FW: A-CHAMP Led Coalition Gets Autism Health Insurance Bill Enacted in NY

[Guest guest]

Seriously, GREAT JOB! I LOVE IT! Like I've mentioned to Bob

privately, I think the " county by county " push is brilliant!

What's the status on that strategy??

Kelli

>

> Coalition Organized and Led By A-CHAMP Gets Landmark

> Autism Health Insurance Law Enacted in New York

>

>

> http://www.senatorfuschillo.com/press_archive_story.asp?id=14959

>

> SENATOR FUSCHILLO AND ASSEMBLYWOMAN PHEFFER ANNOUNCE NEW LAW TO

PROTECT

> AUTISM PATIENTS FROM INSURANCE DISCRIMINATION

>

> Local Parent of Autistic Child Praises State Lawmakers For Their

Efforts

>

> Thursday, September 21, 2006

>

> Senator J. Fuschillo, Jr. (8th Senate District), and

Assemblywoman

> Audrey I. Pheffer (23rd Assembly District) today announced the

enactment of

> a new law, which they sponsored, that will help protect autism

patients from

> discrimination by ensuring that services for the treatment of

autism

> spectrum disorder are covered by health insurance.

>

> " It is the essence of discrimination that people with autism were

being

> denied insurance coverage for certain medical treatments that they

would

> otherwise be covered for if they didn¹t have autism, " said Senator

> Fuschillo, a member of the Senate¹s Health Committee. " With the

enactment of

> this new law, New York State can now ensure that coverage is not

denied

> solely because of an autism diagnosis. This is a tremendous

victory for

> autism patients and their families. "

>

> " This new law is a vital first step in promoting awareness and

treatment

> for these disorders. I will continue to work with my colleagues to

examine

> not only insurance coverage issues, but also to look at the

programs

> provided for treatment and find methods to possibly improve access

to and

> content of these programs, " stated Assemblywoman Pheffer.

>

> The new law will help protect autism patients from discrimination

by

> ensuring that services for the treatment of autism spectrum

disorder are

> covered by health insurance. State regulated insurance companies

whose

> policies provide coverage for hospital, surgical, or medical care

will no

> longer to be able to exclude coverage for diagnosis and treatment

of medical

> conditions otherwise covered by the policy solely because the

treatment is

> provided to diagnose or treat autism.

>

> The law also defines autism as a neurobiological disorder instead

of a

> mental health disorder. Some insurance companies denied coverage

for autism

> because they classified it as a mental health disorder instead of

a physical

> condition.

>

> Merrick resident Giangregorio, who is the father of an

autistic

> child, praised the new law. " As a parent I¹m elated and grateful

to Senator

> Fuschillo and Assemblywoman Pheffer for their leadership on the

insurance

> issue. Now a diagnosis of autism can no longer be held against my

son

> or any other person with the diagnosis of autism. I no

longer have

> to here ŒMr. Giangregorio, although your insurance coverage

provides for

> Speech Therapy, your son's therapy will not be covered because

your son has

> a diagnosis of autism.¹ "

>

> Autism is a complex developmental disability that typically

appears during

> the first three years of life. The result of a neurological

disorder that

> affects the functioning of the brain, autism impacts the normal

development

> of the brain in the areas of social interaction and communication

skills.

> Patients typically have difficulties interacting with others,

communicating

> both verbally and non-verbally, and engaging in leisure or play

activities.

>

> While autism spectrum disorders cannot be cured, medical or

psychological

> interventions can help children cope with and overcome autism-

related

> disabilities.

>

> The new law takes effect on January 1, 2007.

>

[Guest guest]

_____

From: A-CHAMP Action Team [mailto:info@...]

Sent: Sunday, September 24, 2006 3:23 PM

Sovern

Subject: A-CHAMP Led Coalition Gets Autism Health Insurance Bill Enacted in

NY

Coalition Organized and Led By A-CHAMP Gets Landmark

Autism Health Insurance Law Enacted in New York

<http://www.a-champ.org/images/a-champ_glove2.jpg>

Thanks to SENATOR FUSCHILLO &

ASSEMBLYWOMAN PHEFFER of NY

Children with autism are routinely and unfairly denied coverage

under their policies of health insurance. Several years ago several NY

parents, including Schwartzman, a longtime trustee of NAAR and

Baumann, founder and director of NYFAC, created and promoted a bill to

ensure that children with autism received parity in the application of their

policies health insurance. The NY Legislature was unresponsive. This year

the A-CHAMP Legislative action team led by Gilmore joined with Marty,

, Mike of A-CHAMP, Petrosino of NSASA, Sally Colletti of

Central NY ASA, Carley of GRASP and many others to form a

statewide coalition of diverse organizations to get the law passed. You can

see a list of some of the organizations that joined this unprecedented

coalition at http://www.a-champ.org/insurancecoalition.html You can obtain

more information about this bill that prohibits discrimination in health

insurance against children with autism at

http://www.a-champ.org/insurance_coverage.html

A-CHAMP and its coalition partners will be working in other states and

nationally to make sure that the insurance laws protect access to health

insurance coverage by children and adults with autism.

To Get More Information About Working on a Health Insurance Bill in Your

State contact Gilmore at yogilmore@... or Sovern at

asovern@...

