Generation Rescue and Autism Action Network ALERT! on Healthcare Legislation
Click HERE to read and participate in the Autism Action Alert from Generation Rescue and AAN.
The bill has problems and the true stakeholders have an alternative ,,,,
Senator Dick Durbin of Illinois is poised to introduce autism legislation, incorporating what public health lobbyists call the "Medical Home Model." This legislation would grant treatment authority for children with autism to private organizations.
We know that Senator Durbin and others care deeply about the well-being of our children and the needs of our community. We thank Senator Durbin for his efforts. The proposed draft of his bill incorporating the "Medical Home Model" would restrict parents’ health care choices. The draft bill would interfere with getting appropriate medical care and treatment for our children while providing a financial windfall for special interest groups.
I am a grandmother of an 11 year old grandson. He is my daughters first born after waiting 10 years to have a child. He was diagnosed with autism at 18 months. This was devastating for my daughter and the family. After getting over the shock and wiping away the tears, she has become an advocate and very strong voice on autism. She firmly believes the immunizations have a great deal to do with it. He was a normal birth and a loving baby. She hated taking him for his baby shots. To see them giving this small child three shots at one time that blew his little leg up like a ballon. It irritated her. She now refuses to have him immunized with that many shots at once. She has him on a special diet, because he has to much yeast in him system from the immunizations. He is in the spectrum in school and is loved by so many people. We pray as a family that someday we will see more done for these children and the families that care for them. This is a life long commitment, not your tipical 21 year commitment.
Posted by: Maria Daudet | March 14, 2009 at 03:58 PM
*"Well I Dont Really Know About Any Of The Rest Of Normal Pepole?? But At Lest Well High Funktioning Autistic Savant As You Normal Epepole Not Have Truely have Spoke'n Up not only for Us But also For All Of Lower Funktion P.D.D. Autistic Pepole all kids & Teens & Adults that this Way 7 also this Way From birth too also & Now thru President Oboma. We Now what's The Normal pepole Like Ot Now We Have the "New Olmestead law. to Proteck us 7 All Of Sp. Need S.C.H.I.P. & all Of Really Neeed Of Sp Nedds Funding & New Sp Eadd. Learning Tools & Now Now Because of that newOlmestead law You Normal Peple Just Cant Ever Put Us In A Nut House of mental Hospital & Nut Nurseing Home Ever Again. Because Dissale Pepole think's? "Nurseing Home "Stinks!! & also Autistic & Retarte Pepole think's "Instution,Stinks. too also. Because Now because of New Olmestea law that is Now A U.S. Fed Law Well Can tuely Get all of Hlp that Really Need Now So Much Cheepper then Just Putting us Away In Some Nut House or Nurseing Home & WeStill get Truel Stay in Our Very Home Home too to Bute Also Eh?
Posted by: John & Suzanne Beaver | March 12, 2009 at 01:34 PM
I support this legislation on behalf of my son Brandon , 11, who is Autistic.
Better Health care must be found for the Autistic kids and Adults who all too often fall throught the cracks.
i urge you to look at this legislation and make it LAW!
Posted by: Paola Lomboy | March 12, 2009 at 07:04 AM
Amazing isn't it Bob, how "James" and "Gary Bigfeet" seem to have all the "inside" intel on what GR has and hasn't done behind the scenes. Me thinks they may have a split personality disorder.
I've NEVER posted ANYWHERE what AS's stance is on this bill and whether or not they "invited us" to become a part of their "coalition" in regards to this bill.
DEFINITELY an insider that "James/Gary Bigfeet" -- too bad he doesn't have the balls to state his real name.
Posted by: Kelli Ann Davis -- To Bob | February 19, 2009 at 06:21 PM
"Normally, you've got great info, but I've been watching this legislation, and haven't found anything related to TAP in the bill. Also, get the newest version. Medical Home has been taken out of the most recent draft. I'm a grand-dad of a child on the spectrum."
Dear James:
Thank you for your comment.
As of 2/17/09 the Medical Home provision was still in the draft and I was advised by staff that the draft was not going to be changed. If that removal occurred today - 2/18/09- we have not been so advised by Senator Durbin's staff. But that is wonderful news, and directly responsive to our effort to get it removed, which began weeks ago and intensified yesterday, and appears to have precipitated the removal of the offensive portions of the legislation.
