Generation Rescue Action Alert, Part 2
Click HERE to go to the Autism Action Network for this important Action Alert regarding appropriate healthcare for your children. The verbiage is below:
Follow Up and Follow Thru.....
Here's What We Need to Do!!
CALL – IN ACTION ALERT
It’s time we starting calling in and go on record for what our children really need!
• Thank you! 1000’s of e-mails were sent in a 48 hour period last week regarding the health care of our children, we are being heard! (HERE)
• We are the parents and our voices should be the most prominent when it comes to legislating medical care for our children, not the large private organizations seeking millions of dollars from this bill.
• Easter Seals issued an Action Alert (HERE) asking individuals to support Durbin’s current draft describing the Medical Home Model as a “National Autism Family Resource and Information Center” – Yet, we know better!! We need YOU to speak up for our Children and fight for legislation that puts them 1st and not legislation that benefits specific organizations!
PLEASE TAKE THE FOLLOWING STEPS
Remember to be polite, respectful and make your points calmly.
STEP 1: Make calls to the 7 KEY targets located at the end of this alert.
STEP 2: After your calls, go to Age of Autism and RECORD your participation by posting a “Done” message in the comments area. THIS IS EXTREMELY IMPORTANT!!!
STEP 3: Keep up the pressure by repeating daily calls to the 7 KEY targets until instructed to stop. Look for UPDATES on Age of Autism.
STEP 4: Forward this Alert far and wide!
• Let them know if you are a constituent of their state
• Tell them you support Generation Rescue and Autism Action Network’s stance on the Durbin bill and you support ACTAA --the alternative draft that puts your child 1st!
• Tell them your personal stories on biomedical success and stressful, empty encounters with AAP and other mainstream physicians.
• The AAP does not test for any common multiple medical diagnoses seen in autism even with symptoms. Every physical symptom of autism should not be written off as behavioral.
Here are the 7 KEY targets to call
DC: 202-456-1414 (switchboard)
Ask for: Office of Public Liaison & Intergovernmental Affairs
Senator Reid (Majority Leader):
DC: 202-224-3542 Ask for: Steve Krupan, Press Secretary
Reno, NV: 775-882-7343 Ask for: Mary Conelly, State Director
Senator Durbin (Sponsor of ATAA):
DC: 202-224-2152 Ask for: Joe Shoemaker, Communications Director
Springfield, IL: 217-492-4062 Ask for: Bill Houlihan, State Director
Senator Casey (Co-Sponsor of ATAA):
DC: 202-224-6324 Ask for: Larry Smar, Communications Director
PA: 570-941-0930 Ask for: Charlie Lyons, State Director
Done...sort of. I called every contact and left messages for Bill Houlihan, Larry Smar, and Charlie Lyons. I wasn't able to get even that far with all the others.
I will be trying again.
Posted by: Tommy Shannon | March 05, 2009 at 01:50 PM
I spoke and/or left *direct* messages with all 7 Key Targets on Friday.
Also rec'd a late afternoon e-mail from Senator Durbin's staff who will be calling me on Monday so we can set-up a conference call to discuss the bill and our language we submitted to their office before Christmas.
Also, spoke with the White House (internally) and was told they were getting the calls/messages and verified some contact information that was posted here on Thursday.
We may follow up more directly on that by issuing another Alert depending on how our call goes with Senator Durbin's office.
For now, please keep calling and continue to apply the pressure.
Kelli Ann Davis
DC Political Liaison for Generation Rescue
Posted by: Kelli Ann Davis -- UPDATE | February 28, 2009 at 05:42 PM
done...did not speak with any reps - white house / off of Public Liaison ph system jammed, no luck w/ sen reid - spoke to steve krupan (not helpful) he played ignorance to whole thing and tried to pass me on to someone else - ended up back in ph answering sys, no one available at sen durbin's off - all in meetings but was directed to Ms Myra Alverez / Legislative Assistant Health Care Matters (also not available) or something like that...her # 202-224-2152. so i try again and in the meantime emails
Posted by: bill knapp | February 27, 2009 at 10:49 PM
Done. I called all of the numbers and was directed to voice mail for all but one. When I called the White House and asked for the Office of Public Liason... I spoke with a woman who nicely asked me to hold twice while she got some info. She then indicated that I can forward any concerns that I have to Karen Richardson. She provided her email. She said to tell anyone who has concerns that they can email Karen Richardson. Her email given was [email protected] I'm not familiar with her but thought I would post this as this was what was told to me.