You can read part of the story in this Long Island Press article:

http://www.senatorfuschillo.com/press_archive_story.asp?id=14959

<http://www.senatorfuschillo.com/press_archive_story.asp?id=14959%20>

SENATOR FUSCHILLO AND ASSEMBLYWOMAN PHEFFER ANNOUNCE NEW LAW TO PROTECT

AUTISM PATIENTS FROM INSURANCE DISCRIMINATION

Local Parent of Autistic Child Praises State Lawmakers For Their Efforts

Thursday, September 21, 2006

Senator J. Fuschillo, Jr. (8th Senate District), and Assemblywoman

Audrey I. Pheffer (23rd Assembly District) today announced the enactment of

a new law, which they sponsored, that will help protect autism patients from

discrimination by ensuring that services for the treatment of autism

spectrum disorder are covered by health insurance.

" It is the essence of discrimination that people with autism were being

denied insurance coverage for certain medical treatments that they would

otherwise be covered for if they didn't have autism, " said Senator

Fuschillo, a member of the Senate's Health Committee. " With the enactment of

this new law, New York State can now ensure that coverage is not denied

solely because of an autism diagnosis. This is a tremendous victory for

autism patients and their families. "

" This new law is a vital first step in promoting awareness and treatment

for these disorders. I will continue to work with my colleagues to examine

not only insurance coverage issues, but also to look at the programs

provided for treatment and find methods to possibly improve access to and

content of these programs, " stated Assemblywoman Pheffer.

The new law will help protect autism patients from discrimination by

ensuring that services for the treatment of autism spectrum disorder are

covered by health insurance. State regulated insurance companies whose

policies provide coverage for hospital, surgical, or medical care will no

longer to be able to exclude coverage for diagnosis and treatment of medical

conditions otherwise covered by the policy solely because the treatment is

provided to diagnose or treat autism.

The law also defines autism as a neurobiological disorder instead of a

mental health disorder. Some insurance companies denied coverage for autism

because they classified it as a mental health disorder instead of a physical

condition.

Merrick resident Giangregorio, who is the father of an autistic

child, praised the new law. " As a parent I'm elated and grateful to Senator

Fuschillo and Assemblywoman Pheffer for their leadership on the insurance

issue. Now a diagnosis of autism can no longer be held against my son

or any other person with the diagnosis of autism. I no longer have

to here 'Mr. Giangregorio, although your insurance coverage provides for

Speech Therapy, your son's therapy will not be covered because your son has

a diagnosis of autism.' "

Autism is a complex developmental disability that typically appears during

the first three years of life. The result of a neurological disorder that

affects the functioning of the brain, autism impacts the normal development

of the brain in the areas of social interaction and communication skills.

Patients typically have difficulties interacting with others, communicating

both verbally and non-verbally, and engaging in leisure or play activities.

While autism spectrum disorders cannot be cured, medical or psychological

interventions can help children cope with and overcome autism-related

disabilities.

The new law takes effect on January 1, 2007.

_____

Message Brought To You By A-CHAMP

Advocates for Children's Health Affected by Mercury Poisoning

See Our Action Alerts. Click the TAKE ACTION

<http://capwiz.com/a-champ/home/%20> ! button

<http://capwiz.com/a-champ/home/%20> http://capwiz.com/a-champ/home/

<http://www.a-champ.org/images/a-champ_glove2.jpg>

<http://www.a-champ.org> www.a-champ.org

<http://capwiz.com/a-champ/home/%20> BE A-CHAMP FOR CHILDREN!

_____

If you no longer wish to receive e-mail from us, please click here

<http://capwiz.com/a-champ/lmx/u/?jobid=75194682 & queueid=886630656> .

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[Guest guest]

_____

From: A-CHAMP Action Team [mailto:info@...]

Sent: Sunday, September 24, 2006 3:23 PM

Sovern

Subject: A-CHAMP Led Coalition Gets Autism Health Insurance Bill Enacted in

NY

Coalition Organized and Led By A-CHAMP Gets Landmark

Autism Health Insurance Law Enacted in New York

<http://www.a-champ.org/images/a-champ_glove2.jpg>

Thanks to SENATOR FUSCHILLO &

ASSEMBLYWOMAN PHEFFER of NY

Children with autism are routinely and unfairly denied coverage

under their policies of health insurance. Several years ago several NY

parents, including Schwartzman, a longtime trustee of NAAR and

Baumann, founder and director of NYFAC, created and promoted a bill to

ensure that children with autism received parity in the application of their

policies health insurance. The NY Legislature was unresponsive. This year

the A-CHAMP Legislative action team led by Gilmore joined with Marty,

, Mike of A-CHAMP, Petrosino of NSASA, Sally Colletti of

Central NY ASA, Carley of GRASP and many others to form a

statewide coalition of diverse organizations to get the law passed. You can

see a list of some of the organizations that joined this unprecedented

coalition at http://www.a-champ.org/insurancecoalition.html You can obtain

more information about this bill that prohibits discrimination in health

insurance against children with autism at

http://www.a-champ.org/insurance_coverage.html

A-CHAMP and its coalition partners will be working in other states and

nationally to make sure that the insurance laws protect access to health

insurance coverage by children and adults with autism.

To Get More Information About Working on a Health Insurance Bill in Your

State contact Gilmore at yogilmore@... or Sovern at

asovern@...

