National Down Syndrome Society E-Newsletter

August 2011

Check Out the NDSS Buddy Walk® Blog 

We are excited to announce that the official NDSS Buddy Walk® Blog is online. We encourage Walk organizers and individuals interested in the Buddy Walk to come back frequently to find out the latest information on the Buddy Walk program.  In addition to hearing from Buddy Walk staff, you'll hear from Walk organizers and other guest bloggers.

Click here to check out the NDSS Buddy Walk blog.

To keep up to date on all things Buddy Walk, and to hear about new posts on the blog, follow the NDSS Buddy Walk on Facebook and Twitter!  

NDSS National Policy Center Update

- NDSS is supporting H.R. 878, a bill introduced by Congressman Ted Deutch (D-FL) that would provide a refundable tax credit of up to $5,000 for the cost of establishing guardianship for an individual with disabilities 18 years or older. While NDSS is supporting H.R. 878 because it will provide monetary relief to parents and families who do decide to pursue guardianship, a process that can involve considerable expense, NDSS would like to make clear that it is neither urging nor encouraging the pursuit of guardianship.

- NDSS continues to prepare the Trisomy 21 Act for re-introduction.  Congresswoman Cathy McMorris Rodgers (R-WA), the lead sponsor of the bill in the U.S. House of Representatives, has decided to divide the original legislation into pieces that will comprise a two-bill package.  This package will greatly increase the development of infrastructure tools available to researchers and clinicians, including a Down syndrome contact registry, research database, biobank and centers of excellence.

- The Collaboration to Promote Self-Determination (CPSD) was co-founded by NDSS to promote policies that will lead to the increased employment of persons with intellectual disabilities. CPSD has engaged in a cross-disability effort to develop a paper on Medicaid reform. Click here to read the paper.  

- NDSS and other disability organizations continue to focus on the Workforce Investment Act reauthorization, introduced by Senator Tom Harkin (D-IA), chair of the U.S. Senate Health, Education, Labor, and Pensions Committee (HELP). Although the scheduled mark-up of the bill by the Senate HELP Committee has been indefinitely postponed, NDSS is pleased with the many positive provisions in the legislation that promote integrated, competitive and supported employment outcomes for persons with disabilities.  NDSS and other disability organizations are asking that one section of the bill, Section 511, be dropped. Opposition to this section of the bill was best expressed by Professor Peter Blanck, chairman of the Burton Blatt Institute at Syracuse University, who wrote in a letter to Senator Harkin:

"Based on my understanding of relevant research, law and policy, overemphasis on subminimum wage work is contrary to the principles of the Americans with Disabilities Act (ADA) and counter to the developing emphasis of U.S. and international disability rights laws on integration and equal economic opportunity. As a result of our research, we have recommended that subminimum wage authorizations be systematically reduced or eliminated, and that sheltered workshops be encouraged to transition to other job placement models."   

- On June 22, the U.S. House Committee on Education and the Workforce approved the Empowering Parents through Quality Charter Schools Act by a vote of 34 to five. The bill is intended to modernize the federal Charter School Program and provide greater opportunities for states to develop and expand successful charter schools while strengthening the measurement of the impact of the Program. Currently, there are 400,000 students on charter school wait lists. Additionally, the bill calls for charter schools to "improve student services to increase opportunities for students with disabilities, English language learners and other traditionally underserved students...." NDSS is pleased to see the language regarding students with disabilities in the proposed legislation, but believes this language should be stronger. An ongoing criticism of the charter school movement has been that some charter schools will not accept students with disabilities. 

- In June and July, the National Universal Design for Learning (UDL) Task Force, which is chaired by NDSS, developed legislative language that it will promote as part of the Elementary and Secondary Education Act (ESEA- formerly called NCLB) Reauthorization. Click here to find a copy of this language.  

- The National UDL Task Force has launched a new website. Click here to check it out.    

- On July 11, NDSS submitted comments on the proposed grant application requirements for the Race to the Top Early Learning Challenge. Awards in this grant competition will go to states that are leading the way with ambitious yet achievable plans for implementing coherent, compelling and comprehensive early learning education reform. NDSS recommended the incorporation of UDL in key parts of the application requirements. NDSS also recommended that the grant add a focus on increasing the number and percentage of children with disabilities who are in high quality early childhood programs that are not solely for "high-need children." The current wording of the application does not distinguish between separate programs for high-need children and more inclusive models. Click here to read more about this grant.