Please feel free to forward the "newest version." It is gratifying to see that advocacy efforts have been successful. Thank you for the great news!
Sincerely,
Robert J. Krakow
Posted by: Robert J. Krakow | February 19, 2009 at 08:22 AM
"Autism Speaks invited a whole bunch of people to comment on this bill, including Generation Rescue. What gives? I don't know about TAP, but Durbin has taken Medical Home out of the bill. Why can't we be PART of the process for a change?
Posted by: Gary Bigfeet|February 18,2009
Dear Gary Bigfeet:
Your post is interesting indeed. Precisely when was the Medical Home provision taken "out of the bill" and who communicated this to you? I participated in a conference call with Durbin's staff in which I explained why we oppose the Medical Home provisions. We were advised by the staff - very clearly - that the bill was going forward "as drafted." I have heard from individuals affiliated with other organizations that now -as of 2/18/09- the Medical Home provision has been "removed." As of Tuesday 2/17/09 when we started our campaign it was still in there. Now one day later it is "removed."
Sounds like our participation in the process caused its removal, if that has, in fact, happened. Until I hear it from the source, however, it has not been "removed."
As far as an "invitation" from Autism Speaks is concerned, last time I checked Americans all have the right to voice their concerns to their elected representatives. We do not need an "invitation" from any intermediary to do so. We have taken our concerns and those of the community directly to our representatives.
Seems that our method of advocacy has worked just fine.
But, I am very happy to hear about invitations to weigh in on the bill, AFTER it was drafted and circulated to some parents of children with autism. Our view is that we don't require invitations to comment on legislation, have not received invitations in a meaningful and honest fashion, and we will not wait for invitations to act.
But, thanks for letting us know we were "invited." And please, let me know who on Senator Durbin's staff advised you that the Medical Home provision was "removed." That is great news and is a direct result of our campaign to get it removed.
Sincerely,
Robert J. Krakow
Posted by: Robert J. Krakow | February 19, 2009 at 08:17 AM
First, we were told by Durbin's staff there WASN'T an updated draft -- only suggestions they were hearing about and they told us at that time there would be NO changes (i.e. stripping out the MHM or going to an insurance only bill).
Second, TAP WAS involved with the medical home language in the original version -- we were told this *DIRECTLY* from Durbin's staff before Christmas.
Third, I can't go into details here but there is a REASON that GR decided against going "UNDERNEATH" Autism Speaks for these discussions.
Fourth, as you can see by the success of this Alert, we are more than capable of speaking for ourselves.
Bottom Line: You have no idea what is going on "behind the scenes" and unfortunately I can't discuss it on a public forum.
Kelli
Posted by: Kelli Ann Davis -- To Gary and James | February 18, 2009 at 05:12 PM
Kelli,
The updates are very much appreciated. It's easier to keep going when you can see some results.
We are a bigger group (unfortunately) every day.
We will bring about change. I'm no longer sure how, how much, or when, but positive change is coming--the only direction left is UP!!
Terri
P.S. Thanks especially for the heads up on Phase 2. We are here; we are an army; we're ready for some action.
Posted by: Terri Lewis | February 18, 2009 at 04:44 PM
Autism Speaks invited a whole bunch of people to comment on this bill, including Generation Rescue. What gives? I don't know about TAP, but Durbin has taken Medical Home out of the bill. Why can't we be PART of the process for a change?
Posted by: Gary Bigfeet | February 18, 2009 at 02:53 PM
Normally, you've got great info, but I've been watching this legislation, and haven't found anything related to TAP in the bill. Also, get the newest version. Medical Home has been taken out of the most recent draft. I'm a grand-dad of a child on the spectrum.
Posted by: James | February 18, 2009 at 02:39 PM
Teresa: You're on the right track!!!
E-mails are still being sent as they continue to flood my in-box (I can see them as they go out!! Isn't that totally cool?)
We are in the process of issuing another Alert to resend the original information and provide an update (some folks don't know to come to AoA to find out ;-) and also to ask folks to plaster it far and wide!!
Then, we will follow up shortly with Phase 2 -- THE "CALL-IN" CAMPAIGN -- and issue another alert.
We'll keep everyone posted.
Kelli
Posted by: Kelli Ann Davis -- UPDATE E-MAILS STILL POURING IN.....GET READY FOR PHASE TWO | February 18, 2009 at 02:06 PM
Done. I also mentioned my background as a physician and Board Certified psychiatrist who believes that methods discussed at Defeat Autism Now conferences are more beneficial to autistic kids than the approach of AAP.
