Aspies For Freedom

Full Version: Autism Registry in Utah?  What's up with this?
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Has anyone heard about this or does anyone have information regarding it?  What do you think about it?

http://www.sltrib.com/news/ci_8251743

Here is a link to some text regarding the bill:

http://le.utah.gov/~2008/bills/hbillint/hb0263s01.htm

And a link to a small news article regarding the registry:

http://www.ksl.com/?nid=148&sid=2662801

silky Wrote:
Creepy


I agree.  I'm leary of this sort of thing.  I mean are there names attached to the entries or is it just for purpose of statistics, etc.?  I am hoping that maybe someone will come along who has more information regarding it, but at any rate, I wanted folks to be aware.

If something like this is not handled correctly, it can have the potential to become a human rights violation.  I'm hoping that isn't the case here, but so far I haven't found much on this at all.  I just received the first article in my Google alerts today or I wouldn't have known anything about it.

test4echoyyz Wrote:

silky Wrote:
Creepy


I agree.  I'm leary of this sort of thing.  I mean are there names attached to the entries or is it just for purpose of statistics, etc.?  I am hoping that maybe someone will come along who has more information regarding it, but at any rate, I wanted folks to be aware.

If something like this is not handled correctly, it can have the potential to become a human rights violation.  I'm hoping that isn't the case here, but so far I haven't found much on this at all.  I just received the first article in my Google alerts today or I wouldn't have known anything about it.


There's more than just names:
"House Bill 263 would implement a statewide list, complete with medical histories, that would be available to researchers and families seeking resources. "

I.Face.Palm Wrote:
Aspergers is currently covered under the Americans With Disabilities Act and therefore if someone was either not hired or fired based on the fact that they had Aspergers, the employer could face a lawsuit. While it may take time to carry through a lawsuit, I consider the Americans With Disabilities Act a sufficient protection against employers.


I'm not meaning to sound rude or anything, but I've seen discrimination happen even despite the ADA.  Its as simple as an employer's labeling of their reason for not hiring as something other than AS.

I certainly hope though that this would never become a problem.  I hope that  they would never keep a database of names that could be matched with the data.  That in and of itself would be my largest concern.

test4echoyyz Wrote:
I'm not meaning to sound rude or anything, but I've seen discrimination happen even despite the ADA.  Its as simple as an employer's labeling of their reason for not hiring as something other than AS.


ADA has no teeth b/c due process is not spelled out.  IDEA is very precise and is therefore respected.  Every state (USA) has a disability law office that can help at no cost, but you can imagine their budget and weep.

garmonbozia Wrote:
Suppose your parents put you in that registry when you're a kid, and then you grow up and want your name off it.  Would the people in charge of it be required to remove your information on demand.  If they refuse, would you have any chance of suing them and winning?  Even if you successfully deleted your entry, there's no guarantee that there's not another copy of it in the corner of some researcher's office.Hitler once used registries.  Look what happened.


This might be something the disability law office my want to spend their limited $$ on.  If not them, its right up the ACLU's alley.  Someone in that position could do a lot of good sueing!

Janet Wrote:

test4echoyyz Wrote:
I'm not meaning to sound rude or anything, but I've seen discrimination happen even despite the ADA.  Its as simple as an employer's labeling of their reason for not hiring as something other than AS.


ADA has no teeth b/c due process is not spelled out.  IDEA is very precise and is therefore respected.  


IDEA my be respected by many, but you can find endless stories online where IDEA has not been enough to protect our children in the schools.  Actually, my youngest child is also AS, and we have a horror story of our own with respect to the failure of IDEA to protect and serve.  

I was told that there was nothing more that could be done for my child aside from "residential treatment."  This was a flat blatant lie given to me by a so called professional who did not desire to do the extra legwork required to learn about AS and help my child. Needless to say, I now homeschool and things are coming along very nicely. Smile

garmonbozia Wrote:
Hitler once used registries.  Look what happened.


That was one of my first thoughts regarding this as well.

BardWolf Wrote:

Quote:
For the right price, anything can be bought. It is true that someone could bribe an employee to give them the registry data, but that is also true of an insurance company, which knows much more about you than this registry does. The government also already has access to these records in the insurance companies. They have but to ask.


Again why would they want the information is the big question. Seriously this Aut-noia is really unfounded. What are they going to do us if we are registered. forbid us from buying bread production and only allowing to eat non-gluten stuff?

Seriously you guys need to *** chill.


At any rate, it is important that persons know and have the ability to accept or refuse whether or not to have their personal information used in such a database.  Furthermore, if minors are involved, their names should be in no way connected with the data that their parents allow for submission.  Also, there should be no other way to obtain their personal identities such as attached SS numbers, etc.  

