NYS Albany Hearing 3/8/2007

[Guest guest]

What were the comments that evidence a " disconnect " ?

On Mar 11, 2007, at 6:10 PM, martinx2us wrote:

Below is the testimony of Alison Tepper Singer before The Assembly

Standing Committee On Mental Health, Mental Retardation and Development

Disabilities and the Senate Standing Committee On Mental Health And

Developmental Disabilities on March 8, 2007.

 

I have seen the many comments related thereto and apparently there

seems to be a disconnect on what was said.

 

On a related note I can add that the school Alison's daughter attends

is on the NYS list of approved private schools.  Consequently, it is a

district paid programs for children who need an out of district

placement as a result of the CSE's determination that the needs of the

child cannot be served in the local district or BOCES program. 

 MARCH 8, 2007

 

 

TESTIMONY OF ALISON TEPPER SINGER

SENIOR VICE PRESIDENT

COMMUNICATIONS AND STRATEGY

AUTISM SPEAKS

 

BEFORE

 

THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH, MENTAL RETARDATION

AND DEVELOPMENT DISABILITIES

 

AND

 

THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND DEVELOPMENTAL

DISABILITIES

 

 

MARCH 8, 2007

 

 

          Chairman and Chairman Morahan, thank you for

recognizing me and for holding this very important hearing today.

 

          My name is Alison Singer.  I am a resident of Westchester

County and the Senior Vice President for Communications and Strategy at

Autism Speaks.  Autism Speaks, the largest single organization devoted

to autism in the country, was founded in February 2005 by Bob and

Suzanne of New York City who have a grandson affected by this

disorder.  Over the last two years, we have joined forces with the

National Alliance for Autism Research and, very recently, Cure Autism

Now.  I am here on behalf of tens of thousands of parents and their

children who belong to our organization.

 

          I am also here on behalf of Jodie Singer, my nine year-old

daughter, who suffers from autism, and Tepper, my 42 year old

brother with autism.  Jodie truly is the sunshine in my life. She was

diagnosed at age 2 ½ and received early intervention services through

the New York State Department of Health.  She attended a special

education preschool and then received special education services in

public school.  However, her needs simply could not be met by the

public school system and she is currently enrolled in a private school

for children with autism, where she is making good progress, because

there is staff trained to meet her unique learning needs. My brother

, a former victim of Willowbrook, is currently living in a group

home in Rockland County, where he participates in a day program

delivering meals on wheels to home-bound citizens.  In the last few

years he has learned to swim and became toilet trained in his thirties,

proving that it is never too late to offer services to persons with

autism across their lifespan.

 

          As you know, Chairmen, my family is not alone in the struggle

with autism spectrum disorder.  Every twenty minutes, another child is

diagnosed.  According to the Centers for Disease Control and

Protection, 1 in 150 children are diagnosed with autism. That means

that in every grade in every public school in New York there is likely

to be at least one child diagnosed with autism.

 

          Because of this epidemic, Autism Speaks pushed very hard for

passage of the Federal Combating Autism Act, which the President signed

into law in December.  The CAA authorizes nearly one billion dollars to

fund research at the CDC, the Health Resources and Services

Administration, and the National Institutes of Health into the causes

of autism, including environmental factors, and evidence based

treatments for autism.  Currently, there are no effective means to

prevent autism, no fully effective evidence based treatments except

Applied Behavior Analysis (ABA), and no cure.  It is our fervent hope

that the CAA will help change that, and we urge the New York

legislature to act on a companion bill. Given the prevalence of autism

spectrum disorders in the state, there is no reason that New York

should not be a research leader and respond to the huge demand for

evidence-based information regarding the education of individuals with

autism.  We are in desperate need of evidence-based educational

treatments.  What we have now are collections of consensus-based best

practices.  But without a research foundation, " best practices " often

amount to an exchange of testimonials and fads.  With good marketing

strategies, any method or approach can become the next new hot therapy.

 School officials charged with the appropriation of limited resources

and expending public funds need to know what interventions are likely

to work with students with specific profiles.  The opportunists that

are looking for a quick buck abound and are feeding on these families'

" hopes " for quick answers or cures.

 

The No Child Left Behind Act and other such legislation require schools

to attend to and sufficiently fund programs that will promote academic

skills.  On the other hand, programs and opportunities that allow for

the development of life skills are being reduced.  Traditional " shop "

programs seen at the high school level, for example, have become

" technologized " to the point that an understanding of computer

technology and physics is required.  Hence, as school districts ratchet

up their education programs, young adults with autism and other related

disabilities are being further disadvantaged. 

 

Research based programs are needed to help guide school districts in

program development and implementation, as well as in program design. 

Funding needs to be earmarked to help establish centers that will

develop basic competencies in those individuals for whom college is not

in the future but who have the capability to be functional members in

our communities.  Such centers need to include career counselors and

placement services.  Finally, with the number of children with autism

rising and more and more of those children being educated in mainstream

public school classes, teacher training for all mainstream teachers

regarding how to work appropriately with students with autism is

necessary.

 

          But funding educational research is just a first step. 

Please allow me to suggest several other areas that your committees may

want to consider:

 

·        First, families that are affected by autism need insurance

coverage.  By and large, insurance companies do not reimburse parents

for the diagnosis, treatment, and services associated with spectrum

disorders.  At Autism Speaks, we do not believe in competition in human

misery.  But while health plans cover the broken legs and broken arms

of healthy kids, they do not cover the costs of treating a child with

autism.  That's just plain wrong.  You have the opportunity to change

that by mandating insurance coverage for evidence based treatments of

autism.

 

·        Second, New York should become a leader in providing services

to families who live with autism.  One of Autism Speaks' highest

priorities in Washington this year will be a follow-on to the Combating

Autism Act in the form of a state grant program to fund services and

treatment programs.  We urge you to get ahead of Congress and pass

legislation that will allocate resources to ensure that people

suffering from ASD can be meaningful members of their communities.

 

·        Third, although not necessarily in the purview of your

committees, we strongly recommend revisions to the tax code that would

benefit families with autistic children.  Mothers and fathers will not

be around forever, and without a cure, autism will stay with someone

for life.  We can use the tax laws to fund pre-tax accounts that allow

parents to provide for their kids, just as mothers and fathers can save

for college educations.

 

·        Finally, there is great concern among families of children

with autism that New York State Ed's interpretation of the Individuals

with Disabilities Educational Improvement Act (IDEIA) will mean that

children whose school districts cannot provide appropriate placements

within the district and who have to attend school outside of their home

district will no longer be the responsibility of the school district in

which their parents reside and pay taxes, but rather the school

district in which the new school the child attends is physically

located.  For example, if I live in Scarsdale and my daughter attends

an autism program at a school in Eastchester, responsibility for

reviewing her annual progress and evaluating her ongoing needs is

transferred to Eastchester, which may or may not decide that

Eastchester is even appropriate. While I understand that this provision

was implemented as part of the Child Find program, it will have

devastating consequences for families and children, and will result in

decreased accountability for the education of the most fragile of

children. It also places an undue burden on the districts that have

stepped up and created appropriate programs for children with autism. I

urge you to recommend that State Education not implement this change.

 

Chairman and Chairman Morahan, Members of both Committees, thank

you again for the opportunity to testify today.  All of us at Autism

Speaks look forward to working with you on responding to the urgent

health crisis in autism.  We stand ready to help you in all of your

efforts.  Thank you.

 

 

 

 

 

 

 

 

 

[Guest guest]

Unless I misread or confused some prior posts, I was under the

impression that some said Alison stated at the hearing that autism is

genetic. Perhpas I confused this with the WSJ posts. Do you recall

this?

Marty

>

> Below is the testimony of Alison Tepper Singer before The Assembly

> Standing Committee On Mental Health, Mental Retardation and

Development

> Disabilities and the Senate Standing Committee On Mental Health And

> Developmental Disabilities on March 8, 2007.

>

> Â

>

> I have seen the many comments related thereto and apparently there

> seems to be a disconnect on what was said.

>

> Â

>

> On a related note I can add that the school Alison's daughter attends

> is on the NYS list of approved private schools. Consequently, it

is a

> district paid programs for children who need an out of district

> placement as a result of the CSE's determination that the needs of the

> child cannot be served in the local district or BOCES program.Â

>

> Â MARCH 8, 2007

>

> Â

>

> Â

>

> TESTIMONY OF ALISON TEPPER SINGER

>

> SENIOR VICE PRESIDENT

>

> COMMUNICATIONS AND STRATEGY

>

> AUTISM SPEAKS

>

> Â

>

> BEFORE

>

> Â

>

> THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH, MENTAL RETARDATION

> AND DEVELOPMENT DISABILITIES

>

> Â

>

> AND

>

> Â

>

> THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND DEVELOPMENTAL

> DISABILITIES

>

> Â

>

> Â

>

> MARCH 8, 2007

>

> Â

>

> Â

>

> Â Â Â Â Â Â Â Â Â Chairman and

Chairman Morahan, thank you for

> recognizing me and for holding this very important hearing today.

>

> Â

>

> Â Â Â Â Â Â Â Â Â My name is Alison

Singer. I am a resident of Westchester

> County and the Senior Vice President for Communications and Strategy

at

> Autism Speaks. Autism Speaks, the largest single organization

devoted

> to autism in the country, was founded in February 2005 by Bob and

> Suzanne of New York City who have a grandson affected by this

> disorder. Over the last two years, we have joined forces with the

> National Alliance for Autism Research and, very recently, Cure Autism

> Now. I am here on behalf of tens of thousands of parents and

their

> children who belong to our organization.

>

> Â

>

> Â Â Â Â Â Â Â Â Â I am also here on behalf

of Jodie Singer, my nine year-old

> daughter, who suffers from autism, and Tepper, my 42 year old

> brother with autism. Jodie truly is the sunshine in my life. She

was

> diagnosed at age 2 ½ and received early intervention services

through

> the New York State Department of Health. She attended a special

> education preschool and then received special education services in

> public school. However, her needs simply could not be met by the

> public school system and she is currently enrolled in a private school

> for children with autism, where she is making good progress, because

> there is staff trained to meet her unique learning needs. My brother

> , a former victim of Willowbrook, is currently living in a group

> home in Rockland County, where he participates in a day program

> delivering meals on wheels to home-bound citizens. In the last

few

> years he has learned to swim and became toilet trained in his

thirties,

> proving that it is never too late to offer services to persons with

> autism across their lifespan.

>

> Â

>

> Â Â Â Â Â Â Â Â Â As you know, Chairmen,

my family is not alone in the struggle

> with autism spectrum disorder. Every twenty minutes, another

child is

> diagnosed. According to the Centers for Disease Control and

> Protection, 1 in 150 children are diagnosed with autism. That means

> that in every grade in every public school in New York there is likely

> to be at least one child diagnosed with autism.

>

> Â

>

> Â Â Â Â Â Â Â Â Â Because of this

epidemic, Autism Speaks pushed very hard for

> passage of the Federal Combating Autism Act, which the President

signed

> into law in December. The CAA authorizes nearly one billion

dollars to

> fund research at the CDC, the Health Resources and Services

> Administration, and the National Institutes of Health into the causes

> of autism, including environmental factors, and evidence based

> treatments for autism. Currently, there are no effective means to

> prevent autism, no fully effective evidence based treatments except

> Applied Behavior Analysis (ABA), and no cure. It is our fervent

hope

> that the CAA will help change that, and we urge the New York

> legislature to act on a companion bill. Given the prevalence of autism

> spectrum disorders in the state, there is no reason that New York

> should not be a research leader and respond to the huge demand for

> evidence-based information regarding the education of individuals with

> autism. We are in desperate need of evidence-based educational

> treatments. What we have now are collections of consensus-based

best

> practices. But without a research foundation, " best

practices " often

> amount to an exchange of testimonials and fads. With good

marketing

> strategies, any method or approach can become the next new hot

therapy.

