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March 24-25, 2004
By
Kevin Greenstein (age 11) We went out of the house with our stuff. We got in the car and went to the airport. We missed Amtrak so we took a plane instead. Instead of the LIRR we drove to the airport.
We went through security and then we had our baggage x-rayed. You
can't bring any metal on the flight. We went through the gate and onto our
flight. Daddy read a magazine and I played Game-Boy. It is a short amount
of time to get to Washington, actually Virginia.
We took a taxi, because we missed the airport shuttle. Then we got
to the Sheraton National Hotel. We went through the revolving door and
checked in. We went to our room and unpacked. I played Nintendo before
dinner.
We went to the East Building and met some of Daddy's friends. There
were two training sessions so that we knew how to talk to the Senate about
IDEA and Senate Bill 1248. I did not go to the first training session
because we hadn't gotten there yet.
We ate dinner and had a meeting about the "nuts and
bolts" of our Washington meeting. We
talked about the Individuals with Disabilities Education Act (IDEA).
We learned about Senate Bill 1248. We wanted people to vote
"No". It is a bad bill for people with disabilities.
The next morning I put on a jacket and tie because I had an
important meeting in Hillary Clinton's office in the Senate Russell Office
Building. I wore Hawaiian leis because some of the people who were with me
were Hawaiian and they gave them to me.
When we got to Hillary Clinton's office I met Susie, Senator
Clinton's assistant. We had a meeting with Susie about IDEA and Senate
Bill 1248.
After the meeting we went and got a snack in the Dirksen Building.
After the snack we explored the 7th floor of the Hart Building because I
wanted to. We went to John Kerry's office and had another meeting.
After lunch we went to see Senator Schumer and had a meeting with
Missy Rohrbach.
We took the subway to the Capitol and went into the Senate Gallery.
We saw the Senators and voters from the gallery. I saw a boring show about
Senators.
We had a wrap up meeting to get all of the Senators (staffers)
together to end the day. Then everybody left. We took the train back to
Penn Station. The thing I liked best was seeing the Capitol. The Capitol is where all of Congress meets. Congress is the most important part of the Legislative Branch. The Capitol has two galleries. One gallery is for the Senate and the other is for the House of Representatives. First, JJ was
fantastic. He shook
everyone's hands and introduced himself.
If asked questions, he answered.
I'm so extremely proud of him! In fact, all the children were wonderful and really
made an impact! It was a great pleasure to meet parents and their
children face to face. It's
great to be able to put names with faces.
Washington DC is a beautiful and clean city.
The police and the people were very friendly and helpful, I can't
wait to visit there once again. Another Ohio parent, JJ and I visited 12 senators
offices. We met with aids for
Senator DeWine, Senator Voinovich and Senator Sununu.
The aids met us with welcome arms, listened and seemed to be very
interested in what we had to say. They
want to hear our experiences, both positive and negative. They want to hear our suggestions for improvements. Although I did not agree with them, it was a great
pleasure to meet 2 representatives from the US Department of Education
Office of Special Education Planning (OSEP) and hear what they had to say
about No Child Left Behind and IDEA. In addition, HELP committee members, Senator Kennedy
and Senator Gregg's aids, also took time to meet with us as a group.
They were very interested in what we had to say.
Senator Kennedy's aid did express concern about the lack of input
from parents regarding what happens after school age.
She would like to hear more from parents about their concerns,
ideas and suggestions for transition, needs for independent living, higher
education, vocational training assistance and services.
If anyone has any thoughts, experiences, or suggestions on this
issue please share them with your legislators and send a copy to Senator
Kennedy and Senator Gregg. Parents are making progress and it is imperative to
keep the lines of communication open with our legislators. Please continue to write them and remember to include all
your state and federal legislators in correspondence. You can locate all your legislators and their contact
information @ http://www.firstgov.com/ As an exciting side note, while walking down the
street from the Smithsonian Museum of American History, JJ, Adam and I
passed Senator DeWine. I
called to him and stopped and spoke with us briefly.
