sometimes save money and have greater educational control if they educate students who have been in outside programs, she said.

Inclusion in the general classroom has been the watchword of the Tigard-Tualatin School District special education program for years.

Five-year-old Suzie Duncan-Winn spends most of her day with her kindergarten pals in Nancy Borman's brightly lit classroom at Mary Woodward Elementary School. On Wednesday, she was designated the "star student," led classmates in counting to 87 and then headed the line as the kids filed out for recess.

It wasn't this way when the blue-eyed girl started last fall. She had trouble relating to other children and would shout and disrupt the classroom at inappropriate moments. She had trouble following directions.

"She has really been a success story," Borman said. "She has lots of friends in the class."

One-on-one

Duncan-Winn leaves Borman's classroom twice a day for 80 minutes of one-on-one instruction that hones her academic and social skills. The school uses STAR, a program from Portland State University, that teaches autistic children in a highly scripted manner.

Another Woodward student, first-grader Marcus Zyweck, 6, needs more time out of his regular classroom for intensive work on his autism.

In a corner of a big room called the Learning Center, Zyweck works one-on-one with special education aide Cynthia Sax on following directions and identifying numbers.

Sax puts a number on paper down in front of him.

"What number is that," she says.

He hesitates, then says, "19."

"Yes! One more number and you get the prize," Sax tells him.

Rewards help children with autism stay focused on tasks, says special education teacher Sandy Collins, and are a major component of the STAR program.

Zyweck is improving. At the first of the year, aides covered the window by the station where he works with Sax, because he would gaze at kids at recess on the playground outside. Now the shield is down and he pays attention to his lessons.

"I am so happy to have found this school," said Marcus' mother, Ana Zyweck.

Betsy Hammond of The Oregonian staff contributed to this report. Steven Carter: 503-221-8521; stevencarter@news.oregonian.com

10 Things The Student with Autism Wishes You Knew

this is such excellent information
if you want to pass this information on, please make sure you include the author's info
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10 Things The Student with Autism Wishes You Knew

By Ellen Notbohm

Author's note: When my article Ten Things Every Child with Autism Wishes You Knew was first published in November 2004, I could scarcely have imagined the response. Reader after reader wrote to tell me that the piece should be required reading for all social service workers, teachers and relatives of children with autism. "Just what my daughter would say if she could," said one mother. "How I wish I had read this five years ago. It took my husband and I such a long time to 'learn' these things," said another. As the responses mounted, I decided that the resonance was coming from the fact that the piece spoke with a child's voice, a voice not heard often enough. There is great need - and I hope, great willingness - to understand the world as special needs children experience it. So the voice of our child returns now to tell us what children with autism wish their teachers knew.

1. Behavior is communication.

All behavior occurs for a reason. It tells you, even when my words can't, how I perceive what is happening around me. Negative behavior interferes with my learning process. But merely
interrupting these behaviors is not enough; teach me to exchange these behaviors with proper alternatives so that real learning can flow.

Start by believing this: I truly do want to learn to interact appropriately. No child wants the negative feedback we get from "bad" behavior. Negative behavior usually means I am overwhelmed by disordered sensory systems, cannot communicate my wants or needs or don't understand what is expected of me. Look beyond the behavior to find the source of my resistance. Keep notes as to what happened immediately before the behavior: people involved, time of day, activities, settings. Over time, a pattern may emerge.

2. Never assume anything.

Without factual backup, an assumption is only a guess. I may not know or understand the rules. I may have heard the instructions but not understood them. Maybe I knew it yesterday but can't retrieve it today. Ask yourself:

Are you sure I really know how to do what is being asked of me? If I suddenly need to run to the bathroom every time I'm asked to do a math sheet, maybe I don't know how or fear my effort will not be good enough. Stick with me through enough repetitions of the task to where I feel competent. I may need more practice to master tasks than other kids.

Are you sure I actually know the rules? Do I understand the reason for the rule (safety, economy, health)? Am I breaking the rule because there is an underlying cause? Maybe I pinched a snack out of my lunch bag early because I was worried about finishing my science project, didn't eat breakfast and am now famished.


3. Look for sensory issues first.

A lot of my resistant behaviors come from sensory discomfort. One example is fluorescent lighting, which has been shown over and over again to be a major problem for children like me.
The hum it produces is very disturbing to my hypersensitive hearing, and the pulsing nature of the light can distort my visual perception, making objects in the room appear to be in constant movement. An incandescent lamp on my desk will reduce the flickering, as will the new, natural light tubes. Or maybe I need to sit closer to you; I don't understand what you are saying because there are too many noises "in between" - that lawnmower outside the window, Jasmine whispering to Tanya, chairs scraping, pencil sharpener grinding.