> Â School officials charged with the appropriation of limited

resources

> and expending public funds need to know what interventions are likely

> to work with students with specific profiles. The opportunists

that

> are looking for a quick buck abound and are feeding on these families'

> " hopes " for quick answers or cures.

>

> Â

>

> The No Child Left Behind Act and other such legislation require

schools

> to attend to and sufficiently fund programs that will promoteÂ

academic

> skills. On the other hand, programs and opportunities that allow

for

> the development of life skills are being reduced.Â

Traditional " shop "

> programs seen at the high school level, for example, have become

> " technologized " to the point that an understanding of computer

> technology and physics is required. Hence, as school

districts ratchet

> up their education programs, young adults with autism and other

related

> disabilities are being further disadvantaged.Â

>

> Â

>

> Research based programs are needed to help guide school districts in

> program development and implementation, as well as in program

design.Â

> Funding needs to be earmarked to help establish centers that will

> develop basic competencies in those individuals for whom college is

not

> in the future but who have the capability to be functional members

in

> our communities. Such centers need to include career counselors

and

> placement services. Finally, with the number of children with

autism

> rising and more and more of those children being educated in

mainstream

> public school classes, teacher training for all mainstream teachers

> regarding how to work appropriately with students with autism is

> necessary.

>

> Â

>

> Â Â Â Â Â Â Â Â Â But funding educational

research is just a first step.Â

> Please allow me to suggest several other areas that your committees

may

> want to consider:

>

> Â

>

> ·       First, families that are

affected by autism need insurance

> coverage. By and large, insurance companies do not reimburse

parents

> for the diagnosis, treatment, and services associated with spectrum

> disorders. At Autism Speaks, we do not believe in competition in

human

> misery. But while health plans cover the broken legs and broken

arms

> of healthy kids, they do not cover the costs of treating a child with

> autism. That's just plain wrong. You have the opportunity to

change

> that by mandating insurance coverage for evidence based treatments of

> autism.

>

> Â

>

> ·       Second, New York should become a

leader in providing services

> to families who live with autism. One of Autism Speaks' highest

> priorities in Washington this year will be a follow-on to the

Combating

> Autism Act in the form of a state grant program to fund services and

> treatment programs. We urge you to get ahead of Congress and pass

> legislation that will allocate resources to ensure that people

> suffering from ASD can be meaningful members of their communities.

>

> Â

>

> ·       Third, although not necessarily

in the purview of your

> committees, we strongly recommend revisions to the tax code that would

> benefit families with autistic children. Mothers and fathers will

not

> be around forever, and without a cure, autism will stay with someone

> for life. We can use the tax laws to fund pre-tax accounts that

allow

> parents to provide for their kids, just as mothers and fathers can

save

> for college educations.

>

> Â

>

> ·       Finally, there is great concern

among families of children

> with autism that New York State Ed's interpretation of the Individuals

> with Disabilities Educational Improvement Act (IDEIA) will mean that

> children whose school districts cannot provide appropriate placements

> within the district and who have to attend school outside of their

home

> district will no longer be the responsibility of the school district

in

> which their parents reside and pay taxes, but rather the school

> district in which the new school the child attends is physically

> located. For example, if I live in Scarsdale and my daughter

attends

> an autism program at a school in Eastchester, responsibility for

> reviewing her annual progress and evaluating her ongoing needs is

> transferred to Eastchester, which may or may not decide that

> Eastchester is even appropriate. While I understand that this

provision

> was implemented as part of the Child Find program, it will have

> devastating consequences for families and children, and will result in

> decreased accountability for the education of the most fragile of

> children. It also places an undue burden on the districts that have

> stepped up and created appropriate programs for children with autism.

I

> urge you to recommend that State Education not implement this change.

>

> Â

>

> Chairman and Chairman Morahan, Members of both Committees,

thank

> you again for the opportunity to testify today. All of us at

Autism

> Speaks look forward to working with you on responding to the urgent

> health crisis in autism. We stand ready to help you in all of

your

> efforts. Thank you.

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

[Guest guest]

Marty,

Yes. Thanks for clarifying this. Some did comment that a statement was

made at the NYS hearing that " autism is genetic. " And I posed a

question as to whether such a statement was actually made and have not

commented further, pending review of a transcript or video. Now, what

you have posted below appears to be the submitted written testimony.

Perhaps there was a statement uttered that went outside the submitted

written testimony.

I submitted written testimony but my oral remarks were completely

different. Thanks for posting the written testimony. I have read it

with interest.

Bob

On Mar 11, 2007, at 6:21 PM, martinx2us wrote:

Unless I misread or confused some prior posts, I was under the

impression that some said Alison stated at the hearing that autism is

genetic. Perhpas I confused this with the WSJ posts. Do you recall

this?

Marty

>

> Below is the testimony of Alison Tepper Singer before The Assembly

> Standing Committee On Mental Health, Mental Retardation and

Development

> Disabilities and the Senate Standing Committee On Mental Health And

> Developmental Disabilities on March 8, 2007.

>

> Â

>

> I have seen the many comments related thereto and apparently there

> seems to be a disconnect on what was said.

>

> Â

>

> On a related note I can add that the school Alison's daughter attends

> is on the NYS list of approved private schools. Consequently, it

is a

> district paid programs for children who need an out of district

> placement as a result of the CSE's determination that the needs of

the

> child cannot be served in the local district or BOCES program.Â

>

> Â MARCH 8, 2007

>

> Â

>

> Â

>

> TESTIMONY OF ALISON TEPPER SINGER

>

> SENIOR VICE PRESIDENT

>

> COMMUNICATIONS AND STRATEGY

>

> AUTISM SPEAKS

>

> Â

>

> BEFORE

>

> Â

>

> THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH, MENTAL RETARDATION

> AND DEVELOPMENT DISABILITIES

>

> Â

>

> AND

>

> Â

>

> THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND DEVELOPMENTAL

> DISABILITIES

>

> Â

>

> Â

>

> MARCH 8, 2007

>

> Â

>

> Â

>

> Â Â Â Â Â Â Â Â Â Chairman and

Chairman Morahan, thank you for

> recognizing me and for holding this very important hearing today.

>

> Â

>

> Â Â Â Â Â Â Â Â Â My name is Alison

Singer. I am a resident of Westchester

> County and the Senior Vice President for Communications and Strategy

at

> Autism Speaks. Autism Speaks, the largest single organization

devoted

> to autism in the country, was founded in February 2005 by Bob and

> Suzanne of New York City who have a grandson affected by this

> disorder. Over the last two years, we have joined forces with the

> National Alliance for Autism Research and, very recently, Cure Autism

> Now. I am here on behalf of tens of thousands of parents and

their

> children who belong to our organization.

>

> Â

>

> Â Â Â Â Â Â Â Â Â I am also here on behalf

of Jodie Singer, my nine year-old

> daughter, who suffers from autism, and Tepper, my 42 year old

> brother with autism. Jodie truly is the sunshine in my life. She

was

> diagnosed at age 2 ½ and received early intervention services

through

> the New York State Department of Health. She attended a special

> education preschool and then received special education services in

> public school. However, her needs simply could not be met by the

> public school system and she is currently enrolled in a private

school

> for children with autism, where she is making good progress, because

> there is staff trained to meet her unique learning needs. My brother

> , a former victim of Willowbrook, is currently living in a

group

> home in Rockland County, where he participates in a day program

> delivering meals on wheels to home-bound citizens. In the last

few

> years he has learned to swim and became toilet trained in his

thirties,

> proving that it is never too late to offer services to persons with

> autism across their lifespan.

>

> Â

>

> Â Â Â Â Â Â Â Â Â As you know, Chairmen,

my family is not alone in the struggle

> with autism spectrum disorder. Every twenty minutes, another

child is

> diagnosed. According to the Centers for Disease Control and

> Protection, 1 in 150 children are diagnosed with autism. That means

> that in every grade in every public school in New York there is

likely

> to be at least one child diagnosed with autism.

>

> Â

>

> Â Â Â Â Â Â Â Â Â Because of this

epidemic, Autism Speaks pushed very hard for

> passage of the Federal Combating Autism Act, which the President

signed

> into law in December. The CAA authorizes nearly one billion

dollars to

> fund research at the CDC, the Health Resources and Services

> Administration, and the National Institutes of Health into the causes

> of autism, including environmental factors, and evidence based

> treatments for autism. Currently, there are no effective means to

> prevent autism, no fully effective evidence based treatments except

> Applied Behavior Analysis (ABA), and no cure. It is our fervent

hope

> that the CAA will help change that, and we urge the New York

> legislature to act on a companion bill. Given the prevalence of

autism

> spectrum disorders in the state, there is no reason that New York

> should not be a research leader and respond to the huge demand for

> evidence-based information regarding the education of individuals

with

> autism. We are in desperate need of evidence-based educational

> treatments. What we have now are collections of consensus-based

best

> practices. But without a research foundation, " best

practices " often

> amount to an exchange of testimonials and fads. With good

marketing

> strategies, any method or approach can become the next new hot

therapy.

> Â School officials charged with the appropriation of limited

resources

> and expending public funds need to know what interventions are likely

> to work with students with specific profiles. The opportunists

that

> are looking for a quick buck abound and are feeding on these

families'

> " hopes " for quick answers or cures.

>

> Â

>

> The No Child Left Behind Act and other such legislation require

schools

> to attend to and sufficiently fund programs that will promoteÂ

academic

> skills. On the other hand, programs and opportunities that allow

for

> the development of life skills are being reduced.Â

Traditional " shop "

> programs seen at the high school level, for example, have become

> " technologized " to the point that an understanding of computer

> technology and physics is required. Hence, as school

districts ratchet

> up their education programs, young adults with autism and other

related

> disabilities are being further disadvantaged.Â

>

> Â

>

> Research based programs are needed to help guide school districts in

> program development and implementation, as well as in program

design.Â

> Funding needs to be earmarked to help establish centers that will

> develop basic competencies in those individuals for whom college is

not

> in the future but who have the capability to be functional members

in

> our communities. Such centers need to include career counselors

and

> placement services. Finally, with the number of children with

autism

> rising and more and more of those children being educated in

mainstream

> public school classes, teacher training for all mainstream teachers

> regarding how to work appropriately with students with autism is

> necessary.

>

> Â

>

> Â Â Â Â Â Â Â Â Â But funding educational

research is just a first step.Â

> Please allow me to suggest several other areas that your committees

may

> want to consider:

>

> Â

>

> ·       First, families that are

affected by autism need insurance

> coverage. By and large, insurance companies do not reimburse

parents

> for the diagnosis, treatment, and services associated with spectrum

> disorders. At Autism Speaks, we do not believe in competition in

human

> misery. But while health plans cover the broken legs and broken

arms

> of healthy kids, they do not cover the costs of treating a child with

> autism. That's just plain wrong. You have the opportunity to

change

> that by mandating insurance coverage for evidence based treatments of

> autism.

>

> Â

>

> ·       Second, New York should become a

leader in providing services

> to families who live with autism. One of Autism Speaks' highest

> priorities in Washington this year will be a follow-on to the

Combating

> Autism Act in the form of a state grant program to fund services and

> treatment programs. We urge you to get ahead of Congress and pass

> legislation that will allocate resources to ensure that people

> suffering from ASD can be meaningful members of their communities.

>

> Â

>

> ·       Third, although not necessarily

in the purview of your

> committees, we strongly recommend revisions to the tax code that

would

> benefit families with autistic children. Mothers and fathers will

not

> be around forever, and without a cure, autism will stay with someone

> for life. We can use the tax laws to fund pre-tax accounts that

allow

> parents to provide for their kids, just as mothers and fathers can

save

> for college educations.