He was very kind and friendly.
I only made one comment, that I saw his aid this week, but I had my
Vote NO S. 1248 T-Shirt on, after all it was his day off and his
grandchildren were waiting in the Smithsonian for him. Somewhere in our
short discussion, I
introduced JJ, Adam and myself. Both
boys shook the Senator's hand and once again JJ introduced himself (Adam
is a bit more shy). We were
thrilled that the Senator stopped and spoke with us. Moreover, thanks to all of you who wrote letters,
signed the petition (which if haven't done, you can still do @ http://www.petitiononline.com/nos1248/petition.html.
And please continue to circulate it), and for calling in last
Wednesday during the National Call In Day.
All of you really made a difference!
Unfortunately, although I feel we're making progress, one can never
really know what will happen in the political arena so don't back off,
stay in touch with your legislators. I also want to thank Jamie, Daniel, Susan, and
Candance for all their hard work and helpful training and information.
Thanks to Larry for all his hard work and to Kevin for his
beautiful report. Thanks to
Susan Ross for all her hard work and to Matt for sharing another wonderful
essay with us about his experiences in DC.
Thanks to David for the most organized petition I've ever seen, you
had to really have put in a lot of time with it.
Thanks to Naomi for all of her work and the wonderful gifts of
flowers and leis for the senators. Thanks
to Naomi's son for speaking out and to all those who came with Naomi all
the way from Hawaii. Thanks
also goes to OCLB, Shari, Sandy, Debi and Trisha, for their continued
dedication and informative articles and information.
Thanks to Candy for allowing JJ and I to tag along with her
appointments for Senators DeWine and Voinovich and for hanging out with us
while we visited 10 more offices (we really had a lot of fun).
Thanks to Jennifer and her daughter for showing us around the
Russell Building and to all those associated with Jennifer who made the
ingenious tool boxes for the senators!
Thanks to the members of OSEP, Annie (Senator Gregg's aid) and
Connie (Senator Kennedy's Aid) for taking time to meet with us for the
wrap up. Thanks also goes to
Eliza Savory for visiting Senators and sharing her thoughts.
Thanks to Ben Savory for sharing his inspired poem, My Chance.
And lastly, thanks to Mike Savoy who came all the way out to New
Carrollton Metro to meet JJ and me and show us how to use the subway.
Mike your hard work, dedication and all the support you brought to
the table was moving. Overall the visit was very positive, however, it was also an eye opening experience and it is even more evident to me that a Disability Rights Amendment is needed NOW! Four days after my husband returned from his 4 month
deployment to the Middle East, I drove to Washington DC to exercise my
(and my son's) rights as an American citizen to express my concerns to
legislators. I was able to stay with an Army family in the DC area
who shared my concerns over S. 1248.
We were both particularly concerned about how more flexible federal
laws would affect disabled military children in particular. I have heard horror stories from military member after
military member struggling to stay on task in defending our country while
their spouse is fighting another battle at home with the school. Among other challenges to military children, as soon as
issues get resolved with one school the military family moves and has to
start all over debating: eligibility, services, etc.
This happens over and over as military families move every few
years. (Our family has lived
in 4 states during an 8-year period.) There are a slew of other lifestyle
traits that put disabled military kids at high-risk to fall through the
cracks. But that is a whole other email! My first day in DC was spent learning about the facts
and research to support my position. It was an emotional day for me to
hear about all this convicting information that wasn't being used by
legislators in making life-changing decisions about disabled children's
futures. My emotions were
further heightened when I met the children who traveled to DC.
I looked at these kids and thought, "who in their right mind
could take away these children's civil right to a Free and Appropriate
Education?" The second day I met with aides from various
Senators' offices. First I met with the education aide from Senator
Hutchison's office (TX). She seemed receptive and took notes. She listened intently and expressed no resistance.
She also informed us that Hutchison's office was inundated with
calls of those opposing S.1248. This meeting was a great foray into politics for me.
