A Seat at the table...

[Guest guest]

My first IEP for Kolin, I read the rules, the law and the regulations. I had

already consulted with doctors, read the books and had advocates with me to

support me. I knew his rights, I knew what he needed. But there I was, just a

parent, sitting at table with professionals who had already decided based on

the documentation in front of them what was right for Kolin. They had only

spent an hour with him. But they had their ideas based on other children what

was effective and thus they created a program on what they had to offer, not on

what Kolin needed. I spoke till I was blue in the face, I could not change

their position, they were professionals, how dare I question them.

Soon, I also became a professional, a professional advocate who attended

meetings with parents and helped them successfully. However for Kolin’s IEP’s,

I was still just a parent. It took a year and calling the state Dept of Ed to

get them to listen to me, I knew my son and how to help him. They could see it

in his changes at school and with me. But when it came to the purse strings, I

was still the parent. I had no real say in these meetings.

Many parents here have experienced this; we know what it is like to face a

room filled with professionals who look on you as only a parent. Your voice

does not matter in the discussions, until you can prove to them it does.

However if what you are saying costs them something, or flies in the face of

accepted practice, you will be ignored until you bring in bigger guns or a

higher authority who can revoke their funding.

This is one of my fears of how the CAA is being handled. It appears (I may be

wrong) these organizations, AS, CAN. ASA, NAA, SM and etc…are all fighting for

a bill so one or two of them can sit at the IACC. Those who get a seat, unless

they already have ties on the IACC, maybe treated like a parent at an IEP.

That organization sitting as a rubber stamp, for whatever sector it is chosen

from, with no real voice. Yes, whichever org is there can add to the minutes,

but for action to take place it needs consensus of the entire committee.

Also, who is going to decide which organization will represent the autism

community? How are we going to ensure accountability? I am not attacking;

these are merely some of those hard questions I wish to have answered.

Also, integrity must be of the highest caliber to be trusted by the masses. I

guess that sums up the concerns I have read by the many who are questioning it,

whether warranted or not, it is in question. Thus it must be addressed. Would

many here question if CAN was the rep for community on the IACC, yes; because,

it is matter of integrity. I am not saying that compromising shows a lack of

integrity, I am saying a lack of transparency and accusations do. Maybe that

is why so many have a visceral reaction to studies that still question

parenting as the cause of autism, such as the TV study, the old fathers study,

the mom’s bad habit studies. One, the lack of transparency in funding and

intent, and the indirect accusation that parents cause autism.

Please know, I just wish for all members of the autism community to have an

opportunity to understand the issues and make an informed choice based on

personal research regarding the requests for our support for the Combating

Autism Act. Lastly, I have stated before, my greatest problem with the bill is

how little is being funded for services through existing federal agencies, the

Dept of ED, Medicaid, Early Intervention, etc…The research, although well

intentioned, will not show results for another 3 to 5 years, so, for me is not

nearly as imperative as services and supports to families now.

Thank you for letting me speak my mind…

[Guest guest]

I can relate to what you are saying completely. We are going through one of

those breif

periods where things are good in the classroom, but with our in- home program,

it is

another story.

They have cancelled his after-school ABA due to constant sickness- documented

immune

deficiencies through our doctor. It is " insult to injury " . Now we are on a four

month waiting

list for he and his brother to receive services again!

AARRRG!

>

> My first IEP for Kolin, I read the rules, the law and the regulations. I

had already

consulted with doctors, read the books and had advocates with me to support me.

I knew

his rights, I knew what he needed. But there I was, just a parent, sitting at

table with

professionals who had already decided based on the documentation in front of

them what

was right for Kolin. They had only spent an hour with him. But they had their

ideas

based on other children what was effective and thus they created a program on

what they

had to offer, not on what Kolin needed. I spoke till I was blue in the face, I

could not

change their position, they were professionals, how dare I question them.

>

> Soon, I also became a professional, a professional advocate who attended

meetings

with parents and helped them successfully. However for Kolin's IEP's, I was

still just a

parent. It took a year and calling the state Dept of Ed to get them to listen

to me, I knew

my son and how to help him. They could see it in his changes at school and

with me.

But when it came to the purse strings, I was still the parent. I had no real

say in these

meetings.

>

> Many parents here have experienced this; we know what it is like to face a

room filled

with professionals who look on you as only a parent. Your voice does not

matter in the

discussions, until you can prove to them it does. However if what you are

saying costs

them something, or flies in the face of accepted practice, you will be ignored

until you

bring in bigger guns or a higher authority who can revoke their funding.