>

> Â

>

> ·       Finally, there is great concern

among families of children

> with autism that New York State Ed's interpretation of the

Individuals

> with Disabilities Educational Improvement Act (IDEIA) will mean that

> children whose school districts cannot provide appropriate placements

> within the district and who have to attend school outside of their

home

> district will no longer be the responsibility of the school district

in

> which their parents reside and pay taxes, but rather the school

> district in which the new school the child attends is physically

> located. For example, if I live in Scarsdale and my daughter

attends

> an autism program at a school in Eastchester, responsibility for

> reviewing her annual progress and evaluating her ongoing needs is

> transferred to Eastchester, which may or may not decide that

> Eastchester is even appropriate. While I understand that this

provision

> was implemented as part of the Child Find program, it will have

> devastating consequences for families and children, and will result

in

> decreased accountability for the education of the most fragile of

> children. It also places an undue burden on the districts that have

> stepped up and created appropriate programs for children with autism.

I

> urge you to recommend that State Education not implement this change.

>

> Â

>

> Chairman and Chairman Morahan, Members of both Committees,

thank

> you again for the opportunity to testify today. All of us at

Autism

> Speaks look forward to working with you on responding to the urgent

> health crisis in autism. We stand ready to help you in all of

your

> efforts. Thank you.

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

[Guest guest]

Just a follow-up. I used the expression " disconnect " in reference to

the following comments:

On Mar 10, 2007, at 4:25 PM, S Colletti wrote:

" Bob - Singer did indeed say that it was genetic, then went on

to talk about her brother and then her daugther...` "

I was not there so I am in no position to comment on any remarks outside

the written testimony.

As an aside and for what it is worth, I wrote to her without mentioning

any specific person to ask her is she said autism is genetic after

reading Sally's comment and she told me that she never said such a thing

at the hearing.

Sally perhaps you can calrify this. No disrespect was intended for you

for my use of the word disconnect.

Marty

> >

> > Below is the testimony of Alison Tepper Singer before The Assembly

> > Standing Committee On Mental Health, Mental Retardation and

> Development

> > Disabilities and the Senate Standing Committee On Mental Health And

> > Developmental Disabilities on March 8, 2007.

> >

> > Â

> >

> > I have seen the many comments related thereto and apparently there

> > seems to be a disconnect on what was said.

> >

> > Â

> >

> > On a related note I can add that the school Alison's daughter

attends

> > is on the NYS list of approved private schools. Consequently, it

> is a

> > district paid programs for children who need an out of district

> > placement as a result of the CSE's determination that the needs of

the

> > child cannot be served in the local district or BOCES program.Â

> >

> > Â MARCH 8, 2007

> >

> > Â

> >

> > Â

> >

> > TESTIMONY OF ALISON TEPPER SINGER

> >

> > SENIOR VICE PRESIDENT

> >

> > COMMUNICATIONS AND STRATEGY

> >

> > AUTISM SPEAKS

> >

> > Â

> >

> > BEFORE

> >

> > Â

> >

> > THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH, MENTAL RETARDATION

> > AND DEVELOPMENT DISABILITIES

> >

> > Â

> >

> > AND

> >

> > Â

> >

> > THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND DEVELOPMENTAL

> > DISABILITIES

> >

> > Â

> >

> > Â

> >

> > MARCH 8, 2007

> >

> > Â

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â Chairman and

> Chairman Morahan, thank you for

> > recognizing me and for holding this very important hearing today.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â My name is Alison

> Singer. I am a resident of Westchester

> > County and the Senior Vice President for Communications and Strategy

> at

> > Autism Speaks. Autism Speaks, the largest single organization

> devoted

> > to autism in the country, was founded in February 2005 by Bob and

> > Suzanne of New York City who have a grandson affected by this

> > disorder. Over the last two years, we have joined forces with

the

> > National Alliance for Autism Research and, very recently, Cure

Autism

> > Now. I am here on behalf of tens of thousands of parents and

> their

> > children who belong to our organization.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â I am also here on

behalf

> of Jodie Singer, my nine year-old

> > daughter, who suffers from autism, and Tepper, my 42 year old

> > brother with autism. Jodie truly is the sunshine in my life. She

> was

> > diagnosed at age 2 ½ and received early intervention services

> through

> > the New York State Department of Health. She attended a special

> > education preschool and then received special education services in

> > public school. However, her needs simply could not be met by the

> > public school system and she is currently enrolled in a private

school

> > for children with autism, where she is making good progress, because

> > there is staff trained to meet her unique learning needs. My brother

> > , a former victim of Willowbrook, is currently living in a

group

> > home in Rockland County, where he participates in a day program

> > delivering meals on wheels to home-bound citizens. In the last

> few

> > years he has learned to swim and became toilet trained in his

> thirties,

> > proving that it is never too late to offer services to persons with

> > autism across their lifespan.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â As you know, Chairmen,

> my family is not alone in the struggle

> > with autism spectrum disorder. Every twenty minutes, another

> child is

> > diagnosed. According to the Centers for Disease Control and

> > Protection, 1 in 150 children are diagnosed with autism. That means

> > that in every grade in every public school in New York there is

likely

> > to be at least one child diagnosed with autism.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â Because of this

> epidemic, Autism Speaks pushed very hard for

> > passage of the Federal Combating Autism Act, which the President

> signed

> > into law in December. The CAA authorizes nearly one billion

> dollars to

> > fund research at the CDC, the Health Resources and Services

> > Administration, and the National Institutes of Health into the

causes

> > of autism, including environmental factors, and evidence based

> > treatments for autism. Currently, there are no effective means

to

> > prevent autism, no fully effective evidence based treatments except

> > Applied Behavior Analysis (ABA), and no cure. It is our fervent

> hope

> > that the CAA will help change that, and we urge the New York

> > legislature to act on a companion bill. Given the prevalence of

autism

> > spectrum disorders in the state, there is no reason that New York

> > should not be a research leader and respond to the huge demand for

> > evidence-based information regarding the education of individuals

with

> > autism. We are in desperate need of evidence-based educational

> > treatments. What we have now are collections of consensus-based

> best

> > practices. But without a research foundation, " best

> practices " often

> > amount to an exchange of testimonials and fads. With good

> marketing

> > strategies, any method or approach can become the next new hot

> therapy.

> > Â School officials charged with the appropriation of limited

> resources

> > and expending public funds need to know what interventions are

likely

> > to work with students with specific profiles. The opportunists

> that

> > are looking for a quick buck abound and are feeding on these

families'

> > " hopes " for quick answers or cures.

> >

> > Â

> >

> > The No Child Left Behind Act and other such legislation require

> schools

> > to attend to and sufficiently fund programs that will

promoteÂ

> academic

> > skills. On the other hand, programs and opportunities that allow

> for

> > the development of life skills are being reduced.Â

> Traditional " shop "

> > programs seen at the high school level, for example, have become

> > " technologized " to the point that an understanding of computer

> > technology and physics is required. Hence, as school

> districts ratchet

> > up their education programs, young adults with autism and other

> related

> > disabilities are being further disadvantaged.Â

> >

> > Â

> >

> > Research based programs are needed to help guide school districts in

> > program development and implementation, as well as in program

> design.Â

> > Funding needs to be earmarked to help establish centers that will

> > develop basic competencies in those individuals for whom college is

> not

> > in the future but who have the capability to be functional

members

> in

> > our communities. Such centers need to include career counselors

> and

> > placement services. Finally, with the number of children with

> autism

> > rising and more and more of those children being educated in

> mainstream

> > public school classes, teacher training for all mainstream teachers

> > regarding how to work appropriately with students with autism is

> > necessary.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â But funding educational

> research is just a first step.Â

> > Please allow me to suggest several other areas that your committees

> may

> > want to consider:

> >

> > Â

> >

> > ·       First, families that are

> affected by autism need insurance

> > coverage. By and large, insurance companies do not reimburse

> parents

> > for the diagnosis, treatment, and services associated with spectrum

> > disorders. At Autism Speaks, we do not believe in competition in

> human

> > misery. But while health plans cover the broken legs and broken

> arms

> > of healthy kids, they do not cover the costs of treating a child

with

> > autism. That's just plain wrong. You have the opportunity to

> change

> > that by mandating insurance coverage for evidence based treatments

of

> > autism.

> >

> > Â

> >

> > ·       Second, New York should become

a

> leader in providing services

> > to families who live with autism. One of Autism Speaks' highest

> > priorities in Washington this year will be a follow-on to the

> Combating

> > Autism Act in the form of a state grant program to fund services and

> > treatment programs. We urge you to get ahead of Congress and

pass

> > legislation that will allocate resources to ensure that people

> > suffering from ASD can be meaningful members of their communities.

> >

> > Â

> >

> > ·       Third, although not necessarily

> in the purview of your

> > committees, we strongly recommend revisions to the tax code that

would

> > benefit families with autistic children. Mothers and fathers

will

> not

> > be around forever, and without a cure, autism will stay with someone

> > for life. We can use the tax laws to fund pre-tax accounts that

> allow

> > parents to provide for their kids, just as mothers and fathers can

> save

> > for college educations.

> >

> > Â

> >

> > ·       Finally, there is great concern

> among families of children

> > with autism that New York State Ed's interpretation of the

Individuals

> > with Disabilities Educational Improvement Act (IDEIA) will mean that

> > children whose school districts cannot provide appropriate

placements

> > within the district and who have to attend school outside of their

> home

> > district will no longer be the responsibility of the school district

> in

> > which their parents reside and pay taxes, but rather the school

> > district in which the new school the child attends is physically

> > located. For example, if I live in Scarsdale and my daughter

> attends

> > an autism program at a school in Eastchester, responsibility for

> > reviewing her annual progress and evaluating her ongoing needs is

> > transferred to Eastchester, which may or may not decide that

> > Eastchester is even appropriate. While I understand that this

> provision

> > was implemented as part of the Child Find program, it will have

> > devastating consequences for families and children, and will result

in

> > decreased accountability for the education of the most fragile of

> > children. It also places an undue burden on the districts that have

> > stepped up and created appropriate programs for children with

autism.

> I

> > urge you to recommend that State Education not implement this

change.

> >

> > Â

> >

> > Chairman and Chairman Morahan, Members of both Committees,

> thank

> > you again for the opportunity to testify today. All of us at

> Autism

> > Speaks look forward to working with you on responding to the urgent

> > health crisis in autism. We stand ready to help you in all of

> your

> > efforts. Thank you.

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

>

[Guest guest]

I heard her testimony.

I don’t remember her talking about genetics.

I have a video- but right now too busy with Conference stuff to work on it- it’s going to be a few days, if not next week before I can post it.

Many people talked in addition to what was written down.

On 3/11/07 6:37 PM, " Krakow " <rkrakow@...> wrote:

Marty,

Yes. Thanks for clarifying this. Some did comment that a statement was made at the NYS hearing that " autism is genetic. " And I posed a question as to whether such a statement was actually made and have not commented further, pending review of a transcript or video. Now, what you have posted below appears to be the submitted written testimony. Perhaps there was a statement uttered that went outside the submitted written testimony.

I submitted written testimony but my oral remarks were completely different. Thanks for posting the written testimony. I have read it with interest.

Bob

On Mar 11, 2007, at 6:21 PM, martinx2us wrote:

Unless I misread or confused some prior posts, I was under the

impression that some said Alison stated at the hearing that autism is

genetic. Perhpas I confused this with the WSJ posts. Do you recall

this?

Marty

>

> Below is the testimony of Alison Tepper Singer before The Assembly

> Standing Committee On Mental Health, Mental Retardation and

Development

> Disabilities and the Senate Standing Committee On Mental Health And

> Developmental Disabilities on March 8, 2007.

>

> Â

>

> I have seen the many comments related thereto and apparently there

> seems to be a disconnect on what was said.

>

> Â

>

> On a related note I can add that the school Alison's daughter attends

> is on the NYS list of approved private schools. Consequently, it

is a

> district paid programs for children who need an out of district

> placement as a result of the CSE's determination that the needs of the

> child cannot be served in the local district or BOCES program.Â

>

> Â MARCH 8, 2007

>

> Â

>

> Â

>

> TESTIMONY OF ALISON TEPPER SINGER

>

> SENIOR VICE PRESIDENT

>

> COMMUNICATIONS AND STRATEGY

>

> AUTISM SPEAKS

>

> Â

>

> BEFORE

>

> Â

>

> THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH, MENTAL RETARDATION

> AND DEVELOPMENT DISABILITIES

>

> Â

>

> AND

>

> Â

>

> THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND DEVELOPMENTAL

> DISABILITIES

>

> Â

>

> Â

>

> MARCH 8, 2007

>

> Â

>

> Â

>

> Â Â Â Â Â Â Â Â Â Chairman and

Chairman Morahan, thank you for

> recognizing me and for holding this very important hearing today.