It energized me for the rest of my day! I then met with an aide from Sen. Warner's office (VA
- Armed Services Committee member) .
There were several parents at this meeting and I spoke mainly about
the SPeNSE report (showing that Special Ed teachers felt that STO's were
one of the most useful tools in the IEP process, etc) and other studies
that contradicted what those in favor of S. 1248 were claiming.
The aide asked me to follow up with the exact study and
information. Warner's aide
was VERY responsive. This
fueled me even more! I moved on to Sen. Kerry's (MA) office with many
other parents. I was again
encouraged by the reception (note taking, an apparent genuine interest)
during our meeting. I did not talk much at this meeting as there were
parents there that were much more informed than I. The main point I made
was that many of these children have average and above average IQ's.
They can learn and be a productive, tax-paying member of society.
After our official meeting, I was also impressed by the way this
aide interacted with some of the children that were at the meeting with
us. I then met with Sen. Edwards (NC) aide.
Again there were many other parents who came to this meeting.
I think the aide was overwhelmed by how many parents came to talk
to her. She shared a personal experience with us that led us to
believe that she understood much of what we were fighting for. This aide,
again, seemed very receptive. I
kept thanking God after each meeting for the great reception! I then met with Sen. Dole's (NC) aide.
He listened, did not say much and did not take notes but I still
feel like my voice (and my son's) was heard. My last meeting was with Sen. Nelson (FL - Armed
Services Committee member). His aide again seemed a little overwhelmed by
the number of parents and the amount of info our group had.
She took notes and seemed to genuinely care about this issue. One thing that struck me about all my meetings is
that there was more of a focus on how this would affect the military
children/families than I expected. Many
aides admitted that they hadn't considered how this would impact children
who constantly move around and the kids in the DoDEA schools that are only
bound by the federal laws and flimsy "directives" that the DoD
puts out. I see this school
issue as a military readiness issue.
If soldiers are getting emails from home about their children being
mistreated and deprived of FAPE, how can they effectively focus and
perform in life or death situations? I
was struck by the large number of military families who came for this
rally. I hope the Senators
also realized that military members feel they will be worst hit by if this
legislation becomes law. I then arrived late to the large group de-brief. I
heard Annie (from Sen. Gregg's office) and Connie (from Sen. Kennedy's
office) speak. I would be
lying if I said that I found their input uplifting.
I felt like the rally parents were on a totally different page from
Connie and Annie. There was
not a lot of opportunity for the parents to give the aides feedback as
they both had other engagements after meeting with our group. I was glad
however that Connie and Annie made time to meet with our group and seemed
to at least listen to a few of us who asked a few questions before the two
aides had to leave. Part of
me felt that if we had a longer time to give them input, they would have
understood our point of view. Maybe the aides felt the same way. Not knowing if our effort would swing the consensus
among Senators, I still drove home feeling good about my efforts.
I have to be able to look my son in the face a few years from now
and tell him that I tried to fight for his civil rights and those of 6.5
million other disabled children. Upon arriving home, I emailed follow-up to the
Senators' aides with the links to the studies that were mentioned at our
meetings. I also spoke to
some special needs families in the area about the legislation and
encourage them to talk to legislators (email, petition, etc) about their
opinions. Some special needs parents did not feel that legislators would
read the email anyway. Other parents said they would try to express their
concerns but were very busy dealing with present school issues.
For some reason parents feel paralyzed in voicing their concerns
and trying to make changes at the root of their problems.
Other parents felt like it might come back to haunt them (the
school might come after them) if they openly opposed this.
Others felt like they can't make a difference anyway and are just
too tired to try to fight. I just found out my husband is scheduled for yet another deployment this summer (for 90 days). I feel like the least the US government can do is provide my son with some basic civil rights like due process (with out unreasonable limitations) and a Free and Appropriate education while his father flies in and out of hostile territory, his plane getting shot at by terrorists as he flies in US soldiers and supplies.