>

> This is one of my fears of how the CAA is being handled. It appears (I may

be wrong)

these organizations, AS, CAN. ASA, NAA, SM and etc…are all fighting for a bill

so one or

two of them can sit at the IACC. Those who get a seat, unless they already

have ties on

the IACC, maybe treated like a parent at an IEP. That organization sitting as

a rubber

stamp, for whatever sector it is chosen from, with no real voice. Yes,

whichever org is

there can add to the minutes, but for action to take place it needs consensus

of the entire

committee. Also, who is going to decide which organization will represent the

autism

community? How are we going to ensure accountability? I am not attacking;

these are

merely some of those hard questions I wish to have answered.

>

> Also, integrity must be of the highest caliber to be trusted by the masses.

I guess that

sums up the concerns I have read by the many who are questioning it, whether

warranted

or not, it is in question. Thus it must be addressed. Would many here

question if CAN

was the rep for community on the IACC, yes; because, it is matter of integrity.

I am not

saying that compromising shows a lack of integrity, I am saying a lack of

transparency

and accusations do. Maybe that is why so many have a visceral reaction to

studies that

still question parenting as the cause of autism, such as the TV study, the old

fathers

study, the mom's bad habit studies. One, the lack of transparency in funding

and intent,

and the indirect accusation that parents cause autism.

>

> Please know, I just wish for all members of the autism community to have an

opportunity to understand the issues and make an informed choice based on

personal

research regarding the requests for our support for the Combating Autism Act.

Lastly, I

have stated before, my greatest problem with the bill is how little is being

funded for

services through existing federal agencies, the Dept of ED, Medicaid, Early

Intervention,

etc…The research, although well intentioned, will not show results for another 3

to 5

years, so, for me is not nearly as imperative as services and supports to

families now.

>

> Thank you for letting me speak my mind…

>

>

>

[Guest guest]

Insurance has and always will be a source for people to make money.

The company offers to cover you for certain things (home fire, car

wreck, health illness, etc) in exchange for a fee. The fee is then

used to make further investments. The insurance industry makes an

educated guess at what to charge based on how close fire depts are,

how good a driver, or how healthy you are. They can reasonably

consider that if someone isn't healthy, they are gonna lose money and,

therefore, don't want unhealthy people unless they can charge so high

a profit to offset any cost; if they can't they raise rates until they

make money again.

For a long time I felt health insurance was from some well-meaning

place where they wanna help me; it's a business. They don't care about

helping. Sure, maybe some hope to do a good deed along the way, but

why would anyone start a company to lose money?

I think part of the problem is that we have come to the point we

expect health insurance to pay for everything. Just think, if people

paid for at least a few office visits during the year, how much more

money could go to treat something catastrophic like autism?

Personally, I don't know that my health insurance is that big a help

to me. We now have a medical savings where we put so much per month

into a medical account and have a higher health insurance premium. In

return, I'm a MUCH better consumer and can choose where my money is

spent. I don't have to have insurance approval to pay for an IgG test,

if the funds are there I use it. Once the deductible is hit, insurance

pays for everything again. This past year we hit the limit in May. I'm

expecting another big increase in health insurance premiums.

Personally, I'd rather spend that $800/mo or so toward my own account

where I can decide what I want to spend it on.

>

> Some people are lucky enough to have health insurance. Some people

are even lucky enough to have health insurance which doesn't choose to

disallow coverage for the treatment that they or their family members

need. I'm wondering what good my health insurance is to me. I thought

that the whole point of it was to alleviate the risks. To help the

people who were unlucky enough to be sick but conscientious enough to

work and pay for health insurance. Now I find out that certain people

with certain illnesses can be arbitrarily told, in essence, " fook

you " . Better read all of the fine print.

>

[Guest guest]

I agree. I think we may be able to get this type of study done by

the states because they aren't nearly as implicated in the issue and

they are bearing the brunt of the costs.

> > > >

> > > > That's why you need a tax credit- so you can do what you

think

> is

> > > correct.

> >

>

[Guest guest]

Absolutely a great idea.

Re: A Seat at the table...

:I believe we CAN fund our own research. I have discussed this with executive level big Pharma personnel. We can do a vaccinated vs nonvaccinated epidemiological study, which is both simple and inexpensive. Get a big name epidemiologist to author it (they can be bought)and/or get a prestigious institution involved (Harvard perhaps). Stay away from naturopathic institutional support and anyone remotely controversial. Use a big sample and make sure the methodology is flawless. Go straight to the public with the information--our friends in the media should be able to insure national dissemination of the results. I think our community is incredibly naive to think we'll get an honest study from the govt anytime soon, or perhaps ever.> > >> > > That's why you need a tax credit- so you can do what you think is > > correct.>