Posted by: Michael B Schachter MD,CNS, FACAM | February 18, 2009 at 06:02 AM
I sent ours.
Posted by: A@T | February 17, 2009 at 11:11 PM
Great regarding all the emails!
Round 2 tomorrow with phone calls!!!!!!
Posted by: Teresa Conrick | February 17, 2009 at 10:50 PM
So, here's the breakdown of the TOP 10 Recipients:
Senator Reid (NV)
Senator Durbin (IL)
President Obama
Vice-President Biden
Senator Boxer (CA)
Senator Feinstein (CA)
Senator Schumer (NY)
Senator Gillibrand (NY)
Senator Burris (IL)
Senator Lautenberg (NJ)
First 4 have the exact same amount of e-mails sent.
And they're still coming in.
We are a force to be reckoned with and when we combine our voices in this way there is *absolutely* no way to stop us.
ROCK ON!
Kelli
PS....I'll continue to update the community on this project as we move forward. Please continue to spread the word.
Posted by: Kelli Ann Davis -- UPDATE OVER 3,200 EMAIL SENT IN 12 HOURS | February 17, 2009 at 09:23 PM
Dear Senator Durbin,
With all due respect, the best chance for the children that have been diagnosed with
a disorder on the autism spectrum is to leave as much care in the hands of the people who care about them the most. THEIR PARENTS!!! Do you remember what caused the epidemic? Government, lobbyists and people unaffected by the daily grind of raising a child on the spectrum. Please leave us alone unless you really intend to help.
Russel V. Mancino, Esq.
Posted by: Russel V. Mancino | February 17, 2009 at 09:01 PM
Done
Posted by: Kub Marshman | February 17, 2009 at 07:42 PM
Done.
Thank you, AoA, AAC and Generation Rescue for keeping us up to date.
I also sent this alert to several other families I know who have been effected by autism.
Posted by: Pamela | February 17, 2009 at 03:46 PM
As I implied in a previous post, the damaged children and their parents will become targets to be gotten rid of. The governmental-medical-industrial complex will find a way to eliminate the evidence of vaccine-autism damage by medicating these children until they meet an untimely end. This is genocidal behavior. It's less noticable than the Nazi final solution because there are no public ovens but mark my word it's just as effective.
Posted by: mary podlesak | February 17, 2009 at 03:43 PM
Keep in mind, too, that they don't have to track emails, but calls will always get to where they need to go. If you have emailed using capwiz, please also take a few moments to call.
Posted by: cblakey | February 17, 2009 at 03:07 PM
As far as I'm concerned, Mr. Durbin deserves to be thrown out of office for this. He also deserves to have ALL financial ties to wherever he gets his money (bets are 80-90% from Pharma) exposed, and his taxes gone over with a VERY fine-toothed comb. Taxes seem to be the downfall of ALL the bad guys - don't they?
I worry about what this may mean for medical models *beyond* just autism.. The idea seems very similar to the ideas proposed by Daschle included in the stimulus package.. Are they still in the current conference committee version, or did they mercifully get thrown out? And if so, how long until the hydra grows another head?
This is essentially just another (very extreme) version of socialized "medicine". And if it goes through and goes into effect, there will not be less autism, there will be *more*.
Not that I cannot imagine it actually going into effect. Even if passed - there would be a revolt. Wasn't it Thomas Jefferson who said that every generation needed it's own revolution? We're a bit overdue at 200+ years, don't ya' think? (Well, if you count the 60's..)
Jim
Posted by: Jim Witte | February 17, 2009 at 02:49 PM
Done.
All of this makes me think of George Lucas' first film in which the hero and heroine are persecuted for failing to take their drugs. If you haven't seen this film it is outstanding -- "THX 1138"
Posted by: ObjectiveAutismDad | February 17, 2009 at 02:32 PM
Hi All,
So far, several thousand e-mails have been sent. Keep them coming.
