By Sara DiFucci
For those of you who haven't read Julie Obradovic's article "The Autism Treatment Acceleration Act", I suggest you do so now (HERE.) This very important topic seems to have slipped under the radar a bit.
Essentially, right now there is a proposed federal bill in draft form that may establish the Medical Home Model as the way of the future for health care, particularly for Autism and other chronic diseases. In essence the MHM is a government run HMO where they along with insurance companies will have the authority to choose our service providers (you know, doctors, therapists, and medical specialists) via government contracts. Actually, it seems it may be even more restrictive in choice than most HMO's.
More upsetting with regard to Autism, under the draft bill, the very organizations who have routinely denied the most recent physical findings and medical treatments that help many of our children and have continually denied to support research into causation of ASD, may have the authority to define exactly what treatment those service providers are allowed to provide in the first place. Think about how many pediatricians have you seen (that weren't DAN) that you would trust to handle all of your child's medical treatment and to take decision making control for the treatments your child could receive?
This model is being promoted by an organization called the Patient Centered Primary Care Collaborative, an organization that despite its name does not have many patients as stakeholders. Rather, the PCPCC is an organization of over 250 members representing the pharmaceutical industry, large employers looking to lower health care costs, doctor groups, and insurance companies. For a complete list of the executive committee, read the article. It is not hard to understand why they would think the MHM is a fabulous way to provide health care: they choose the providers; they define the treatment, and they get to say they are doing it all in the name of the patient.
For the tens of thousands those of us who are struggling to find the resources to pay for our children's treatments, it seems ironic to see the PCPCC's lobbyist, Edwina Rogers, seen here in a You Tube clip, featured on the Colbert Report, wrapping gifts in actual sheets of money! http://www.youtube.com/watch?v=xXj-oQm-NbE
Their opulent 18,000 square foot home would indicate that she and her husband Ed Rogers, a co-founder of the power-house lobbying firm of Barbour, Griffith & Rogers are very, very good at what they do. Their client list is a contract lobbyist wish list, including such companies as Eli Lilly. Wow, that too is ironic, one of the companies that makes thimerosal wants to have a hand in determining the medical treatments children with ASD could receive? Given the tremendous influence these corporations and individuals may have over our children's health care, it is important to understand their point of view in policy for our children's healthcare.
At a time when so many thousands of parents are struggling just to make ends meet so that their children can get well, one can only hope the Rogers recycle.
If not, perhaps someone should tip off the garbage collector.
Sara DiFucci is a Co-coordinator for TACA, Illinois and Media Relations Director for F.A.I.R. Autism Media.
Thank you for this information! I am always passing the word about t.a.c.a. even if i have not been able to jump into it. I know its the right start.
Posted by: Patricia McGuire | January 07, 2009 at 12:51 AM
Thank you, Sara. Excellent and alarming. We as a community must fight harder than we ever have before. I think Edwina and those like her need to be called out publicly, as was done here. These pests to our community will scurry when the lights are turned on...
Posted by: Erik Nanstiel | January 04, 2009 at 11:02 PM
I dearly hope all of you who clicked on the video link will also go to www.pcpcc.net and actually READ the patient charter. This organization does NOT support a gatekeeper/HMO model. It does NOT exclude consumer groups (they serve on the advisory board and are among the many members). The model rewards pediatricians for helping coordinate care for children with chronic illness, and we get to choose who delivers that care under the same terms we have now with whatever insurance we buy. This particular legislation aside, the patient-centered medical home model is one doctors and other health care providers, as well as patients who understand it, truly support. It pays them to be available for phone calls and emails, to coordinate care and include nutrition, etc. counseling they don't get paid to do now.
Posted by: Sandy | January 04, 2009 at 11:01 PM
Some pediatricians have been promoting the Medical Home Model as a welcoming umbrella for autism families, hopefully to replace the fractured and far-flung service delivery system parents have patched together out of necessity. How many of these doctors realize how their good intentions are being subverted by opportunists and profiteers? And will they dare to speak out?
