Generation Rescue Action Alert: Stop The Calls, They've Heard You!
By Kelli Ann Davis
UPDATE ON GENERATION RESCUE AND AUTISM ACTION NETWORK ACTION ALERT -- STOP THE CALLS – THEY’VE HEARD US!
Senator Durbin's office called me today:
1.) They have heard from our community and asked us to halt the "Alerts" until we can see the revised draft bill which they are still in the process of writing;
2.) They initially planned on introducing the bill in February, but because of our concerns (Translation: Action Alerts) they have decided to take the extra time to make changes to the bill based on information from us and others;
3.) Contrary to comments made on AoA under our First Action Alert, there has never been any "revised draft" to the original bill and as of now, the original draft of the bill is the ONLY one available;
4.) They have removed the term "medical home model" BUT they still are planning on introducing a bill which includes a "demonstration project of coordinated care" which I told her sure sounds like "medical home model" language to me;
5.) TAP and Easter Seals are "still at the table" and I told her that although I would "reserve final judgment" until I personally read the revised bill, I didn't think they'd (TAP/Easter Seals) bother to keep advocating for the bill unless there was something "in it" for them;
6.) They assured me they would submit the revised draft bill to me directly and allow us time to respond to it before they introduce it;
7.) They told me the revised draft bill should be ready in a few weeks.
Bottom Line: Although they have heard us and know what our community wants, we’ll have to wait and see what the actual language of the revised draft bill contains before deciding on our next steps in regards to proceeding forward with any more alerts.
We’ll keep you posted.
Thanks!
Kelli Ann Davis
D.C. Political Liaison for Generation Rescue
Easter Seals has their own Autism Action Alert going on the homepage of Huffington Post.
Posted by: Catherine Schleimer | March 03, 2009 at 08:53 PM
"What I wonder is whether this big push for a Home Model of autism care can be turned somehow to our advantage -- so long as that home model resembles DAN protocols and other biomed testing and treatments rather than being psych-based "no cure" attitudes, and that those protocols would therefore be covered by insurance. If AAP physicians want education, maybe we need to give it to them!"
Unfortunately Garbo, I wish it were that easy! A couple of points:
1.) As Allison pointed out last week in another post, the "revised draft language" that we submitted gives parent the FREEDOM to choose the health care they want for their child -- and of course, that could include DAN! Doctors.
2.) The original "bill" by then Senator Obama and Senator Durbin was ALREADY written and ready to be introduced AS IS and IT'S ONLY BECAUSE IT LANDED IN MY LAP, we've been able to "stall it" and get ourselves involved in the process.
That said, the original "bill" had organizations like TAP, Easter Seals, AAP and others putting in their "two cents" and as you can expect, mhm language was a huge component because, quite frankly -- they make money off of this type of model. And here's the "clincher" -- THEY'RE STILL SITTING AT THE TABLE helping to craft this bill!!!
BOTTOM LINE: And this important for the community to read: GR IS NOT WILLING TO USE THIS ORIGINAL BILL AS A "STARTING POINT" FOR NEGOIATIONS AND WE WILL NOT SIT DOWN NEXT TO TAP, EASTER SEALS, AND ANYONE ELSE WHO STANDS TO BENEFIT DIRECTLY FROM THE PASSAGE OF THIS BILL.
That's where we draw the line.
Kelli
Posted by: Kelli Ann Davis -- I WISH IT WERE THAT EASY | March 03, 2009 at 07:24 PM
Will this "home medical model" or "demonstration project of coordinated care" prevent parents from accessing care and treatment for their children with autism from other primary physicians if they expect to receive insurance reimbursements?
I gave up on pediatricians years ago when it became evident they didn't know how to medically treat ASDs appropriately anyway. Most of my expenses incurred are out-of-pocket anyway since the kids' medical insurance is so piss poor for autism dx.
I'm not sure this legislation will actually change very much in the way that many autism parents access medical care for their children. I see no reason to ever take my children back to see a pediatrician since I am satisfied with their primary care family physician. What parent would want to take their kids back to the pediatrician that poisoned their kids with inadequately tested vaccines in the first place?
Posted by: It's a corrupted process | March 03, 2009 at 07:08 PM
Found another study along these lines done in 2007 also at U of MN, different group of researchers but the same Dept. and Div. of the University, published in the Archives of Pediatric Adolescent Medicine April 2007:
"Comparison of indicators for a primary care medical home between children with autism or asthma and other special health care needs: National Survey of Children's Health.
