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Shelley Reynolds, "" TITLE: Power of 1.5 Political Autism Conference (PAC) - UPGRADE YOUR POWER!
Monday, December 8th
at 9 p.m. (Eastern), Note portions of the text have been edited for
spelling and grammatical errors, while other text with errors was left
in tact in the context of the chat.
Rebecca {public msg} Hello and Welcome to our talkAutism Specialty Chat. If you have a question for our Host Speaker, Just type a “?” in the room. The names will be taken in order received. Hold your questions until you are cued by the Moderator. Also, Please keep chit chat down to a minimal, unless ok'd by the Host. Thank You and enjoy your stay! Shelley {public msg} Thank you all for coming. I appreciate it.
Rebecca {public msg} Whenever your ready Shelley, you could begin with a brief bio or intro.
Shelley {public msg} My name is Shelley Reynolds
Shelley {public msg} I live in Baton Rouge, LA and have two awesome little kids...Liam who is 7
Shelley {public msg} and Mairin, my daughter, who is 5.
Rebecca {public msg} We are patient, no need to stress over speed ;)
Shelley {public msg} Liam has autism and was diagnosed at 27 months
Shelley {public msg} and we went pretty crazy at first trying to find information.
Shelley {public msg} and ... actually, the first time I ever signed onto the internet I met Tumbalaika here.
Shelley {public msg} About 9 mos after Liam was diagnosed, I joined forces with Tum and
Shelley {public msg} Nancy Cale and Jeana Smith and we formed Unlocking Autism
Shelley {public msg} We wanted to work to grow a grass roots organization that could affect political change
Shelley {public msg} Help parents with their newly diagnosed kids and try and bring the issues of autism
Shelley {public msg} to the national forefront.
Shelley {public msg} We have worked really hard and have grown pretty quickly.
Ron {public msg} you've all done a great job!
Shelley {public msg} The purpose of the conference that we are hosting in DC in April, 2004 is to teach
Rebecca {public msg} There seems to be a very big need for this information. ;)
Shelley {public msg} parents and grandparents and people with autism and siblings and all
Shelley {public msg} how exactly to harness our power as a community and work towards change.
Shelley {public msg} Because, in our travels and across the internet, we found that parents really wanted to do
Shelley {public msg} something but weren't sure what to do...or how to do it.
Shelley {public msg} Unlocking Autism doesn't generally take a particular stand on any particular issue
Shelley {public msg} We try and educate the community on a variety of different issues and part of our philosophy is
Shelley {public msg} that we expect the community to learn about the issues and then take the time to express their opinions
Shelley {public msg} to their political officials.
Shelley {public msg} We have worked to try and design what we think will be an interesting concept for the conference this year.
Shelley {public msg} we will split it into two days primarily focusing on education the first day and on increased funding
Shelley {public msg} for research the second day.
Shelley {public msg} all lectures will take place in a general session for the first part of the day and then
Shelley {public msg} for the second part of the day, we will spend it up on Capital Hill meeting with Congressmen's offices
Shelley {public msg} from your state.
Ron {public msg} ?
Shelley {public msg} shoot
Shelley {public msg} are you asking a question Ron?
Ron {public msg} sounds cool. what kind of speakers will you have?
Moderator {public msg} Shelley keep going I am taking the names
Ron {public msg} sorry. slow typist
Shelley {public msg} We start out with an awesome motivational speaker.
Shelley {public msg} Then we have Lisa Graham Keegan who is the President of the Education Leaders Council.
Shelley {public msg} She is one of the primary forces behind President Bush's "Leave No Child Behind"
Ron {public msg} oic .. interesting
Shelley {public msg} In a dialogue with her earlier this year I explained to her that a lot of people in our community
Shelley {public msg} feel like their kids have been more than left behind.
Shelley {public msg} we have been talking a lot and she wants to address that and get our concerns as well
Ron {public msg} makes sense
Shelley {public msg} We will have Beth Clay, who used to work for Dan Burton, address everyone on the ins and outs she learned on Capital
Hill
Mommyo {public msg} ?
Shelley {public msg} That we can use to help us as we work up on Capital Hill..kind of a dos and don'ts session
Ron {public msg} i know her, she is good
Shelley {public msg} Mommyo?
Mommyo {public msg} Do the parents have to contact their congressmen ahead of time before the conference
Shelley {public msg} There is going to be some homework prior to the conference.
Shelley {public msg} We will send you that in a packet prior to the conference.
Mommyo {public msg} And will you go with all of us to our meetings
Shelley {public msg} you don't have to do it obviously to attend...but it will help you make the most of your time there.