You can read part of the story in this Long Island Press article:

http://www.senatorfuschillo.com/press_archive_story.asp?id=14959

<http://www.senatorfuschillo.com/press_archive_story.asp?id=14959%20>

SENATOR FUSCHILLO AND ASSEMBLYWOMAN PHEFFER ANNOUNCE NEW LAW TO PROTECT

AUTISM PATIENTS FROM INSURANCE DISCRIMINATION

Local Parent of Autistic Child Praises State Lawmakers For Their Efforts

Thursday, September 21, 2006

Senator J. Fuschillo, Jr. (8th Senate District), and Assemblywoman

Audrey I. Pheffer (23rd Assembly District) today announced the enactment of

a new law, which they sponsored, that will help protect autism patients from

discrimination by ensuring that services for the treatment of autism

spectrum disorder are covered by health insurance.

" It is the essence of discrimination that people with autism were being

denied insurance coverage for certain medical treatments that they would

otherwise be covered for if they didn't have autism, " said Senator

Fuschillo, a member of the Senate's Health Committee. " With the enactment of

this new law, New York State can now ensure that coverage is not denied

solely because of an autism diagnosis. This is a tremendous victory for

autism patients and their families. "

" This new law is a vital first step in promoting awareness and treatment

for these disorders. I will continue to work with my colleagues to examine

not only insurance coverage issues, but also to look at the programs

provided for treatment and find methods to possibly improve access to and

content of these programs, " stated Assemblywoman Pheffer.

The new law will help protect autism patients from discrimination by

ensuring that services for the treatment of autism spectrum disorder are

covered by health insurance. State regulated insurance companies whose

policies provide coverage for hospital, surgical, or medical care will no

longer to be able to exclude coverage for diagnosis and treatment of medical

conditions otherwise covered by the policy solely because the treatment is

provided to diagnose or treat autism.

The law also defines autism as a neurobiological disorder instead of a

mental health disorder. Some insurance companies denied coverage for autism

because they classified it as a mental health disorder instead of a physical

condition.

Merrick resident Giangregorio, who is the father of an autistic

child, praised the new law. " As a parent I'm elated and grateful to Senator

Fuschillo and Assemblywoman Pheffer for their leadership on the insurance

issue. Now a diagnosis of autism can no longer be held against my son

or any other person with the diagnosis of autism. I no longer have

to here 'Mr. Giangregorio, although your insurance coverage provides for

Speech Therapy, your son's therapy will not be covered because your son has

a diagnosis of autism.' "

Autism is a complex developmental disability that typically appears during

the first three years of life. The result of a neurological disorder that

affects the functioning of the brain, autism impacts the normal development

of the brain in the areas of social interaction and communication skills.

Patients typically have difficulties interacting with others, communicating

both verbally and non-verbally, and engaging in leisure or play activities.

While autism spectrum disorders cannot be cured, medical or psychological

interventions can help children cope with and overcome autism-related

disabilities.

The new law takes effect on January 1, 2007.

_____

Message Brought To You By A-CHAMP

Advocates for Children's Health Affected by Mercury Poisoning

See Our Action Alerts. Click the TAKE ACTION

<http://capwiz.com/a-champ/home/%20> ! button

<http://capwiz.com/a-champ/home/%20> http://capwiz.com/a-champ/home/

<http://www.a-champ.org/images/a-champ_glove2.jpg>

<http://www.a-champ.org> www.a-champ.org

<http://capwiz.com/a-champ/home/%20> BE A-CHAMP FOR CHILDREN!

_____

If you no longer wish to receive e-mail from us, please click here

<http://capwiz.com/a-champ/lmx/u/?jobid=75194682 & queueid=886630656> .

<http://capwiz.com/img/capwizlogo.gif>

[Guest guest]

In Oregon we got a law passed here too that also takes affect on

January 1, 2007. It will be interesting to see though what happens

with the first dozen claims. We know they will deny any way they can,

the first 5 to 10 families need to be insurance and Autism Savvy and

have all their ducks in a row. Once precedent is set it will be

easier for everyone else. Perhaps in these states we should hand-pick

out test cases to ensure success.

Kendra

[Guest guest]

On top of the many other things we need to do, we need to start

assembling a group of attorneys who will help us deal with the

insurance companies.

And at some point I think we will need to pick an especially

egrgegious company that also has other busines lines of insurance,

life, business, autos, boats, and lauch a national " reciprocity

campaign " i.s. you won't do business with us, we don't do business

with you.

Denying health insurance to people with autism is a violation of basic

civil and human rights. In addition to a " reciprocity campaign " we

should start considering campaigns to have public entities, churches,

and unions with pension funds and other types of investments to shift

their investments to other companies that do not violate the human

rights of our most vulnerable citizens.

Four years in this autism politics game has taught me that you don't

get anything except through the development and the use of power.

Being " nice: gets you exactly nothing.

>

> In Oregon we got a law passed here too that also takes affect on

> January 1, 2007. It will be interesting to see though what happens

> with the first dozen claims. We know they will deny any way they

can,

> the first 5 to 10 families need to be insurance and Autism Savvy and

> have all their ducks in a row. Once precedent is set it will be

> easier for everyone else. Perhaps in these states we should hand-

pick

> out test cases to ensure success.

