autism speaks

[Guest guest]

I never said I didn't support ABA. What I did say is that it's one of the most

scientifically-proven treatments out there. You may not know me that well, but I

tend to be big supporters of proven treatments. Of which, I'm a HUGE supporter

of ABA & fought early intervention & preschool to get it for my daughter. I

don't know why you think I wouldn't support it.

Also, you are welcome to disagree on my statement that AS is trying to get

prenatal screening for autism. However, AS is in fact attempting that very thing

as stated below.

You are welcome to disagree all you want and even welcome to misuderstand what I

post, and I will piss & moan all I want about how AS is robbing areas of local

funding to fuel their stupid studies that aren't helping kids, unlike therapies

and biomed.

Debi

http://www.autismspeaks.org/science/science_news/dawson_year_in_science_2008.php

2008 Autism Science Achievements...

" ...These scientists measured maternal antibody reactivity to the fetus during

mid-pregnancy in mothers who had participated in a prenatal screening program in

California. They found that mothers whose children developed autism had higher

levels of this immune marker during pregnancy. Similar results were reported

from a group at s Hopkins University. Autism Speaks continues to fund a wide

range of research on early detection of autism based on both behavioral and

biological markers, including how these immune markers interact with genes

identified as risk factors. "

http://www.autismspeaks.org/science/research/initiatives/environmental_factors_g\

rants.php

initiatives AS is funding:

PI: Windham (Pilot Award, 2006)

Autism and Prenatal Hormone Markers ($60,000)

The California Department of Health Services is currently tracking the

prevalence and demographic characteristics of autism. This data will be linked

to hormone and protein markers measured during pregnancy. This is made possible

though the California prenatal screening program, in which several hormones or

protein markers were measured in maternal blood during the second trimester. In

the proposed study, the levels of these hormone/protein in nearly 2,000 pregnant

women and their offspring who are later diagnosed with autism, compared to the

nearly 600,000 screened births during the same two years. Although hormonal

factors have been frequently suggested as contributing to the occurrence or

severity of autism, few studies have investigated this hypothesis.

What this means for people with autism: The results will help shape further

research to rigorously evaluate complex interactions between genetic factors, in

utero hormonal factors, and environmental factors in relation to autism. In

addition to the analyses proposed, the investigators have numerous opportunities

for follow-up, including examining similar parameters in other birth years,

examining other newborn screening markers, and potentially obtaining newborn

blood spots for genotyping. The proposed study provides a unique and

cost-effective opportunity explore important data on a very large

http://www.ageofautism.com/2008/07/autism-speaks-t.html

.... " So, here you go, I'm just going to say it. I predict, in the next 50 years,

that the only output from the hundreds of millions of dollars spent on genetic

therapy will be a test for pregnant mothers that will lead to some parents

aborting their children because of a potential risk of autism.

It's a baffling, colossal waste of time, money, and focus. "

Debi's note: I don't know if this was AS funded or not.

http://www.marieclaire.co.uk/news/health/297446/prenatal-screening-for-autism-a-\

step-closer.html

Prenatal screening for autism moved a step closer to being made possible after

scientists discovered ways of potentially identifying the condition in unborn

babies.

New research, released today, has found that high levels of testosterone in the

amniotic fluid of pregnant women was linked to autistic traits in their

children.

These findings mean that soon-to-be parents would be able test to see if their

unborn baby has autism, which would then allow them to take the controversial

decision to terminate the pregnancy.

> >

> > cathy so they do not support research in areas of biomedical b ut yet claim

they are of seeking the cure? how can they cure something they do not treat in

theory?

> > sondra

> >

>

>

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[Guest guest]

I never said I didn't support ABA. What I did say is that it's one of the most

scientifically-proven treatments out there. You may not know me that well, but I

tend to be big supporters of proven treatments. Of which, I'm a HUGE supporter

of ABA & fought early intervention & preschool to get it for my daughter. I

don't know why you think I wouldn't support it.

Also, you are welcome to disagree on my statement that AS is trying to get

prenatal screening for autism. However, AS is in fact attempting that very thing

as stated below.

You are welcome to disagree all you want and even welcome to misuderstand what I

post, and I will piss & moan all I want about how AS is robbing areas of local

funding to fuel their stupid studies that aren't helping kids, unlike therapies

and biomed.

Debi

http://www.autismspeaks.org/science/science_news/dawson_year_in_science_2008.php

2008 Autism Science Achievements...

" ...These scientists measured maternal antibody reactivity to the fetus during

mid-pregnancy in mothers who had participated in a prenatal screening program in

California. They found that mothers whose children developed autism had higher

levels of this immune marker during pregnancy. Similar results were reported

from a group at s Hopkins University. Autism Speaks continues to fund a wide

range of research on early detection of autism based on both behavioral and

biological markers, including how these immune markers interact with genes

identified as risk factors. "

http://www.autismspeaks.org/science/research/initiatives/environmental_factors_g\

rants.php

initiatives AS is funding:

PI: Windham (Pilot Award, 2006)

Autism and Prenatal Hormone Markers ($60,000)

The California Department of Health Services is currently tracking the

prevalence and demographic characteristics of autism. This data will be linked

to hormone and protein markers measured during pregnancy. This is made possible

though the California prenatal screening program, in which several hormones or

protein markers were measured in maternal blood during the second trimester. In

the proposed study, the levels of these hormone/protein in nearly 2,000 pregnant

women and their offspring who are later diagnosed with autism, compared to the

nearly 600,000 screened births during the same two years. Although hormonal

factors have been frequently suggested as contributing to the occurrence or

severity of autism, few studies have investigated this hypothesis.