- NDSS submitted comments on July 25 regarding the preliminary plan proposed by the U.S. Department of Education to review and revise education regulations. NDSS urged the Department not to revise the Individuals with Disabilities Education Act (IDEA) regulations under this plan. NDSS is concerned that revisions may negatively affect  Individualized Education Programs (IEP), parental consent, due process and procedural safeguard provisions. These provisions are often characterized by states as creating a paperwork burden. Instead, NDSS recommends that the Department review and revise their monitoring of state and local education agencies under IDEA to include more of a focus on student performance indicators. NDSS also expressed concern about possible revisions to ESEA regulations that would lead to diminished accountability for student performance. NDSS suggested that the Department review and revise the alternate assessment regulations, which have created some unintended negative consequences for the students who take these assessments (e.g. less access to the curriculum and fewer opportunities to be educated with non-disabled peers than students with disabilities who take other assessments). Click here for the full text of the comments.

- NDSS National Policy Center staff joined representatives from nine affiliate groups in Austin, Texas for a leadership conference to form an NDSS Government Affairs Committee (GAC) for the state of Texas. Presentations by state agency and disability organization representatives, state legislators and legislative staff, and NDSS staff on key Texas and national issues, provided information for the group to consider in determining policy priorities. The Alliance of Texas Down Syndrome Associations will focus on promoting UDL in Texas schools and improvement of services and funding for young children with disabilities. Prior to the conference, the Policy Center team provided webinars for participants on education and adult issues. Click here for the UDL webinar, which is applicable for any state.

- The Down Syndrome Association of Middle Tennessee (DSAMT) organized a UDL workshop for over 200 educators from the Metro-Nashville Public School District.  The day also involved a three hour presentation on teaching children with Down syndrome, including a talk given by a self-advocate, as part of a Down syndrome specialist training program offered on a quarterly basis.  For more information about the UDL workshop and the Down syndrome specialist program, click here to contact Sheila Moore, Executive Director of DSAMT.    

Sign up to Receive Important Policy Action Alerts

Be an Advocate!

You can help make a difference in the lives of people with Down syndrome through advocacy! Whether you aren't sure who your local elected representatives are or you are a seasoned advocate, there are many ways for everyone to get involved.

Click here to learn more and to sign up to receive important action alerts from the NDSS National Policy Center.

Support NDSS Through Twibbon

NDSS has a pic-badge that anyone can add to his or her profile picture on Facebook or Twitter. By adding the badge, also known as a Twibbon, you are supporting NDSS and spreading the word to all who see your profile picture. The Twibbon can be customized to appear in a  number of places and sizes, so it will be applied to your profile picture in just the way you'd like it.

Click here to view a selection of recent supporters of the NDSS Twibbon and to add it to your profile picture.

Buddy Walk® News

Social Media Webinar for Buddy Walk® Organizers   

Please join us on Wednesday, August 3, at 12:00pm ET for a webinar on Social Media for Buddy Walk® organizers.

The webinar will be run by one of our preferred vendors, Charity Dynamics. During this webinar, we will explore ways to leverage the power of social media for your programs, events, and campaigns to expand your reach while building awareness and engagement among your supporters. With so many social media options, we'll discuss strategies to help you choose the right channels, strategically plan your messaging and tactics, target the right timing, and analyze your results.  

Click here to sign up for the webinar. 

Times Square Video Update 

Congratulations to all of the individuals who were selected to appear in the 2011 Times Square Video- you will be contacted by the NDSS office this week!  Over 1,200 photos were submitted for the contest this year, and our third-party volunteers worked hard to narrow down the amazing selection to over 200 photos for the video.  We thank everyone who submitted a photo and we look forward to reopening the contest next spring.

NDSS invites you to join us in Times Square on the morning of the New York City Buddy Walk on Saturday, September 24.  The Times Square Video will be shown on the MTV video screen beginning at 10:15am ET and will be replayed at approximately 10:35am ET.  We will gather to watch the video at the pedestrian mall on Broadway, between 44th and 45th Streets.  Immediately following the video presentation, buses will transport participants to the NYC Buddy Walk at The Great Hill in Central Park.   Email nycbuddywalk@ndss.org no later than September 16 to secure a seat on a bus- please include your full name and the number of guests in your party.  Subject line should read "Times Square Video Bus Reservation."