Posted by: Karen | February 27, 2009 at 12:20 PM
Done...mostly leaving messages but am keeping up and if I can talk to someone I will...Thanks to all who've put this effort together.
Posted by: Joan Drummond | February 27, 2009 at 10:18 AM
Posted by: Nancy Potts | February 27, 2009 at 09:52 AM
Did it !!
Left message with most and spoke to some. Durbins lines were all busy and I couldn't even leave a message.
Larry Smar's office and Senator Kay Bailey Hutchison I found the least receptive to listening.
Posted by: Jamie Brown | February 26, 2009 at 11:56 PM
I visited Senator Harry Reid's Reno office today to connect with Mary Conelly -- State Director to discuss the bill. She was out but I've got her card and I will try and connect with her tomorrow along with the other "target" individuals on our list.
Kathy, some of the staff will try and tell you this *isn't our issue* or *you're not our constituent* but I remind them all that this bill will impact EVERY CHILD WITH AUTISM IN THIS COUNTRY and therefore, parents of children (regardless of where they live) have every RIGHT to call and have their voices heard. And EVERY target has some sort of "influence" over whether this bill sees the light of day.
Don't you let them tell you anything different.
PS....Again, I've heard *indirectly* that the medical home model language will be "stripped out" but until I personally hear it from Durbin's office and see the bill myself, we're going to continue our calls, etc.
Posted by: Kelli Ann Davis -- UPDATE | February 26, 2009 at 09:53 PM
Kind of Done - didn't get to talk to anyone. Tried to leave messages, but voice mail boxes full. Mostly was auto transferred to one recording after another.
Posted by: Theresa Cedillo | February 26, 2009 at 06:31 PM
Posted by: Keith | February 26, 2009 at 06:12 PM
I personally spoke with every rep (or their assistant) and will be receiving a call from Lynn Jenkins tomorrow or over the weekend.
KS Rescue Angel
Posted by: Mandy Commons | February 26, 2009 at 05:43 PM
I hope the message gets through! Thanks for giving us the strength to use our voice!
Posted by: jane enrietto horn | February 26, 2009 at 04:50 PM
Posted by: Nora | February 26, 2009 at 04:43 PM
Posted by: Charlotte Lee | February 26, 2009 at 04:42 PM
I spoke with all but Dick Durbin's DC office (automated message that call volume is high and to call back later) The ones I reached-I asked for the contact people on the list & was told they are either busy (Dick Durbin's Bill Houlihan)-not involved with this (from Senator Casey's office when I asked for Larry Smar-his name wound up on "some list")-or just tell the main office, so I told whoever they let me tell. Overall, my comments were accepted and they will be passed on.
Posted by: Kathy | February 26, 2009 at 04:39 PM
Posted by: Paula p Proffit Merckelos | February 26, 2009 at 04:13 PM
Posted by: Robin Nemeth | February 26, 2009 at 04:11 PM
Thanks again for all the feedback and especially for pointing out we need to *STRESS* we *OPPOSE* the bill!!!!
OUR ALTERNATE DRAFT (ACTAA) is just that -- alternate language that we personally presented to Durbin's office shortly before Christmas and it is NOT THE BILL POISED to be introduced!!
The acronyms are very similar and it can become confusing but basically WE OPPOSE the bill and WE SUPPORT THE LANGUAGE THAT GR/AAN PRESENTED TO DURBIN'S STAFF BEFORE CHRISTMAS.
Last week, Durbin’s staff indicated they going to introduce THEIR BILL (ATAA) pretty much the way it was originally written and they told us they were not open to a "stand alone insurance bill" when we specifically questioned them about it before we issued our First Action Alert.
Also, the 7 KEY TARGETS were purposely picked so we could get our message to the "communications directors" in the DC offices; they are generally VERY sensitive to "hot” political issues and we want them to get the message that the CURRENT/ORIGINAL BILL (ATAA) does NOT have the support of thousands of parents and Senator Durbin and Casey need to "rethink" their position in regards to introducing it. The biomedical community was never brought to the table to help craft the ORIGINAL bill and we only found out about it when it “accidently” got sent to me by mistake!!!
There was a comment about using the “general numbers” and we did that during the First Action Alert. This time around, we have a slightly different strategy. We also picked the Reno, NV office for Senator Harry Reid (Majority Leader and only person above Durbin in the Senate) because it’s bigger than the Carson City office AND it’s right down the street from ME!! I’m getting ready to go “pop in” in about an hour so they can put my face/name to the calls. I want Senator Reid’s help in making sure a GOOD BILL gets introduced on behalf of our children.
