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.
-----------------------

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]

ATEC Score, Then and Now

It wasn't until I was reading over an autism grop today that I remembered the ATEC Scoring website and recalled that I had used it once before.

The first time I did the test was June 2004, just days after his doctor suggested autism, and before we did anything. Before diet, chelation, ABA and EI classes.

His overall score was 90 on a scale from 0-180

I just did his ATEC score again today, the first time in a year and a half. It was 54.

WOW!

The most significant jump in his score was his Health/Physical/Behavior, in 2004 it was 36, today it was 18.
The contributing factor to his health was the GFCF diet, the contributing factor to his behavior has been the ABA.

I'll do his ATEC again in June 2006 for a full two year progress report.

Derek Update

Over a year has passed since his diagnosis. Its funny to me, because the diagnosis isn't really an anniversary of denial or sadness, for me its one of victory. Finally, someone could tell me what was wrong with my son, and with a proper diagnosis I could quit chasing the "developmental delay" and all the crazy paths it was taking us.

A few things I don't regret:

- a gluten and casein free diet, wow, I still cannot tell anyone how much this helped Derek. I know many others say it does nothing, but at the time it was the only thing we did for months and it was a night and day difference.

- chelation. We are at a spot right now where his prescriptions have run out, and we cannot afford a doctor nor the prescriptions. I know he needs more, I know it will help him more, as it proved itself in the past.

- ABA. The GFCF diet and chelation brought my little guy out of a deep fog within himself and sensory issues galore. As those issues started to clear out and lesson the ABA was able to come in and teach him everything he needs to know. Knowing where he was, I just never could imagine the ABA helping him from day one. I couldn't imagine trying to do ABA with a 2 year old who was falling asleep every 2-4 hours all day on and off because he was so out of it and so tired and his gut and brain so messed up from the gluten and casein. It would have been a mess.

What I do regret:

- being scared of ABA. After reading a book where a mom outlined her ABA therapy, where she told of the son screaming through sessions and the harshness of making him sit still, I cried. I could never imagine doing that to my child. However, Derek's sessions aren't like that and never have been. If he cries its because he's frustrated, and that happens all day long in and out of sessions. He's cried a couple times because I'm walking away, but nothing more than if I have to leave to get groceries and leave him home with dad. He loves his therapists and they do such an amazing job with him, I really think its all about the personalities of the therapists and how the sessions are done.

- not being more forceful for things. This is a broad statement, but in general I am a pushover. I have had to learn to demand change, demand answers, demand results.

Here we are, just over a year later. Where are we? I'm very happy with where he is, very happy. He speaks in full sentences most of the time now. He's expressing preference for things "I want to pick a DVD, get Tristan?" Double whammy! Wants to pick his own movie out and wants a specific family member to help. And let me tell you, if it doesn't go that way, total meltdown!
We're working on those too, those meltdowns. I'm not too concerned, he is 3 1/2, pretty typical behavior for his age, and if he's still falling a year behind or so, then certainly typical for a 2 1/2 year old to tantrum over everything.

He's been learning "what's next", so now everytime we leave the house he needs a rundown of our stops. Store, then post office, then home. Has to know where the home comes in.

Oh yes, the fun stuff. Potty training. He's ready, mom just needs to get her act together and get a chair and get going. He's stripping everytime he poos and wets a diaper. We have to watch him like a hawk. He is ok with trying to go in the toilet too, the problem is he's too short to reach over the top of the bowl, poor kid! So mommy needs to get a stool he'll feel safe on and a potty seat.

Tonight, instead of calling for me "mmmoooooommy" like he usually does, he said 'hey momma" just like his older sister always says when she talks to me. SO CUTE. And good imitation skills far outside of immediately mimicking someone.

Concerns from myself and therapists right now are almost all social related. I'm thinking of a couple things right now, one is to go to the school district he's in for Early Intervention and see is they have a NT preschool program that he can go to with an aid. (trust me, this is easier said than done) and second would be to pull him from Early Intervention and place him in a Montessori or Waldorf preschool setting. Not sure what I want to do, we need to have a team meeting to discuss it.