Mommyo {public msg} How can we register?
Shelley {public msg} I won't be able to go with you to all of the meetings,
obviously, if we have a lot of people there...but
Shelley {public msg} what we are going to do is allow 10 people per state.
Shelley {public msg} 10 people at one round table from each state.
Andrew {public msg} ?
Shelley {public msg} that is it...for right now.
Shelley {public msg} after February 1st it will be opened for general admission but for right now we are preserving
Shelley {public msg} those spots because we want to try and get all 50 states to participate fairly equally.
Shelley {public msg} Yes Andrew?
Andrew {public msg} I was just wondering what it costs to attend
Shelley {public msg} Mommy...sorry..didn't answer your question.
Shelley {public msg} You will be able to register a little later this week.
Chet {enters}
Shelley {public msg} If you are not on our mailing list you can email Nancale@aol.com and she will put you on there.
Mommyo {public msg} Thanks, I am looking forward to attend
Shelley {public msg} So that you can receive the notice when it goes out.
Shelley {public msg} the cost of the conference is $275 and that includes
Mommyo {public msg} I have Nancy email I will talk to her
Tabv {enters}
Shelley {public msg} a Congressional reception on Wednesday night, breakfast and lunch on both Thursday and Friday,
Shelley {public msg} a conference t-shirt, all conference materials and an evening event on Friday night.
Shelley {public msg} We tried to incorporate meals because we know it is expensive to come into DC
Shelley {public msg} The room rate is pretty good for DC and especially at that time of the year at $99 per room.
Shelley {public msg} it is only a couple of blocks from the Metro so transportation should be pretty easy and about 5 minutes from Reagan National airport
Andrew {public msg} that sounds great, thank you.
Ron {public msg} ?
Mommyo {public msg} Where is the conference being held?
Shelley {public msg} So...yes, we would love to have you contact your Congressional offices before you go and will send you information on how to do that.
Shelley {public msg} The conference will actually be held at the Doubletree in Arlington, VA
Shelley {public msg} You can see Capital Hill from the upstairs restaurant. really cool up there too.
Shelley {public msg} especially at night!
Mommyo {public msg} Can we get the exact address from your website?
Shelley {public msg} SO...we are also going to send you contact information for the other people from your state so that you can network with them
Shelley {public msg} before you get to DC.
Shelley {public msg} That way, you all can decide as a group how you will visit the Congressmen from your state and get everyone covered.
Mommyo {public msg} Sounds Great!
Shelley {public msg} OR...covered more efficiently. Some states have way more than others.
Shelley {public msg} Stephen is going to talk to us about how you can shape your child's education
Shelley {public msg} for transition to adulthood...what you can be doing now to make sure that they
Shelley {public msg} can be all they can be in the future and what you might need to think about with regard to your own state laws to
achieve those goals.
Moderator {public msg} Ron do you have another question?
Ron {public msg} When we're set loose to congress, do we carry own issues to our congress people, or will there be one national agenda to cover?
Shelley {public msg} Because if you start working on things now, they may take a
while but it will be worth it.
Shelley {public msg} Well. You definitely will be encouraged to explain to your Congressmen what issues affect your own family...that is important.
Shelley {public msg} They need to learn and the more we tell them..the more they do learn.
Shelley {public msg} The autism community is very fragmented and trying to get one national agenda is very difficult.
Shelley {public msg} All the groups want to work on different things so we picked two topics that we thought everyone could best agree on.
Shelley {public msg} Education and Increased Research for funding.
Shelley {public msg} beyond that I know everyone has their own opinions. :)
Shelley {public msg} BUT...the Thursday issue of education will focus on Chris Smith's TEACH act.
Shelley {public msg} to try and work to be able to strengthen our educational system simply by providing incentives to get good teachers in there.
Shelley {public msg} and that is the basic premise of his bill.
Shelley {public msg} The 2nd day we will talk about the reauthorization of the Children's Health Act which was passed in 2000.
Shelley {public msg} That bill set aside funding for NIH and for the 5 autism research centers to be established around the country.
Shelley {public msg} Additionally, on Friday, we will have Stuart Spielman, who is the father of a son with autism who works for the IRS
Shelley {public msg} that has been working with Arlen Spector and will introduce a bill next year that will allow parents
Shelley {public msg} to set aside money for their child with a disability the same way they can for their kids for college with tax breaks.
Shelley {public msg} That money can be used later to transition them into adulthood and cover the gaps in services.
Shelley {public msg} and give much needed tax breaks when they are younger.
