National Down Syndrome Society E-Newsletter

September 2011

The 2011 Toys"R"Us Toy Guide for  

Differently-Abled Kids® Has Arrived!     

For nearly 20 years, Toys"R"Us, Inc. has provided parents, caregivers and gift-givers with toy recommendations for children with special needs through the Toys"R"Us Toy Guide for Differently-Abled Kids®. This month, the company launched the 2011 edition of the Guide, featuring actress and philanthropist Eva Longoria on the cover alongside Elijah De La Cerda, a 5-year-old boy with Down syndrome from Fresno, California. Released annually, this complimentary resource is created with guidance from the National Lekotek Center, a nonprofit organization dedicated to making play accessible to children of all abilities.

The Guide is available in Toys"R"Us® and Babies"R"Us® stores nationwide and online, in English and Spanish, at ToysRUs.com/DifferentlyAbled.

All items in the Guide are paired with icons to indicate which skills that can be developed during playtime. This year's edition offers more toys than ever before, selected for their ability to help kids build critical skills, including fine and gross motor, social, creativity, auditory, language and more.  The Guide also includes the "Top Ten Tips for Buying Toys" from the National Lekotek Center and "Safe Play Tips for Children with Special Needs."

Toys"R"Us, Inc. has a long history of supporting NDSS through the Toys"R"Us Children's Fund, a public charity affiliated with the company.

Toys"R"Us wants to make it easy for all groups affiliated with NDSS to receive complimentary copies of the Toys"R"Us Toy Guide for Differently-Abled Kids®.

We invite you to send us an email at info@ndss.org to make a request for your group. Guides are available in cases of 250 each, and you may order as many cases as you need.  Smaller amounts may be shipped upon request.

Please provide us with the following information when making your request:
Subject line of email:  Request for Toys"R"Us Guides
Body of email:  Full name, the name of your affiliation, a "ship to" street address (no P.O. Boxes), a contact phone number, an email address, number of Guides you are requesting, and date needed by (if you are ordering for a Buddy Walk® or other event)

Your contact information will be forwarded to Toys"R"Us, who will ship the complimentary Guides to you.  Happy shopping!  

NDSS Welcomes Julie Cevallos! 

NDSS is pleased to announce the expansion of the Marketing Department!  

NDSS welcomes Julie Cevallos as the new Vice President of Marketing, joining us most recently from Brooks Brothers, and prior to that, Macy's. Her background is in all aspects of marketing, including direct mail, social media, online marketing and customer relationship management. Julie is a parent of a 2-year-old daughter, Nina, who has Down syndrome, and also has 6-year-old son, Alec. Click here to read her story about Nina as featured in the My Great Story campaign.

Sarah Schleider, Vice President of Marketing & Communications has stepped down from her role and will transition into a consultant, managing several aspects of the My Great Story campaign.

Jordana Stern, Communications Associate will continue to handle the day-to-day operations of the My Great Story campaign, social media and looks forward to continued collaboration with the National Buddy Walk® program.

The NDSS Marketing Department looks forward to continued work in all areas of public awareness and strategic marketing!

NDSS National Policy Center Update

-  Dr. Allan E. Guttmacher, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), announced that NICHD will take the lead in establishing a Down Syndrome Consortium with other National Institutes of Health (NIH) components that are part of the existing Trans-NIH Down Syndrome Research Working Group. Importantly, representatives of Down syndrome groups, such as researchers, clinicians, self-advocates and parents, will now be included in ongoing meetings at NIH, the government agency that funds medical research in our country. Some of the most pressing research issues that will be discussed include  implementation of the long-range NIH Research Plan on Down Syndrome and ways to help promote results-oriented research that is likely to produce interventions and treatments to improve the quality of life of persons with Down syndrome. The Consortium is an outgrowth of two meetings held in 2010 focused on the creation of Down syndrome patient registries and biobanks, one organized by NDSS in September, and another cosponsored by NICHD and the Global Down Syndrome Foundation in December.  

Click here to read the NIH Research Plan on Down Syndrome.  