Matt Ross I got up at 4 in the morning to get to Tampa Airport and on our plane by 6:45am. We ate breakfast at Burger King at the airport. I had to take off my shoes,jacket, and sweater when I went through security. We found our seats on AirTran and soon we were in the air. This was my first flight. We had to land at Atlanta to change planes and we were off again. We flew by the Washington Monument and the Potomac River coming into Reagan Airport in Washington DC. The shuttle forgot us and we took a cab to the Sheraton Suites in Old Town Alexandria where we went to our suite. We were late so the hotel gave us their limo to the Sheraton National for the second session. We met Shari as soon as we got there. We left the meeting and took the Metro to downtown to make copies of my book at Kinkos. The Metro was cool and I finally learned to ride on escalators. I have been scared of them. We got back to the Sheraton National late and I got to meet Kevin and some of the other neat kids who came with their parents. It was fun. Mom and me got back to the hotel around 11pm and went to bed. Mom got me up at 7am for breakfast. We ate at the buffet in the hotel dining room. It was ok. Then we went back upstairs and I had to change into my FFA (Future Farmers of America) outfit with a tie as I had to look nice to meet the senators. We took the Metro again to Union Station and went over to Gov Jeb's office to meet everyone there. I had my picture taken with all the ladies and we were off to the Russell Bldg to see Sen Lott. He had gotten called out to a special meeting so we saw his aide for a few minutes. Then it was off to Sen Hatch's office. His legislative aide was really cool. After an hour, she took me to the gift shop. I got a cool puzzle of the Presidents. Sen Hatch just had his back operated on and did not come in as scheduled. He was in pain. Then we went to a few more offices and spoke to some more aides who wanted to ask me questions about my experiences with self contained classes and mainstream classes. I answered all their questions. Then we met Miss Shari and Mr. Dave for lunch down in the Senate cafeteria where we ate buffet again. We were supposed to meet Sen Nelson at 4:30 but I got so pooped out and we rescheduled for 2:30. Sen Nelson asked me to see a senate hearing but it was so crowded with lots of people. He told Mom he is on our side and the problem is with Sen Frist. They were trying but he was making it difficult. I had my picture taken with him too. We went back over to Gov Jeb's office to thank them for letting us drop off our tool boxes there. Then we left for the hotel. I slept the rest of the day and Friday until we had to check out of the hotel. We went to the airport and boarded the plane for home. I had a great trip and enjoyed meeting everyone and seeing Washington dc. It is a cool place. I enjoyed being treated like a smart person and not a disabled dumb dumb. They all listened to me. It was great!! Friends, Family, Parents/Advocates, Supporters & CHILDREN FIRST, As a Member of the LEAGUE for Special Education Voters (org). Thanks to all those who helped, volunteered, called, wrote, signed, and helped SPREAD the WORD. & Naomi, The Shirts were TERRIFIC!!!! And LAYS (FLOWERS ;-) Wonderful...We had A terrific trip to OZ... DC<><>. Response was more that had been anticipated - Many Parents/Advocates & CHILDREN<><><> From ALL over the Country. The Response from the offices of the Senators, was Open, Attentive, Inquisitive, And EVERY MTG., that I was at, for my Appointments or as support for other constituents, The Staff took notes!!!. This is, of course, not Unheard of, But not an overall policy, And never has it occurred, in my experience[s], at EACH AND EVERY mtg. -- I attended on a full day of visits. This happened <> and happened all days of the Senate visits. THEY WERE ALL Listening and asked for specifics and we had them (Power Point Presentation Print-Outs); This was put together, by our Friends Jamie, Susan, & Mrs.LD_OnLine! Most <> All responses <> from the Senate offices <> had changed from last Summer & Fall! They stated they have been taking notice of concerns from parent/advocates and taking new and harder looks at S-1248. Some offices said they had been inundated with calls and all or most were VOTE NO ON S_1248,this came from both Parties. THIS TIME THEY ARE ACKNOWLEDGING That PARENTS ARE! Being Heard from and that PARENTS are AGAINST S--1248. HOWEVER <> This is not over __ BY ANY stretch of the imagination. Several Senate Staff <> did say this could be voted on by the end of next week; However, is has become a sensitive subject and