What this means for people with autism: The results will help shape further

research to rigorously evaluate complex interactions between genetic factors, in

utero hormonal factors, and environmental factors in relation to autism. In

addition to the analyses proposed, the investigators have numerous opportunities

for follow-up, including examining similar parameters in other birth years,

examining other newborn screening markers, and potentially obtaining newborn

blood spots for genotyping. The proposed study provides a unique and

cost-effective opportunity explore important data on a very large

http://www.ageofautism.com/2008/07/autism-speaks-t.html

.... " So, here you go, I'm just going to say it. I predict, in the next 50 years,

that the only output from the hundreds of millions of dollars spent on genetic

therapy will be a test for pregnant mothers that will lead to some parents

aborting their children because of a potential risk of autism.

It's a baffling, colossal waste of time, money, and focus. "

Debi's note: I don't know if this was AS funded or not.

http://www.marieclaire.co.uk/news/health/297446/prenatal-screening-for-autism-a-\

step-closer.html

Prenatal screening for autism moved a step closer to being made possible after

scientists discovered ways of potentially identifying the condition in unborn

babies.

New research, released today, has found that high levels of testosterone in the

amniotic fluid of pregnant women was linked to autistic traits in their

children.

These findings mean that soon-to-be parents would be able test to see if their

unborn baby has autism, which would then allow them to take the controversial

decision to terminate the pregnancy.

> >

> > cathy so they do not support research in areas of biomedical b ut yet claim

they are of seeking the cure? how can they cure something they do not treat in

theory?

> > sondra

> >

>

>

> __._,_..___

> Messages in this topic (8) Reply (via web post) | Start a new topic

> Messages | Files | Photos | Database

> Autism_in_Girls_and_Women-subscribe

> ------------------------

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>

> Change settings via the Web (Yahoo! ID required)

> Change settings via email: Switch delivery to Daily Digest | Switch format to

Traditional

> Visit Your Group | Yahoo! Groups Terms of Use | Unsubscribe

> Recent Activity

> *  12

> New MembersVisit Your Group

> Give Back

> Yahoo! for Good

> Get inspired

> by a good cause.

> Y! Toolbar

> Get it Free!

> easy 1-click access

> to your groups.

> Yahoo! Groups

> Start a group

> in 3 easy steps.

> Connect with others.

> .

>

>

>

>

>

>

>

[Guest guest]

debi thanks for to share that as did find of that too but then forgot of where I

to found of it but had memory of reading such words but then could not defend of

you words to it because had no memory of where it was again.

I to also be of a ABA supporter as well as RDI, floor time, respons-ability

therapy , and many other similar program, and for each child it will vary as to

which approach..... I to also be to feel in part biomedical is of greatly

important as well as that some kids are of in true vaccine injured, I to also

feel that in time they will find more and more chromosomal defects if you will

that create the autism like fragile x and other health issues such mitochondrial

issues that are of known so far. I to not feel there is of one cause of autism

just like I to not feel that there is one type of autism. that is of why so many

variations of presentations.

I to feel that over all when one looks at autism they need to look at whole

child not parts. they all interplay in the over all outcomes. I to get of so

upset when one camp of autism tries to force their belief systems onto others

and or discredits others because they differ from their own.... why? this is of

one of the things that causes of so much divisions in autism instead of unity.

Such as I ot hate when the vaccine camp insist ALL causes of autism is of due to

vaccine injury, or the biomedical feel that the only things to do is seek cure

and or reach them by the biomedical means only as if nothing else is of

important and or those who do intervention treatments such as ABA or RDI or

other things insist that nothing eles is of needed unles they do this or that?

and then those camps who insist that those with Aspergers or HFA are just a

personality flaw or error and cant be of with any real challenges. or those with

LFA or classical are of not reachable or cant understand or learn..... and it is

of alll such a battle and mess....but for self I to invest in all the theories

and weigh which ones for self will work with.

for those who work the medical model it will be of good to broaden the mind by

being of open and exploring the social model and vice versa. I to think there is

of 4 models but forget of the other ones.

now this is of not just seen among NTs but even in those dx with ASD that some

things that ALL with ASD should be of to fit their mindset and that if not then

you are of rejected out. some with autism do feel that autism is of just a

different perspective or mindset and to some degree true when looking at this

through the medical and or social models, but some find autism much more. and

struggle much more and cant obtain the same level or ability to communocate or

find the right fit for their outlet to communicate with. so it impacts them more

so in daily life and frustrations and yet most of us are in between the two...

(HFA and LFA) so maybe they should add a new term and call it MFA which to me

means either " moderate or middle " because that is of where for self falls. and

we can clarify it more by saying the same terms to asperger's too such as LFAS

or HFAS, or MFAS LOL just playing here to complicate the terms some.

sondra

sondra

[Guest guest]

autism speak does not speak for me or my child and certainly not their own child

whom they abandoned because of her stance on vaccine

________________________________

To: Autism_in_Girls_and_Women

Sent: Sunday, March 22, 2009 10:44:42 AM

Subject: Re: autism speaks

amy I ot think you misunderstand my seeking.

I to be of a supporter of ABA and do agree the bill is of a good bill and do

support of it greatly.

but there is of already so much politics and such around ABA and often because

of that it leaves many families unable to access GOOD ABA there are of too many

unregulated, unethical, and under trained ABA places that can be of to use this

as a money market. I to worry over the uprising of the BAD ABA that can cause of

more harm/////

Much of Autism Speaks employees do not even have of children of autism and have

work histories that do not even reflect of life time training or exploring of

autism from the reading I to have had on them. I to just be of curious to their

motive behind leading this bill and insisting ABA is of in the bill or they will

not sponser it?

for me yes this is of good that ABA is of in there but Autism speaks from many

many sources have proven to be of not so honest and not fully truthful to their

motives and this fears of me not the bill not the ABA but Autism speaks?

so when I to have of a fear of somethings I to need to research it much to have

it balanced out within me so I to need to hear good or bad and learn my own

thinking and view from all the gathered informations.