>

> Â

>

> Â Â Â Â Â Â Â Â Â My name is Alison

Singer. I am a resident of Westchester

> County and the Senior Vice President for Communications and Strategy

at

> Autism Speaks. Autism Speaks, the largest single organization

devoted

> to autism in the country, was founded in February 2005 by Bob and

> Suzanne of New York City who have a grandson affected by this

> disorder. Over the last two years, we have joined forces with the

> National Alliance for Autism Research and, very recently, Cure Autism

> Now. I am here on behalf of tens of thousands of parents and

their

> children who belong to our organization.

>

> Â

>

> Â Â Â Â Â Â Â Â Â I am also here on behalf

of Jodie Singer, my nine year-old

> daughter, who suffers from autism, and Tepper, my 42 year old

> brother with autism. Jodie truly is the sunshine in my life. She

was

> diagnosed at age 2 ½ and received early intervention services

through

> the New York State Department of Health. She attended a special

> education preschool and then received special education services in

> public school. However, her needs simply could not be met by the

> public school system and she is currently enrolled in a private school

> for children with autism, where she is making good progress, because

> there is staff trained to meet her unique learning needs. My brother

> , a former victim of Willowbrook, is currently living in a group

> home in Rockland County, where he participates in a day program

> delivering meals on wheels to home-bound citizens. In the last

few

> years he has learned to swim and became toilet trained in his

thirties,

> proving that it is never too late to offer services to persons with

> autism across their lifespan.

>

> Â

>

> Â Â Â Â Â Â Â Â Â As you know, Chairmen,

my family is not alone in the struggle

> with autism spectrum disorder. Every twenty minutes, another

child is

> diagnosed. According to the Centers for Disease Control and

> Protection, 1 in 150 children are diagnosed with autism. That means

> that in every grade in every public school in New York there is likely

> to be at least one child diagnosed with autism.

>

> Â

>

> Â Â Â Â Â Â Â Â Â Because of this

epidemic, Autism Speaks pushed very hard for

> passage of the Federal Combating Autism Act, which the President

signed

> into law in December. The CAA authorizes nearly one billion

dollars to

> fund research at the CDC, the Health Resources and Services

> Administration, and the National Institutes of Health into the causes

> of autism, including environmental factors, and evidence based

> treatments for autism. Currently, there are no effective means to

> prevent autism, no fully effective evidence based treatments except

> Applied Behavior Analysis (ABA), and no cure. It is our fervent

hope

> that the CAA will help change that, and we urge the New York

> legislature to act on a companion bill. Given the prevalence of autism

> spectrum disorders in the state, there is no reason that New York

> should not be a research leader and respond to the huge demand for

> evidence-based information regarding the education of individuals with

> autism. We are in desperate need of evidence-based educational

> treatments. What we have now are collections of consensus-based

best

> practices. But without a research foundation, " best

practices " often

> amount to an exchange of testimonials and fads. With good

marketing

> strategies, any method or approach can become the next new hot

therapy.

> Â School officials charged with the appropriation of limited

resources

> and expending public funds need to know what interventions are likely

> to work with students with specific profiles. The opportunists

that

> are looking for a quick buck abound and are feeding on these families'

> " hopes " for quick answers or cures.

>

> Â

>

> The No Child Left Behind Act and other such legislation require

schools

> to attend to and sufficiently fund programs that will promoteÂ

academic

> skills. On the other hand, programs and opportunities that allow

for

> the development of life skills are being reduced.Â

Traditional " shop "

> programs seen at the high school level, for example, have become

> " technologized " to the point that an understanding of computer

> technology and physics is required. Hence, as school

districts ratchet

> up their education programs, young adults with autism and other

related

> disabilities are being further disadvantaged.Â

>

> Â

>

> Research based programs are needed to help guide school districts in

> program development and implementation, as well as in program

design.Â

> Funding needs to be earmarked to help establish centers that will

> develop basic competencies in those individuals for whom college is

not

> in the future but who have the capability to be functional members

in

> our communities. Such centers need to include career counselors

and

> placement services. Finally, with the number of children with

autism

> rising and more and more of those children being educated in

mainstream

> public school classes, teacher training for all mainstream teachers

> regarding how to work appropriately with students with autism is

> necessary.

>

> Â

>

> Â Â Â Â Â Â Â Â Â But funding educational

research is just a first step.Â

> Please allow me to suggest several other areas that your committees

may

> want to consider:

>

> Â

>

> ·       First, families that are

affected by autism need insurance

> coverage. By and large, insurance companies do not reimburse

parents

> for the diagnosis, treatment, and services associated with spectrum

> disorders. At Autism Speaks, we do not believe in competition in

human

> misery. But while health plans cover the broken legs and broken

arms

> of healthy kids, they do not cover the costs of treating a child with

> autism. That's just plain wrong. You have the opportunity to

change

> that by mandating insurance coverage for evidence based treatments of

> autism.

>

> Â

>

> ·       Second, New York should become a

leader in providing services

> to families who live with autism. One of Autism Speaks' highest

> priorities in Washington this year will be a follow-on to the

Combating

> Autism Act in the form of a state grant program to fund services and

> treatment programs. We urge you to get ahead of Congress and pass

> legislation that will allocate resources to ensure that people

> suffering from ASD can be meaningful members of their communities.

>

> Â

>

> ·       Third, although not necessarily

in the purview of your

> committees, we strongly recommend revisions to the tax code that would

> benefit families with autistic children. Mothers and fathers will

not

> be around forever, and without a cure, autism will stay with someone

> for life. We can use the tax laws to fund pre-tax accounts that

allow

> parents to provide for their kids, just as mothers and fathers can

save

> for college educations.

>

> Â

>

> ·       Finally, there is great concern

among families of children

> with autism that New York State Ed's interpretation of the Individuals

> with Disabilities Educational Improvement Act (IDEIA) will mean that

> children whose school districts cannot provide appropriate placements

> within the district and who have to attend school outside of their

home

> district will no longer be the responsibility of the school district

in

> which their parents reside and pay taxes, but rather the school

> district in which the new school the child attends is physically

> located. For example, if I live in Scarsdale and my daughter

attends

> an autism program at a school in Eastchester, responsibility for

> reviewing her annual progress and evaluating her ongoing needs is

> transferred to Eastchester, which may or may not decide that

> Eastchester is even appropriate. While I understand that this

provision

> was implemented as part of the Child Find program, it will have

> devastating consequences for families and children, and will result in

> decreased accountability for the education of the most fragile of

> children. It also places an undue burden on the districts that have

> stepped up and created appropriate programs for children with autism.

I

> urge you to recommend that State Education not implement this change.

>

> Â

>

> Chairman and Chairman Morahan, Members of both Committees,

thank

> you again for the opportunity to testify today. All of us at

Autism

> Speaks look forward to working with you on responding to the urgent

> health crisis in autism. We stand ready to help you in all of

your

> efforts. Thank you.

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

> Â

>

[Guest guest]

This is her written testimony, not exactly what she said....

> >

> > Below is the testimony of Alison Tepper Singer before The

Assembly

> > Standing Committee On Mental Health, Mental Retardation and

> Development

> > Disabilities and the Senate Standing Committee On Mental Health

And

> > Developmental Disabilities on March 8, 2007.

> >

> > Â

> >

> > I have seen the many comments related thereto and apparently

there

> > seems to be a disconnect on what was said.

> >

> > Â

> >

> > On a related note I can add that the school Alison's daughter

attends

> > is on the NYS list of approved private schools. Consequently,

it

> is a

> > district paid programs for children who need an out of district

> > placement as a result of the CSE's determination that the needs

of

> the

> > child cannot be served in the local district or BOCES program.Â

> >

> > Â MARCH 8, 2007

> >

> > Â

> >

> > Â

> >

> > TESTIMONY OF ALISON TEPPER SINGER

> >

> > SENIOR VICE PRESIDENT

> >

> > COMMUNICATIONS AND STRATEGY

> >

> > AUTISM SPEAKS

> >

> > Â

> >

> > BEFORE

> >

> > Â

> >

> > THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH, MENTAL

RETARDATION

> > AND DEVELOPMENT DISABILITIES

> >

> > Â

> >

> > AND

> >

> > Â

> >

> > THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND DEVELOPMENTAL

> > DISABILITIES

> >

> > Â

> >

> > Â

> >

> > MARCH 8, 2007

> >

> > Â

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â Chairman and

> Chairman Morahan, thank you for

> > recognizing me and for holding this very important hearing

today.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â My name is Alison

> Singer. I am a resident of Westchester

> > County and the Senior Vice President for Communications and

Strategy

> at

> > Autism Speaks. Autism Speaks, the largest single organization

> devoted

> > to autism in the country, was founded in February 2005 by Bob

and

> > Suzanne of New York City who have a grandson affected by

this

> > disorder. Over the last two years, we have joined forces with

the

> > National Alliance for Autism Research and, very recently, Cure

Autism

> > Now. I am here on behalf of tens of thousands of parents and

> their

> > children who belong to our organization.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â I am also here on behalf

> of Jodie Singer, my nine year-old

> > daughter, who suffers from autism, and Tepper, my 42

year old

> > brother with autism. Jodie truly is the sunshine in my life.

She

> was

> > diagnosed at age 2 ½ and received early intervention services

> through

> > the New York State Department of Health. She attended a

special

> > education preschool and then received special education

services in

> > public school. However, her needs simply could not be met by

the

> > public school system and she is currently enrolled in a private

> school

> > for children with autism, where she is making good progress,

because

> > there is staff trained to meet her unique learning needs. My

brother

> > , a former victim of Willowbrook, is currently living in

a

> group

> > home in Rockland County, where he participates in a day program

> > delivering meals on wheels to home-bound citizens. In the last

> few

> > years he has learned to swim and became toilet trained in his

> thirties,

> > proving that it is never too late to offer services to persons

with

> > autism across their lifespan.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â As you know, Chairmen,

> my family is not alone in the struggle

> > with autism spectrum disorder. Every twenty minutes, another

> child is

> > diagnosed. According to the Centers for Disease Control and

> > Protection, 1 in 150 children are diagnosed with autism. That

means

> > that in every grade in every public school in New York there is

> likely

> > to be at least one child diagnosed with autism.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â Because of this

> epidemic, Autism Speaks pushed very hard for

> > passage of the Federal Combating Autism Act, which the President

> signed

> > into law in December. The CAA authorizes nearly one billion

> dollars to

> > fund research at the CDC, the Health Resources and Services

> > Administration, and the National Institutes of Health into the

causes

> > of autism, including environmental factors, and evidence based

> > treatments for autism. Currently, there are no effective

means to

> > prevent autism, no fully effective evidence based treatments

except

> > Applied Behavior Analysis (ABA), and no cure. It is our

fervent

> hope

> > that the CAA will help change that, and we urge the New York

> > legislature to act on a companion bill. Given the prevalence of

> autism

> > spectrum disorders in the state, there is no reason that New

York

> > should not be a research leader and respond to the huge demand

for

> > evidence-based information regarding the education of

individuals

> with

> > autism. We are in desperate need of evidence-based educational

> > treatments. What we have now are collections of consensus-

based

> best

> > practices. But without a research foundation, " best

> practices " often

> > amount to an exchange of testimonials and fads. With good

> marketing

> > strategies, any method or approach can become the next new hot

> therapy.

> > Â School officials charged with the appropriation of limited

> resources

> > and expending public funds need to know what interventions are

likely

> > to work with students with specific profiles. The opportunists

> that

> > are looking for a quick buck abound and are feeding on these

> families'

> > " hopes " for quick answers or cures.