Perhaps some good may come of the registry, but there is a lot of potential for abuse and those who dismiss that potential are not looking at all sides of the issue.  It is important that the Autistic community be aware of these types of things and that they be discussed among us.  Hence my posting of the article.  

I am curious, what exactly is meant by "*** chill?"

Janet Wrote:

test4echoyyz Wrote:
I was told that there was nothing more that could be done for my child aside from "residential treatment."  This was a flat blatant lie given to me by a so called professional who did not desire to do the extra legwork required to learn about AS and help my child. Needless to say, I now homeschool and things are coming along very nicely. Smile


Yes, but with IDEA, you can call the state ed dept or the disability law department and they will follow through.  If its serious enough, they will send you an advocate (at which time the school personell start wetting themselves).  I just had to do that with my son's team.  They were trying to push me around.  I don't know what parents who are not savvy do, however.

A section 504 of the ADA is as good a the team that supports it .  If they don't want to do anything (which is typical b/c schools do not get reimbersed through ADA - they do through IDEA).


We lived in a rural area and the ride to the school was over an hour away.  The running was literally wearing both of us out, he was extremely unhappy and he wasn't learning anything but he was losing his self esteem.  

That coupled with the fact that they were going to try to push me into placing him in a residential facility was enough. Thus, I decided to do what I thought was the savvy thing and take him out and educate him myself.

I'm glad that you have been able to get things straightened out for your son's team.

I.Face.Palm Wrote:
This bill is no more worrisome than any of the other registries that have been established. While it is true that employers might discover the information contained therein if it were to be made public, they would not be able to discriminate based upon that information.  Aspergers is currently covered under the Americans With Disabilities Act and therefore if someone was either not hired or fired based on the fact that they had Aspergers, the employer could face a lawsuit. While it may take time to carry through a lawsuit, I consider the Americans With Disabilities Act a sufficient protection against employers.

There also seems to be some confusion about what exactly the registry is intended to be used for. It is not intended to track individuals, but instead provide accurate numbers on how many people have conditions that fall under the scope of Aspergers. This information would allow better protections for these individuals and would also allow researchers to discover how prevalent Aspergers is in the state. There are also bills being considered that would provide health care, should it be needed, to a wide variety of people that fall under the disabled category and this registry would allow for a greater efficiency in these programs' management.


The ADA doesn't stop discrimination by employers, they can just make up a BS reason to refuse to hire you or to fire you and it's almost impossible to prove their actual motives. You can try to legislate discrimination out of existance but that doesn't mean you really got rid of discrimination.

BardWolf Wrote:

Quote:
In a culture which is obsessed with various therapies for any oddity or imperfection, it is very likely that pressure to treat yourself or your children for autism or to abort an autistic fetus will climb to the point where it may be considered criminal negligence to do otherwise.


In what dimention?

Seriously what are they going to force you to do? The odds anything like force treatment or abortion is happing are pretty far out there.

You want X-men way too much <<


Random Joe in the 1930s: "you're paranoid if you think Hitler wants to kill all the Jews."

Janet Wrote:

test4echoyyz Wrote:
That coupled with the fact that they were going to try to push me into placing him in a residential facility was enough. Thus, I decided to do what I thought was the savvy thing and take him out and educate him myself.


Some of the best thinkers of of any centry were homeschooled!!  And how wonderful for you, too.  NO ONE should EVER put a CHILD in a residential facility.  They are NOT SAFE!!!  

By the way, if the school recommends it, then they have to pay for it.  They NEED to be sued!!


Thank you.  I so agree with you.  I wish I had sued them.  I was just so overwhelmed and didn't have the energy left.  Instead I wanted to direct what energy I had towards helping my son.  It hasn't been an easy road, but I think it is definitely paying off. Smile

Janet Wrote:

TaylorS Wrote:
Random Joe in the 1930s: "you're paranoid if you think Hitler wants to kill all the Jews."


Hitler got the idea of eugenics from the USA.  We had programs already under way.  Maybe 5 years ago a book, Breeding Better Vermonters" was published.  

Vermont has a well oiled program that focused much of its efforts on Abenaki (the indiginous people of the area)

Abenaki had to blend quickly and effectly to survive.  maybe last year the Abenaki were recognised as an official tribe.  It took so long due to their lost identity.

We are ssafe right now, but people dont realize how close our adverse history is.  My mother was seven when women were finally able to vote.  Black votes were stolen until the 60s.  b**h (we've been asked to * parts of inappropriate words) has done all he could to take away Random Joe's rights

I don't think it is paranoid to say that we need to avaoid complacency and keep good watch.


I forgot to mention, I think your image there is awesome.  Does that say Co-exist?

Janet Wrote:

test4echoyyz Wrote:
I forgot to mention, I think your image there is awesome.  Does that say Co-exist?


Thank youTongue

Yeah, it does and the chicken one says "horror movie"


Awwww Lol poor lil chickens!

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