And then of course, we targeted Senator Durbin’s State Director because he is very SENSITIVE to the political climate in Illinois and trust me, in terms of THIS BILL (TAP) and some of the “behind the scenes” stuff going on in regards to that particular organization, the last thing I think Senator Durbin wants is to deal with ANOTHER scandal on his hands.
Bottom Line: EVERYTHING we are doing and EVERYONE we are targeting is for a REASON ;-)
Thanks and KEEP THE CALLS COMING AND MAKING THEM TOMORROW AND NEXT WEEK UNTIL WE INDICATE OTHERWISE.....WE NEED TO BE HEARD LOUD AND CLEAR!!!
Posted by: Kelli Ann Davis -- CLARIFICATION AND STRATEGY EXPLANATIONS | February 26, 2009 at 03:59 PM
Done. I guess you guys all got to them before me everyone is refusing my calls asking me instead if I support it or not. I keep telling them I will keep calling til I can speak with the person I am asking for and I will everyday until ya all say to stop
PA Rescue Angel
Posted by: Holly Faust | February 26, 2009 at 03:09 PM
Hi folks. I spoke to office personnel of all offices of the Senators listed and gave my personal testimony on behalf of my 2 children as we were instructed.
One ?, do we have a contact name for the White House, OFfice of Public Liaison/Intergovernmental Affairs? Because no name was listed, I wasn't sure who to leave the msg. for and therefore that office sent me back out to the switchboard.
I thought I'd check here first before calling back to try and leave a msg.
For Senator Durbin's office, I told the staff member that the language in his bill that grants authority of medical tmts. to private organizations is dangerous to our children. Many of our children have expressive language needs or are non-verbal and can not tell us where they are hurting.
This action should not take place in the U.S. of America.
I shared that since 2001 we've been implementing biomedical/homeopathic treatments which have helped my children gain cognitive ability, speech and language and social abilities and thankfully have decreased the level of G.I. pain they were in.
Posted by: Duane and Linda Amity | February 26, 2009 at 03:03 PM
Done. Got mostly VM with "Experiencing HIGH call volume" messages. Was unable to leave a message at the Office of Public Liasion due to their mail box being full.
Posted by: Amy Stoutjesdyk | February 26, 2009 at 02:58 PM
Posted by: Laureen Forman | February 26, 2009 at 02:30 PM
Check this out. Just had this email pop up:
Dear Mrs. Cantkier,
Thank you for taking the time to contact my office about the Autism Treatment Acceleration Act. Your input is important to me, and I appreciate the time you took to share your thoughts.
Autism is a serious healthcare concern, and through meetings with autism advocates and letters from people like you, I have also come to understand the impact this disorder has on individuals and families. It is clear that autism is becoming more and more prevalent in our country and throughout the world, and I share your desire to discover the causes and best screening and treatment practices for this disorder. I also share your desire for those affected by this disease to have the broadest possible access to the proper physicians and to needed treatments, and I will be working with my Senate colleagues to make this possible. Your suggested improvements to comprehensive autism treatment legislation are helpful and appreciated. Neither the Autism Treatment Acceleration Act nor the alternative Autism Comprehensive Treatment Acceleration Act have been introduced in the Senate, but the insight you have provided here will certainly help my staff and me more effectively look into this issue.
I would also like to share with you that I have consistently supported broad-based medical research. On March 13 of last year, I voted in favor of an amendment to increase NIH funding by $2.1 billion in the 2009 budget. At that time I also signed on to a letter sent to the Chairmen and Ranking Members of the Senate Appropriations Committee and Appropriations Subcommittee on Labor, Health and Human Services, and Education asking that this increased NIH funding not be stripped during the appropriations process. It is my hope that this across-the-board increase in research funding will benefit all disease-specific medical research, including autism, and I will be working for its inclusion in the final budget.
Thank you again. I hope you will continue to share your thoughts with me.
United States Senator
Posted by: Jeanne | February 26, 2009 at 01:40 PM
Nicole, awesome! Thanks for the addy!!!
Posted by: Jeanne | February 26, 2009 at 01:22 PM
Working on it. I've had a few "no answers"-especially the White House. They don't appear to be picking up.
Posted by: Kathy T | February 26, 2009 at 01:15 PM
I had the opportunity to speak to several individuals at the different offices, told them my son's story, advocated for this important piece of legislation and will keep calling and advocating for all of our children until they all can get their medical and educational needs met.