Brachlow AE, Ness KK, McPheeters ML, Gurney JG.
Department of Pediatrics, University of Minnesota, Minneapolis 55455, USA. [email protected]
OBJECTIVE: To assess the extent to which parents of children with autism compared with parents of children with asthma or other special health care needs report receiving primary care for their child consistent with the American Academy of Pediatrics medical home model. DESIGN: Population-based cross-sectional study. SETTING: National Survey for Children's Health 2003-2004 telephone interview. PARTICIPANTS: Parents of 495 children with autism, parents of 6716 children with asthma, and parents of 11,403 children with other special health care needs without asthma. Main Exposures Autism and other special health care needs including asthma. MAIN OUTCOME MEASURES: Medical home score and components of care, as follows: personal provider and preventive; family-centered, compassionate, and culturally appropriate; accessible; comprehensive; and coordinated. RESULTS: The odds of parents reporting care consistent with that in a medical home were less likely for children with autism (odds ratio, 0.45; 95% confidence interval, 0.30-0.66) and more likely for children with asthma (odds ratio, 1.17; 95% confidence interval, 1.06-1.30) compared with children with other special health care needs (1 [reference]). These differences persisted even after controlling for condition severity, personal characteristics, and insurance status. Specific components of a medical home less prevalent among children with autism than among children with other special health care needs included family-centered, comprehensive, and coordinated care. CONCLUSION: Although we could not evaluate the reasons why, a large percentage of children with autism do not receive primary care consistent with that in a medical home."
So, the first study says kids with autism do not receive primary care, BUT WE COULD NOT EVALUATE THE REASONS WHY, even though the survey was of PARENTS. Did they not even bother to ASK?? The second study published this week says that PARENTS SKEPTICAL OF TRADITIONAL MEDICINE AND VACCINES and THOSE SEEKING COMPLEMENTARY ALTERNATIVE MEDICINE are, in the opinion of pediatricians, barriers to a home model. It also says that according to physicians themselves, they LACK COMPETENCE AND EDUCATION in providing care to children with autism.
Did it ever occur to any of these researchers that maybe the reason why they don't go to see pediatricians for home care is BECAUSE THE PEDIATRICIANS ACTUALLY DO LACK COMPETENCE AND EDUCATION? Does it occur to the AAP that the education of their physicians re: Autism must go beyond kicking parents out of the practice for questioning vaccines, or doping kids up on dangerous psych meds? No, because they are funded by pharma.
What I wonder is whether this big push for a Home Model of autism care can be turned somehow to our advantage -- so long as that home model resembles DAN protocols and other biomed testing and treatments rather than being psych-based "no cure" attitudes, and that those protocols would therefore be covered by insurance. If AAP physicians want education, maybe we need to give it to them!
Posted by: Garbo | March 03, 2009 at 05:52 PM
Here's a cut & paste of the abstract. I don't have access to the whole article -- maybe someone with a subscription does?
Medical Homes for Children With Autism: A Physician Survey
Allison Golnik, MD, MPH, Marjorie Ireland, PhD and Iris Wagman Borowsky, MD, PhD
Division of General Pediatrics, Department of Pediatrics, University of Minnesota, Minneapolis, Minnesota
BACKGROUND. Primary care physicians can enhance the health and quality of life of children with autism by providing high-quality and comprehensive primary care.
OBJECTIVE. To explore physicians’ perspectives on primary care for children with autism.
METHODS. National mail and e-mail surveys were sent to a random sample of 2325 general pediatricians and 775 family physicians from April 2007 to October 2007.
RESULTS. The response rate was 19%. Physicians reported significantly lower overall self-perceived competency, a greater need for primary care improvement, and a greater desire for education for children with autism compared with both children with other neurodevelopmental conditions and those with chronic/complex medical conditions. The following barriers to providing primary care were endorsed as greater for children with autism: lack of care coordination, reimbursement and physician education, family skeptical of traditional medicine and vaccines, and patients using complementary alternative medicine. Adjusting for key demographic variables, predictors of both higher perceived autism competency and encouraging an empirically supported therapy, applied behavior analysis, included having a greater number of autism patient visits, having a friend or relative with autism, and previous training about autism.