> Kendra

>

[Guest guest]

If anyone here is charged up on insurance issues, I strongly recommend

you check out Sovern's Insurance list:

autism_insurance_information/

It is over 500 members strong. 's list is part of A-CHAMP's

associated network of grass roots activist lists (which includes this

list, the Schafer Autism Report and others). A-CHAMP doesn't just

yammer on lists, they also flex sh.. into law. Yo, whaddup?

Lenny

got dat rite.

> >

> > In Oregon we got a law passed here too that also takes affect on

> > January 1, 2007. It will be interesting to see though what happens

> > with the first dozen claims. We know they will deny any way they

> can,

> > the first 5 to 10 families need to be insurance and Autism Savvy and

> > have all their ducks in a row. Once precedent is set it will be

> > easier for everyone else. Perhaps in these states we should hand-

> pick

> > out test cases to ensure success.

> > Kendra

> >

>

[Guest guest]

Taking that small bit from 's message and stating that " being

nice CAN get you somewhere " is not based on the facts or the history

of what just transpired in NY state. We do have to go after the

life insurances that denies to an autistic, the churches who don't

want them as members because of behaviors, the boy scouts who tell

us " well do the best you can with the projects for badges " while the

parents are the ones basically doing most of the work for the kids,

or the work place where autistics can't have accomodations so that

they can work and not have to rely on 685.00 a month from SSD. The

remainder of what wrote needs to be quoted as well since he put

it so eloquently: " Denying health insurance to people with autism is

a violation of basic civil and human rights. In addition to

a " reciprocity campaign " we should start considering campaigns to

have public entities, churches, and unions with pension funds and

other types of investments to shift their investments to other

companies that do not violate the human rights of our most

vulnerable citizens. "

Again, we are our children's voices and I certainly am sick, tired

and stressed out from worrying about what kind of a life he will

have once I am gone. In the meantime, if any of you can figure out

a way so we don't die and can take care of our kids forever, call me.

Sally

Very proud to be the 22nd NY district rep for A-Champ who's gettin

er dun!

>

> Four years in this autism politics game has taught me that you

don't

> get anything except through the development and the use of power.

> Being " nice: gets you exactly nothing.

>

[Guest guest]

Sally,

's statement that " being nice gets us exactly nothing " is his

opinion and reflects his personal approach to our issue...nothing

wrong with his choice on what works for him...I was " highlighting "

the fact that maybe others might actually use the " nice " approach

and get somewhere...personally, that's the approach I choose to take

and I know many other parents who share the same approach...

Now, here's the meat of the matter....there SHOULD be no problem

with this except that there IS a problem with this and

unfortunately, MUCH of it is unseen by individuals on this list

because it goes on " behind the scenes " (although, you've sometimes

seen it on this list)....and here it is:

CORE PROBLEM: YOUR APPROACH IS NOT MY APPROACH, THEREFORE I'M RIGHT

AND YOU'RE WRONG.

I think " ruckus and nice " ... " bad cop and good cop " are both

important to getting us " forward movement " and I just wish others

could say what they want to say without having to make the " final

jab " aimed at other individuals/groups approaches....

Kelli

PS....in my e-mail, I was GUESSING (and I clearly stated this) that

individuals from NY most likely approached their state reps. in a

cordial " nice " way to try and get them to sponsor a bill...but

you're telling me I'm incorrect on the facts and and history....I

stand corrected since you live in NY....So then, what actually

happened (if you don't mind sharing)....how the heck did you get

them to sponsor the bill if it wasn't by sitting down and having a

civil (nice) conversation with them in which you asked them to help

your children??

> >

> > Four years in this autism politics game has taught me that you

> don't

> > get anything except through the development and the use of

power.

> > Being " nice: gets you exactly nothing.

> >

>

[Guest guest]

If you're attempt is to get us to give up- we do!!

Re: FW: A-CHAMP Led Coalition Gets Autism Health Insurance Bill Enacted in NY

Sally,'s statement that "being nice gets us exactly nothing" is his opinion and reflects his personal approach to our issue...nothing wrong with his choice on what works for him...I was "highlighting" the fact that maybe others might actually use the "nice" approach and get somewhere...personally, that's the approach I choose to take and I know many other parents who share the same approach...Now, here's the meat of the matter....there SHOULD be no problem with this except that there IS a problem with this and unfortunately, MUCH of it is unseen by individuals on this list because it goes on "behind the scenes" (although, you've sometimes seen it on this list)....and here it is:CORE PROBLEM: YOUR APPROACH IS NOT MY APPROACH, THEREFORE I'M RIGHT AND YOU'RE WRONG.I think "ruckus and nice"..."bad cop and good cop" are both important to getting us "forward movement" and I just wish others could say what they want to say without having to make the "final jab" aimed at other individuals/groups approaches....KelliPS....in my e-mail, I was GUESSING (and I clearly stated this) that individuals from NY most likely approached their state reps. in a cordial "nice" way to try and get them to sponsor a bill...but you're telling me I'm incorrect on the facts and and history....I stand corrected since you live in NY....So then, what actually happened (if you don't mind sharing)....how the heck did you get them to sponsor the bill if it wasn't by sitting down and having a civil (nice) conversation with them in which you asked them to help your children??> > > > Four years in this autism politics game has taught me that you > don't > > get anything except through the development and the use of power. > > Being "nice: gets you exactly nothing.> >>

[Guest guest]

One solution to this problem might be gained by joining the

Developmental Disabilities Councils that exist in every state. The

Developmental Disabilities Act requires that states provide services

and supports that citizens with disabilities need to be full citizens

and reach their potential. I'm certainly not known for being nice

but I just got appointed to this Council through the Governor's

office. It seems that the wording of this act should include medical

treatment that can improve our kids' conditions so that's what I will

be pushing for. Getting appointed to these Councils can give us a

voice that is more difficult to ignore. It's a chance to educate the

other well intentioned people on these Councils who don't have a clue

what's really going on with Autism and Mercury .