Medicaid issues could push off the vote. DO NOT LET UP - Keep Calling and KEEP GETTING signatures on the VOTE NO TO S-1248 Petition!!! By the End of Friday Night, EVERY SENATE OFFICE had been Delivered the Petition and Constituent letters that were sent in, this is Guaranteed! Two volunteers and two wonderful little girls (True Troopers and sibs. Of children with <True> AbiLiTIeS) made sure of this. AND MORE COOKIES NEXT WEEK PLEASE do not forget OUR HEROES and the Sacrifice all made and one of our HEROES showed us all -- what sacrifice is. This hero practiced what he Taught & preached to us, HE Made a Stand in - the FIGHT 4 RIGHT; Did not BACK Down; NO _ He gave no Ground, Did not withdraw, retreat, cave in, nor and did not Show Defeat Courage - the will to choose the right path instead of the easy path. Dave Wong For those who don’t know me, I can wear two personalities. My more natural personality is an introverted, go-with-the-flow kind of guy, one who assumes that most people fully intend to do the right thing. However, when the ones I care about either at home, amongst my friends, or at work are threatened, then I’ve been told I can quickly become an aggressive, compassionate, driven, relentless, intellectual rabble-rouser. Like many of us, I have been motivated by HR. 1350 and S. 1248 to move beyond my comfort zone to find the courage to do what is right. Having never attended an organized protest before, I was very intimidated at the prospect of participating in the Washington Event. However, taking a chapter out of the parent’s manual for children with special needs, I realized that we are forever asking our kids to do things that don’t come naturally to them. Even if painful, we ask, encourage, and help them overcome horrendous barriers. Our kids teach us so much. How could I not practice what I preach? How could I not find the courage to participate in the Washington Event? Being from the most populous state, California, I found it a challenge simply managing to set up meetings with each Senator’s educational aide. It took numerous phone calls and several faxes. I look forward to the day when the League has enough political clout to grant us easier access to our legislators. Training day was morale boosting. Jamie, Candace, and Susan did a fantastic job of preparing us for the next day’s Senate visits. They also gave a presentation regarding the key problems with S. 1248 on which the team needed to focus. Knowing I only had 30 minutes with each aide, I prepared a 3-ring notebook for each Senator ahead of time. The main topic for discussion in these meetings was presented via a PowerPoint presentation that focused on four issues: full funding, STO’s, manifestation determination, and due process rights. I also included, as appendices, copies of personal experience letters, funding reports, the SPENCE report, school psychologist reports, other parent letters from California, plus our petition. I breathed a huge sigh of relief when I didn’t need to go to Kinko’s to update my notebook’s contents. Training day, along with the reception and dinner afterwards, was also very emotional. It was the first time I’d had a chance to meet my cyber buddies face to face. Although we manage to get so much done through email, it truly doesn’t compare with “pressing the flesh” with a handshake or a hug. I was once again poignantly reminded of how so many of our kids go through life without the ability to understand the non-verbal cues of social interaction. They miss so much and it is so much harder to communicate. I am humbled by their courage to keep trying. On Thursday, the day of our visits to the Hill, the only major disappointment came early. Jennifer and her team had created these wonderful “toolboxes” of cookies representing the tools that would be removed if S. 1248 passed, a true labor of love. Unfortunately, the guards would not allow me to bring my four toolboxes in. I was sent to a security trailer two blocks away to get clearance. However, the trailer security also denied access. I was left with two options: mail the boxes or discard them. With only ten minutes before my first scheduled meeting with Senator Boxer’s aide, I was left with no other option than to leave the cookies behind. I understand that my teammates were able to get their toolboxes through. I guess I don’t have a trustworthy face. <g> My meeting with Senator Boxer’s aide went better than expected. Jamie had warned us to expect a neutral response. In my case, however, the aide was quite sympathetic to our issues. She was new to IDEA Reauthorization, so I suspect hearing about our issues for