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TheZach
Velociraptor
Joined: Aug 11, 2007
Posts: 445
Location: Michigan, USA
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schleppenheimer
Phoenix
Joined: Sep 01, 2006
Posts: 953
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 Posted: Wed Jul 02, 2008 1:03 pm Post subject: |
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| I live in Pennsylvania, and basically, it would seem that the bill that is spoken of was good originally, and then as it got closer to passing, provided too many back doors and loopholes for insurance companies to avoid giving any monetary help to children with autism. I'm not exactly sure what part Autism Speaks had in this -- it will be interesting to hear more about it. But the bill has passed with the needed strength so that, if enforced, insurance companies will have to insure for autism-related needs. At least, that is the way things look currently. Things could always change -- but let's hope they don't, because this could be the beginning of help for all states to make insurance companies recognize autism as a biological disease and not a mental health issue. |
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penny07960
Snowy Owl
Joined: Jun 10, 2008
Age: 44
Posts: 154
Location: US - right coast
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| Posted: Wed Jul 02, 2008 2:58 pm Post subject: criticize Autism Speaks, but have specific reasons |
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I guess I have a problem with the "lets kick Autism Speaks" theme of this thread: I see no specifics in the supplied link about what Autism Speaks did wrong. Anyone can throw out the charge "they failed to listen to us"; that is meaningless. Specifically, what did local advocates want that Autism Speaks failed to lobby for, or worked against?
Please – if we are going to attack a person or group, let’s be specific regarding the faults we are alleging.
If it is true that Autism Speaks has no autistic people advising them, or on their board, this is a legitimate criticism. How does it know what help autistic people want or need if it fails to constantly seek their input? How better to constantly get their input than to include them as part of the organization's decision-making body? I suspect, but do not know, that one reason that Autism Speaks does not include those with autism is that doing so would appear to undermine the “autism is the worst thing in the universe” line that they seem to be pushing.
If it is true that Autism Speaks exaggerates the negative aspects of autism to raise money, this is a legitimate criticism. Doing so makes those of us that are at the HFA end of the spectrum look more disabled than we are.
Perhaps Autism Speaks should be named “Union of Parents Of Severely Autistic Children”. While it is true that Autism Speaks does not speak for me, it may speak for some of them.
With regard to schleppenheimer's comment "... recognize autism as a biological disease and not a mental health issue", okay, I agree it is biological. I agree that the world would be better off if it were recognized as such. I am not so sure I would want it labeled as a disease. Again, how much of a dis-ease it is depends on where you are on the spectrum. I am fairly at-ease with my aspergers. On the other hand, I certainly want the poor family struggling to get help for their non-responsive, tantrum-throwing 3 year old to be covered by the insurance company.
Once again – including us all under the same ASD umbrella does a disservice to individuals both ends.
But back to schleppenheimer's comment , the truth is that almost all "mental diseases" will prove to be biological diseases or conditions. Sure, the PTSD associated with being an abused child, or a rape victim, or a war veteran may be "psychological". But schizophrenia, manic depression, OCD, etc etc are certainly biologically based. Autism is a biological condition. |
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jat
Snowy Owl
Joined: Mar 30, 2008
Posts: 135
Location: Pennsylvania
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| Posted: Wed Jul 02, 2008 3:01 pm Post subject: |
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| I also live in Pennsylvania, and many of us spent a good part of this week and weekend calling and emailing legislators and encouraging others to do the same. The state Senate amended a very good bill to make it so bad the the original author and sponsor was willing to let it die, rather than have it pass as amended. Luckily, that didn't have to happen, because even though the Senate passed the poorly amended bill, the House further amended it, and the House's version is expected to be accepted by the Senate this week. Meanwhile, dozens of organizations in the state opposed the bill passed by the Senate, while only Autism Speaks, with no PA representation, supported it. Everyone is PA is so angry at Autism Speaks: it has united groups that probably have very little common ground otherwise! |
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schleppenheimer
Phoenix
Joined: Sep 01, 2006
Posts: 953
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| Posted: Thu Jul 03, 2008 12:09 pm Post subject: |
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penny07960, you are right -- it was incorrect for me to use the word "disease" -- I got typing too quickly, and wasn't thinking when I typed that.
But the issue is still -- insurance companies don't want to fund mental health issues if there's any way they can avoid it. If the autism community can find a way to have legislation passed that makes it clear that autism is a biological syndrome as opposed to a mental health issue, then we are closer to getting some therapies/medical help paid for.
Therapy has been helpful for my AS son, to some degree, and at this stage (12 years old) we are needing less and less help. But a parent of a child with full-blown autism needs all the help that they can get, and that help is expensive and catastrophic for most families. It's criminal that this help is denied to them, after years and years of paying insurance premiums, based purely on a loophole or backdoor clause that allows an insurance company to not have to pay. Even in our situation, with milder autism/PDD-NOS, we could have really used some of the help that was denied to us when our son was young. There are all sorts of families who could really use help medically, therapeutically, that insurance currently refuses to pay for, and it's about time that they are not denied the help that they need. |
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TheZach
Velociraptor
Joined: Aug 11, 2007
Posts: 445
Location: Michigan, USA
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| Posted: Thu Jul 03, 2008 12:33 pm Post subject: |
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| schleppenheimer wrote: | penny07960, you are right -- it was incorrect for me to use the word "disease" -- I got typing too quickly, and wasn't thinking when I typed that.
But the issue is still -- insurance companies don't want to fund mental health issues if there's any way they can avoid it. If the autism community can find a way to have legislation passed that makes it clear that autism is a biological syndrome as opposed to a mental health issue, then we are closer to getting some therapies/medical help paid for.