> >

> > Four years in this autism politics game has taught me that you

> don't

> > get anything except through the development and the use of power.

> > Being " nice: gets you exactly nothing.

> >

>

[Guest guest]

Sayyyy " uncle " .... ;-)

> > >

> > > Four years in this autism politics game has taught me that

you

> > don't

> > > get anything except through the development and the use of

> power.

> > > Being " nice: gets you exactly nothing.

> > >

> >

>

[Guest guest]

Thanks for the clarification ....yeah, your meetings with

the politicans fall under " nice " (good cop) in my book....

The recent ACIP meeting had " both approaches " covered: outside rally

(bad cop)....inside parent participation (good cop)....both groups

being " assertive " -- just in different ways....

one " ruckus " ....one " nice " ....both important....

Kelli

>

> Speaking from someone who sat in the offices (among others) along

with

> Gilmore in Albany for 2 different bills (insurance and thimerosal)

and other

> bills in the county gov't- the main objective was to educate.

Most of the

> time it was face to face conversations with the public officials

and their

> staff or speaking at a hearing. This was always done in a

respectful way.

> And the staffers were many times grateful that we were there.

Some even

> said they hoped we would come back in the future.

>

> This word " nice " that is being thrown around is confusing.

and gang

> were NICE to the politicians. We weren't NICE to the insurance

companies or

> AAP. Does that mean we screamed in their faces or called them

names? NO.

> It just meant that we stood up to them. Just like a woman is

called a

> " bitch " if she stands up for herself or is assertive.

>

> always plays by the rules, is respectful, smart, truthful,

etc. That

> is why I'm always there to back him up (I also would never want to

go

> against the guy in a debate). I don't think was using the

word " nice "

> in the context of communication. But, more like people who

are " nice " many

> times are doormats and won't stand up and fight.

>

> Kelli- I think you are correct. Things aren't so black and

white " you're

> either for us or against us " . But, I think part of this

discussion is a

> miscommunication (which is common when emailing).

>

> We all have our own styles, be it driving, playing piano, singing

or dealing

> with autism issues. But, I think many of us are on the same team

and REALLY

> have the same goals. We shouldn't nickpick the details to death.

>

> Also, different parts of the US demand different approaches. Like

here on

> LI you can't go to the education dept. and say " you never do

anything for

> us " because preschoolers get all the services they need around

here. In

> other parts of the country that is not true. A lot has to do with

the

> makeup of the gov't (D vs R), how many of the gov't officials have

children

> with autism, and the culture. I'm sure things are very different

in NY than

> NC (from my experience of living in VA for 6 years). Nice in NY

is giving

> someone their change. Nice in NC is saying " thank you very much,

y'all have

> a nice day " while handing them their change.

>

> We are getting things done here in NY on many levels. Call us

whatever you

> want " nice " " productive " " crazy " LOL I'm proud of the job

EVERYONE has

> done (including those not in NY). Let's keep on going and don't

worry about

> labels.

>

>

> NAALI

>

[Guest guest]

I can tell you what we did in Oregon and we weren't exactly nice,

but diplomatic.

In Oregon the state legislature passed the " Mental Health and

Substance Abuse Parity Act " . We were not involved in that bill,

proposing or pushing it because we object to our children being

labeled as mentally ill. But once the bill passed we decided that

insurance coverage was insurance coverage and as long as Autism is

listed under the DSM-IV criteria we were going to ensure that Autism

was not excluded from the bill's language.

In January of 2006 the congressionally appointed committee of

insurance company reps along with certain organizational and

business leaders were pulled together to formulate the language of

the bill. This is where it gets interesting. We sent out a call to

parents in Oregon as well as experts in educational issues, medical

experts, ABA, Autism Non-Profits etc. to attend meetings. From the

beginning it was apparent that the insurance companies had come

ready to exclude Autism completely from the bill. They were loaded

with misinformation, telling the committeem " there are no treatments

or cure - it is like Downs Syndrome, there is nothing that can be

done for these kids " .

We campaigned and the committee was so inundated by emails and

letters from families that they couldn't even function. They

decided to have a special meeting just to address Autism. They set

up a four hour meeting with invited speakers for two hours and then

a public comment period for two hours. There were members of that

committee that were definitely on our side and working inside on our

behalf. We brought in experts who testified on new studies showing

Mental Retardation is no more prevelant in Autism than in the

general population, that ABA can change outcomes, that biomedical

interventions are changing outcomes. Then myself and another mother

testified about recovering our children and turned the insurance

reps into big fat liars. Not only did I testify, so did my daughter

and when she was done with them there was not a dry eye in the

house. She told them that other kids with Autism just need a little

help and a chance like she got. She told them how now she likes to

ski and dance and that she loves school and is an excellent speller.