the first time brought out a more emotional response. At the end of the meeting she agreed to bring my issues forward, but Senator Boxer was still undecided. Afterwards I made cold-calls to several Senators’ offices. But in each case, the education aide was not available and I was told he/she would be tied up the rest of the afternoon. I understand others were more successful with their cold calls. I ended up just leaving a calling card, letters and a copy of the petition. I guess I need a more advanced class in sales training <g>. I ran into Susan, Matt and Shari, and together we went to the Senate cafeteria for lunch. It was a great opportunity to compare notes. For future events, I strongly recommend we set up an area in the cafeteria or a conference room where teammates can drop in to share experiences, get helpful ideas, and to recharge our batteries. After lunch, I had an appointment with Senator Feinstein’s primary educational aide. Thankfully, I had paid close attention to Jamie’s training. Feinstein’s aide was aware of the issues, neutral in her responses, and asked good questions. One such question was why other disability organizations are not supporting a NO vote on S. 1248. I responded that “I cannot speak for other organizations, but the League is a grassroots organization with no allegiances to specific disabilities. Our chief concern is a FAPE for all children with disabilities. We have no outside agenda. We, the parents and our children, are where the rubber meets the road; we are the ones who will be the first to feel the impact of what could be irreparable damage caused by the current provisions of S. 1248. We are the ones who have to deal firsthand with the effects of whatever legislation the Senate passes. We feel S. 1248 hurts our kids.” While I realize that it is best to provide personal experience responses to questions from Senators and their staff, I still feel it would still be helpful if, in future events, we brainstorm on potential questions ahead of time. This would allow us to be better prepared, especially those of us who find it difficult to think on our feet. After visiting the office of Senator Feinstein, who is still undecided, I dropped off my remaining cold-call packets. As with my earlier cold calls, I was unable to speak directly with any staffer. This is one area that we’ll need to work on in future Washington events. How do we connect with staffers from states of which we are not constituents? My experience in the debriefing meeting was similar to that of most of the participants. I was duly impressed with Jamie’s ability to get Stephanie Lee (OSEP), Annie White (Senator Gregg), and Connie Garner (Senator Kennedy) to come and listen to us. They seemed genuinely sympathetic and understanding as various teammates spoke of their particular issues. However, it was disturbing when time and again the staffers mentioned the need to take the issues up to a higher level. There definitely seemed to be a disconnect between the parents who are concerned about how the details of individual S. 1248 issues will affect their children and the staffers who are looking at the overall impact of legislation to millions of students with disabilities. In my humble opinion, until we find a way to close that gap, our attempts to influence IDEA Reauthorization through these staffers will be limited. Afterwards, several of us went over to Union Station for dinner. After dinner, Shari and I talked Naomi, Callahan, and LeAnna and her two kids into joining us for a night tour of the monuments. Our original plan was to visit the Lincoln Memorial, but perhaps fate was working overtime because we were unable to find the parking entrance. Instead we ended up at the Jefferson Memorial. You can’t imagine the feeling I had walking in balmy weather, under the blossoming cherry trees, along the banks of the tidal basin, seeing the reflections of the other Memorials, and onto the steps of the Jefferson Memorial. It was so poetic for us to finish the day at the Jefferson Memorial. Many scholars believe that Thomas Jefferson had Aspergers Syndrome, a variant of Autism. Jefferson a hero in his day, found the will to continually choose the right path instead of the easy path. All day long our courageous team fought for the educational rights of children with disabilities, people like Jefferson. I also know of many heroes who needed to stay home, drive events locally, and “hold down the fort.” Question, are there any political heroes left in Washington who are willing to do what is right instead of what is easy? |
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