Therapy has been helpful for my AS son, to some degree, and at this stage (12 years old) we are needing less and less help. But a parent of a child with full-blown autism needs all the help that they can get, and that help is expensive and catastrophic for most families. It's criminal that this help is denied to them, after years and years of paying insurance premiums, based purely on a loophole or backdoor clause that allows an insurance company to not have to pay. Even in our situation, with milder autism/PDD-NOS, we could have really used some of the help that was denied to us when our son was young. There are all sorts of families who could really use help medically, therapeutically, that insurance currently refuses to pay for, and it's about time that they are not denied the help that they need. |
Ok - I respect you as parents but frankly I dont appreciate how your spinning this thread.
If you would look into the source material you will see that Autism Speaks is being critizied for changing a lot of language in the bill that can render the bill useless for some Autistic individuals - futher more they come in from outside of the state unaware of the state's healthcare system (each state has its own goverment healthcare system), refuse to listen to input of local clinicians, advocates, and families that would be affected.
So they turned a very strong bill with the orrigianal language into a very diluated and useless bill to some Autistic individuals.
On a side not has anyone been noticing more individuals like these trolling the forums for anything anti-autism speaks? I wonder whats goin on.
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TheZach
<a href="http://www.thezach.net/blog">My Blog</a> |
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makuranososhi
Purple Monkey Dishwasher
Joined: May 13, 2008
Posts: 1991
Location: Arizona
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| Posted: Thu Jul 03, 2008 1:18 pm Post subject: |
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| jat wrote: | | I also live in Pennsylvania, and many of us spent a good part of this week and weekend calling and emailing legislators and encouraging others to do the same. The state Senate amended a very good bill to make it so bad the the original author and sponsor was willing to let it die, rather than have it pass as amended. Luckily, that didn't have to happen, because even though the Senate passed the poorly amended bill, the House further amended it, and the House's version is expected to be accepted by the Senate this week. Meanwhile, dozens of organizations in the state opposed the bill passed by the Senate, while only Autism Speaks, with no PA representation, supported it. Everyone is PA is so angry at Autism Speaks: it has united groups that probably have very little common ground otherwise! |
Thanks for the supplemental information; very helpful. Are there any protests or other actions planned as a result of the language modification? The greatest danger of things going to committee are the effects that special interests can have on influencing the end language.
There is a lot of pent up frustration with ASpeaks, Penny... many who feel insulted or further pushed aside by an organization that claims to have their best interests at heart. It doesn't help either side to sit and attack it, but at the same time there needs to be discussion on what can be done to counter their effects without resorting to attacks.
M.
_________________
He thrusts his fists against the posts and still insists he sees the ghosts.
From my heart and from my hand, why don't people understand my intentions...?
Why choose a lesser evil? Vote Cthulhu 2008! |
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equinn
Phoenix
Joined: Apr 20, 2007
Posts: 652
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| Posted: Thu Jul 03, 2008 1:20 pm Post subject: |
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| schleppenheimer wrote: | penny07960, you are right -- it was incorrect for me to use the word "disease" -- I got typing too quickly, and wasn't thinking when I typed that.
But the issue is still -- insurance companies don't want to fund mental health issues if there's any way they can avoid it. If the autism community can find a way to have legislation passed that makes it clear that autism is a biological syndrome as opposed to a mental health issue, then we are closer to getting some therapies/medical help paid for.
Therapy has been helpful for my AS son, to some degree, and at this stage (12 years old) we are needing less and less help. But a parent of a child with full-blown autism needs all the help that they can get, and that help is expensive and catastrophic for most families. It's criminal that this help is denied to them, after years and years of paying insurance premiums, based purely on a loophole or backdoor clause that allows an insurance company to not have to pay. Even in our situation, with milder autism/PDD-NOS, we could have really used some of the help that was denied to us when our son was young. There are all sorts of families who could really use help medically, therapeutically, that insurance currently refuses to pay for, and it's about time that they are not denied the help that they need. |
ditto
I'm suppose to come up with $950.00 for a week in a therapeutic camp filled with kids on the spectrum? Then, possibly, the insurance company will reimburse me. It's become a racket and people are coming out of the woodwork to make a profit. It sickens me. It becomes an issue of what's turning the wheel, the child's needs or the profiteer? YUCK. |
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jat
Snowy Owl
Joined: Mar 30, 2008
Posts: 135
Location: Pennsylvania
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| Posted: Fri Jul 04, 2008 8:51 am Post subject: |
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For those interested, the bill as re-amended by the House (so that it is back to being a useful, good bill), was voted on by the Senate, and passed 49-1. It is expected to be signed by the Governor, who was siding with the Speaker of the House in opposing the Senate's amendments and wanting the bill restored to its original form. In Pennsylvania, we are celebrating!!
Pennsylvania will now truly have one of the best insurance protection bills for families with autistic children, as opposed to the illusion of one - which was all that Autism Speaks was interested in. Sorry, Penny. That was the reality. Autism Speaks supported the amendment of the bill which gutted the original bill to the extent that it gave insurance companies an easy out so they would not really have to cover treatments for children with ASD: it just looked like they would. They would have been able to decide what they thought was useful or necessary. Because of the service delivery system in Pennsylvania, this would have left many families in a worse position than they are in now. Currently, most children with ASD are eligible for medical assistance regardless of family income. If private insurance does not cover treatment, MA often does. Under the bill as the Senate amended it, if the private insurance had rejected treatment as not medically necessary (as opposed to not covered), it would have been difficult, if not impossible to get MA coverage! Autism Speaks didn't care - they just wanted a "paper" win. Whether or not the bill helped families didn't matter to them. That is why the entire autism community in Pennsylvania is so angry at them. |
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