Posted by: nhokkanen | January 04, 2009 at 06:34 PM
Money wrapping paper? Sick, especially in this time with this economy. She should be ashamed of herself. I guess her guilded age is far from over, and that to me, is very very sad. So NOT at touch with reality.
As far as the bill, equally, if not more disturbing than her blatent - in your face - touting of her 'riches'....how can anything call itself a 'patient' group, with NO patients on the board? Well technically I guess in some sort of twisted thinking, any person could be a patient, but come on, an actual patient or family of someone who is at least related to the 'issues' they are 'trying' to 'solve'....Gross.
I really hope that our voices will get thru to those officials that really DO want to help our families and our future generations. I know that there are still great people in this world (as evidence from all of the WONDERFUL people I have met in the Autism community), but we have to make sure that everyone is truely, factually informed....same as full information for parents on vaccinations. Informed, TRUELY informed consent.
UGggh, I know I am preaching to the choir here, but thanks for listening! GREAT reporting, please keep us updated as usual! Great job guys!
I dont know what I did before AoA, I really dont! LOL!
Mom to Ethan, Alex, and Megan
Posted by: Angie | January 04, 2009 at 04:15 PM
Sara DiFucci and Julie Obradovic have provided excellent summaries on the Age of Autism blog as to why the misleadingly named "Autism Treatment Acceleration Act" contains a bad model for providing services to children with physiological conditions grouped under the "autism" label.
I strongly support the efforts by Illinois parents to oppose this bill. Every parent who wants the freedom to help their child should communicate to Senator Durbin their serious reservations about this bill.
Robert J. Krakow,
Attorney At Law
Posted by: Robert J. Krakow | January 04, 2009 at 03:13 PM
This bill *landed* in my lap a week before the elections. I was opposed to it then, and I'm opposed to it now.
Generation Rescue will continue to support the Illinois parents who are leading the fight to make sure the current medical home model (MHM) language contained in the draft bill is NOT incorporated into any legislative package.
That said, the insurance portion of this bill is worthy of further debate and we will be discussing this with others (Durbin, Illinois parents and other autism organizations) as the process moves forward.
Bottom Line: The situation is very fluid and we will be watching it *closely* and keeping our options open as changes are made in the next few weeks.
Kelli Ann Davis
D.C. Political Liaison for Generation Rescue
Posted by: Kelli Ann Davis -- on Behalf of Generation Rescue | January 04, 2009 at 01:26 PM
I entirely agree Sara. This model is a psychiatric model, one that does not fit autism in the least. Until we establish an understanding of autism being an autoimmune related illness not a psychiatric one, our children will further fall through the cracks of mistreatment, dangerous psychiatric drug related experimental exposures and it will take away parental decision making. This is not an avenue we can head down.
Thank you for writing about it. There seems to be far too much support behind this bill in our community. I don't think it's language is truely understood.
Posted by: Allison | January 04, 2009 at 01:17 PM
Alarm bells need to be going off right now. After being educated on this and having discussions with some very smart and savvy folks, it was not hard to come to the conclusion that this is a devastating piece of legislature. For those of us who treat our children's medical issues, ie immune, neurological, sensory, speech, toxicity, diet, chronic bacterial, viral, fungal issues, think "no choice" and "co-morbid, not autism"- no treatment.
Bottom line -- our rights and our children's health issues will be denied and not just on paper, like from the NYT, but in reality, with the signing of this bill.
Please read any and all information that will be coming out. I am sure that there are some very important people involved who have been given sound bites, graphs, and numbers to explain how this bill will help the current autism situation. These important people are probably very sincere on wanting to address the issues of autism BUT this bill is NOT the answer.
At the end of the day, we are the ones taking care of the health of our children. This bill will jeopardize that for every one of us.
Posted by: Teresa | January 04, 2009 at 11:54 AM