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On March 9, one of our priority bills, the so-called Transition Bill, was signed in law by Governor Deval Patrick. Thanks to all who supported it!
Officially known as "An Act to Promote the Successful Transition of Students with Disabilities to Post-Secondary Education, Employment and Independent Living," the legislation will ensure that special educators have the necessary training to evaluate students earlier, focus on their abilities and help get them to that next phase in their lives.
This victory is an indication that lawmakers understand the importance of transition specialists in the schools and recognize that older students with disabilities need special education transition planning and services to adequately prepare for life after high school.
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The Autism Division of the Department of Developmental Services (DDS) is holding an open enrollment for the Children's Autism Medicaid Waiver from April 2 to April 14. This opportunity is available to children with ASD from birth to 9 years old (including those with Down syndrome), who meet the other criteria. To apply parents must fill out a one-page application, along with a short parent overview of the program. Applications in other languages and more detailed information will be available soon. For more information about this program, go here or call 1-888-367-4435. |
We are still looking for more veteran parents to share with new and expectant parents of children with Down syndrome information and inspiration about what the future holds in store. To that end, the MDSC is compiling a booklet of "words of wisdom" from our current parents, which will be made available to new and expectant parents. We know your thoughts and words will provide hope and a profound sense of community for our new families. We are looking for your thoughts on one or more of the following: 1. Advice for new parents 2. Things you know now that you wish you'd known then 3. The biggest gift your child has given you/your family. Include your child's current age. Please email our Family Support Director Sarah Cullen here to participate. |
 Marc Epstein, one of the leaders of our Dads Appreciating Down Syndrome (D.A.D.S.) affiliate has secured 70 tickets for a special showing of The Big Apple Circus '"Circus of the Senses," a program specifically designed to meet the needs of audience members who are disabled.
Circus of the Senses is presented under an intimate Big Top, and no seat is more than 50 feet from the ring. The showing will be Thursday April 5 at 11 a.m. at 1 City Hall Plaza in Boston. If interested, please email our Family Support Director Sarah Cullen here with the names of the individuals who would like to attend, as well as a contact phone number. First come. First served. Please be sure you can attend before emailing. Marc has kindly agreed to meet the group outside the main entrance to the circus at 10:15 - 10:30am that morning to distribute tickets and get a group photo. |
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All the biggest news this week revolves around our 28th Annual Conference, which took place last Saturday in Worcester, where we officially took back what "Style Down Syndrome" really means. In fact, news of our "Style Down Syndrome" Conference was so big that the now-iconic image of Kristin and Dr. Brian Skotko graced an electronic billboard overlooking Times Square last weekend (above).
From the Annual Meeting in the early morning to the Self-Advocate Talent Show that provided a fitting finale, the day was a whirlwind of learning, celebrating, getting to know each other and planning for an even brighter future. As MDSC Executive Director Maureen Gallagher said in her introductory remarks, we set out to show the world what we all understand - the unmistakable, irreplaceable, immeasurable value of each and every individual with Down syndrome. Ultimately, she said, that would be proven a thousand times over throughout the course of the day. It was! |
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Annual Conference Gets Stylish
How do you capture in a newsletter the magic of everything that took place on March 17 at the DCU Center in Worcester, where our 28th Annual Conference was held? You can't really, but we'll give it a shot anyway.
Our Awards Luncheon alone was a virtual parade of pride, accomplishment, advancement and optimism. First, self-advocates took to the microphone to publicly reclaim from GQ what Style Down Syndrome means. One-by-one, they announced with pride and passion one aspect of their individual style. "My style is reading books and helping people with disabilities," declared Ieva Eason. "My style is March Madness," Brendan Durkin said.
Awards were presented to former MDSC Board chairs Suzanne Shea, Charlie Gadbois and Dr. Brian Skotko. All three helped make the MDSC what it is today. Brian has even taken personal and public activism to an international stage. (More on the award winners to come in future communications.)
Our special guests, the Langston family - who came all the way from New Jersey and in so many ways define "Style Down Syndrome" - helped us honor Target Corporation for their conscious decision to include 6-year-old model Ryan Langston in their national advertising without any strings attached. See the video about Ryan and his family at bottom.