NDSS does not reserve hotel rooms in Manhattan for the NYC Buddy Walk.  Click here to see our travel advisory web page.

Whether or not your photo was selected, NDSS invites you to share your photo and the story behind it with the My Great Story public awareness campaign! The goal of the campaign is to ignite a new way of thinking about people with Down syndrome by highlighting their abilities and achievements. You can share your photo and story in any one of a number of sections, including family, friends, education, sports, hobbies, Buddy Walk and our newest section, Summer Fun. My Great Story is the perfect outlet for  everyone to see the photo you submitted to the Times Square Video!

Click here to view the campaign and to share your story and photo.

Buddy Walk® PSA in Regal Theaters  

Regal Entertainment Group has donated 18 days of air time to promote the National Buddy Walk Program. The 30-second Buddy Walk PSA will air nationwide on over 6,600 screens before every movie from September 16 to October 3.

Click here to watch the PSA and for a list of Regal theater locations.

Shop NDSS:

The COFFEE Idea    

Last year, The COFFEE Idea helped individuals with disabilities in 12 high schools gain over 20,000 hours of real work training as a part of a transition program.  The COFFEE Idea set up over 30 training cafes and established a private label fundraising program, for which NDSS is a featured charity partner.  

Buddy Walk® season is right around the corner and the custom Buddy Walk label can be included on a bag of coffee, a package of candy and other beverages for $10 each.  It's a great way to thank sponsors, recognize top fundraisers or show  general Buddy Walk spirit.

The COFFEE Idea donates 50% from each purchase to NDSS, with an additional 25 cents per purchase going to the College Transition Connection in South Carolina.  

To purchase NDSS private label coffee and other specialty products, visit The COFFEE Idea.  Click on the label of your choice first and then add products to your shopping bag.  Descriptions of all products are included below the label image.  

Click here to check out The COFFEE Idea at Shop NDSS.

NDSS Tribute Cards: New Designs Coming Soon  

UPPAbaby Selects NDSS as Charity of the Month 

NDSS on Extra 

Watch Actress and Philanthropist Sharon Stone on Extra TV speaking about her passion for raising awareness for people with Down syndrome at the NDSS Spring Luncheon.

Sharon Stone was the 2011 NDSS Luncheon Key Note Speaker and presented the Honoree Award to her dear friend Jagatjoti Khalsa for his extraordinary work in the book, I'm Down with You, which seeks to capture the beautiful lives and faces of people living with Down syndrome.

Sharon Stone embodies a passion for educating the general public about the advancements and achievements being made by people with Down syndrome. Her dear family friend, Jim Burkhart, for whom she babysat many years ago, sat close by throughout the interview to provide support.

NDSS secured an exclusive camera crew from Extra to capture the event in its entirety.

NDSS thanks Extra for its support in spreading the word about the importance of advocacy and raising awareness for Down syndrome amongst its viewers.

Click here watch the segment. 

Dan Piper Award:

Call for Nominations 

The Dan Piper Award is given in memory of Dan Piper, a young man with Down syndrome.  Dan had an inclusive education and showed the Iowa Public School System that people with Down syndrome are not only intelligent and able to learn, but that they are also contributing members of the school community through involvement in extracurricular activities.

We are currently requesting nominations for the Dan Piper Award from our affiliate groups. 

Click here to find an NDSS affiliate in your area.
Click here to learn more about Dan Piper and the award given in his name.

NDSS Congratulates Dr. Karen Summar  

The Joseph P. Kennedy, Jr. Foundation has named Dr. Karen Summar, a member of the NDSS Clinical Advisory Board, as one of its 2011-2012  Public Policy Fellows.

Established in 1946 and headed by Eunice Kennedy Shriver for fifty years before her death in 2010, the Foundation created the Public Policy Fellowship program to address the need for skilled leadership in government and public policy.

Kennedy Fellows are chosen for their distinguished involvement in efforts to improve the lives of persons with intellectual or developmental disabilities at the regional, state or national level.  The intensive one year Fellowship in Washington, D.C. includes a full year of active participation in public policy, advocacy training and a week-long bioethics course at Georgetown University. Fellows become future leaders who, after their year in Washington, make significant contributions to policy and program development. 