Moderator {public msg} Now that is exciting
Melashu {enters}
Shelley {public msg} We are working and have no gotten total confirmation yet but are WORKING to get members of the Republican National Committee
Shelley {public msg} and the Democratic National Committee to participate in a debate in f Ront of us.
Shelley {public msg} That is why we want to work to get a good sampling from across the country.
Shelley {public msg} We want them to come and listen to us and our issues as a community and then explain to us
Shelley {public msg} how they can work that into their platforms.
Shelley {public msg} I told them today that our community, if you do simple math, has about 10 million registered voters
Shelley {public msg} That is a WHOLE LOT OF POWER.
Shelley {public msg} Do you realize that?
Shelley {public msg} That can sway an entire election.
Ron {public msg} sure do.. thanks
Moderator {public msg} I hope it all works out
Rebecca {action} agrees whole-heartedly.
Shelley {public msg} And if we have a candidate that is really listening to us we could definitely see some tides change in the next four years.
Ron {public msg} we do got a great and motivated advocacy group... just need to be steered at times
Shelley {public msg} Yep
Shelley {public msg} agreed.
Ron {public msg} are other organizations involved yet?
Shelley {public msg} But if there are 1.5 million people out there with autism....
Shelley {public msg} There are 3 million parents and 6 million grandparents and siblings, cousins, aunts, uncles.
Shelley {public msg} People generally vote the way other people influence them to vote.
Shelley {public msg} This is something we can do from our own homes...with the people that we know!
Shelley {public msg} There are other organizations that are involved.
Ron {public msg} and 6 million spec. ed professionals needing to get up to speed on autism too!
Shelley {public msg} Exactly!
Ron {public msg} thanks Shelley
Shelley {public msg} See...the numbers just grow and grow and people that are concerned about it will pay attention.
Ron {public msg} what about pet issues i may have...
Ron {public msg} like wanting more technology grants to provide more services to families
Shelley {public msg} We figure if we can "train" 500 participants at this conference, they can go back to their states and spread both the enthusiasm and the knowledge they have gained.
Shelley {public msg} Sure...well..you are there...definitely talk to them about that.
Ron {public msg} ok
Shelley {public msg} I have pet issues to.....and those will definitely be discussed.
Shelley {public msg} We are simply providing education and access.
Shelley {public msg} That is all.
Shelley {public msg} It is up to everyone that attends to make things happen.
Shelley {public msg} and you have to talk about what you are most comfortable with too.
Shelley {public msg} Something you believe in. You can only talk passionately about those things.
Shelley {public msg} I don't really know doodly squat about what is going on in the NIH
Shelley {public msg} and personally have my own little opinions...since they told me in 2000 that they would have some good answers for us in 20-25 years.
Shelley {public msg} But that is another thing altogether...:)
Ron {public msg} will this help us do things within our state legislatures?
Shelley {public msg} So...groups that are involved include Unlocking Autism, CAN, Doug Flutie Foundation
Shelley {public msg} Dan Marino Foundation, GRACE of New York and of course...ta da...Talk Autism.
Ron {public msg} yeah!
Shelley {public msg} So far. We have some other groups that are considering it but haven't gotten back to us yet.
Ron {public msg} good core group!
Shelley {public msg} What happened in 2001, Ron, is that people learned how the basics of the system worked up in DC
Shelley {public msg} Then they went home and worked on laws in their own states.
Shelley {public msg} There were insurance laws that changed in Michigan as a result...or now we have a special autism license plate in Louisiana.
Shelley {public msg} Some changes were big...some were little...but people definitely took what they learned back to their states.
Ron {public msg} I've heard about that ... great
Shelley {public msg} And we decided a long time ago, if you can get past the intimidation of walking around on Capital Hill.
Shelley {public msg} going up to your state legislators office is a piece of cake.
Shelley {public msg} because it generally is in a strip mall. :)
Shelley {public msg} So...that is the basics of the conference.
Shelley {public msg} What I can tell you is that it will be a lot of fun.
Shelley {public msg} We don't do anything that isn't fun..or at least we try to make the events we have fun.
Ron {public msg} sounds good... UA always does a great job with any events it is part of
Shelley {public msg} There will be a lot of work at the same time.
Shelley {public msg} But we want people to enjoy themselves too.
Ron {public msg} I can attest that going around congress offices is actually cool, when you have some guidance
Shelley {public msg} So, you can expect some energetic music all kinds of things to get your blood pumping.
Mommyo {public msg} What if you can only attend one of the days
Mommyo {public msg} Is it worth coming
Shelley {public msg} I would definitely think it would be worth coming.
Shelley {public msg} It would be worth it just to network with the other people from your state that share a common goal.