Ask the school occupational therapist for sensory-friendly ideas for the classroom. It's actually good for all kids, not just me.

4. Provide me a break to allow for self-regulation before I need it.

A quiet, carpeted corner of the room with some pillows, books and headphones allows me a place to go to re-group when I feel overwhelmed, but isn't so far physically removed that I won't be able to rejoin the activity flow of the classroom smoothly.

5. Tell me what you want me to do in the positive rather than the imperative.

"You left a mess by the sink!" is merely a statement of fact to me. I'm not able to infer that what you really mean is "Please rinse out your paint cup and put the paper towels in the trash." Don't make me guess or have to figure out what I should do.

6. Keep your expectations reasonable.

That all-school assembly with hundreds of kids packed into bleachers and some guy droning on about the candy sale is uncomfortable and meaningless to me. Maybe I'd be better off helping the school secretary put together the newsletter.

7. Help me transition between activities.

It takes me a little longer to motor plan moving from one activity to the next. Give me a five-minute warning and a two-minute warning before an activity changes - and build a
few extra minutes in on your end to compensate. A simple clock face or timer on my desk gives me a visual cue as to the time of the next transition and helps me handle it more independently.


8. Don't make a bad situation worse.

I know that even though you are a mature adult, you can sometimes make bad decisions in the heat of the moment. I truly don't mean to melt down, show anger or otherwise disrupt your classroom. You can help me get over it more quickly by not responding with inflammatory behavior of your own. Beware of these responses that prolong rather than resolve a crisis:

_ Raising pitch or volume of your voice. I hear the yelling and shrieking, but not the words.
_ Mocking or mimicking me. Sarcasm, insults or name-calling will not embarrass me out of the behavior.
_ Making unsubstantiated accusations
_ Invoking a double standard
_ Comparing me to a sibling or other student
_ Bringing up previous or unrelated events
_ Lumping me into a general category ("kids like you are all the same")

9. Criticize gently.

Be honest - how good are you at accepting "constructive" criticism? The maturity andself-confidence to be able to do that may be light years beyond my abilities right now. Should you never correct me? Of course not. But do it kindly, so that I actually hear you.

Please! Never, ever try to impose discipline or correction when I am angry, distraught, overstimulated, shut down, anxious or otherwise emotionally unable to interact with you.

Again, remember that I will react as much, if not more, to the qualities of your voice than to the actual words. I will hear the shouting and the annoyance, but I will not understand the words and therefore will not be able to figure out what I did wrong. Speak in low tones and lower your body as well, so that you are communicating on my level rather than
towering over me.

Help me understand the inappropriate behavior in a supportive, problem-solving way rather than punishing or scolding me. Help me pin down the feelings that triggered the behavior. I may say I was angry but maybe I was afraid, frustrated, sad or jealous. Probe beyond my first response.

Practice or role-play - show me-a better way to handle the situation next time. A storyboard, photo essay or social story helps. Expect to role-play lots over time. There are no one-time fixes. And when I do get it right "next time," tell me right away. It helps me if you yourself are modeling proper behavior for responding to criticism.

10. Offer real choices - and only real choices.

Don't offer me a choice or ask a "Do you want...?" question unless are willing to accept no
for an answer. "No" may be my honest answer to "Do you want to read out loud now?" or "Would you like to share paints with William?" It's hard for me to trust you when choices are not really choices at all.

You take for granted the amazing number of choices you have on a daily basis. You constantly choose one option over others knowing that both having choices and being able to choose provides you control over your life and future. For me, choices are much more limited, which is why it can be harder to feel confident about myself. Providing me with frequent choices helps me become more actively engaged in everyday life.

Whenever possible, offer a choice within a 'have-to'. Rather than saying: "Write your name and the date on the top of the page," say: "Would you like to write your name first, or would you like to write the date first?" or "Which would you like to write first, letters or numbers?"
Follow by showing me: "See how Jason is writing his name on his paper?"

Giving me choices helps me learn appropriate behavior, but I also need to understand that there will be times when you can't. When this happens, I won't get as frustrated if I understand why:

"I can't give you a choice in this situation because it is dangerous. You might get hurt."

"I can't give you that choice because it would be bad for Danny" (have negative effect on another child).

"I give you lots of choices but this time it needs to be an adult choice."

The last word: believe. That car guy Henry Ford said, "Whether you think you can or whether you think you can't, you are usually right." Believe that you can make a difference for me. It requires accommodation and adaptation, but autism is an open-ended disability. There are no inherent upper limits on achievement. I can sense far more than I can communicate, and the number one thing I can sense is whether or not you think I "can do it." Expect more and you will get more. Encourage me to be everything I can be, so that I can stay the course long after I've left your classroom.