-  Over the past four years, Congress has been working to amend and reauthorize the Elementary and Secondary Education Act (ESEA), which was given the nickname "No Child Left Behind Act" or "NCLB" when it was last amended in 2002. NDSS has been very involved in this process. Recently, U.S. Secretary of Education Arne Duncan announced that in the absence of a reauthorized statute he plans to use his authority to create a process to allow states to waive some regulatory provisions of NCLB/ESEA, if they meet certain criteria that are currently being determined. The Secretary has granted a few waivers already, but the process, which will begin sometime this fall, will make requests more widespread and may make the consequences of the waivers more dramatic.

NDSS is concerned about the impact these waivers could have on the degree to which states, districts and schools are held accountable for the academic achievement of students with disabilities. Prior to the NCLB amendments to ESEA, it was difficult to get data on academic achievement for these students. In addition, there were  no consequences for states, districts and schools if students with disabilities were not academically proficient- as long as the school as a whole did well. The NCLB amendments provided academic accountability by requiring data collection for the disability subgroup at every school and high academic expectations for all students and consequences (often in the form of assistance with instructional strategies), when students with disabilities were being left behind. We must ensure that  accountability is not diminished by waivers, which may allow states to weaken or opt out of key regulatory requirements governing the implementation of the law.  We have already provided input to the U.S. Department of Education regarding the importance of strong accountability for academic achievement, ensuring access to the curriculum through Universal Design for Learning (UDL) and requiring states to be transparent in their waiver request development so the public can provide input. It will be important for NDSS affiliates to be as involved as possible if their state is working on a waiver request or has submitted one. Collaboration with the key advocacy groups in your state will help you determine if the waiver request poses risks for students with disabilities.   

Click here to visit the NCLB Waiver Status website for more information on the current status of individual states with regard to waiver requests. 

-  NDSS chairs the National Universal Design for Learning (UDL) Task Force, which promotes the incorporation of UDL provisions in federal legislation and policy. The principles and guidelines of the UDL framework are designed to provide access to the curriculum for all students. The most recent bill in which UDL provisions have been incorporated is the Continuum of Learning Act of 2011, recently introduced by Congresswoman Mazie K. Hirono (D-HI). The Continuum of Learning Act would amend NCLB/ESEA to strengthen connections between existing early learning programs and the elementary grades. Even though the bill is primarily aimed at early learning programs, its provision regarding professional development on UDL is in a grant section that applies to all educators.

Click here to learn more about the National UDL Task Force.  

-  Since the Senate Health, Education, Labor and Pensions Committee (HELP) postponed hearings on the Workforce Investment Act (WIA) this summer, meetings have been held to discuss Section 511 of the proposed bill, which a number of disability organizations would like to see dropped entirely from the legislative proposal.  NDSS, and several other disability organizations, fear that Section 511 will not reduce dependence on sheltered workshops and on subminimum wage employment but, rather, will increase usage.  One important meeting, sponsored by the National Disability Rights Network, the Association of University Centers on Disabilities and other organizations, was specifically called to allow representatives of groups to discuss their views on Section 511.  Over 40 persons met together and another 100 individuals participated by phone.  Two members of Senator Tom Harkin's (D-IA) staff, Andy Imparato and Lee Perseley, answered questions.  No conclusions were reached but NDSS was pleased that staff listened attentively to concerns that were articulated.   

-  Sharon Lewis, Commissioner of the Administration on Developmental Disabilities (ADD) met with NDSS Policy Center staff to strategize about ways to expand postsecondary education opportunities for students with intellectual disabilities. She was formerly the disability policy staff person for Congressman George Miller (D-CA), Chairman of the House Education and Labor Committee. In that position, she was instrumental in including model demonstration projects and financial aid for students with intellectual disabilities in the Higher Education Opportunity Act. She was also critical to the passage of restraint and seclusion legislation in the House of Representatives. ADD, along with the U.S. Department of Education, funds Think College, which provides postsecondary options for people with intellectual disabilities.

-  NDSS and George Mason University are sponsoring the 2011 State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities that will take place in Fairfax, Virginia on November 3 and 4, 2011. The Conference is a great opportunity to network with and learn from leading experts on postsecondary education, including college and university faculty, researchers, administration officials, parents and self-advocates.