My only other concern is food. Trying to get him to try new things. Also I have been trying to get more vitamins into him, and its another no go. This time I got some syrupy sweet juice and mixed them in. Not interested. *sighs* I just know some of the EFA's and B vitamins would help him out a lot. I know they help me.

Something I was thinking about the other day, as a marker in development, a year ago he was still drinking from a bottle. In that year we've ditched the bottles, went to a cup that couldn't have a seal on it because it was too hard for him to suck, to introducing more cups instead of the specific type, to a straw, to now him drinking out of sippy cups with seals, straws and a regular cup! That's progress!

Autism Speaks Update

Ok, proverbial foot in mouth?

Did some more crusing of the Autism Speaks website tonight and came across some more stuff that makes me pleased. In their listing of books and magazines they specifically have Evidence of Harm and What Your Doctor May Not Tell You About Your Children's Vaccines.

Very good reading if you haven't read either. For the skeptic I think author David Kirby really lays it out well for the reader to make an informed decision of what has really happened with our vaccine program. And Dr. Cave's book should be framed in my home, it was the book that Derek's dad read and finally came to understand what I had been saying for years. Its a good book for the reader who likes science on his/her side.

So I'll leave Autism Speaks alone for now, they are doing the best unbiased job they can. Since they are a non profit they do need to keep an arms length from the autism arena.

More on PA and Indiana

Moi ;)
had asked about the Indiana insurance and mentioned about what PA offers.

Here's more on the Indiana mandate

Here's what I know about PA, I'm paraphrasing from an email that I received from a mom who moved from Oregon to PA for services:

- each qualifying ASD child (and other children with disabilities) get a Medicaid card no matter the parents income

- this card gets services at no cost to the parent- in home ABA, a BSC (similar to a consultant or BCBA from what I gathered from the email, I could be wrong), coverage for OTs, PTs and SLPs, zero copay on medical and Rx coverage which includes dental care, WIC, family support services money for other therapies not specifically covered under the above.

- families can get reimbursement on miles to and from the appointments

- school special ed system is very good and follows an ABA model, especially good for younger children


Like I said that's paraphrasing an email I got, another parent's opinion on the services in PA. Since I'm in Oregon I haven't a clue, but it certainly sounds better than what we have. As it is, I have to fight my son's insurance company even if I wanted to have him see an OT, PT or SLP.

Autism Speaks

Ok, I'll admit I'm slightly impressed. I was cynical at first when I heard they merged with NAAR, but I was browsing their site today and they have specific pages set up on autism and vaccines.
Vaccines & Autism

However, on the treatment information page, and even the alternative treatment page, there is no listings for diet, chelation or anything relating to biomedical treatment. Come on Autism Speaks, step up to the plate and offer some balance!

They also link to Unlocking Autism
which is also good, because the parents in the Parent 2 Parent network can offer help to other parents on the entire range of treatment issues.

So for now, I give them a B on their information.

What do you think?

Why Do I Let It Get To Me?

Its funny how simple typed words can just make you wish you could reach through the computer and grab someone by the shoulders and shake them. Hard.

The infamous and sometimes annoying pro-ABA group in my state is on my nerves again. It seems I find more bad than good from this group on a daily basis. The senior members hate the school districts, hate biomedical treatments and even in some cases hate any behavior modification except "true" ABA. Hate is a strong word, so maybe they are just disillusioned?

I say this because a lot of this group has been around 10+ years, and they just don't seem to be up to date on the current happenings within other parts of the community. Because ABA worked for THEIR child and nothing else did, then that MUST be the cure. Wow, had no idea these parents were doctors and scientists. And because a treatment that you feel as a parent has helped your child, notice I said HELP, not CURE, you are a loon for even thinking of it, and God forbid you actually do it.