I to not be saying I to fully support Autism speaks, but also not saying I do

not. I to need to learn of it it of all. So far the only exposure I to had with

them is of been approached 3 times for my brain when i to be of dead???? and or

they hand of me papers of their chapter meetings but they NEVER had tried to

approach me as a human and interact with me as such.... we even have of a

chapter here in Ohio out of OSU. it is of a student chapter and they have been

to each hearing in our state over insurnace reform as I to be of to attended all

of them too. Much from all of the other autism groups and chapters and

professionals and people DO consistenly come to me give of me hugs, speak to me

as if human and interact with me. much of the familes do the same. much of the

political people I to know of as well doo, but autism speaks only hands me

papers to their chapter meetings but do not interact. Even though they know of

me and know of me by name.

some of my favorite people in my areas are of heads of ABA clinics.

sinclair is of one of my favorite peopls and i to have of a list of them. much

as I to shared do have of ABA clinics and I to support of their work and fight

for them to continue of their work because they are of strong GOOD ABA

clinics....

My motives is of to look at all angles of things and to assure that their is of

no manipulation and explotation of griving and suffering familes and that it

does not become a battle of money market things at teh expense of these

families.

that is of all. Amy I to be of sorry if my words offended of you. but for me my

motive was to protect of the current good ABA clinics and familes as a whole.

not for any personal reasons outside of that.

sondra

[Guest guest]

autism speak does not speak for me or my child and certainly not their own child

whom they abandoned because of her stance on vaccine

________________________________

To: Autism_in_Girls_and_Women

Sent: Sunday, March 22, 2009 10:44:42 AM

Subject: Re: autism speaks

amy I ot think you misunderstand my seeking.

I to be of a supporter of ABA and do agree the bill is of a good bill and do

support of it greatly.

but there is of already so much politics and such around ABA and often because

of that it leaves many families unable to access GOOD ABA there are of too many

unregulated, unethical, and under trained ABA places that can be of to use this

as a money market. I to worry over the uprising of the BAD ABA that can cause of

more harm/////

Much of Autism Speaks employees do not even have of children of autism and have

work histories that do not even reflect of life time training or exploring of

autism from the reading I to have had on them. I to just be of curious to their

motive behind leading this bill and insisting ABA is of in the bill or they will

not sponser it?

for me yes this is of good that ABA is of in there but Autism speaks from many

many sources have proven to be of not so honest and not fully truthful to their

motives and this fears of me not the bill not the ABA but Autism speaks?

so when I to have of a fear of somethings I to need to research it much to have

it balanced out within me so I to need to hear good or bad and learn my own

thinking and view from all the gathered informations.

I to not be saying I to fully support Autism speaks, but also not saying I do

not. I to need to learn of it it of all. So far the only exposure I to had with

them is of been approached 3 times for my brain when i to be of dead???? and or

they hand of me papers of their chapter meetings but they NEVER had tried to

approach me as a human and interact with me as such.... we even have of a

chapter here in Ohio out of OSU. it is of a student chapter and they have been

to each hearing in our state over insurnace reform as I to be of to attended all

of them too. Much from all of the other autism groups and chapters and

professionals and people DO consistenly come to me give of me hugs, speak to me

as if human and interact with me. much of the familes do the same. much of the

political people I to know of as well doo, but autism speaks only hands me

papers to their chapter meetings but do not interact. Even though they know of

me and know of me by name.

some of my favorite people in my areas are of heads of ABA clinics.

sinclair is of one of my favorite peopls and i to have of a list of them. much

as I to shared do have of ABA clinics and I to support of their work and fight

for them to continue of their work because they are of strong GOOD ABA

clinics....

My motives is of to look at all angles of things and to assure that their is of

no manipulation and explotation of griving and suffering familes and that it

does not become a battle of money market things at teh expense of these

families.

that is of all. Amy I to be of sorry if my words offended of you. but for me my

motive was to protect of the current good ABA clinics and familes as a whole.

not for any personal reasons outside of that.

sondra

[Guest guest]

Nuha at many conferneces those with autism wore of buttons or shirts stating the

same phrase " autism speaks does not speak for me " .

because of their stance and I to think it was kassi who shared before that they

refuse to allow anyone with autism to be part of thier board... I to think this

is of where the idead came from since they didnot want autistic perspective to

add to their board those with autism began to say of that phrase...

It was way before I to began to even look at Auitsm speaks in research fashions

of this last few weeks.

I to wonder in true what harm havign a person with autism as part of their board

creates.... my wonder makes me think that we would be oa threat to their

ethics...

so if not why do they not allow any one with spectrum to have a voice within the

workings of Autism speaks and how can htey say they support those with autism

when they do not even respect or want to hear of anyone with autism's voice..

I to also remember a young child with autism wrote of her words and feelings to

autism speaks and they were of going to sue of her until they realized she was

of a young teen on the spectrum.....and to pursue of her would not look good for

them so they dropped of the charges.

I to be of again hear much but want to learn and research facts and truths too

from both views and so this way can be of to find of my own thinking and voice

to this group.

so far all I to hear on the various list or peoples is of over all not good

feelings in regards to them.

sondra

[Guest guest]

Sondra, I think it's great you're trying to find out more. I've taken heat over

the years when I've said I think AS is trying to do the right thing in a lot of

ways. But like you say, if they truly wanted to represent autism they would have

all sorts from the community participate on the board, including those with

autism. I think until they do welcome everyone there will never be strong

support from the autism community. As it stands right now, and it's not meant

ugly at all, but the only people I know who are strong supporters of AS don't

know the details of AS and don't know much about treating autism. Once they do

learn more about the org & autism treatments their strong support of AS

disappears. I watched it happened here locally.