Shelley {public msg} Much less go up on Capital Hill.
Shelley {public msg} It is a very empowering thing.
Shelley {public msg} I think that people forget a lot of times that THEY work for US.
Shelley {public msg} I think they forget that too.
Mommyo {public msg} Should we dress business attire
Shelley {public msg} And they don't really have job security..unless we give that to them.
Ron {public msg} we'd (talkautism) would love to capture what's learned here on distance learning video ... to broadcast to those who can't make it!
Shelley {public msg} You can wear whatever makes you the most comfortable.
Ron {public msg} you're right about that!
Shelley {public msg} I have gone in jeans and a t-shirt and also in business suits.
Shelley {public msg} We will have a conference t-shirt.
Shelley {public msg} When we did it in 2001 most people wore that
Shelley {public msg} So what do you all think about that?
Ron {public msg} i met senator Gramm (Texas) in the subway , he saw the pix of my son on my jacket, asked me, and I found out he had a Autistic grandson
Shelley {public msg} Really?
Shelley {public msg} wow...I didn't know that.
Ron {public msg} I told can right away
Ron {public msg} he supposedly was in charge of the research committee at the time
Shelley {public msg} I find that very interesting.
Shelley {public msg} We will have a "kick-off" reception on Wednesday night up on Capital Hill.
Ron {public msg} it sounds great Shelley. I heard many talk about how great the 2001 conference was,,, and how it
influenced them dramatically
Mommyo {public msg} how many people have already committed to attending?
Shelley {public msg} We are inviting all the members of the Congressional Autism Caucus
Ron {public msg} do you think these advocates can get grants to attend?
Shelley {public msg} We haven't opened the registration to the public but we did open it up to our reps and sponsors.
Ron {public msg} is that the Doyle and Chris Smith committee?
Shelley {public msg} At this time we have about 75 people pre-registered already...so some state tables are already tight.
Shelley {public msg} Yes...Doyle and Smith.
Ron {public msg} great
Mommyo {public msg} Do you know how many are coming from NJ
Shelley {public msg} We just thought 2004 is too important of a year politically for us to allow it to pass us by as a community.
Mommyo {public msg} Is there still room
Shelley {public msg} Hold on just a second and I will see.
Mommyo {public msg} Thank you
Shelley {public msg} There are 7 seats still left at the NJ table.
Mommyo {public msg} Great!!
Shelley {public msg} What will happen if a table fills up is that we will take pre-registrations on a first come first serve basis.
Ron {public msg} who from NJ is coming , or can you say?
Mommyo {public msg} I will contact Nancy to fill me in on who is coming
Mommyo {public msg} thanks
Shelley {public msg} So, if the NJ table is full when you register, you can still sign up on the waiting list.
Ron {public msg} I am sure Louisiana will be well represented!
Shelley {public msg} Then after February 1st...whatever seats are available will be filled up in order that people sign up.
Shelley {public msg} So, you might wind up at the New Mexico table...but you will still be there!
Shelley {public msg} Does that make sense?
Ron {public msg} they're a party state, sounds good
Mommyo {public msg} Is ASA supporting you on this conference?
Shelley {public msg} We have found in contacting the White House and the RNC and DNC that they are very intrigued by being able
Shelley {public msg} to reach a group of people with common concerns from all across the United States that they know
Shelley {public msg} will go back to their states and spread information.
Shelley {action} )
Ron {public msg} I would imagine
Shelley {public msg} ASA has not gotten back with us yet on whether or not they are in support
Mommyo {public msg} Very disappointing
Shelley {public msg} I have talked to Jeff Sell and he is very supportive but we haven't heard back from them necessarily as
Shelley {public msg} an organization....and how they would support it.
Shelley {public msg} So...we are just forging ahead.
Shelley {public msg} We think it is a good idea
Shelley {public msg} We believe in what it will do
Shelley {public msg} We know it will be a good thing and so we are marching on. :)
Mommyo {public msg} To help spread the word for the states that have a low attendance
Ron {public msg} at the autism summit, we had 3 NJ congress people join us gathering from NJ, so I'd imagine if congress people see a crowd with energy, they'd welcome us
Shelley {public msg} Well....we have a rep network that we are going to keep updated regularly as well so that they can recruit people.
Shelley {public msg} and we will be sending out posts on the internet as well to keep people updated.
Ron {public msg} let us know how we can help you get the word out
Shelley {public msg} Like PEOPLE FROM NEW JERSEY only have 7 seats left...