> >

> > Â

> >

> > The No Child Left Behind Act and other such legislationÂ

require

> schools

> > to attend to and sufficiently fund programs that will

promoteÂ

> academic

> > skills. On the other hand, programs and opportunities that

allow

> for

> > the development of life skills are being reduced.Â

> Traditional " shop "

> > programs seen at the high school level, for example, have become

> > " technologized " to the point that an understanding of computer

> > technology and physics is required. Hence, as school

> districts ratchet

> > up their education programs, young adults with autism and other

> related

> > disabilities are being further disadvantaged.Â

> >

> > Â

> >

> > Research based programs are needed to help guide school

districts in

> > program development and implementation, as well as in program

> design.Â

> > Funding needs to be earmarked to help establish centers that

will

> > develop basic competencies in those individuals for whom

college is

> not

> > in the future but who have the capability to be functional

members

> in

> > our communities. Such centers need to include career

counselors

> and

> > placement services. Finally, with the number of children with

> autism

> > rising and more and more of those children being educated in

> mainstream

> > public school classes, teacher training for all mainstream

teachers

> > regarding how to work appropriately with students with autism is

> > necessary.

> >

> > Â

> >

> > Â Â Â Â Â Â Â Â Â But funding educational

> research is just a first step.Â

> > Please allow me to suggest several other areas that your

committees

> may

> > want to consider:

> >

> > Â

> >

> > ·       First, families that are

> affected by autism need insurance

> > coverage. By and large, insurance companies do not reimburse

> parents

> > for the diagnosis, treatment, and services associated with

spectrum

> > disorders. At Autism Speaks, we do not believe in competition

in

> human

> > misery. But while health plans cover the broken legs and

broken

> arms

> > of healthy kids, they do not cover the costs of treating a

child with

> > autism. That's just plain wrong. You have the opportunity to

> change

> > that by mandating insurance coverage for evidence based

treatments of

> > autism.

> >

> > Â

> >

> > ·       Second, New York should become a

> leader in providing services

> > to families who live with autism. One of Autism Speaks'

highest

> > priorities in Washington this year will be a follow-on to the

> Combating

> > Autism Act in the form of a state grant program to fund

services and

> > treatment programs. We urge you to get ahead of Congress and

pass

> > legislation that will allocate resources to ensure that people

> > suffering from ASD can be meaningful members of their

communities.

> >

> > Â

> >

> > ·       Third, although not necessarily

> in the purview of your

> > committees, we strongly recommend revisions to the tax code

that

> would

> > benefit families with autistic children. Mothers and fathers

will

> not

> > be around forever, and without a cure, autism will stay with

someone

> > for life. We can use the tax laws to fund pre-tax accounts

that

> allow

> > parents to provide for their kids, just as mothers and fathers

can

> save

> > for college educations.

> >

> > Â

> >

> > ·       Finally, there is great concern

> among families of children

> > with autism that New York State Ed's interpretation of the

> Individuals

> > with Disabilities Educational Improvement Act (IDEIA) will mean

that

> > children whose school districts cannot provide appropriate

placements

> > within the district and who have to attend school outside of

their

> home

> > district will no longer be the responsibility of the school

district

> in

> > which their parents reside and pay taxes, but rather the school

> > district in which the new school the child attends is physically

> > located. For example, if I live in Scarsdale and my daughter

> attends

> > an autism program at a school in Eastchester, responsibility for

> > reviewing her annual progress and evaluating her ongoing needs

is

> > transferred to Eastchester, which may or may not decide that

> > Eastchester is even appropriate. While I understand that this

> provision

> > was implemented as part of the Child Find program, it will have

> > devastating consequences for families and children, and will

result

> in

> > decreased accountability for the education of the most fragile

of

> > children. It also places an undue burden on the districts that

have

> > stepped up and created appropriate programs for children with

autism.

> I

> > urge you to recommend that State Education not implement this

change.

> >

> > Â

> >

> > Chairman and Chairman Morahan, Members of both

Committees,

> thank

> > you again for the opportunity to testify today. All of us at

> Autism

> > Speaks look forward to working with you on responding to the

urgent

> > health crisis in autism. We stand ready to help you in all of

> your

> > efforts. Thank you.

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

> > Â

> >

>

[Guest guest]

,

Whenever you get a chance check through it, but in the meantime there

was discussion while she was sitting there. This occured after she

read her testimony, which she was asked not to do before she got up

there. Maybe I was too busy with wanting to shoot spit balls at

her for her wallstreet journal editorial to really pay any attention

at all! She continues on with the same garbage from the WSJ with

this in her written testimony:

" With good marketing strategies, any method or approach can become

the next new hot therapy. School officials charged with the

appropriation of limited resources and expending public funds need to

know what interventions are likely to work with students with

specific profiles.

Don't any of you have a problem with this statement? It's directed

right towards the biomed treatment!!! ******* " The opportunists that

are looking for a quick buck abound and are feeding on these

families' " hopes " for quick answers or cures. " ******

My god, if anything stand up for what you've with your children. As

Imus said, have a backbone here! Again, it's not in

particular, she is just a pawn and she looked downright uncomfortable

being there. It's AS as a whole.

[Guest guest]

She did look uncomfortable. Maybe she doesn’t like public speaking- who knows?

Honestly, it didn’t matter to me what she said. Anything she had to say won’t help my son.

We’ve got 2 hearings in Suffolk Co this week about thimerosal in vaccines, I’ve got a luncheon

with Gov. Spitzer’s wife on Friday, we might have to reschedule my son’s chelation appt. this week,

I’ve got to get 200 packets out for the LIAC tomorrow (got 40 done so far)------ my priority is not what thinks.

And the more we obsess over her- the more importance her comments get. Yes- I know she speaks for AS.

But when my son recovers it’s not going to be because of AS or NAAR.

Again- the videos will get done when I can get them done. Not mad at you Sally. Just have a lot to do....

On 3/11/07 7:09 PM, " S Colletti " <rainmanmama@...> wrote:

,

Whenever you get a chance check through it, but in the meantime there

was discussion while she was sitting there. This occured after she

read her testimony, which she was asked not to do before she got up

there. Maybe I was too busy with wanting to shoot spit balls at

her for her wallstreet journal editorial to really pay any attention

at all! She continues on with the same garbage from the WSJ with

this in her written testimony:

" With good marketing strategies, any method or approach can become

the next new hot therapy. School officials charged with the

appropriation of limited resources and expending public funds need to

know what interventions are likely to work with students with

specific profiles.

Don't any of you have a problem with this statement? It's directed

right towards the biomed treatment!!! ******* " The opportunists that

are looking for a quick buck abound and are feeding on these

families' " hopes " for quick answers or cures. " ******

My god, if anything stand up for what you've with your children. As

Imus said, have a backbone here! Again, it's not in

particular, she is just a pawn and she looked downright uncomfortable

being there. It's AS as a whole.

[Guest guest]

Hey it's cool and I totally agree with you. The only reason I asked

you about it was to verify what someone is questioning me about, when

those questions should not be directed at me. I was just sitting and

listening and again, maybe I heard wrong, if I did no big deal. Like

you said, who cares?

Just remember to take some breaks for yourself so you don't get too

run-down. You never took a break on Thursday...amazing. Family is

always first! Have a good week!

>

> She did look uncomfortable. Maybe she doesn¹t like public speaking-

who

> knows?

>

> Honestly, it didn¹t matter to me what she said. Anything she had

to say

> won¹t help my son.

>

> We¹ve got 2 hearings in Suffolk Co this week about thimerosal in

vaccines,

> I¹ve got a luncheon

> with Gov. Spitzer¹s wife on Friday, we might have to reschedule my

son¹s

> chelation appt. this week,

> I¹ve got to get 200 packets out for the LIAC tomorrow (got 40 done

so

> far)------ my priority is not what thinks.

> And the more we obsess over her- the more importance her comments

get. Yes-

> I know she speaks for AS.

> But when my son recovers it¹s not going to be because of AS or NAAR.

>

> Again- the videos will get done when I can get them done. Not mad

at you

> Sally. Just have a lot to do....

>

>

>

[Guest guest]

Has anyone seen him and Chen of the CDC at the same place at

the same time?... Hmmm.....

> > > > > > >

> > > > > > > Below is the testimony of Alison Tepper Singer before

The

> > > > Assembly

> > > > > > > Standing Committee On Mental Health, Mental

Retardation and

> > > > > > Development

> > > > > > > Disabilities and the Senate Standing Committee On

Mental

> > Health

> > > > And

> > > > > > > Developmental Disabilities on March 8, 2007.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > I have seen the many comments related thereto and

> > apparently

> > > > there

> > > > > > > seems to be a disconnect on what was said.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > On a related note I can add that the school Alison's

> > daughter

> > > > > attends

> > > > > > > is on the NYS list of approved private schools.Â

> > > Consequently,

> > > > it

> > > > > > is a

> > > > > > > district paid programs for children who need an out of

> > district

> > > > > > > placement as a result of the CSE's determination that

the

> > needs

> > > > of

> > > > > the

> > > > > > > child cannot be served in the local district or BOCES

> > > program.Â

> > > > > > >

> > > > > > > Â MARCH 8, 2007

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > TESTIMONY OF ALISON TEPPER SINGER

> > > > > > >

> > > > > > > SENIOR VICE PRESIDENT

> > > > > > >

> > > > > > > COMMUNICATIONS AND STRATEGY

> > > > > > >

> > > > > > > AUTISM SPEAKS

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > BEFORE

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH,

MENTAL

> > > > RETARDATION

> > > > > > > AND DEVELOPMENT DISABILITIES

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > AND

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND

> > DEVELOPMENTAL

> > > > > > > DISABILITIES

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > MARCH 8, 2007

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â Chairman and

> > > > > > Chairman Morahan, thank you for

> > > > > > > recognizing me and for holding this very important

hearing

> > > > today.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â My name is Alison

> > > > > > Singer. I am a resident of Westchester

> > > > > > > County and the Senior Vice President for

Communications and

> > > > Strategy

> > > > > > at

> > > > > > > Autism Speaks. Autism Speaks, the largest single

> > > organization

> > > > > > devoted

> > > > > > > to autism in the country, was founded in February 2005

by

> > Bob

> > > > and

> > > > > > > Suzanne of New York City who have a grandson

> > affected by

> > > > this

> > > > > > > disorder. Over the last two years, we have joined

forces

> > > with

> > > > > the

> > > > > > > National Alliance for Autism Research and, very

recently,

> > Cure

> > > > > Autism

> > > > > > > Now. I am here on behalf of tens of thousands of

parents

> > and

> > > > > > their

> > > > > > > children who belong to our organization.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â I am also here on

> > > > > behalf

> > > > > > of Jodie Singer, my nine year-old

> > > > > > > daughter, who suffers from autism, and Tepper,

my 42

> > > > year old

> > > > > > > brother with autism. Jodie truly is the sunshine in

my

> > life.

> > > > She

> > > > > > was

> > > > > > > diagnosed at age 2 ½ and received early intervention

> > > services

> > > > > > through

> > > > > > > the New York State Department of Health. She attended

a

> > > special

> > > > > > > education preschool and then received special education

> > > > services in

> > > > > > > public school. However, her needs simply could not be

met

> > by

> > > > the

> > > > > > > public school system and she is currently enrolled in

a

> > private

> > > > > school

> > > > > > > for children with autism, where she is making good

> > progress,

> > > > because

> > > > > > > there is staff trained to meet her unique learning

needs.