CONCLUSIONS. Primary care physicians report a lack of self-perceived competency, a desire for education, and a need for improvement in primary care for children with autism. Physician education is needed to improve primary care for children with autism. Practice parameters and models of care should address physician-reported barriers to care.
Key Words: autism • medical home • physician survey • primary care
Abbreviations: CAM—complementary alternative medicine • CME—continuing medical education • ABA—applied behavior analysis
Accepted Jul 14, 2008.
Posted by: Garbo | March 03, 2009 at 02:40 PM
I'd like to see this Pediatrics article!! Anyone have access to it?? Can you "cut and paste" and/or send link to Kim directly??
Yes, Garbo -- very INTERESTING on the timing considering the "bill" was supposed to be introduced right about now and the article was submitted in July of last year!!
Remember, originally then Senator Obama and Durbin were poised to introduce it during the lame duck session. That's probably why it was submitted back then and of course, they held off until NOW.
I need to see this ASAP.
Good Job Garbo!!!!
Kelli
Posted by: Kelli Ann Davis -- HELP -- NEED FULL ARTICLE ON PEDIATRICS MHM | March 03, 2009 at 01:42 PM
This is an appropriate time to repeat a story of about 5 years back. My pediatrician daughter went out of her way to drive to San Francisco to hear a talk by someone who was supposed to be a leading California doctor in the field of autism. Naturally there was no mention of mercury or environment, but after the talk my daughter managed to talk to the speaker and this is the line I want everyone to hear: " If you know anyone who has an autistic child, tell them to try the alternative therapies - Some of them have done miracles " Thats mainstream medicine being honest about autism .
Last year my daughter gave me a medical manual about autism for doctors. It was quite thorough and gave some interesting observations about behavior of autistic kids, but then came the kicker- a page listing about 15 psychiatric medications to be used for autistic kids. That's all they've got friends, for your child !
If Im not mistaken, I dont think we have ever had a post on AOA telling us how much better a child got on a psychiatric medication.
Posted by: Cherry Sperlin Misra | March 03, 2009 at 01:14 PM
Hmmm...well, I just saw this physician survey study about Medical Homes for Autism, from Pediatrics on-line.
http://pediatrics.aappublications.org/cgi/content/abstract/123/3/966
Sure smells like they're gearing up for Medical Home Model...if you read the fine print, it includes as some of the barriers: "parents who are skeptical of traditional medicine and vaccines, and those who are using complementary alternative medicine."
Yeah, that would be me. The one who's done all the research and found the treatments for my children that have helped to recover them from injuries that the pediatrician was blithely oblivious to in the first place. Um, hellooooo! What kind of treatments do you think are going to help those families you want to be a medical home to? DAN doctors already ARE medical homes for autism!
Interestingly, this article was accepted for publication in July of last year. Convenient timing for it to be published now, in concert with lobbying for the Durbin bill, no?
Posted by: Garbo | March 03, 2009 at 12:13 PM
Badpenny:
They WILL show us the "bill" -- when it's done being revised by their Legislative Counsel.
Right now, the only "bill" is the original draft and we've already voiced our opinion on *that* loud and clear. They get it.
Sure, we could continue the calls, but as time went by over the next several weeks, they'd become "few and far between" and the impact would be diminished.
We need to wait.
Once we see the revised "bill" (and IF it doesn't meet our standards), *THEN* we can call on the community in full force.
Bottom Line: There is a VERY fine line between "making our voice heard" and getting the changes we want without alienating them. And right now, we need to give them a chance to incorporate our suggestions.
Kelli
PS....Suffice to say, after the last several weeks, I don't *trust* anybody. But in a few weeks, we'll be able to see the finished product and can deal with it accordingly at that time.
Posted by: Kelli Ann Davis | March 03, 2009 at 12:06 AM
What's infuriating to my wife and I (we both e mailed seperately) is that Durbin always seems to send e mail responses that "explain to us" what autism is. How condecending can they be?!
He's an absolute idiot! (coming from somebody in Illinois no less!)
Posted by: curt linderman sr | March 02, 2009 at 11:36 PM
Show Me The BILL. Do any of us really trust them. I say we start calling saying SHOW ME THE BILL! Show me the bill! and when you show us the bill with some constructive language not just the same proposal reworded. Then we'll stop calling.
Posted by: badpenny | March 02, 2009 at 08:40 PM