I stood up and told them their life wouldn't be worth a nickel when

the state legislators discovered that they included drug addiction

therapies for people that made some bad choices in their life, but

just need a 2nd chance, yet excluded innocent children who have

never even had a first chance at a life at all. We were pretty

blunt that if Autism was excluded from the bill that we would

petition for a stand-alone Autism Bill mandating coverage and what

it would cover, and the insurance companies would really hate that

bill and its language.

The biggest issues that arose were the insurance companies argument

that Autism is an eductional issue, not a medical one, and that some

providers such as ABA providers are not certified in any way by the

state of Oregon, so how to police who is a valid provider. The

bottom line was if you get a licensed physician to say it

is " Medically Necessary " they will have to cover it. Now comes the

educating of medical providers in Oregon. Which doesn't look good.

Cavemen would be an appropriate description. A new family was

recently told by a local physician, " ABA, Never heard of it, and if

it was anything I would have heard of it. Just leave him alone, let

him be a kid and don't throw your money down a drain " . What a

Moron. I heard that also, " Do you ever just let her be a kid " . Oh

you mean the rocking, flapping, head banging, hair pulling,

screaming, or isolation I get if I leave her completely alone. I'll

take stimulation of some sort anyday. If left alone our children

don't act like a kid, so I couldn't just let her be a kid. But

because of all that early work, now I can. The issue now may not be

the insurance coverage but getting doctors in Oregon to say any

treatment is medically necessary for Autism, when apparently they

don't know anything about it. There are lots of issues to be dealt

with, this is just one of them.

Kendra

[Guest guest]

I think one of the goals of everybody on this list and the many

organizations working to affect change in regard to autism is to

develop the power to make change possible.

I am not saying we should be rude or nasty to people in power, far

from it, but when you ask a state committtee chair to do something,

politely, that they don't want to do, which is usually the case with

us, and then you can get 500 phonecalls and faxes into their office

in a day, which is what we had to do to get the NY thimerosal and

insurance bills passed, then you have power. Then they treat you

differently, that's when they stop interfering with your bills.

I am the person behind the NY thimerosal and insurance bills, I got

the thimerosal bill introduced and put together the coalition that

got the insurance bill passed after being moribund for four years.

and that's how it happened. In addition to that we had extensive

coalitions from all over the state, every chapter of ASA, NYFAC,

NAA, SM, GR, AS and many others with ACHAMP coordinating it. So ,

again, when state committee chairs try to block our legislation and

they have colleagues from 15 different counties calling them up and

saying they are getting lots of calls from people back home that is

power as well.

We don't have money to influence politicians, but we have dedication

and numbers, we need to organize ourselves as a community to exert

political power at key junctures in the legisaltive process. I have

yet to see anything else that produces results for our community.

Gilmore

>

> Four years in this autism politics game has taught me that you

don't

> get anything except through the development and the use of power.

> Being " nice: gets you exactly nothing.

>

[Guest guest]

I'm beyond uncle-

Please lobotomize me to make it stop.

Re: FW: A-CHAMP Led Coalition Gets Autism Health Insurance Bill Enacted in NY

Sayyyy "uncle".... ;-)> > > > > > Four years in this autism politics game has taught me that you > > don't > > > get anything except through the development and the use of > power. > > > Being "nice: gets you exactly nothing.> > >> >>

[Guest guest]

Now I know how you win.

And it's just not fair!!!

LOL!

Re: FW: A-CHAMP Led Coalition Gets Autism Health Insurance Bill Enacted in NY

Sayyyy "uncle".... ;-)> > > > > > Four years in this autism politics game has taught me that you > > don't > > > get anything except through the development and the use of > power. > > > Being "nice: gets you exactly nothing.> > >> >>

[Guest guest]

,

Thanks for the clarification....seems like you used both approaches

(good cop/bad cop) in your state efforts....and were very

successful....

On the national front, I just don't think 500 people sending in

faxes/phone calls are enough to make " movement " (IN AND OF ITSELF)

on ANY issue....

Case in point: Last week, I was speaking with a " high ranking

official " who told me that UA's campaign to " flood the White House "

with calls/faxes last summer probably SHOULD HAVE produced a direct

meeting with the White House staff....but it didn't.....and

remember, there were enough faxes/calls to literally " shut down " the

White House phone lines for the day....

So, no....I don't think we are in any " position " to rely solely

on " muscle flexing " at this point in time....and recognizing that

the " power " at THIS POINT IN TIME, is in the " other court " requires

us to be open (as a community) to accept that maybe the strategy of

some groups to " sit at the table " in order to make forward progress

might not be such a " bad approach " after all....

Kelli

> >

> > Four years in this autism politics game has taught me that you

> don't

> > get anything except through the development and the use of

power.

> > Being " nice: gets you exactly nothing.

> >

>

[Guest guest]

Actually it did. I know met with

the WH staff including Andy Card after that fax-a-thon.