> > My

> > > > brother

> > > > > > > , a former victim of Willowbrook, is currently

> > living in a

> > > > > group

> > > > > > > home in Rockland County, where he participates in a

day

> > program

> > > > > > > delivering meals on wheels to home-bound citizens. In

the

> > > last

> > > > > > few

> > > > > > > years he has learned to swim and became toilet trained

in

> > his

> > > > > > thirties,

> > > > > > > proving that it is never too late to offer services to

> > persons

> > > > with

> > > > > > > autism across their lifespan.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â As you know,

> > > Chairmen,

> > > > > > my family is not alone in the struggle

> > > > > > > with autism spectrum disorder. Every twenty minutes,

> > another

> > > > > > child is

> > > > > > > diagnosed. According to the Centers for Disease

Control

> > and

> > > > > > > Protection, 1 in 150 children are diagnosed with

autism.

> > That

> > > > means

> > > > > > > that in every grade in every public school in New York

> > there is

> > > > > likely

> > > > > > > to be at least one child diagnosed with autism.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â Because of this

> > > > > > epidemic, Autism Speaks pushed very hard for

> > > > > > > passage of the Federal Combating Autism Act, which the

> > President

> > > > > > signed

> > > > > > > into law in December. The CAA authorizes nearly one

> > billion

> > > > > > dollars to

> > > > > > > fund research at the CDC, the Health Resources and

Services

> > > > > > > Administration, and the National Institutes of Health

into

> > the

> > > > > causes

> > > > > > > of autism, including environmental factors, and

evidence

> > based

> > > > > > > treatments for autism. Currently, there are no

effective

> > > means

> > > > > to

> > > > > > > prevent autism, no fully effective evidence based

> > treatments

> > > > except

> > > > > > > Applied Behavior Analysis (ABA), and no cure. It is

our

> > > fervent

> > > > > > hope

> > > > > > > that the CAA will help change that, and we urge the

New

> > York

> > > > > > > legislature to act on a companion bill. Given the

> > prevalence of

> > > > > autism

> > > > > > > spectrum disorders in the state, there is no reason

that

> > New

> > > > York

> > > > > > > should not be a research leader and respond to the

huge

> > demand

> > > > for

> > > > > > > evidence-based information regarding the education of

> > > > individuals

> > > > > with

> > > > > > > autism. We are in desperate need of evidence-based

> > > educational

> > > > > > > treatments. What we have now are collections of

> > > consensus-based

> > > > > > best

> > > > > > > practices. But without a research foundation, " best

> > > > > > practices " often

> > > > > > > amount to an exchange of testimonials and fads. With

good

> > > > > > marketing

> > > > > > > strategies, any method or approach can become the next

new

> > hot

> > > > > > therapy.

> > > > > > > Â School officials charged with the appropriation of

> > limited

> > > > > > resources

> > > > > > > and expending public funds need to know what

interventions

> > are

> > > > > likely

> > > > > > > to work with students with specific profiles. The

> > > opportunists

> > > > > > that

> > > > > > > are looking for a quick buck abound and are feeding on

> > these

> > > > > families'

> > > > > > > " hopes " for quick answers or cures.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > The No Child Left Behind Act and other such

legislationÂ

> > > require

> > > > > > schools

> > > > > > > to attend to and sufficiently fund programs that will

> > > > > promoteÂ

> > > > > > academic

> > > > > > > skills. On the other hand, programs and opportunities

that

> > > > allow

> > > > > > for

> > > > > > > the development of life skills are being

> > > reduced.Â

> > > > > > Traditional " shop "

> > > > > > > programs seen at the high school level, for example,

have

> > become

> > > > > > > " technologized " to the point that an understanding of

> > computer

> > > > > > > technology and physics is required. Hence, as school

> > > > > > districts ratchet

> > > > > > > up their education programs, young adults with autism

and

> > other

> > > > > > related

> > > > > > > disabilities are being further disadvantaged.Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Research based programs are needed to help guide school

> > > > districts in

> > > > > > > program development and implementation, as well as in

> > program

> > > > > > design.Â

> > > > > > > Funding needs to be earmarked to help establish

centers

> > that

> > > > will

> > > > > > > develop basic competencies in those individuals for

whom

> > > > college is

> > > > > > not

> > > > > > > in the future but who have the capability to be

functional

> > > > > members

> > > > > > in

> > > > > > > our communities. Such centers need to include career

> > > counselors

> > > > > > and

> > > > > > > placement services. Finally, with the number of

children

> > > with

> > > > > > autism

> > > > > > > rising and more and more of those children being

educated

> > in

> > > > > > mainstream

> > > > > > > public school classes, teacher training for all

mainstream

> > > > teachers

> > > > > > > regarding how to work appropriately with students with

> > autism is

> > > > > > > necessary.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â But funding

> > > educational

> > > > > > research is just a first step.Â

> > > > > > > Please allow me to suggest several other areas that

your

> > > > committees

> > > > > > may

> > > > > > > want to consider:

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > ·       First, families that are

> > > > > > affected by autism need insurance

> > > > > > > coverage. By and large, insurance companies do not

> > reimburse

> > > > > > parents

> > > > > > > for the diagnosis, treatment, and services associated

with

> > > > spectrum

> > > > > > > disorders. At Autism Speaks, we do not believe in

> > > competition

> > > > in

> > > > > > human

> > > > > > > misery. But while health plans cover the broken legs

and

> > > broken

> > > > > > arms

> > > > > > > of healthy kids, they do not cover the costs of

treating a

> > child

> > > > > with

> > > > > > > autism. That's just plain wrong. You have the

> > > opportunity to

> > > > > > change

> > > > > > > that by mandating insurance coverage for evidence based

> > > > treatments

> > > > > of

> > > > > > > autism.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > ·       Second, New York should

> > > become

> > > > > a

> > > > > > leader in providing services

> > > > > > > to families who live with autism. One of Autism

Speaks'

> > > highest

> > > > > > > priorities in Washington this year will be a follow-on

to

> > the

> > > > > > Combating

> > > > > > > Autism Act in the form of a state grant program to fund

> > > > services and

> > > > > > > treatment programs. We urge you to get ahead of

Congress

> > and

> > > > > pass

> > > > > > > legislation that will allocate resources to ensure

that

> > people

> > > > > > > suffering from ASD can be meaningful members of their

> > > > communities.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > ·       Third, although not

> > > necessarily

> > > > > > in the purview of your

> > > > > > > committees, we strongly recommend revisions to the tax

> > code that

> > > > > would

> > > > > > > benefit families with autistic children. Mothers and

> > fathers

> > > > > will

> > > > > > not

> > > > > > > be around forever, and without a cure, autism will

stay

> > with

> > > > someone

> > > > > > > for life. We can use the tax laws to fund pre-tax

accounts

> > > that

> > > > > > allow

> > > > > > > parents to provide for their kids, just as mothers and

> > fathers

> > > > can

> > > > > > save

> > > > > > > for college educations.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > ·       Finally, there is great

> > > concern

> > > > > > among families of children

> > > > > > > with autism that New York State Ed's interpretation of

the

> > > > > Individuals

> > > > > > > with Disabilities Educational Improvement Act (IDEIA)

will

> > mean

> > > > that

> > > > > > > children whose school districts cannot provide

appropriate

> > > > > placements

> > > > > > > within the district and who have to attend school

outside

> > of

> > > > their

> > > > > > home

> > > > > > > district will no longer be the responsibility of the

school

> > > > district

> > > > > > in

> > > > > > > which their parents reside and pay taxes, but rather

the

> > school

> > > > > > > district in which the new school the child attends is

> > physically

> > > > > > > located. For example, if I live in Scarsdale and my

> > daughter

> > > > > > attends

> > > > > > > an autism program at a school in Eastchester,

> > responsibility for

> > > > > > > reviewing her annual progress and evaluating her

ongoing

> > needs

> > > > is

> > > > > > > transferred to Eastchester, which may or may not

decide

> > that

> > > > > > > Eastchester is even appropriate. While I understand

that

> > this

> > > > > > provision

> > > > > > > was implemented as part of the Child Find program, it

will

> > have

> > > > > > > devastating consequences for families and children,

and

> > will

> > > > result

> > > > > in

> > > > > > > decreased accountability for the education of the most

> > fragile

> > > > of

> > > > > > > children. It also places an undue burden on the

districts

> > that

> > > > have

> > > > > > > stepped up and created appropriate programs for

children

> > with

> > > > > autism.

> > > > > > I

> > > > > > > urge you to recommend that State Education not

implement

> > this

> > > > > change.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Chairman and Chairman Morahan, Members of both

> > > > Committees,

> > > > > > thank

> > > > > > > you again for the opportunity to testify today. All

of us

> > at

> > > > > > Autism

> > > > > > > Speaks look forward to working with you on responding

to

> > the

> > > > urgent

> > > > > > > health crisis in autism. We stand ready to help you

in all

> > > of

> > > > > > your

> > > > > > > efforts. Thank you.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

My involvement with the Long Island Group of AS is zero. I still go to the walks but no longer have any meaningful participation.

On a National Level I maintain a dialogue with Alison and others and fully express my views on many issues. AS has some very talented individuals but also some horrific carry-over staff from NAAR.

So essentially I try to contribute where I can on a national level and stay away from the local politics.

Marty

> > > > > > > > > > > Heidi, you are absolutely correct in that AS can't be all things to everyone.> > But for sake of fairness, I think some of her comments are taken a bit out of> > context.> > You state "She points out that there are no treatments for autism and then she> > asks for insurance coverage for treatments for autism. "> > What she said is there "Currently, there are no effective means to prevent> > autism, no fully effective evidence based treatments except Applied Behavior> > Analysis (ABA), and no cure." I am not arguing the validity of the statement> > and of course anyone is free to disagree but stating there are no fully> > effective treatments is not the same as no treatments.> > As for the insurance issue, she argues for "mandating insurance coverage for> > evidence based treatments of autism." What I see here is possibly getting> > hung up on semantics. I read it as her arguing for covering all evidence> > based treatments whether or not is fully effective as is common in many> > medical treatments.> > I guess the million dollar question is what evidence based treatments would> > be argued for in a mandate. That is very worthy of further discussion and is> > something to be considered as discussions are held with legislators in variou> > states regarding future autism bills.> > Marty> > > >>

[Guest guest]

Since she didn't give us examples we can only guess what she means. I wish that someone in her position would focus on the difference between educational and medical interventions.

From: "martinx2us" <martyx2@...>Reply-EOHarm To: EOHarm Subject: Re: NYS Albany Hearing 3/8/2007Date: Mon, 12 Mar 2007 02:26:18 -0000

Heidi, you are absolutely correct in that AS can't be all things to everyone. But for sake of fairness, I think some of her comments are taken a bit out of context.

You state "She points out that there are no treatments for autism and then she asks for insurance coverage for treatments for autism. "

What she said is there "Currently, there are no effective means to prevent autism, no fully effective evidence based treatments except Applied Behavior Analysis (ABA), and no cure." I am not arguing the validity of the statement and of course anyone is free to disagree but stating there are no fully effective treatments is not the same as no treatments.

As for the insurance issue, she argues for "mandating insurance coverage for evidence based treatments of autism." What I see here is possibly getting hung up on semantics. I read it as her arguing for covering all evidence based treatments whether or not is fully effective as is common in many medical treatments.

I guess the million dollar question is what evidence based treatments would be argued for in a mandate. That is very worthy of further discussion and is something to be considered as discussions are held with legislators in variou states regarding future autism bills.

Marty

[Guest guest]

do the "cured" children still require any medical interventions?

From: " Hooker" <brian@...>Reply-EOHarm To: EOHarm Subject: Re: NYS Albany Hearing 3/8/2007Date: Mon, 12 Mar 2007 02:33:00 -0000

BTW - I think it would be best for Autism Speaks to be no things to no one... Their inability to fund relevant research means in essence they have a negative effect on the community - Sort of like the CDC using tax dollars to "prove" the hypothesis that there is no autism epidemic.> >> > > > Heidi, you are absolutely correct in that AS can't be all things to> > everyone. But for sake of fairness, I think some of her comments > are> > taken a bit out of context.> > > > You state "She points out that there are no treatments for autism> > and then she asks for insurance coverage for treatments for autism.> > "> > > > What she said is there "Currently, there are no effective means > to> > prevent autism, no fully effective evidence based treatments except> > Applied Behavior Analysis (ABA), and no cure." I am not arguing > the> > validity of the statement and of course anyone is free to disagree > but> > stating there are no fully effective treatments is not the same as > no> > treatments.> > > > As for the insurance issue, she argues for "mandating insurance> > coverage for evidence based treatments of autism." What I see here> > is possibly getting hung up on semantics. I read it as her > arguing for> > covering all evidence based treatments whether or not is fully > effective> > as is common in many medical treatments.> > > > I guess the million dollar question is what evidence based > treatments> > would be argued for in a mandate. That is very worthy of further> > discussion and is something to be considered as discussions are > held> > with legislators in variou states regarding future autism bills.> > > > Marty> >>

[Guest guest]

Karyn Seroussi says, last I heard anyway, that her son is cured but

still has to be gfcf.