Ron {public msg} I hear you
Shelley {public msg} Or as we get closer to Feb. 1st, we will send out notices to people in New Mexico and say if you all don't want your seats...don't sign up...people from New Jersey are going to take them if you don't!
Ron {public msg} yes!
Shelley {public msg} Surely there are 10 people in each state that care enough about autism issues that we could reach that goal.
Ron {public msg} I hope
Shelley {public msg} But, the way we feel is that if we educate 250 people, it's a good start.
Ron {public msg} how much will the UA reps be asked to be at this conference?
Shelley {public msg} what?
Shelley {public msg} I don't understand?
Shelley {public msg} you mean are they coming?
Ron {public msg} yes, and are you saying they should come?
Shelley {public msg} a good number of the people already pre-registered are reps.
Shelley {public msg} of course.
Shelley {public msg} everyone is welcome.
Ron {public msg} that says a lot about these reps
Shelley {public msg} we gave them the opportunity to sign up first because they are going to help us with some work as we get toward the conference.
Mommyo {public msg} You guys (UA) are amazing
Shelley {public msg} Our registration for the general public should open sometime this week.
Shelley {public msg} We are just waiting for some final confirmations on things so we can announces it all at once.
Shelley {public msg} And then people can register!
Ron {public msg} Well, Shelley... it sounds great. We're all behind this. Keep us posted on your progress, and if we can disseminate word out early in 2004, let us know
Shelley {public msg} Thank you so much Mommyo
Shelley {public msg} I hope you all can come.
Ron {public msg} plan to... if I'm walking by then :)
Shelley {public msg} I know it is expensive to travel but a lot of times, your state can help subsidize the cost of conferences and even travel.
Shelley {public msg} Ron...you better be well by then...we will have to make you get up and dance!
Rebecca {public msg} For Bio on Shelly Click here ;) Moderator {public msg} Shelley it was all very interesting, and I do hope that you have some success out of it
Ron {public msg} that's great point. How can we get states to subsidize travel?
Rebecca {action} applauds fervently.
Shelley {public msg} well...it is different in every state.
Shelley {public msg} Here in Louisiana for example, Liam is signed up for a program called
Children's Choice that allots a certain amount every year for parents to use.
Rebecca {public msg} Shelley Let Ron know if you'd like to return, wed love to hear about the
follow-up afterwards. ;)
Shelley {public msg} on respite or environmental modifications or conferences.
Shelley {public msg} they pay for registration, airfare and hotel accommodations.
Shelley {public msg} so you can just check with your state to find out how to do that...I don't know who to send you to for NJ though.
Ron {public msg} we have that thru DDD here in NJ
Ron {public msg} sounds good
Shelley {public msg} thank you guys so much for letting me come fill you in on what we are working on.
Shelley {public msg} I hope you will help me get a buzz going on the internet about it!
Shelley {public msg} I know we can do this and I think it would be a good thing for our community.
Shelley {public msg} It is good for us to realize the power that lies within each one of us.
Ron {public msg} sounds good. let's talk over the next few weeks about it
Shelley {public msg} When we often feel so helpless in our own homes.
Ron {public msg} it is so true
Shelley {public msg} No one should feel that way...it only takes one person to make a difference.
Ron {public msg} we need to allow those who can't come some way to buzz in ... as well
Shelley {public msg} and if you multiply that by 500 or 1000 or 10,000 imagine that!
Ron {public msg} we'll work on soemthing, if you'd like
Shelley {public msg} Well....if this goes well we might be able to take some of it on the road during the year in regional conferences too.
Shelley {public msg} or broadcast it somehow.
Shelley {public msg} one step at a time.
Moderator {action} . o O ( where there is a will thereis a way )
Shelley {action} ;)
Mommyo {public msg} Thanks for sharing with us Shelly!
Shelley {public msg} Do you all have any more questions? Does it make sense?
Ron {public msg} Great shelley. Thanks for presenting an energetic and positive view of the important PAC conference. We will talk it up!
Shelley {public msg} Thank you so much!
Shelley {public msg} I really appreciate it!
Ron {public msg} it makes great sense! and sounds like a great vehicle for change!
Rebecca {public msg} Thanks allot Shelley
Ron {public msg} Thansk for all your heard work shelley, and for what UA is doing
Shelley {public msg} you are so welcome. it is something I am very passionate about!
Ron {public msg} Thank you Ms. Moderator and Rebecca and others. Have a great holiday. w
Rebecca {action} can tell!
Rebecca {action} smiles.
Moderator {public msg} Same to you Ron, and my pleasure
Rebecca {public msg} Happy Holidays everyone!
Shelley {public msg} bye bye guys!