From: EOHarm [mailto:EOHarm ] On Behalf Of seekingtruth4miles

Sent: Tuesday, September 26, 2006

6:51 PM

EOHarm

Subject: Re: FW: A-CHAMP Led Coalition Gets Autism Health Insurance

Bill Enacted in NY

,

Thanks for the clarification....seems like you used both approaches

(good cop/bad cop) in your state efforts....and were very

successful....

On the national front, I just don't think 500 people sending in

faxes/phone calls are enough to make " movement " (IN AND OF ITSELF)

on ANY issue....

Case in point: Last week, I was speaking with a " high ranking

official " who told me that UA's campaign to " flood the White

House "

with calls/faxes last summer probably SHOULD HAVE produced a direct

meeting with the White House staff....but it didn't.....and

remember, there were enough faxes/calls to literally " shut down " the

White House phone lines for the day....

So, no....I don't think we are in any " position " to rely solely

on " muscle flexing " at this point in time....and recognizing that

the " power " at THIS POINT IN TIME, is in the " other court "

requires

us to be open (as a community) to accept that maybe the strategy of

some groups to " sit at the table " in order to make forward progress

might not be such a " bad approach " after all....

Kelli

> >

> > Four years in this autism politics game has taught me that you

> don't

> > get anything except through the development and the use of

power.

> > Being " nice: gets you exactly nothing.

> >

>

[Guest guest]

Gosh Kendra, I'm right with you. I have said FOR YEARS that of all

the parties to blame in this fiasco, the most culpable of all are the

MEDICAL DOCTORS. I'm the one with 4 doctors in my immediate family,

and several in the pharma industry. And they all say that in order

to get coverage, the thing that gets the ball rolling is to have

either pharma lobbyists pushing coverage OR TO HAVE BEST PRACTICE

GUIDELINES IN PLACE for whatever you need covered.

We need to get all over the AAP to issue best practice guidelines to

evaluate these children medically (immune and gastro

workups/treatments) and to write a prescription for 40 hours/week of

intensive behavioral interventions (and I don't care what kind-ABA,

Greenspan, RDI, speech, OT, etc, and no you don't have to actually

GET all the services prescribed if you think that is too much).

If these guidelines were written, and the scripts were getting

written, insurance would fight back hard but lose. Period.

The AAP sent out an " autism alarm " 5 years ago to its members,

encouraging early screening and early intervention. Why that hasn't

translated into screening for all 18 month old kids and scripts for

behavioral therapy (at least) I do not understand. We as a society

DO KNOW HOW TO ACT QUICKLY. Within 48 hours of messages hitting the

mass media, our entire country, right down to the least literate

among us, can throw away all our spinach or toss all the liquids in

our carry-on luggage. Yet the pediatricians need years, maybe even

decades, to address the greatest current children's health crisis.

Truly pathetic.

Let's go talk to the doctors--nicely, as per Kelli Ann, and keeping

things very " science-based " . Let's get Lovaas and Martha Herbert to

address the AAP convention, or maybe the developmental ped. or

neurology professional organizations, which may be less hostile.

Let's write the best practice guidelines ourselves in advance, so

they can't relegate that task to committees and task forces which

meet for years on end. Let's refuse to take no for an answer a la

Gilmore if we get stonewalled.

I would be willing to be part of an effort to get something like this

organized.

Jenna

>

> I can tell you what we did in Oregon and we weren't exactly nice,

> but diplomatic.

> In Oregon the state legislature passed the " Mental Health and

> Substance Abuse Parity Act " . We were not involved in that bill,

> proposing or pushing it because we object to our children being

> labeled as mentally ill. But once the bill passed we decided that

> insurance coverage was insurance coverage and as long as Autism is

> listed under the DSM-IV criteria we were going to ensure that

Autism

> was not excluded from the bill's language.

>

> In January of 2006 the congressionally appointed committee of

> insurance company reps along with certain organizational and

> business leaders were pulled together to formulate the language of

> the bill. This is where it gets interesting. We sent out a call

to

> parents in Oregon as well as experts in educational issues, medical

> experts, ABA, Autism Non-Profits etc. to attend meetings. From the

> beginning it was apparent that the insurance companies had come

> ready to exclude Autism completely from the bill. They were loaded

> with misinformation, telling the committeem " there are no

treatments

> or cure - it is like Downs Syndrome, there is nothing that can be

> done for these kids " .

>

> We campaigned and the committee was so inundated by emails and

> letters from families that they couldn't even function. They

> decided to have a special meeting just to address Autism. They set

> up a four hour meeting with invited speakers for two hours and then

> a public comment period for two hours. There were members of that

> committee that were definitely on our side and working inside on

our

> behalf. We brought in experts who testified on new studies showing

> Mental Retardation is no more prevelant in Autism than in the

> general population, that ABA can change outcomes, that biomedical

> interventions are changing outcomes. Then myself and another

mother

> testified about recovering our children and turned the insurance

> reps into big fat liars. Not only did I testify, so did my

daughter

> and when she was done with them there was not a dry eye in the

> house. She told them that other kids with Autism just need a

little

> help and a chance like she got. She told them how now she likes to

> ski and dance and that she loves school and is an excellent speller.