Debi

[Guest guest]

Sondra, I think it's great you're trying to find out more. I've taken heat over

the years when I've said I think AS is trying to do the right thing in a lot of

ways. But like you say, if they truly wanted to represent autism they would have

all sorts from the community participate on the board, including those with

autism. I think until they do welcome everyone there will never be strong

support from the autism community. As it stands right now, and it's not meant

ugly at all, but the only people I know who are strong supporters of AS don't

know the details of AS and don't know much about treating autism. Once they do

learn more about the org & autism treatments their strong support of AS

disappears. I watched it happened here locally.

Debi

[Guest guest]

>

>

> but there is of already so much politics and such around ABA and often because

of that it leaves many families unable to access GOOD ABA there are of too many

unregulated, unethical, and under trained ABA places that can be of to use this

as a money market. I to worry over the uprising of the BAD ABA that can cause of

more harm/////

>

>

>

Bad ABA makes me so upset, I can't even tell you. I just moved back to the

Atlanta area, and since I don't have a BCBA, I can't get a job consulting like I

was in California. In theory, this is actually a good thing, because you would

think (hope) that people who have their BCBAs actually know what they are

doing....unfortunately, that doesn't seem to be the case. I got a job working in

an ABA school, basically working with one kid in the morning and one in the

afternoon. I've been there a month and I am already planning on quitting. Part

of me feels guilty and wants to stay to try and improve the program...but not

for the pathetic amount of money they are paying me. Besides, the directors

obviously think they must know better than me, just because one of them has her

BCBA and the other is closer than I am. But when I see behavior data sheets with

a pre-printed code to write when restraints are used...yeah, NOT a company I

want to work with. There's just no excuse. And there's no way I'm following a

behavior plan to restrain a 6 year old kid. Which may lead to me getting fired

if I can't find another job and quit first. I did tell them I wouldn't do it,

and so far, it hasn't been an issue, because guess what? If you find the proper

reinforcers, this kid doesn't have self injurious behaviors. Imagine that. Wish

I could get that through the thick skulls of the other people working there.

So, ultimately, attempts to regulate ABA providers in GA is not working...people

like me who actually know how to provide quality programs but can't afford the

classes, supervision hours, and tests can't find jobs, and the people who have

the certification don't always know what they're doing. Ugh. Now, there still

aren't any LAWS preventing me from consulting on my own, but if families have

insurance paying, the companies will only pay for certified consultants. Again,

it makes sense...I can't imagine ins. companies coming out to evaluate whether

the program is any good or not. And since my husband still doesn't have a job, I

need to have a more reliable income than working independently can provide right

now.

Sorry for the long tangent. I'm getting incredibly frustrated and really

depressed over the whole situation.

Amnesty

[Guest guest]

>

>

> but there is of already so much politics and such around ABA and often because

of that it leaves many families unable to access GOOD ABA there are of too many

unregulated, unethical, and under trained ABA places that can be of to use this

as a money market. I to worry over the uprising of the BAD ABA that can cause of

more harm/////

>

>

>

Bad ABA makes me so upset, I can't even tell you. I just moved back to the

Atlanta area, and since I don't have a BCBA, I can't get a job consulting like I

was in California. In theory, this is actually a good thing, because you would

think (hope) that people who have their BCBAs actually know what they are

doing....unfortunately, that doesn't seem to be the case. I got a job working in

an ABA school, basically working with one kid in the morning and one in the

afternoon. I've been there a month and I am already planning on quitting. Part

of me feels guilty and wants to stay to try and improve the program...but not

for the pathetic amount of money they are paying me. Besides, the directors

obviously think they must know better than me, just because one of them has her

BCBA and the other is closer than I am. But when I see behavior data sheets with

a pre-printed code to write when restraints are used...yeah, NOT a company I

want to work with. There's just no excuse. And there's no way I'm following a

behavior plan to restrain a 6 year old kid. Which may lead to me getting fired

if I can't find another job and quit first. I did tell them I wouldn't do it,

and so far, it hasn't been an issue, because guess what? If you find the proper

reinforcers, this kid doesn't have self injurious behaviors. Imagine that. Wish

I could get that through the thick skulls of the other people working there.

So, ultimately, attempts to regulate ABA providers in GA is not working...people

like me who actually know how to provide quality programs but can't afford the

classes, supervision hours, and tests can't find jobs, and the people who have

the certification don't always know what they're doing. Ugh. Now, there still

aren't any LAWS preventing me from consulting on my own, but if families have

insurance paying, the companies will only pay for certified consultants. Again,

it makes sense...I can't imagine ins. companies coming out to evaluate whether

the program is any good or not. And since my husband still doesn't have a job, I

need to have a more reliable income than working independently can provide right

now.

Sorry for the long tangent. I'm getting incredibly frustrated and really

depressed over the whole situation.

Amnesty

[Guest guest]

>

> i'm reading a lot of " pissing and moaning " about AS and what they >are trying

to accomplish with trying to get the grassroots strong >and getting laws passed

for insurance coverage for ABA... this is a >good thing people...  

I'll tell you why I personally do NOT think insurance coverage for ABA is a good

idea. I am an ABA provider, so you know I like ABA

It's not a good plan because there are too many kids with no insurance coverage

(like my 3). Too many families who make too much to qualify for state insurance,

and too little to actually afford health coverage. Also, I know of the insurance

companies that DO already cover ABA, most of them have a limit of how many hours

they will provide, and they don't fluctuate based on need of the child.

ABA should be covered by the government, like it is in CA and a few other

places, but preferably on a federal level. Schools should not be able to say,

" we don't do ABA, that's a medical issue. " (I've heard that). It should be

available to EVERYONE, and IMO, making it available to a few who have insurance

puts it further and further out of reach for the rest.

Just my opinion.