Debi

[Guest guest]

> > > > > > >

> > > > > > > Below is the testimony of Alison Tepper Singer before The

> > > > Assembly

> > > > > > > Standing Committee On Mental Health, Mental Retardation and

> > > > > > Development

> > > > > > > Disabilities and the Senate Standing Committee On Mental

> > Health

> > > > And

> > > > > > > Developmental Disabilities on March 8, 2007.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > I have seen the many comments related thereto and

> > apparently

> > > > there

> > > > > > > seems to be a disconnect on what was said.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > On a related note I can add that the school Alison's

> > daughter

> > > > > attends

> > > > > > > is on the NYS list of approved private schools.Â

> > > Consequently,

> > > > it

> > > > > > is a

> > > > > > > district paid programs for children who need an out of

> > district

> > > > > > > placement as a result of the CSE's determination that the

> > needs

> > > > of

> > > > > the

> > > > > > > child cannot be served in the local district or BOCES

> > > program.Â

> > > > > > >

> > > > > > > Â MARCH 8, 2007

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > TESTIMONY OF ALISON TEPPER SINGER

> > > > > > >

> > > > > > > SENIOR VICE PRESIDENT

> > > > > > >

> > > > > > > COMMUNICATIONS AND STRATEGY

> > > > > > >

> > > > > > > AUTISM SPEAKS

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > BEFORE

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > THE ASSEMBLY STANDING COMMITTEE ON MENTAL HEALTH, MENTAL

> > > > RETARDATION

> > > > > > > AND DEVELOPMENT DISABILITIES

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > AND

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > THE SENATE STANDING COMMITTEE ON MENTAL HEALTH AND

> > DEVELOPMENTAL

> > > > > > > DISABILITIES

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > MARCH 8, 2007

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â Chairman and

> > > > > > Chairman Morahan, thank you for

> > > > > > > recognizing me and for holding this very important hearing

> > > > today.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â My name is Alison

> > > > > > Singer. I am a resident of Westchester

> > > > > > > County and the Senior Vice President for Communications and

> > > > Strategy

> > > > > > at

> > > > > > > Autism Speaks. Autism Speaks, the largest single

> > > organization

> > > > > > devoted

> > > > > > > to autism in the country, was founded in February 2005 by

> > Bob

> > > > and

> > > > > > > Suzanne of New York City who have a grandson

> > affected by

> > > > this

> > > > > > > disorder. Over the last two years, we have joined forces

> > > with

> > > > > the

> > > > > > > National Alliance for Autism Research and, very recently,

> > Cure

> > > > > Autism

> > > > > > > Now. I am here on behalf of tens of thousands of parents

> > and

> > > > > > their

> > > > > > > children who belong to our organization.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â I am also here on

> > > > > behalf

> > > > > > of Jodie Singer, my nine year-old

> > > > > > > daughter, who suffers from autism, and Tepper, my 42

> > > > year old

> > > > > > > brother with autism. Jodie truly is the sunshine in my

> > life.

> > > > She

> > > > > > was

> > > > > > > diagnosed at age 2 ½ and received early intervention

> > > services

> > > > > > through

> > > > > > > the New York State Department of Health. She attended a

> > > special

> > > > > > > education preschool and then received special education

> > > > services in

> > > > > > > public school. However, her needs simply could not be met

> > by

> > > > the

> > > > > > > public school system and she is currently enrolled in a

> > private

> > > > > school

> > > > > > > for children with autism, where she is making good

> > progress,

> > > > because

> > > > > > > there is staff trained to meet her unique learning needs.

> > My

> > > > brother

> > > > > > > , a former victim of Willowbrook, is currently

> > living in a

> > > > > group

> > > > > > > home in Rockland County, where he participates in a day

> > program

> > > > > > > delivering meals on wheels to home-bound citizens. In the

> > > last

> > > > > > few

> > > > > > > years he has learned to swim and became toilet trained in

> > his

> > > > > > thirties,

> > > > > > > proving that it is never too late to offer services to

> > persons

> > > > with

> > > > > > > autism across their lifespan.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â As you know,

> > > Chairmen,

> > > > > > my family is not alone in the struggle

> > > > > > > with autism spectrum disorder. Every twenty minutes,

> > another

> > > > > > child is

> > > > > > > diagnosed. According to the Centers for Disease Control

> > and

> > > > > > > Protection, 1 in 150 children are diagnosed with autism.

> > That

> > > > means

> > > > > > > that in every grade in every public school in New York

> > there is

> > > > > likely

> > > > > > > to be at least one child diagnosed with autism.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â Because of this

> > > > > > epidemic, Autism Speaks pushed very hard for

> > > > > > > passage of the Federal Combating Autism Act, which the

> > President

> > > > > > signed

> > > > > > > into law in December. The CAA authorizes nearly one

> > billion

> > > > > > dollars to

> > > > > > > fund research at the CDC, the Health Resources and Services

> > > > > > > Administration, and the National Institutes of Health into

> > the

> > > > > causes

> > > > > > > of autism, including environmental factors, and evidence

> > based

> > > > > > > treatments for autism. Currently, there are no effective

> > > means

> > > > > to

> > > > > > > prevent autism, no fully effective evidence based

> > treatments

> > > > except

> > > > > > > Applied Behavior Analysis (ABA), and no cure. It is our

> > > fervent

> > > > > > hope

> > > > > > > that the CAA will help change that, and we urge the New

> > York

> > > > > > > legislature to act on a companion bill. Given the

> > prevalence of

> > > > > autism

> > > > > > > spectrum disorders in the state, there is no reason that

> > New

> > > > York

> > > > > > > should not be a research leader and respond to the huge

> > demand

> > > > for

> > > > > > > evidence-based information regarding the education of

> > > > individuals

> > > > > with

> > > > > > > autism. We are in desperate need of evidence-based

> > > educational

> > > > > > > treatments. What we have now are collections of

> > > consensus-based

> > > > > > best

> > > > > > > practices. But without a research foundation, " best

> > > > > > practices " often

> > > > > > > amount to an exchange of testimonials and fads. With good

> > > > > > marketing

> > > > > > > strategies, any method or approach can become the next new

> > hot

> > > > > > therapy.

> > > > > > > Â School officials charged with the appropriation of

> > limited

> > > > > > resources

> > > > > > > and expending public funds need to know what interventions

> > are

> > > > > likely

> > > > > > > to work with students with specific profiles. The

> > > opportunists

> > > > > > that

> > > > > > > are looking for a quick buck abound and are feeding on

> > these

> > > > > families'

> > > > > > > " hopes " for quick answers or cures.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > The No Child Left Behind Act and other such legislationÂ

> > > require

> > > > > > schools

> > > > > > > to attend to and sufficiently fund programs that will

> > > > > promoteÂ

> > > > > > academic

> > > > > > > skills. On the other hand, programs and opportunities that

> > > > allow

> > > > > > for

> > > > > > > the development of life skills are being

> > > reduced.Â

> > > > > > Traditional " shop "

> > > > > > > programs seen at the high school level, for example, have

> > become

> > > > > > > " technologized " to the point that an understanding of

> > computer

> > > > > > > technology and physics is required. Hence, as school

> > > > > > districts ratchet

> > > > > > > up their education programs, young adults with autism and

> > other

> > > > > > related

> > > > > > > disabilities are being further disadvantaged.Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Research based programs are needed to help guide school

> > > > districts in

> > > > > > > program development and implementation, as well as in

> > program

> > > > > > design.Â

> > > > > > > Funding needs to be earmarked to help establish centers

> > that

> > > > will

> > > > > > > develop basic competencies in those individuals for whom

> > > > college is

> > > > > > not

> > > > > > > in the future but who have the capability to be functional

> > > > > members

> > > > > > in

> > > > > > > our communities. Such centers need to include career

> > > counselors

> > > > > > and

> > > > > > > placement services. Finally, with the number of children

> > > with

> > > > > > autism

> > > > > > > rising and more and more of those children being educated

> > in

> > > > > > mainstream

> > > > > > > public school classes, teacher training for all mainstream

> > > > teachers

> > > > > > > regarding how to work appropriately with students with

> > autism is

> > > > > > > necessary.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â Â Â Â Â Â Â Â Â But funding

> > > educational

> > > > > > research is just a first step.Â

> > > > > > > Please allow me to suggest several other areas that your

> > > > committees

> > > > > > may

> > > > > > > want to consider:

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > ·       First, families that are

> > > > > > affected by autism need insurance

> > > > > > > coverage. By and large, insurance companies do not

> > reimburse

> > > > > > parents

> > > > > > > for the diagnosis, treatment, and services associated with

> > > > spectrum

> > > > > > > disorders. At Autism Speaks, we do not believe in

> > > competition

> > > > in

> > > > > > human

> > > > > > > misery. But while health plans cover the broken legs and

> > > broken

> > > > > > arms

> > > > > > > of healthy kids, they do not cover the costs of treating a

> > child

> > > > > with

> > > > > > > autism. That's just plain wrong. You have the

> > > opportunity to

> > > > > > change

> > > > > > > that by mandating insurance coverage for evidence based

> > > > treatments

> > > > > of

> > > > > > > autism.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > ·       Second, New York should

> > > become

> > > > > a

> > > > > > leader in providing services

> > > > > > > to families who live with autism. One of Autism Speaks'

> > > highest

> > > > > > > priorities in Washington this year will be a follow-on to

> > the

> > > > > > Combating

> > > > > > > Autism Act in the form of a state grant program to fund

> > > > services and

> > > > > > > treatment programs. We urge you to get ahead of Congress

> > and

> > > > > pass

> > > > > > > legislation that will allocate resources to ensure that

> > people

> > > > > > > suffering from ASD can be meaningful members of their

> > > > communities.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > ·       Third, although not

> > > necessarily

> > > > > > in the purview of your

> > > > > > > committees, we strongly recommend revisions to the tax

> > code that

> > > > > would

> > > > > > > benefit families with autistic children. Mothers and

> > fathers

> > > > > will

> > > > > > not

> > > > > > > be around forever, and without a cure, autism will stay

> > with

> > > > someone

> > > > > > > for life. We can use the tax laws to fund pre-tax accounts

> > > that

> > > > > > allow

> > > > > > > parents to provide for their kids, just as mothers and

> > fathers

> > > > can

> > > > > > save

> > > > > > > for college educations.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > ·       Finally, there is great

> > > concern

> > > > > > among families of children

> > > > > > > with autism that New York State Ed's interpretation of the

> > > > > Individuals

> > > > > > > with Disabilities Educational Improvement Act (IDEIA) will

> > mean

> > > > that

> > > > > > > children whose school districts cannot provide appropriate

> > > > > placements

> > > > > > > within the district and who have to attend school outside

> > of

> > > > their

> > > > > > home

> > > > > > > district will no longer be the responsibility of the school

> > > > district

> > > > > > in

> > > > > > > which their parents reside and pay taxes, but rather the

> > school

> > > > > > > district in which the new school the child attends is

> > physically

> > > > > > > located. For example, if I live in Scarsdale and my

> > daughter

> > > > > > attends

> > > > > > > an autism program at a school in Eastchester,

> > responsibility for

> > > > > > > reviewing her annual progress and evaluating her ongoing

> > needs

> > > > is

> > > > > > > transferred to Eastchester, which may or may not decide

> > that

> > > > > > > Eastchester is even appropriate. While I understand that

> > this

> > > > > > provision

> > > > > > > was implemented as part of the Child Find program, it will

> > have

> > > > > > > devastating consequences for families and children, and

> > will

> > > > result

> > > > > in

> > > > > > > decreased accountability for the education of the most

> > fragile

> > > > of

> > > > > > > children. It also places an undue burden on the districts

> > that

> > > > have

> > > > > > > stepped up and created appropriate programs for children

> > with

> > > > > autism.