Ellen Notbohm is author of the new book Ten Things Every Child with Autism Wishes You Knew, winner of iParenting Media's Greatest Products of 2005 Award, and co-author of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine's 2006 Teacher's Choice Award. She can be reached at ellen@thirdvariation.com

Frustrations

There's a bit of a political bent to this, so I'll warn you now.

I simply cannot wrap my head around the availability for services that are out there for children with cancer, leukemia, diabetes and countless other health problems. Not that these children shouldn't get help, but why isn't there also an autism network that is equal to this? Is it because there are so many kids with autism? Is it because of the fighting within the community on how to effectively treat autism?

I don't know the answers.

I do know that I'm frustrated every time I try and figure out how to convince Derek's insurance to cover anything. I'm frustrated that on one side I'm told a state mandate isn't a good idea because it will make insurance rates rise and I won't get much support on the R's side. I'm frustrated that politically every one wants to push autism back and forth on each other. "It's the school's problem!" one side claims. "But its a mental health issue!" is the comeback from the other side.

WHY is my child's future and how he will function a political issue? What is wrong with this picture? I don't see the R's and D's sparring over childhood cancer, or juvenile diabetes. So why is wanting some help such an issue?

I haven't even been able to write about the parity bill meeting, because I walked away shaking my head. What a mess. It would be great of what comes out of it won't allow autism to be excluded, but even then, I don't see it doing a whole world of good.

What we have is a network of DAN! Doctors who can easily charge $200 per hour, not counting labs. I'd say 90% of health insurance companies won't cover a dime of it.

We've got the Pfeiffer Treatment Center back east, once again huge hourly rate and insurance not willing to pay. Pfeiffer does have a financial help program, I'm not sure on the specifications, but I'm willing to guess that an average family making $30-$50k a year won't qualify, and simply cannot afford those sorts of visits.

We also have the Autism Treatment Network that is gearing up. The plan to be at 6 major teaching hospitals across the country, and I'm lucky, very lucky, to have one less than an hour away. I have no idea what will become of the ATN, and if they will be able to have procedures covered by insurance of if they too are just going to become the next expensive treatment to add to the list.

Sometimes, as a parent, you just feel so lost in all of this. You know in your heart if your child had cancer, or leukemia you could find a multitude of places for help, some even covering most or all the costs. You'd find hospitals and resource centers of support with open arms and willing help.

We have the internet, a few conferences each year that also cost, so you need to decide if that plane ticket and conference fee is worth it, or if its better spent on a DAN! visit or a couple weeks of ABA, and not much else. Its sad, and I can only hope that one day, that having a child with autism isn't a political blunder, but a story of hope, help and a road towards recovery.

Mental Health Parity Meeting

First meeting:

The first meeting of the SB 1 Advisory Committee will be Thursday, January 26, 2006 from 1:00 p.m. to 3:00 p.m. The location is Conference room 260 in the Labor and Industry Building at 350 Winter Street NE in Salem.
There is on street parking available with parking meters in front of the building as well as parking meters in the parking garage under the Capitol Mall. The entrance to the Labor and Industry Building is clearly marked in the parking garage.

I will be there!


Also a meeting of note:
(I've been told this would also be a good one to be at, but I cannot come to both in the same week)


SENATE INTERIM COMMITTEE ON
CHILDREN’S HEALTH CARE
Oregon State Capitol
900 Court Street NE, Room 453D, Salem, Oregon 97301
Phone: 503-986-1485

Staff:
Rick Berkobien, Administrator
Patsy Wood, Assistant

Members:
Sen. Laurie Monnes Anderson, Chair
Sen. Jackie Winters, Vice-Chair
Sen. Margaret Carter
Sen. Jeff Kruse
Sen. Bill Morrisette


AGENDA
ISSUED 01/03/06
TUESDAY
Date: January 24, 2006
Time: 8:30 A.M.
Room: HR A

THE HOUSE INTERIM TASK FORCE ON CHILD WELFARE HAS BEEN INVITED TO PARTICIPATE
IN THIS MEETING.