Amnesty

[Guest guest]

amnesty I to understand of you concerns to this as well and you are of right

letters behind ones name does equate a good professional or program.... that is

of why regualtion and accountability must be of a huge factor for ABA and we as

families and others need to be of gate keepers if you will over such matters.

to me good ABAers regardless will keep the childs dignity intact, and will

understand child and human behavior and development, should know of teh facits

of the core issues to autism and how they can present of them self. and you are

of right some just get of it and some just dont but the reason for the license

is of important because if the error on a child's behalf they will be of legally

accountable and can lose of their lisence and not be of allowed to work that

areas of work again.

it eliminates much people who read of a book and say okay I can open of my own

ABA clinic or program and do more harm than good because of lacking how to

approach ABA towards the child in an effective and healthy fashions.

Regulations are of improtant even if they tend to lock of some who would make

excellangt ABA team people such as you self.

that is of why even psychologist have to have of lisences to treat, because if

not anyone can open up and claim a skill they do not have and cause great harm

to our community. so why it seems like a netative aspect it is of as it is of

termed a necessary evil.

you could be of to quit and make a formal complaint to the state on the care and

negative things you observed which only then can help create a study of national

reform on HOW ABA should be applied and the ethics behind of it.

I to be fo just spended of 5 hours researching each state that has of the autism

insurance reform that is of supported by Autism speaks and so the brain is of

exhuasted of that work for the moment but did learn much.

the best way to learn of somethings is of to seek out the answers from others

and to do of own research and so that is of what I to be of doing before I to

have of my own strong opinion of the autism speaks for self.

sondra

[Guest guest]

amnesty I to understand of you concerns to this as well and you are of right

letters behind ones name does equate a good professional or program.... that is

of why regualtion and accountability must be of a huge factor for ABA and we as

families and others need to be of gate keepers if you will over such matters.

to me good ABAers regardless will keep the childs dignity intact, and will

understand child and human behavior and development, should know of teh facits

of the core issues to autism and how they can present of them self. and you are

of right some just get of it and some just dont but the reason for the license

is of important because if the error on a child's behalf they will be of legally

accountable and can lose of their lisence and not be of allowed to work that

areas of work again.

it eliminates much people who read of a book and say okay I can open of my own

ABA clinic or program and do more harm than good because of lacking how to

approach ABA towards the child in an effective and healthy fashions.

Regulations are of improtant even if they tend to lock of some who would make

excellangt ABA team people such as you self.

that is of why even psychologist have to have of lisences to treat, because if

not anyone can open up and claim a skill they do not have and cause great harm

to our community. so why it seems like a netative aspect it is of as it is of

termed a necessary evil.

you could be of to quit and make a formal complaint to the state on the care and

negative things you observed which only then can help create a study of national

reform on HOW ABA should be applied and the ethics behind of it.

I to be fo just spended of 5 hours researching each state that has of the autism

insurance reform that is of supported by Autism speaks and so the brain is of

exhuasted of that work for the moment but did learn much.

the best way to learn of somethings is of to seek out the answers from others

and to do of own research and so that is of what I to be of doing before I to

have of my own strong opinion of the autism speaks for self.

sondra

[Guest guest]

Those are good points. Our school system tries to get us to provide insurance

info, I won't. They also ask me even though we don't have Tncare to sign off for

them to bill Tncare. I won't. As I told them, they are required to provide

services because of educational issues and if I give them permission to bill

then they will use it against me as medical, and my insurance co will use it

against me as educational, and my child will be the one left without anything.

*IF*, and that's a big if, insurance is gonna pay for ABA it should be automatic

20hrs/wk for so many ears, not an hr every-other wk. That's a joke.

Debi

>

[Guest guest]

Those are good points. Our school system tries to get us to provide insurance

info, I won't. They also ask me even though we don't have Tncare to sign off for

them to bill Tncare. I won't. As I told them, they are required to provide

services because of educational issues and if I give them permission to bill

then they will use it against me as medical, and my insurance co will use it

against me as educational, and my child will be the one left without anything.

*IF*, and that's a big if, insurance is gonna pay for ABA it should be automatic

20hrs/wk for so many ears, not an hr every-other wk. That's a joke.

Debi

>

[Guest guest]

it is of good to explore then autism votes and the type in the state after that

so for example for self would type in autism votes Ohio in the search and look

at the bill as each state is of similar but also has different ages or amounts

allocated some states have of a much good plan and some do not... like one

covers autism treatment up to age of 21,,, the bill is not just an ABA insurance

bill, it covers other options too so families can chose.

I to think it is of a good bill because currently most families are of going

bankrupt trying to cover the almost 50,000 a year for treatment.

those who are of not employeed then have access to waivers that those with

emplyment may not need now because of obtaining coverage.

most who are of on waivers still cant access certain treatment models and needs

such as speeck, OT or psychology because either medicaid does not pay it or ther

is of no medicaid providers that can provide supports to the child.

to me it is of just an added support for the families that may need of it. it is

like we have of some things , some times poor quality care and some cant access

even with waivers, or there is of huge wait list to get onto the waivers, some

kids do not get into SIB and or agressive and or agitated states until puberty

and if they then have to wait they will be failed by the time they can obtain a

waiver and often times in betwen are institutionalized, restrained in dangerous

holds, told to sign them off the state so they can serve them all horror stories

so that is of just not acceptable so to me insurance for some familes will be of

their only anchor to supports.