> > > > > > I

> > > > > > > urge you to recommend that State Education not implement

> > this

> > > > > change.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Chairman and Chairman Morahan, Members of both

> > > > Committees,

> > > > > > thank

> > > > > > > you again for the opportunity to testify today. All of us

> > at

> > > > > > Autism

> > > > > > > Speaks look forward to working with you on responding to

> > the

> > > > urgent

> > > > > > > health crisis in autism. We stand ready to help you in all

> > > of

> > > > > > your

> > > > > > > efforts. Thank you.

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > > > Â

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

>

> Has anyone seen him and Chen of the CDC at the same place at

> the same time?... Hmmm.....

>

These racial stereotypes really makes my Polish blood boil.

Lenny

[Guest guest]

While some may argue about IF she said anything about genetics, In her written testimony, Ms. Singer states:

The CAA authorizes nearly one billion dollars to fund research at the CDC, the Health Resources and Services Administration, and the National Institutes of Health into the causes of autism, including environmental factors, and evidence based treatments for autism.

Currently, there are no effective means to prevent autism, no fully effective evidence based treatments except Applied Behavior Analysis (ABA), and no cure.

I personally think these two statements are a declaration of war against anyone who believes in the mercury/vaccine linkage, as well as anyone who adheres to a biomedical approach to helping their children. If this is where AS/CAN stands, then there are a lot of parents and caregivers in their sights.

Harry Hofherr

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

Don't let it boil too long Lenny. I'm not really a fan of Polish

blood sausage...

> >

> > Has anyone seen him and Chen of the CDC at the same place

at

> > the same time?... Hmmm.....

> >

>

> These racial stereotypes really makes my Polish blood boil.

>

> Lenny

>

[Guest guest]

Autism Speaks should continue to show/educate people on how many autistic children there are.

After that, if they can't speak without corrupting the research and issues- they should just say nothing.

Re: NYS Albany Hearing 3/8/2007

BTW - I think it would be best for Autism Speaks to be no things to no one... Their inability to fund relevant research means in essence they have a negative effect on the community - Sort of like the CDC using tax dollars to "prove" the hypothesis that there is no autism epidemic.> >> > > > Heidi, you are absolutely correct in that AS can't be all things to> > everyone. But for sake of fairness, I think some of her comments > are> > taken a bit out of context.> > > > You state "She points out that there are no treatments for autism> > and then she asks for insurance coverage for treatments for autism.> > "> > > > What she said is there "Currently, there are no effective means > to> > prevent autism, no fully effective evidence based treatments except> > Applied Behavior Analysis (ABA), and no cure." I am not arguing > the> > validity of the statement and of course anyone is free to disagree > but> > stating there are no fully effective treatments is not the same as > no> > treatments.> > > > As for the insurance issue, she argues for "mandating insurance> > coverage for evidence based treatments of autism." What I see here> > is possibly getting hung up on semantics. I read it as her > arguing for> > covering all evidence based treatments whether or not is fully > effective> > as is common in many medical treatments.> > > > I guess the million dollar question is what evidence based > treatments> > would be argued for in a mandate. That is very worthy of further> > discussion and is something to be considered as discussions are > held> > with legislators in variou states regarding future autism bills.> > > > Marty> >>

[Guest guest]

Yup - that should require about $100. What to do with their

remaining $11 million annual operating budget? Disburse it to

parents who can't make ends meet?

> > >

> > >

> > > Heidi, you are absolutely correct in that AS can't be all

things

> to

> > > everyone. But for sake of fairness, I think some of her

> comments

> > are

> > > taken a bit out of context.

> > >

> > > You state " She points out that there are no treatments for

autism

> > > and then she asks for insurance coverage for treatments for

> autism.

> > > "

> > >

> > > What she said is there " Currently, there are no effective

> means

> > to

> > > prevent autism, no fully effective evidence based treatments

> except

> > > Applied Behavior Analysis (ABA), and no cure. " I am not

arguing

> > the

> > > validity of the statement and of course anyone is free to

> disagree

> > but

> > > stating there are no fully effective treatments is not the

same

> as

> > no

> > > treatments.

> > >

> > > As for the insurance issue, she argues for " mandating

insurance

> > > coverage for evidence based treatments of autism. " What I

see

> here

> > > is possibly getting hung up on semantics. I read it as her

> > arguing for

> > > covering all evidence based treatments whether or not is

fully

> > effective

> > > as is common in many medical treatments.

> > >

> > > I guess the million dollar question is what evidence based

> > treatments

> > > would be argued for in a mandate. That is very worthy of

further

> > > discussion and is something to be considered as discussions

are

> > held

> > > with legislators in variou states regarding future autism

bills.

> > >

> > > Marty

> > >

> >

>

[Guest guest]

I thought it was an allusion to Austin Powers and mini-me.

Re: NYS Albany Hearing 3/8/2007

>> Has anyone seen him and Chen of the CDC at the same place at > the same time?... Hmmm.....> These racial stereotypes really makes my Polish blood boil.Lenny

[Guest guest]

Absolutely. At least it will be used for something useful.

I guess the same advice applies to both Congress and Autism Speaks.

Re: NYS Albany Hearing 3/8/2007

Yup - that should require about $100. What to do with their remaining $11 million annual operating budget? Disburse it to parents who can't make ends meet?> > >> > > > > > Heidi, you are absolutely correct in that AS can't be all things > to> > > everyone. But for sake of fairness, I think some of her > comments > > are> > > taken a bit out of context.> > > > > > You state "She points out that there are no treatments for autism> > > and then she asks for insurance coverage for treatments for > autism.> > > "> > > > > > What she said is there "Currently, there are no effective > means > > to> > > prevent autism, no fully effective evidence based treatments > except> > > Applied Behavior Analysis (ABA), and no cure." I am not arguing > > the> > > validity of the statement and of course anyone is free to > disagree > > but> > > stating there are no fully effective treatments is not the same > as > > no> > > treatments.> > > > > > As for the insurance issue, she argues for "mandating insurance> > > coverage for evidence based treatments of autism." What I see > here> > > is possibly getting hung up on semantics. I read it as her > > arguing for> > > covering all evidence based treatments whether or not is fully > > effective> > > as is common in many medical treatments.> > > > > > I guess the million dollar question is what evidence based > > treatments> > > would be argued for in a mandate. That is very worthy of further> > > discussion and is something to be considered as discussions are > > held> > > with legislators in variou states regarding future autism bills.> > > > > > Marty> > >> >>

[Guest guest]

You know, I sat there and listened to about 30-40 people speak. There were a few who kept saying “evidence based treatments” and how ABA is the only thing that works and it’s just NOT true.

ABA (trials or vb) does not work with every child

Some people can’t find good ABA therapists

And Biomed has done more for my child then the crappy ABA he did get when he was little (a few hours a week)

His school based program has worked VERY well- but it’s not true “ABA” and he definitely doesn’t do trials. (lots of d’s in that statement)

I’ve said this a million times- when we took gluten, casein and soy out of my son’s diet he

stopped rubbing his face on the floor

slept thru the night

never got another ear infection

better eye contact and language

But let’s not TEST these diets! It’s freggin’ child abuse to have something that MAY work and with hold that information from parents.

I do my best to spread the word- but people just don’t get that you need a balance when it comes to the kids— oh ya- and the research has to be balanced too. Again- preaching to the choir here

On 3/12/07 9:38 AM, " hhofher@... " <hhofher@...> wrote:

While some may argue about IF she said anything about genetics, In her written testimony, Ms. Singer states:

The CAA authorizes nearly one billion dollars to fund research at the CDC, the Health Resources and Services Administration, and the National Institutes of Health into the causes of autism, including environmental factors, and evidence based treatments for autism.

Currently, there are no effective means to prevent autism, no fully effective evidence based treatments except Applied Behavior Analysis (ABA), and no cure.

I personally think these two statements are a declaration of war against anyone who believes in the mercury/vaccine linkage, as well as anyone who adheres to a biomedical approach to helping their children. If this is where AS/CAN stands, then there are a lot of parents and caregivers in their sights.

Harry Hofherr

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com <http://www.aol.com?ncid=AOLAOF00020000000339> .

[Guest guest]

What's TRUTH got to do with it?

Re: Re: NYS Albany Hearing 3/8/2007

You know, I sat there and listened to about 30-40 people speak. There were a few who kept saying “evidence based treatments” and how ABA is the only thing that works and it’s just NOT true.ABA (trials or vb) does not work with every childSome people can’t find good ABA therapistsAnd Biomed has done more for my child then the crappy ABA he did get when he was little (a few hours a week)His school based program has worked VERY well- but it’s not true “ABA” and he definitely doesn’t do trials. (lots of d’s in that statement)I’ve said this a million times- when we took gluten, casein and soy out of my son’s diet he

stopped rubbing his face on the floor

slept thru the night

never got another ear infection

better eye contact and languageBut let’s not TEST these diets! It’s freggin’ child abuse to have something that MAY work and with hold that information from parents.I do my best to spread the word- but people just don’t get that you need a balance when it comes to the kids— oh ya- and the research has to be balanced too. Again- preaching to the choir here :)On 3/12/07 9:38 AM, "hhofheraol" <hhofheraol> wrote:

While some may argue about IF she said anything about genetics, In her written testimony, Ms. Singer states: The CAA authorizes nearly one billion dollars to fund research at the CDC, the Health Resources and Services Administration, and the National Institutes of Health into the causes of autism, including environmental factors, and evidence based treatments for autism. Currently, there are no effective means to prevent autism, no fully effective evidence based treatments except Applied Behavior Analysis (ABA), and no cure. I personally think these two statements are a declaration of war against anyone who believes in the mercury/vaccine linkage, as well as anyone who adheres to a biomedical approach to helping their children. If this is where AS/CAN stands, then there are a lot of parents and caregivers in their sights. Harry Hofherr

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com <http://www.aol.com?ncid=AOLAOF00020000000339> .

[Guest guest]

Harry, I fully agree, but the war was declared long ago – CAA was a

battle along the way, and the assaults continue. This is a mere

reiteration of the attacks on our reality and experience with our kids

that are longstanding. Also, praise for the Combating Autism Act in

the context of the NYS hearing was truly beside the point. The

Combating Autism Act has no funding for the near future. How does it

address issues like those so well presented by the Careys? The CAA's

importance continues to be inflated as a means to address the problems

our kids face. Also, the evidence on ABA is decidedly mixed as a

treatment. If research money were dedicated to other treatments we

would have more evidence, and there does exist evidence supporting

other treatments. Treatments for autistic enterocolitis are helping

many children.

Thanks for pointing this out so clearly.

Bob K.

On Mar 12, 2007, at 9:38 AM, hhofher@... wrote:

While some may argue about IF she said anything about genetics, In her

written testimony, Ms. Singer states:

 

The CAA authorizes nearly one billion dollars to fund research at the

CDC, the Health Resources and Services Administration, and the National

Institutes of Health into the causes of autism, including environmental

factors, and evidence based treatments for autism. 

 

Currently, there are no effective means to prevent autism, no fully

effective evidence based treatments except Applied Behavior Analysis

(ABA), and no cure.

 

 

I personally think these two statements are a declaration of war

against anyone who believes in the mercury/vaccine linkage, as well as

anyone who adheres to a biomedical approach to helping their children.

If this is where AS/CAN stands, then there are a lot of parents and

caregivers in their sights.

 

Harry Hofherr