The backstabbing, back talking and general rudeness of this group shall not be missed by yours truly. The fact that they refuse to be open minded and objective is their downfall. I've NEVER dismissed their opinion to do a certain type of behavior modification for their child, one that they as parents feel is the best for their child. So why should my choices be treated as wrong? Am I not entitled to the same courtesy?

Folks, this is our hugest problem as parents with ASD children. We are fighting each other. I've said this until I'm blue in the face. Why can we not accept the fact how we each choose to treat is our choice. You might not agree with it, or follow that treatment, and that is well within your right as a parent. So PLEASE STOP making other parents feel awful for their choices.

We need to ban together and DEMAND help. We need our insurance companies covering autism and treatments associated with recovery. We need our states to help provide services. Take Pennsylvania, they have a very good start for help within their state. No child is denied and coverage is available quickly, no waiting lists, and is financially reasonable for families. We live in the United States, and one state should not be providing better services than the one next door, we are doing our children a disservice. Insurance companies charging premiums should not be allowed to deny our children coverage. If our children had cancer, leukemia or diabetes we could find help. We could go to any major city and find special treatment centers for them, special programs, and free and low cost services to help those without insurance or low income.

I encourage you to treat your child as you see fit, as their parent. But I also encourage you to start state Parent Action Coalitions to demand services, coverage and help. Demand this from the insurance companies, demand this from your state medical and school services. Stop suing the districts into the ground and instead make a stink and get laws changed. You might get the $50k to run YOUR program but what about the rest of the parents in the district?

For those of you in Oregon, stay tuned. I want to launch a Parent Action group soon. I want us to have a law that requires private and company health insurance to provide behavior modification coverage, like that of Indiana. I want to demand that there isn't thimerosal in vaccines given to children and pregnant women. I want our state to look at the program in PA and start something similar.

Yes, that's asking a lot, but it can be done. It can only be done with parents willing to help, willing to step up and demand this. Lets stop fighting each other, and start fighting the system that is not helping our children.

Toxic Kids

Ever wonder what a toxic kid looks like or what all the hub-bub about these hair tests are?

Here's a couple for you

Test #1 was done October 2004 before any chelation, look at the insanely high levels of aluminum, arsenic and antimony. Don't those sound like great things to be so high in your body?

Test #2 sample was taken March/April 2005 after a few rounds of chelation. Look how the aluminum has gone up. They say its one of the first metals to pull from the body when you start chelation. Antimony is still off the charts too.

If You Can't Say Anything Nice....

Remember that saying mom told us over and over again?

"If you can't say anything nice, don't say anything at all."

I think far too many people have forgotten that old saying. I read an editorial today that just made me shake my head. I really feel Cindy's pain. At best, support among parents is lacking most times. If you take a side, you'll have tons of support. But stand in the middle and make choice on your own, well, you're on your own.

I've thrown almost everything in the book at Derek. We do biomed, diet and now ABA.

I don't see a DAN! doctor but I follow the advice of Andy Cutler in my chelation proceedure and a practitioner he recommended to me. Because of this one message group out there would attack my posts because I dare mention Andy.

I also belong to a local ABA support group that though their name would make you think they are open to all treatments, dare you mention anything but ABA and you are shot down.

You feel really lost and really alone sometimes.

I'm not saying that I have not got support, but the chatter and put downs among groups regarding anothers choice is just outrageous. As long as we as parents put anothers choice down, we'll never get anywhere. Learning to respect anothers choice is key here. And to respect means to keep your mouth closed (or your fingers off the keyboard as the case may be).

Next time you go to put down someone for their choice of just trying to help their child, remember what mom used to say.

Commentary on Current Media

You may have heard or read about the 5 year old boy in PA that died during a chelation treatment. Concerns from family and friends have sparked my commentary on this.