I to think it greatly important to have as many options as we can to meet or try

to reach more and more families.

schools still need to provide services as indicated by the IEP and MFE during

the school day/ those with ABA nees often go to charter like schools or

specialized schools not sure of the actual title but like the Cleveland clinic

serves over 100 children and they use of ABA as part of their model. these are

of kids with more extensive needs, who need more intensive direct one to one or

one to 5 sorts of treatments to learn to cope and not react and respond into non

stop or repetative SIB and the screaming and tears and or acting out of

aggression. these kids need help and need to learn to cope and connect and

communicate in a more functional way that promotes their success. so while very

unsure of Autism speaks.... my needs to support the bill in my state is of high

and is of a personal choice for me.

but again it is of good to see what each state is of doing and what their bills

look like. and if one is of not yet established and you feel strong about the

wording and or want to learn more and stay active as advocates within you state

please go to those state hearings and be of much active in the process of the

bill.

our bill will needs to be fo reworded in some areas for it to be of adequate to

address the needs. our bill is of in the house so it is of in early stages.

sondra

[Guest guest]

it is of good to explore then autism votes and the type in the state after that

so for example for self would type in autism votes Ohio in the search and look

at the bill as each state is of similar but also has different ages or amounts

allocated some states have of a much good plan and some do not... like one

covers autism treatment up to age of 21,,, the bill is not just an ABA insurance

bill, it covers other options too so families can chose.

I to think it is of a good bill because currently most families are of going

bankrupt trying to cover the almost 50,000 a year for treatment.

those who are of not employeed then have access to waivers that those with

emplyment may not need now because of obtaining coverage.

most who are of on waivers still cant access certain treatment models and needs

such as speeck, OT or psychology because either medicaid does not pay it or ther

is of no medicaid providers that can provide supports to the child.

to me it is of just an added support for the families that may need of it. it is

like we have of some things , some times poor quality care and some cant access

even with waivers, or there is of huge wait list to get onto the waivers, some

kids do not get into SIB and or agressive and or agitated states until puberty

and if they then have to wait they will be failed by the time they can obtain a

waiver and often times in betwen are institutionalized, restrained in dangerous

holds, told to sign them off the state so they can serve them all horror stories

so that is of just not acceptable so to me insurance for some familes will be of

their only anchor to supports.

I to think it greatly important to have as many options as we can to meet or try

to reach more and more families.

schools still need to provide services as indicated by the IEP and MFE during

the school day/ those with ABA nees often go to charter like schools or

specialized schools not sure of the actual title but like the Cleveland clinic

serves over 100 children and they use of ABA as part of their model. these are

of kids with more extensive needs, who need more intensive direct one to one or

one to 5 sorts of treatments to learn to cope and not react and respond into non

stop or repetative SIB and the screaming and tears and or acting out of

aggression. these kids need help and need to learn to cope and connect and

communicate in a more functional way that promotes their success. so while very

unsure of Autism speaks.... my needs to support the bill in my state is of high

and is of a personal choice for me.

but again it is of good to see what each state is of doing and what their bills

look like. and if one is of not yet established and you feel strong about the

wording and or want to learn more and stay active as advocates within you state

please go to those state hearings and be of much active in the process of the

bill.

our bill will needs to be fo reworded in some areas for it to be of adequate to

address the needs. our bill is of in the house so it is of in early stages.

sondra

[Guest guest]

Sondra, here in our state their is no special waiver, everything is income

based. So for a family of 5 who make a gross income of $60,000/yr you wouldn't

get state insurance (Tncare) and no waiver insurance. All you have is private

insurance and that's it. Any ABA is either privately paid or through the school

system. In the school system if you fight really, really hard you may be able to

get 10 hrs/wk of good ABA.

I have a friend who has Tncare & she can get all sorts of service for her son

that I cannot for Allie. I think if you are really, really poor you can access

educational services but you cannot treat biomed. If you have lots of money you

can do it all. But that in between population like my family often can't do a

whole lot of educational but may be able to do biomed.

I think the kids who make the best progress get early biomed & early, intensive

educational interventions. That's why I'm such an advocate for early diagnosis &

getting health care in our region so these families won't waste years of their

child's lives trying to figure out what to do next. It would be so nice to have

a diagnosis one day early-on and the very next day turn to health care providers

who can direct their paths. And educational professionals who can plan a good

program.

I don't know what I'm dreaming!

Debi

-

[Guest guest]

Sondra, here in our state their is no special waiver, everything is income

based. So for a family of 5 who make a gross income of $60,000/yr you wouldn't

get state insurance (Tncare) and no waiver insurance. All you have is private

insurance and that's it. Any ABA is either privately paid or through the school

system. In the school system if you fight really, really hard you may be able to

get 10 hrs/wk of good ABA.

I have a friend who has Tncare & she can get all sorts of service for her son

that I cannot for Allie. I think if you are really, really poor you can access

educational services but you cannot treat biomed. If you have lots of money you

can do it all. But that in between population like my family often can't do a

whole lot of educational but may be able to do biomed.

I think the kids who make the best progress get early biomed & early, intensive

educational interventions. That's why I'm such an advocate for early diagnosis &

getting health care in our region so these families won't waste years of their

child's lives trying to figure out what to do next. It would be so nice to have

a diagnosis one day early-on and the very next day turn to health care providers

who can direct their paths. And educational professionals who can plan a good

program.

I don't know what I'm dreaming!

Debi

-

[Guest guest]

Debi,

It's similar here as well.

I'm not even sure if we have any ABA providers as I don't here anyone around

here using that term, only first heard of it here on this group. However,

we're one of those families that fall in that middle ground.

Here in FL they do have health insurance for kids who don't have private

insurance. If you make next to nothing then of course they can get medicaid,

if you make a little but not much over poverty then you can get the Healthy

Kids (or Medi kids for under 5) for 15 or 20 bucks a month for the whole

family (of kids)

But if you make over their amount (basically a family of 4 I think has to

make less than $35k a year for that low premium) and you have no other

options for insurance for the kids, you can buy into the same low income

program at full price. Which is about $128 a month per child (and often goes

up some every year)

Which is great, don't get me wrong, cause without that we'd have nothing at

all and their medications alone would cost more than that per month if we

had nothing, not to mention the dr's visits etc. So I am greatful that there

is at least this option cause otherwise no private ins. co. would touch us

without a lot more money AND saying that they won't cover ANYTHING seizure

related (we've tried)

However, options are very limited in Doctors and specialists, and Therapy

was only covered for a set amount of sessions (like 6 for OT and 9 for

Speech) and then they said that we should be getting ALL our therapy at

school due to the No Child Left Behind law. But of course the schools have

their own budgets etc. and I don't think any child gets all the therapy they

need or deserve in school, and it's mostly done in small groups instead of

one on one like private therapy.