The incredibly moving centerpiece video (above) highlighted some of the best images that you submitted that exemplify Style Down Syndrome. It was expertly put together by Beverly Beckham, Globe columnist, MDSC Board member and grandmother to Lucy, who has Down syndrome. (A second slideshow that you can see here includes 180 other remarkable photos that were submitted.)
Self-Advocate Keynote speaker Ned Reichenbach gave the rapt audience of 580 a sense of how someone with Down syndrome in the 21st Century can lead a life full of socializing, hard work, healthy challenges and profound rewards.
Beyond the Awards Luncheon, there were 19 workshops that featured more than two dozen national and international experts on Down syndrome who offered invaluable information specifically for parents, educators, young adults and siblings. (See here a brief clip of just one of those expert sessions). Thirty exhibitors provided essential resources for families, and our "Style Down Syndrome" Coverize-Me Photo Booth gave attendees a keepsake for the ages.
And of course, there was the touching and flat-out-fun Annual Conference Talent Show, where act after act gave the crowd ample reason to smile, get up and dance and be proud of our community. (See one of those performances below).
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Ricardo and Cesar Coloma at our Annual Conference Self-Advocate Talent Show
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By the end of the day, it was almost easy to forget how the day had started with our Annual Meeting in early morning, where the MDSC voted in three new members and recognized the remarkable achievements of outgoing Board members. (More to come on the Annual Meeting in future communications.)
All said, it was a remarkable day that will no doubt sustain our hearts, minds and souls for a long time to come. Thank you to everyone who made it such a special occasion.
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Be among the thousands who Step In Style this year at our 16th Annual Buddy Walk & Family Picnic Sunday, October 7, 2012, where we'll promote the acceptance and inclusion of people with Down syndrome and celebrate the community during National Down Syndrome Awareness Month. Sign Up Now!
 We are thrilled to announce that Lauren Potter, actress on the hit TV show Glee, is scheduled to join us as a Special Guest. Lauren has boldly taken advantage of the public platform that Glee has given her to speak out for the rights of other people with disabilities. She tells an inspiring story of how she rose above the naysayers who confronted her at every turn as she unrelentingly pursued her dream to be a television star.
As a SPECIAL PROMOTION, the first 25 people who sign up a Buddy Walk Team will win a limited edition autographed photo of Lauren. Only 8 spots remain, so sign up today!
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One of the groundbreaking sessions at our Annual Conference this year was the joining of forces between national Down syndrome policy experts with Massachusetts leaders. Coming together to forge a powerful alliance aimed at nurturing emerging leaders in the areas of policy and advocacy, Madeleine Will and Sara Weir of the NDSS Policy Center in Washington, teamed with Laura Noble and John Anton of the MDSC Legislative Advocacy Task Force, led an informative workshop on policy and how people can make a difference.
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(L to R) Policy experts Laura Noble, Madeleine Will, John Anton and Sara Weir
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The foursome provided step-by-step guidance on how family members and self-advocates can develop relationships with local and national legislators to advocate for policies such as the ABLE Act, the Trisomy 21 Resource Research Act, the National Background Check bill and other statewide and national priority bills. The group highly recommended that all policy advocates take advantage of two websites - www.thomas.gov and www.malegislature.gov - which are essential for keeping up with your legislators and tracking their support for disability issues. Laura Noble urged all MDSC members to call the state's House Ways and Means Committee with a request that they pass the National Background Check Bill. (If your legislator is not on the committee, contact Chairman Brian Dempsey). They also recommended that Down syndrome policy advocates in Massachusetts make every effort to attend two very important events: the 2013 Buddy Walk on Washington (date to be announced) and the MDSC's Advocacy Day at the State House on April 3. See here for more information on the MDSC's policy work. If you have specific questions or would like to get involved, contact Laura Noble at timetospeakout@mdsc.org. |
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Once again, Emily LaMarca is running the Boston Marathon for her son.
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The slate of 10 Team MDSC Boston Marathon runners have been working tirelessly, not only building up their strength and endurance for the grueling 26.2-mile run on April 16, but also raising funds to support people with Down syndrome in Massachusetts. (Check out the beautiful video above that one runner put together.)
In total, they have raised more than $50,000! If you know one of them, be sure to support their effort. If you don't know them, read their stories and why they're doing it by clicking on their name below, and consider getting behind them as they seek to achieve an unbelievable feat for themselves and for a worthy cause.
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