Here is the e-mail I sent as follow up to Senator Durbin's office:
Hi Sara,
Generation Rescue and Autism Action Network (AAN) issued an Alert this morning asking parents to send a message to Senator Durbin in regards to the current draft legislation. I've included Robert Krakow (President of AAN) and Stan Kurtz (President of Generation Rescue) in this response along with other members of Senator Durbin's staff. (Here's a link to the Alert: http://www.ageofautism.com/2009/02/generation-rescue-and-autism-action-network-on-healthcare-legislation.html)
As you know, we have major concerns regarding this bill and we also know that there are major issues concerning TAP. The fact that Generation Rescue was never consulted for input into a bill that will effect tens of thousands of children with autism is "troubling" to say the least. Instead, an organization that would benefit directly from the language in this bill was consulted instead.
Generation Rescue represents tens of thousands of parents of children with autism due in large part to Jenny McCarthy and Jim Carrey -- the very backbone of our organization -- and I believe our voice needs to be heard in this important process.
Please let me know if you are open to incorporating our concerns into the bill before it's introduced so I can relay the message to our community.
Thanks,
Kelli Ann Davis
D.C. Political Liaison for Generation Rescue
www.generationrescue.com
PS....I've also been in contact with my US Senator -- Harry Reid -- to communicate our concerns on this bill and to question TAP's involvement in the formulation and on-going discussions considering they would directly benefit from its passage.
Posted by: Kelli Ann Davis -- UPDATE SEVERAL THOUSAND E-MAILS SENT | February 17, 2009 at 02:09 PM
Very easy! Done!
Posted by: Laura | February 17, 2009 at 12:40 PM
done
Posted by: jruch | February 17, 2009 at 12:33 PM
"•The Medical Home Model places undue focus on mandatory vaccination protocols determined by the AAP as the main mode of preventative health, claiming that the benefits far outweigh the risks -see: http://tinyurl.com/bt8zzg."
Is this a backwards way of of claiming that there ARE risks to vaccines? Who the heck is the AAP to decide that my child is expendable? This is utterly impinging on my right of freedom to make choices for my family's health. This smacks of authoritarian rule in the fanatic moslem world. No difference.
Posted by: What BS | February 17, 2009 at 11:52 AM
Thank you to everyone who has participated. ACTAA is an alternative bill that would server our children and their needs. This is an opportunity to have your voice heard before introduction of bills that do little to address their needs and create too many conflicts of interests and financial incentives. How often do "We the People" ever get a real opportunity to do this??
Again Thank you.
Posted by: Allison | February 17, 2009 at 11:43 AM
Mine is done.
I did it for the kids, but Kelli Ann threatened to make me hold her purse if I didn't do it (just kidding).
Posted by: Craig Willoughby | February 17, 2009 at 11:34 AM
Done!
Posted by: Gayle | February 17, 2009 at 11:12 AM
Very easy...no excuse for not doing it! Don't forget to post the link on places like Facebook and MySpace in order to reach more people.
Posted by: Kecia | February 17, 2009 at 11:11 AM
Thanks All.
Senator Reid's office (My US Senator and Senate Majority Leader)is getting plenty of responses as well.
Please pass this alert on to all the lists, etc and make sure it's plastered *far and wide* -- trust me when I say that there is "more to this bill" than meets the eye and we definitely have the "leverage" to make sure our voices are heard and changes are made so that our children are put FIRST!!
Kelli
Posted by: Kelli Ann Davis -- HUNDREDS SENT KEEP THEM COMING | February 17, 2009 at 10:47 AM
Thanks, done. And sent to my local network. I customized form letter with:
Sir:
I am the parent of an autistic boy, 10 years old. He was diagnosed at age two. For the past eight years we have worked to get him appropriate treatments within the health insurance provisions of our policy.
My experience during the past eight years leads me to have grave concerns about provisions in the draft bill I read: “Autism Treatment Acceleration Act” or "ATAA."
Stated flatly, this proposed legislation does not, in its current form, address the needs of the growing epidemic of children with autism that I work with as a volunteer in my community.
Sincerely,
Dr. David Taylor
Posted by: David Taylor | February 17, 2009 at 10:19 AM
Done. Easy.
Posted by: Terri Lewis | February 17, 2009 at 10:11 AM
Done.
Posted by: Diane | February 17, 2009 at 07:59 AM
I just sent mine. Easy as pie. The system remembers you. Take 30 seconds to participate, won't you? We need more THOUGHTFUL HOUSES taking care of our kids and fewer "ABA + Prozac + a Group HOme = enough".
Kim
Posted by: Stagmom | February 17, 2009 at 07:40 AM