Posted by: Maureen F Pomeroy | February 26, 2009 at 01:05 PM
Done. WE must be flooding their lines as almost everyone I called either asked if it was regarding autism, or had a recorded message that said they were experiencing a high call volume.
Posted by: Deanne Vizurraga | February 26, 2009 at 01:05 PM
DONE all voice mails, for some reason they are experence large volumes of calls.keep it up Dave
Posted by: david troutman | February 26, 2009 at 12:57 PM
Thanks all for the feedback.
Regarding the White House: We have direct numbers to the offices but can't use them publicly so we decided to have callers go to the "Switchboard" and ask for Public Liaison and Governmental Affairs in the hopes that they may let a few folks through. Seems like Nicky gave a good e-mail contact as follow up if anyone wants to write them.
It's interesting because I'm starting to get e-mails again from the first action alert. Seems this "jump started" that process all over again.
Although we asked folks to come to AoA to comment, we still incorporated the alert into CAPWIZ so we can officially track how many calls have gone out. I will update later on that number once Bob is able to send me the information!!
Thanks All!! KEEP THE CALLS COMING....
Posted by: Kelli Ann Davis -- UPDATE | February 26, 2009 at 12:57 PM
All done. Didn't get through to the White House, though.
Posted by: Catherine Schleimer | February 26, 2009 at 12:42 PM
Calls made. When I asked to speak to the Communications Director in Senator Casey's Office I was informed that they were getting quite a few calls about this in their press room; however, a more appropriate number would be to call Sen. Casey's General Office to speak with someone about this legislation there. So I did, and the number provided to me was: 1-202-224-6324.
Could this be made easier for first time callers by providing step by step directions for finding individual state's senator and congressman phone numbers? I found mine by clicking on the "elected officials" link on the Autism Action Network site, but it would've helped to include this info for locating state phone numbers in the directions. Once you locate and have all of the important phone numbers, it is a very easy process for anyone who might be hesitant to do this.
Posted by: It is done | February 26, 2009 at 12:37 PM
Warning: after giving my biomed story, one phone staffer said, "So you support the bill?" I said "Yes...I mean no! I support the alternative stance, etc."
Don't let 'em trick you!
Posted by: fight for our kids | February 26, 2009 at 12:20 PM
Kathrine Branch at the white house had me write an email. She said she would forward it to the appropriate persons. For those who couldn't get through to the white house... [email protected]
Posted by: Nicky Simon | February 26, 2009 at 11:37 AM
Done, Thank you for fighting so hard for our children!!!
Posted by: Kelly | February 26, 2009 at 10:51 AM
White House sent my call to that phone down in the basement that no one ever answers. Spoke with everyone else on the list with the exception of Charlie Lyons. Oh, and I suggested Bill Houlihan contact our DAN! in Springfield so that she could explain that our children are MEDICALLY ILL and require medical treatments.
Thank you GR and AAN!!!
Posted by: Jeanne | February 26, 2009 at 10:36 AM
Done with the exception of the Liaison office which is still not answering their phone.
Had also to leave message with Conelly office as nobody picked up so never spoke with anyone there personally.
Posted by: Maurine Meleck | February 26, 2009 at 10:15 AM
The alternative draft has research initiatives and language that would ensure that current research is utilized and paid for to test these kids for their common multiple medical diagnoses, as well as behavioral and educational treatments, etc. DAN has a better understanding and has been treating our kids but in your message you want to tell them it's important for you to have choices in Doctor's that best fit the needs of your child. AAP has no training in autism nor do they recognize the many common multiple diagnoses, so if they have the only say in treatment the children will go untreated for their medical problems or treated only with bandaides that have recently been shown to NOT be effective in autism.
Posted by: Allison | February 26, 2009 at 10:07 AM
Posted by: Lin | February 26, 2009 at 10:04 AM
Done, but had to leave a comment on Whitehouse comment line. The public liason office never answered.
Posted by: Allison | February 26, 2009 at 09:56 AM
Posted by: Kent Heckenlively | February 26, 2009 at 09:28 AM
Posted by: cblakey | February 26, 2009 at 09:26 AM
Posted by: Jane Milota | February 26, 2009 at 09:00 AM
I try everything and it takes DAN Plus to recover kids! But should we be saying DAN protocol in our conversations so they hear at least that consistent message?
Posted by: Holly M. | February 26, 2009 at 08:37 AM