Organizational Meeting

• Adoption of Committee rules
• Review of Committee work plan

Informational Meeting

• Overview of children’s healthcare marketplace
• Lynn Read, Office of Medical Assistance Programs
• Rocky King, Office of Health Care Partnerships
• Joel Ario, Department of Consumer and Business Services
• Robert Nikkel, Office of Mental Health and Addiction Services
• Gina Firman, Association of Oregon Community Mental Health Programs

Children not covered for healthcare and why

• Tina Edlund, Office of Health Policy and Research
• Dr. Jen DeVoe, Office of Health Policy and Research
• Robert Nikkel, Office of Mental Health and Addiction Services
• The importance of outreach, access and keeping children enrolled in health services
• Ellen Pinney, Oregon Covering Kids Initiative
• Jeanny Phillips, Office of Medical Assistance Programs

Lunch

Children’s healthcare legislation in other states

• Dr. Jeanne Smith, Office of Health Policy and Research

Healthcare for all kids

• Kelly Maggi, Oregon Nurses Association
• Martin Taylor, Oregon Nurses Association

Governor’s healthcare plan for children

• Erinn Kelley-Siel, Office of the Governor

Stakeholders’ roles and perspectives on healthcare access for children

• Gretchen Morely, Oregon Health Policy Commission
• Bob DiPrete, Medicaid Advisory Committee
• Gina Firman, Association of Oregon Community Mental Health Programs

Oregon Parents- Call To Action!

Dear Oregon Parents of Autistic Children,

Please forgive me if you receive this email more than once, this is very important time sensitive information that I need to get out.

Senate Bill 1 is in regards the the Mental Health Parity Act. This bill was passed last session, and now committees and meetings are being formed to decided how this bill will read to provide services for those covered under the bill. As of this time, it is unknown if autism will be covered under the Mental Health Parity act. As parents we need to act NOW. The first tentative meeting date is set for the end of January, and if we'd like a parent representative on this committee our voices must be heard.

This morning I spoke with Shelley Bain from the Oregon Insurance Division on the phone. She has heard from many parents of autistic children regarding this bill and is listening to our concerns. She feels it would be important and helpful for a parent to be on this committee and for all of us parents to stay involved and attend these meetings. She has asked that I pass along her information and she wants to hear from us parents. Please, if you can, email her, and let her know that autism needs to be covered, its is going to be a first step of many for us to have some coverage in this state. Shelley prefers email, so that she may print them out and present them to the committee and show how many of us are concerned. If you cannot email, you may also call or fax her, or call her if you have any questions regarding this bill, she is more than happy to answer them. Shelley will also be able to put you on an email list to get information on upcoming dates for the meetings. Meetings that we as parents MUST be at.

Please forward and pass this email on to any parent with an autistic child(ren) in Oregon, we need to act this week, by January 6th.

Shelley's Information:

Shelley D Bain, JD
Senior Policy Analyst,
Oregon Insurance Division
350 Winter St NE Room 440
Salem, Oregon
Email: shelley.d.bain@state.or.us
Phone: 503-947-7216
Fax: 503-378-4351
Mailing Address:
P.O. Box 14480
Salem, OR 97309-0405

Thank You for your help on this!

My contact information also may be passed along:

Stacy Cayce
Unlocking Autism Oregon Rep.
stacyc75@gmail.com


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SB1 text can be found HERE

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More on SB1 from KindTree.org who was also very helpful in getting the word out. Thank You!

Question - Do you know whether the newly passed Mental Health Parity Law is going to have any positive changes for families trying to pay for therapy services for their children with autism?

Regina Frey,
Eugene

Reply from Senator Vicki Walker:

The short answer to the inquiry is that we do not know yet which exact disorders will be covered and which ones will not be covered.

Basically, the law was written more broadly versus some mental health parity bills from other states that specify which type of mental health disorders a parity law will cover (e.g., coverage for schizophrenia only, etc). Given that Oregon's law is more broadly written, it is likely that the vast majority of bona fide mental health disorders will be covered. However, just like there are "limitations and exclusions" in just about all regular health care plans (ie, some physical health treatments or certain physical health conditions are not covered by an insurance plan), there likely will be some allowable mental health limitations and exclusions that insurance companies will be allowed when the new law is implemented.

Starting in 2006, the Insurance Division will begin the rule making process for the new law, perhaps in conjunction with other state agencies such as the office of mental health. Given that this law has pretty broad issues, the division may set up a work group to discuss and start to refine the draft rules before there is a public hearing. If the public is interested, they can request a copy of the draft rules (that the Dept of Human Services will eventually distribute for comments) and they can get a notice of when and where DHS will hold one or more public hearings on the rules. Contact Katy.King@state.or.us to get on the list for the rules and related notices.

Sorry I cannot be more specific. The Insurance Division is very reluctant to say a whole lot more until they go through the rule-making process as they restricted from doing so and may even be liable if they were to advise before the rules are established.

Sen Walker [Walker.Sen@state.or.us]