>

> I stood up and told them their life wouldn't be worth a nickel when

> the state legislators discovered that they included drug addiction

> therapies for people that made some bad choices in their life, but

> just need a 2nd chance, yet excluded innocent children who have

> never even had a first chance at a life at all. We were pretty

> blunt that if Autism was excluded from the bill that we would

> petition for a stand-alone Autism Bill mandating coverage and what

> it would cover, and the insurance companies would really hate that

> bill and its language.

>

> The biggest issues that arose were the insurance companies argument

> that Autism is an eductional issue, not a medical one, and that

some

> providers such as ABA providers are not certified in any way by the

> state of Oregon, so how to police who is a valid provider. The

> bottom line was if you get a licensed physician to say it

> is " Medically Necessary " they will have to cover it. Now comes the

> educating of medical providers in Oregon. Which doesn't look

good.

> Cavemen would be an appropriate description. A new family was

> recently told by a local physician, " ABA, Never heard of it, and if

> it was anything I would have heard of it. Just leave him alone,

let

> him be a kid and don't throw your money down a drain " . What a

> Moron. I heard that also, " Do you ever just let her be a kid " . Oh

> you mean the rocking, flapping, head banging, hair pulling,

> screaming, or isolation I get if I leave her completely alone.

I'll

> take stimulation of some sort anyday. If left alone our children

> don't act like a kid, so I couldn't just let her be a kid. But

> because of all that early work, now I can. The issue now may not

be

> the insurance coverage but getting doctors in Oregon to say any

> treatment is medically necessary for Autism, when apparently they

> don't know anything about it. There are lots of issues to be dealt

> with, this is just one of them.

> Kendra

>

[Guest guest]

Could ya'll send Gilmore down here to South Carolina for a while? We could use his help. Thank you very much and ya'll have a nice day. Maurine"christine@..." <christine@...> wrote: Speaking from someone who sat in the offices (among others) along with Gilmore in Albany for 2 different bills (insurance and thimerosal) and otherbills in the county gov't- the main objective was to educate. Most of thetime it was face to face conversations with the public officials and

theirstaff or speaking at a hearing. This was always done in a respectful way.And the staffers were many times grateful that we were there. Some evensaid they hoped we would come back in the future.This word "nice" that is being thrown around is confusing. and gangwere NICE to the politicians. We weren't NICE to the insurance companies orAAP. Does that mean we screamed in their faces or called them names? NO.It just meant that we stood up to them. Just like a woman is called a"bitch" if she stands up for herself or is assertive. always plays by the rules, is respectful, smart, truthful, etc. Thatis why I'm always there to back him up (I also would never want to goagainst the guy in a debate). I don't think was using the word "nice"in the context of communication. But, more like people who are "nice" manytimes are doormats and won't stand up and fight.Kelli- I think you are correct. Things

aren't so black and white "you'reeither for us or against us". But, I think part of this discussion is amiscommunication (which is common when emailing).We all have our own styles, be it driving, playing piano, singing or dealingwith autism issues. But, I think many of us are on the same team and REALLYhave the same goals. We shouldn't nickpick the details to death.Also, different parts of the US demand different approaches. Like here onLI you can't go to the education dept. and say "you never do anything forus" because preschoolers get all the services they need around here. Inother parts of the country that is not true. A lot has to do with themakeup of the gov't (D vs R), how many of the gov't officials have childrenwith autism, and the culture. I'm sure things are very different in NY thanNC (from my experience of living in VA for 6 years). Nice in NY is givingsomeone their change. Nice in NC is saying "thank

you very much, y'all havea nice day" while handing them their change.We are getting things done here in NY on many levels. Call us whatever youwant "nice" "productive" "crazy" LOL I'm proud of the job EVERYONE hasdone (including those not in NY). Let's keep on going and don't worry aboutlabels.NAALI

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Not according to this person who would definitely know...

I remember telling me that someone from the WH staff came

over to her meeting...

It was NOT at the WH with high ranking officials WHO COULD ACTUALLY

DO SOMETHING about the issue....which is the point this official was

making to me...

Kelli

> > >

> > > Four years in this autism politics game has taught me that you

> > don't

> > > get anything except through the development and the use of

> power.

> > > Being " nice: gets you exactly nothing.

> > >

> >

>

[Guest guest]

on 9/26/06 7:00 PM, Maurine Meleck at maurine_meleck@... wrote:

Could ya'll send Gilmore down here to South Carolina for a while? We could use his help. Thank you very much and ya'll have a nice day. Maurine

HA! NO WAY-- he is ours!

[Guest guest]

I agree, I sit on one of those councils and that is probably the

most effective way to get it done when it comes to autism issues.

Thanks for reminding everyone about this valuable resource!

> > >

> > > Four years in this autism politics game has taught me that you

> > don't

> > > get anything except through the development and the use of

power.

> > > Being " nice: gets you exactly nothing.

> > >

> >

>

[Guest guest]

I agree, I sit on one of those councils and that is probably the

most effective way to get it done when it comes to autism issues.

Thanks for reminding everyone about this valuable resource!

> > >

> > > Four years in this autism politics game has taught me that you

> > don't

> > > get anything except through the development and the use of

power.

> > > Being " nice: gets you exactly nothing.

> > >

> >

>

[Guest guest]

Thanks !

> >

> > Four years in this autism politics game has taught me that you

> don't

> > get anything except through the development and the use of

power.

> > Being " nice: gets you exactly nothing.

> >

>