Here though there are a few other options, one is CMS (Children's Medical

Services) they act as the HMO for the Insurance and have a bit larger

network of providers and cover as much therapy as is recommend by the

provider (although I'm sure there's some limit, it's not a set number then

nothing) But you can only get on CMS if you have Medicaid or the low

premium. If you pay full price then they are " not allowed " to put you on

their program, even if the child qualifies medically... which mine does.

So it puts us in the position where because we make enough to have to pay

full price for their health coverage, we are penelized and not able to get

the same amount or quality of services as someone who makes a little less

than we do, or those who make nothing at all... or at least claim to. It's

very frustrating, we'd love to move, but it's just not possible right now,

and even when it becomes possible I'm not sure where the best place to go

is.

We are at least still getting some private therapy (1/2 hour a week of OT

and Speech... so not much at all) though a local non profit org. that was

actually started by the owner of the facility. We pay a small co-pay and

their org. pays the rest. But she really needs more than that, it's just not

available at this time.

Theresa

>

> Sondra, here in our state their is no special waiver, everything is

> income based. So for a family of 5 who make a gross income of $60,000/yr you

> wouldn't get state insurance (Tncare) and no waiver insurance. All you have

> is private insurance and that's it. Any ABA is either privately paid or

> through the school system. In the school system if you fight really, really

> hard you may be able to get 10 hrs/wk of good ABA.

>

> I have a friend who has Tncare & she can get all sorts of service for her

> son that I cannot for Allie. I think if you are really, really poor you can

> access educational services but you cannot treat biomed. If you have lots of

> money you can do it all. But that in between population like my family often

> can't do a whole lot of educational but may be able to do biomed.

>

> I think the kids who make the best progress get early biomed & early,

> intensive educational interventions. That's why I'm such an advocate for

> early diagnosis & getting health care in our region so these families won't

> waste years of their child's lives trying to figure out what to do next. It

> would be so nice to have a diagnosis one day early-on and the very next day

> turn to health care providers who can direct their paths. And educational

> professionals who can plan a good program.

>

> I don't know what I'm dreaming!

>

> Debi

>

> -

>

>

>

[Guest guest]

Hi Amnesty,

Thank you for your honesty and for not going for the jugular like others on the

list have so immaturely done.

My point about the insurance coverage is that I have two children on the

spectrum.  It would have been nice, at the time, when they were in the Early

Intervention Program getting 35-40 hours/week of ABA to be supplemented by

insurances. It costs THOUSANDS of dollars per year to do this and to do it

right.  It would have helped tremendously to be supplemented by my insurance

company. 

I read your earlier posting about having your BCBA and just because you have

this dual certification it doesn't necessarily make you a better ABA therapist. 

Amnesty, I couldn't agree with you more, but unfortunately, this is what the

states (at least NJ) are mandating and this is the only way you are going to

job.  I respect your frustration. 

I also think it's very important for the child(ren) parent(s) to get heavily

involved and to be able to run drills on their own whether it's DTI, RDI, VB. 

This also helps.

Amy

 

________________________________

To: Autism_in_Girls_and_Women

Sent: Monday, March 23, 2009 10:16:17 PM

Subject: Re: autism speaks

>

> i'm reading a lot of " pissing and moaning " about AS and what they >are trying

to accomplish with trying to get the grassroots strong >and getting laws passed

for insurance coverage for ABA... this is a >good thing people...  

I'll tell you why I personally do NOT think insurance coverage for ABA is a good

idea. I am an ABA provider, so you know I like ABA

It's not a good plan because there are too many kids with no insurance coverage

(like my 3). Too many families who make too much to qualify for state insurance,

and too little to actually afford health coverage. Also, I know of the insurance

companies that DO already cover ABA, most of them have a limit of how many hours

they will provide, and they don't fluctuate based on need of the child.

ABA should be covered by the government, like it is in CA and a few other

places, but preferably on a federal level. Schools should not be able to say,

" we don't do ABA, that's a medical issue. " (I've heard that). It should be

available to EVERYONE, and IMO, making it available to a few who have insurance

puts it further and further out of reach for the rest.

Just my opinion.

Amnesty

[Guest guest]

you are of dreaming the autism community reality of need and the barriers is of

getting those outside of the community to understand that reality. they cant see

of it clearly yet because they do to live of it 24/7.

we all have of to work hard within our own states to assure cahnge comes and

this is of why currently wanting to research each states current programs and

funding and then what the over all loop holes are to their state such as in you

state it seems to be of the middle class that is of beign failed.

waivers in our state are of not incomed based by parents but by child so the

child cant be of for example have more income that is of their own set income of

more than 2000.00 I to think it is this means like SSI and stocks or bonds or

inherited money. for our children if their is of a known inheratence that will

come to them via a death of family member we can turn it and have it processed

immidiately to a living trust that is of NOT counted against them.

