Please Help: Autism Expert needed

[Guest guest]

I am posting this with the permission of its author.

Haleh

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Hello group,

For those who don't know me, My name is Kendra Pettengill and I live

in Oregon.  I have a recovered 7 year old daughter but stay active in

the Autism community.  We used biomedical, chelation, and ABA to

recover my daughter.  I am, this year, the vice president of FEAT of

Oregon.

This year our Oregon Legislature passed Senate Bill 1, or the Mental

Health and Substance Abuse Parity Act.  There is no insurance

coverage for Autism in Oregon.  In fact, when my daughter was

diagnosed at three we were dropped by our insurance and went without

medical insurance for four years.  While I would prefer to debate

Autism even being listed as a mental illness, as many of you know we

must take one step at a time.  We are looking at pushing for an

Autism Parity act alone, but right now we are looking at getting

Autism covered first under this new law.  We want to get as much

comprehensive coverage as possible Biomedical as well as ABA. 

After passing the bill they assigned a task force that was to lay out

all the particulars, if anything would be excluded, lifetime caps,

etc.

A lot of parents have been attending these meetings and inundating

the committee members with emails.  Unfortunately three of the

committee members are representatives of the largest insurance

agencies.  I guess I don't need to tell you they are pushing 1) to

exclude autism from the bill 2) if not excluded to have an age cutoff

of 7 years old.  This week they gave a presentation and chose as part

of their tactics to list Autism in the mental illness category of

severe, not biologically based and told the committee these

conditions are basically like throwing your money down a rat hole. 

Despite this and the fact that I stood up on a chair and showed my

daughters picture, telling the committee that he was wrong.  That

autism is biologically based, that there are affective treatments

that can change these children's lives and that my daughter is

completely recovered from autism.  I told them it is too late for us,

but I came there to tell them the truth and that not one other family

in Oregon should have to sell their house and spend their retirement

just to give their child a chance at life.  I told them they are

going to cover substance addiction and I am not opposed to giving

poeple a 2nd chance at life, but to cover substance addiction and

suggest denying basic care to innocent little children who are only

asking for a first chance at life is immoral.  I got a standing

ovation from the crowd and two of the committee members. 

So, after that and because of being inundated with emails and letters

they announced that they obviously need to have a special committee

hearing to specifically learn about and address Autism.  The entire

meeting will be about Autism and they told the parents in the gallery

that we can bring in whatever experts we choose.  We brainstormed

after the hearing and decided we want to push biomedical and ABA as

we have some scientific justification and we want to ensure that

Behavior Analysts will be reimbursed under the coverage.  We don't

think there will be issues of covering doctors, speech therapists,

Occupational Therapists, etc.  We want to be sure that doctors are

reimbursed for biomedical interventions specifically for Autism.  So

we can give a 15 minute presentation on Biomedical issues and a 15

minute presentation on ABA and why BCBAs and therapists should be

covered.

I am asking if anyone out there knows of someone out here in the

Autism world that would be a good presenter for this, carry some

clout, and be knowledgeable in a wide array of areas on Autism.  It

looks like the Autism hearing will be March 20th in Salem Oregon. 

This is big here in Oregon where we get nothing, no insurance, the

schools suck and believe that recovery is not possible, so will not

even support parents doing their own ABA programs, only one doctor

using the DAN protocol in the entire state.  I personally believe

that Oregon is the worst state in the US to have an autistic child. 

We want to change that, one step, one victory at a time. 

We are open to any suggestions for experts that might help us out.

Thanking you in advance from Oregon where 1 in every 120 now have

Autism.

If you reply off this list, please email me at achsel@....

Kendra