Dr. Summar, a pediatrician and researcher with expertise in Down syndrome, is currently an Assistant Professor of Pediatrics, in the Division of Neurodevelopmental Disabilities at Children's National Medical Center in Washington, D.C.  Dr. Summar was formerly the Director of the Jane and Richard Thomas Center for Down Syndrome at the Cincinnati Children's Hospital Medical Center and was an Assistant Professor of Pediatrics in the Division of Developmental Medicine at Vanderbilt Children's Hospital in Tennessee.  She is also the parent of a young woman who has Down syndrome.

My Great Story of the Month Contest 

Joanna Puciata

McHenry, Illinois

Sister about Sister:

"It is not the length of life, but the depth of life." -Ralph Waldo Emerson.
 
My big sister Kasia was born with Down syndrome in 1961, in a country and culture not well prepared to handle what they thought were abnormalities. Some were ashamed to have us over, some clearly requested Kasia stayed at home, others advised putting her in a foster home, as not to ruin family's good image. People, especially children, would pause and stare making a circus for themselves. It was rough and painful for my sister, who would come home and look at herself in the mirror asking why was she different and was she beautiful? We'd always laugh and say she was too beautiful for others to handle. She'd then reach out for Nivea cream and smudge it over her face to ensure that beauty...

For the rest of the story and to view the collection of my sister's paintings, please refer to the website I created in her memory - www.vaguememories.com. It is a touching and inspiring story, which shows that through unconditional love one can achieve the unthinkable.

Donna Crigger

Knoxville, Tennessee

It was a great pregnancy, the best one of the three.  When she entered this world and the doctor said there may be a problem I didn't believe him.  She was beautiful, the first to look like me, as a friend told me.  It was not until the end of the week that I got the call that she had Down syndrome.   My first thought was somebody is going to take advantage of my baby, and I cried.  I didn't cry for myself, but for the challenges that this precious new life would face throughout her life. How wrong I was!   

After hearing the long list of what those challenges would be my thoughts were that the first few years would be fairly easy what with low muscle tone and all.  She did have some heart problems, but they were able to hold off on surgery until she was 16 months old.  The chronic black eyes and respiratory problems didn't keep her down.  She rolled to get what she wanted at 5 months, and was climbing out of her playpen before she was one.  Once the surgery was done she has been as healthy as a horse.  In 13 years she has been to the doctor once for a broken foot she got while dancing in her room and kicking her chair.

Her first year of middle school was a joy for her, her teachers and classmates.  As I was told by the teacher, the children in her class had no idea how to really play.  Samantha burst onto the scene in her usual way with her big personality and even bigger imagination and taught them all how to have fun.  

She will be staying in eighth grade again this year only because they must be 16 to work and that will not be until February for her.  Everyone knows how badly she wants to work and they are protecting her from the disappointment of not being able to go for most of the school year.  I also think they want to keep her there because she is such a big help with the other children and teachers.  I don't mind this because they will give her the work she needs to keep moving ahead with her life skills.  

She is my joy, the gift from God for the world to see what He meant to love one another unconditionally, not judging what's on the outside but the spirit that is coming from within each person and a forgiving heart that we would all be blessed to have.  It doesn't matter where she is or who she meets, people walk away smiling and feeling better about themselves.  She radiates a light that warms the people around her, ever ready with her hugs and a smile that cannot be ignored... simply because she won't let you.

My Great Story Summer Fun Section!

The top voted story in the Summer Fun section will be featured in our next e-newsletter, so be sure to share your story and spread the word to see your story here next month!

Click here to visit the My Great Story public awareness campaign and click the submit bookmark to share your story.

My Great Story PSA on Pharmacy Health Network 

My Great Story

in the Media

The My Great Story campaign has had some exciting placements across various media this month! 

Apostrophe Magazine featured My Great Story on its blog and tweeted  about the campaign.  

Click here to view the post.

Click here to view the tweet.  

Associated Content covered the Summer Fun campaign.

Click here to read the article.  

NDSS would like to extend a special shout out to everyone who blogged, posted and tweeted about the My Great Story campaign this month. Here are a few of those who did:

@plus15campaign  

@richmistkowski 

@bearcat1324   

@GDSFoundation   

@21andCo 

@ AbleFamilies 

Running with Coffee    

Noah's Dad  

Thanks for all of your support and continuing to spread the word!

Social Media