I to know of an older lady who is of with much disability all her life when her

family dies they left of her a 2 million dollar living trust fund and so the

state cannot be to count this against her but the state can still fund much of

her programs and daily living sorts of care/ she stil gets in home care,

transportation, nursing and things come to her home even though she is of a

miilionaire does not seem right but in the end when she passes the living trust

I to think not sure on the fact of this has to roll back into the state since

they cared for her in other ways during her living.... but she can ask for funds

any time she wants for things from her trust, such needs or wants for self.

each state is of very different and that is of new to me and hard for me to

understand that what happens in my state may not happen in others states so that

is of where my ignornace is. that is of why need to learn of it. It is of not

always easy for me because of the barriers to language and terms unfamilar to me

but the exposure to the words and such soon will become clear if enough states

say similar things then it makes if clear sometimes. odd that some words that

most might find hard can be easy for me but common back and forth social words

are of hard and too full of abstract, literal interpretations and confusing at

times.

today is of another hearing day in our state and was of plan to go but two kids

are of not well and my whole routine is of off because the tornado alarm always

goes off every wednesday at noon but this day went off at at almost 10 and the

sudden loud painful sounds and the unexpected timing of it caused my brain to

seem now sort of fragmented.

thanks for all the words here on autism speaks and for those not allowing it to

be of a angry debate of not nice words. my intent was to learn from much vies

not to cause of fights and painful words to others views of it.

lastly Debi yes for much the early intervention weatehr it be ABA or another

model and biomedical to increase health (not cure) is of the best for outcomes

but what is of even more important is parental mindset over the child with

autism in the family. we are of hyper sensitive and can sense the mindsets

toward us.

sondra

[Guest guest]

you are of dreaming the autism community reality of need and the barriers is of

getting those outside of the community to understand that reality. they cant see

of it clearly yet because they do to live of it 24/7.

we all have of to work hard within our own states to assure cahnge comes and

this is of why currently wanting to research each states current programs and

funding and then what the over all loop holes are to their state such as in you

state it seems to be of the middle class that is of beign failed.

waivers in our state are of not incomed based by parents but by child so the

child cant be of for example have more income that is of their own set income of

more than 2000.00 I to think it is this means like SSI and stocks or bonds or

inherited money. for our children if their is of a known inheratence that will

come to them via a death of family member we can turn it and have it processed

immidiately to a living trust that is of NOT counted against them.

I to know of an older lady who is of with much disability all her life when her

family dies they left of her a 2 million dollar living trust fund and so the

state cannot be to count this against her but the state can still fund much of

her programs and daily living sorts of care/ she stil gets in home care,

transportation, nursing and things come to her home even though she is of a

miilionaire does not seem right but in the end when she passes the living trust

I to think not sure on the fact of this has to roll back into the state since

they cared for her in other ways during her living.... but she can ask for funds

any time she wants for things from her trust, such needs or wants for self.

each state is of very different and that is of new to me and hard for me to

understand that what happens in my state may not happen in others states so that

is of where my ignornace is. that is of why need to learn of it. It is of not

always easy for me because of the barriers to language and terms unfamilar to me

but the exposure to the words and such soon will become clear if enough states

say similar things then it makes if clear sometimes. odd that some words that

most might find hard can be easy for me but common back and forth social words

are of hard and too full of abstract, literal interpretations and confusing at

times.

today is of another hearing day in our state and was of plan to go but two kids

are of not well and my whole routine is of off because the tornado alarm always

goes off every wednesday at noon but this day went off at at almost 10 and the

sudden loud painful sounds and the unexpected timing of it caused my brain to

seem now sort of fragmented.

thanks for all the words here on autism speaks and for those not allowing it to

be of a angry debate of not nice words. my intent was to learn from much vies

not to cause of fights and painful words to others views of it.

lastly Debi yes for much the early intervention weatehr it be ABA or another

model and biomedical to increase health (not cure) is of the best for outcomes

but what is of even more important is parental mindset over the child with

autism in the family. we are of hyper sensitive and can sense the mindsets

toward us.

sondra

[Guest guest]

it isof good to know what other states are of doing in regards to health

insurance, funding , services, supports for our children because some states

might look good until you speak to the people and see of all the crazy loop

holes and it angers me to know you child can be of the one who is of penalized

simply because of the income of the family.

as i to shared we have of waivers.......but the wait list can be of years

long.....with these waivers you do get of medicaid insruance for the child which

is of good and some times bad if the providers in you areas do not accept

medicaid it becomes a huge issues. so while the state looks good from what we

may offer as a state the reality of it is , it is of not always easily

accessable and balanced for ALL families.

we do have of I to think maybe 4-7 that I to know of autism schools or centers

and most of them do focus to ABA as the methodology. others use a loose and not

full ABA approach but mild variations of it, some are of good some are of not.

some to me still control the kids by means of force and poor quality over all

intervention but most are of very good. My 3 favorite ones are of step by step

academy and the cleveland clinic and the rich center in our state.

I to feel our state does well with more involved autism but when it comes to

aspergers much of those sorts of schools to me tend to be of controllers and

tend to lack the understand of the aspie minds and still want to treat it as bad

behavior with intent instead of seeing much of it as the core issues to

aspergers/

so while making good gains still so far behind in other areas.

so lately been of trying to be of more active and proactive in the political

words of our state in regards to autism.

sondra

[Guest guest]

>

> I think the kids who make the best progress get early biomed & early,

intensive educational interventions.

I think so too. One thing I have noticed is that in areas where ABA is available

free to families (like Sacramento), parents are less likely to try the biomed

options. I think they don't feel the urge to do as much stuff on their own when

they already have free intervention. Biomed is almost always OOP and expensive.

But here in GA, I see way more kids on GFCF diets, getting HBOT, chelation,

supplements, etc. I think this is because these treatments, while expensive, are

still cheaper than paying for ABA. Plus they are things that can often be done

with only a Google degree (like diets and most supplements).

I don't have a lot of exposure to the biomed-only kids, of course, but in my

experience, the kids who are getting both ABA AND biomed treatment are the ones

who have the best outcomes. Not always (I have worked with plenty of kids who

did fantastic with only educational interventions), but especially for the kids

who have the most challenges to overcome, a combined approach works best.

Amnesty