First, I do not fault the parents for their choice of chelation, I do not fault any parent for their choices with dealing with autism. Studies are limited on all accounts, from treatments to therapy and sadly us parents are forging the way to helping our kids. We don't get billions of dollars in funding like juvenile diabetes or leukemia, though 1 in 166 kids are on the spectrum, more kids have autism than juvenile diabetes or leukemia. Its a very sad situation to be in, to loose your child right before your eyes and no one will help you do anything about it because there are no studies or the disease itself is so politically charged. I've never seen a childhood disease be fought about so much instead of people banding together and just try to help.

The media has taken this story and only a few reports have got close to a correct story. They are taking something that the reporter knows nothing about and talking to one sided sources, and not even coming close to doing their homework.

This boy was using an IV chelation method, using a chelator called EDTA. As you all know, I am against IV chelation, I personally feel it is too harsh and too fast. In some cases, and I don't know about this one, but children are given a large dose of the chelator over a 24 hour period to see how much metals are removed from the system. My feeling on this is that this is too much stress on the body, and can leave the metals to retransport themselves to body organs and cause more damage than good.

The media is mainly talking to sources that are against chelation. I've read ONE story out of 15 last night that talked to parents who have an organization that are pro chelation. Just ONE. The next thing the media is reporting incorrectly and I've read this in all articles is that chelators are given under the skin or orally. This is not true, as you know in my case all of Derek's chelation medication is given topically either a cream or drops put on his skin and rubbed in. His chelators are not given in mass but rather in very small doses that require me to give them as often as every 3 hours including through the night. My philosophy is to take the metals out slow and allow the body to recoup each time for at least a week before chelation is done again.

The media also has not mention at least four other chelators that are used, leaving the average reader to think there is only one. The other four commonly used are DMSA, DMPS, ALA and TTFD. All of these can be administered in different methods as well from IV, oral and transdermal (skin).

Lastly, the media has failed to mention that this is the first death that we know of since 1950's using IV chelation for autistic children. I think that with thousands of parents using this method thats a pretty small ratio.

One of Those Three Month Updates

I'm getting good at these ;-)

I would say in a way we've taken the summer off. EI has continued with some time off here and there as per the public school schedule but we've missed chelation schedules since late June. Some due to my sheer tiredness, and some due to traveling.

Speaking of traveling myself, Derek and my oldest took a trip across country to visit a friend in New Jersey for a little over a week. It was quite a trip, a flight to Baltimore, a stay there for 2 days, then a train to Philly, then a flight with a plane change home. Derek did SO well. I think he was the best behaved 3 year old on the flight! People would come by and comment that they had no idea he was even there. It took a lot out of me because I kept him constantly entertained but it was for a few short hours and we made it through.

He slept well, he was a little "stimmy" but it was to be expected. He loved the New Jersey shore and sat with me on the beach with the waves smacking us in the face for nearly an hour. There was a lake by my friend's home and he was thrilled, I think he was a fish in a former life. My friend has a daughter the same age as Derek and since we've been home he asks about his friend and wants to play with her. I printed out some pictures of them and lamenated them for him.

Our in home ABA program started in late June and its going well. We're at 2 hours a day 5 days a week and will work up as he can tolerate it. He's still napping so between EI in the morning and ABA a couple hours in the afternoon he's got a full schedule right now. My therapists are great, I had so many issues finding someone who wasn't flakey. Missed interviews, calling and canceling was just becoming a nightmare. Now we are dealing with insurance, we've finally got approval for ABA coverage but its almost nothing, at just a few hours a week it will be out in 5 months.

Now that trips are over and ABA is going I'm getting back into things, chelation and trying to figure out how to get vitamins into him. I'm also looking into DMG/TMG. Also a second hair test has been done and I'll be sending that in tomorrow. He's still GF/CF and that continues to go well. He's even had a peice of pizza with no ill side effects! He's obviously got some gut healing going on.

My other plan is to start to introduce potty training. At EI they take him to the bathroom with the other kids so he's exposed daily. He also follows us in too, and washes his hands with us, so there is some sense of toilet use and a routine to it. Wish us luck!

One last thing- I've joined an autism blog ring, and I invite you to check out the other blogs.