Click here for more information and to register.  

-  Along with other members of the Alliance to Prevent Restraint, Aversive Interventions and Seclusion (APRAIS), NDSS Policy Center staff met with representatives of the U.S. Department of Education, including Office of Special Education and Rehabilitative Services (OSERS) Assistant Secretary Alexa Posny and Office of Special Education Programs (OSEP) Director Melody Musgrove. The productive meeting focused on the Department's planned communication to the field about restraint and seclusion prevention. The meeting provided an opportunity for APRAIS to provide recommendations and discuss restraint and seclusion issues with the Department of Education.

The NDSS Texas GAC with NDSS Staff (left to right): Leah Chapa, co-chair; Rachelle Landry, secretary; Stephanie Smith Lee, NDSS;   Gerard Jimenez, co-chair, Sara Weir, NDSS; Randy Burkhalter, co-chair

-  NDSS Policy Center staff attended the National Down Syndrome Congress (NDSC) convention in Texas and were fortunate to have interactions with many parents, self-advocates, and co-chairs of NDSS state Governmental Affairs Committees (GAC). The newest NDSS GAC (pictured) is off to a great start. 

-  The NDSS Policy Center is working closely with a planning committee in Virginia to establish a GAC in that state. The planning committee affiliate members are: Carol Kando-Peneda, Down Syndrome Association of Fredericksburg; Scott Moran and Jennifer Krajewski, Down Syndrome Association of Greater Richmond; Andrea Anderson and Cheryl Ward, Down Syndrome Association of Hampton Roads, and Michelle Ray, Down Syndrome Association of Northern Virginia. The committee is gearing up for the leadership training conference that will take place October 28 and 29.

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 

Over 300 people have added the NDSS pic-badge to their profiles profile pictures on Facebook or Twitter! By adding the badge, also known as a Twibbon, they are supporting NDSS and spreading the word to all who see their profile pictures.  

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

Buddy Walk® News

Times Square Video

It isn't too late to attend the presentation of the 2011 NDSS Times Square Video! We invite you to join us in New York City on Saturday, September 24 to watch it on the MTV plasma screen in Times Square beginning at 10:15am.  We will gather to watch the video at the pedestrian mall on Broadway between 44th and 45th Streets.  

A complimentary bus service is offered to those attending the 17th Annual New York City Buddy Walk immediately following the video presentation.  Bus reservations from Times Square to Central Park will be accepted until Friday, September 16.  To secure your seat(s), you must email nycbuddywalk@ndss.org. The subject line should read "Times Square Video Bus Reservation" and the body of the email should include your full name and the number in your party.

If you are unable to join us, we invite you to visit the NDSS website starting on October 3 where the 2011 Times Square Video will be visible for an entire year.  Copies of the video are also available for purchase.  Thank you again for sharing your unique and special photos with us!   

Click here for ordering information.

Buddy Walk Benefits

Did you know... all registered and approved Buddy Walks receive many valuable free or reduced cost benefits throughout the year from NDSS, national partners and corporate supporters? 

NDSS provides:

·    Detailed Walk listing on the Buddy Walk website, which includes a live link to the host organization.

·    Customizable Radio PSA featuring national celebrities.

·    TV PSA featuring national celebrities.

·    Webinars on topics such as social media, marketing, fundraising.

·    Comprehensive Manual (the premier guide for the Walk community).

·    Resource materials such as a press release, sponsor package, sample letters and other templates.

·    75 posters to promote the Walk.

·    100 NDSS brochures, which provide up to date facts and information.

·    Committed staff to help each organizer with the Walk available year round, and the material benefits available for fulfillment between June and December.

In addition to all that NDSS offers, we have many generous national partners and corporate supporters this year that recognize the importance of the Buddy Walk in the community! In 2011 the following is available to all registered and approved Walks:

·    Regal Entertainment Group® will air a 30-second Buddy Walk PSA nationwide on over 6,600 theater screens before every movie from September 16 to October 3. This PSA encourages viewers to find a local Buddy Walk by visiting the Buddy Walk website.

·    Signing Time® provides a complimentary DVD set valued at $75.

·    Down Syndrome Footprint®  offers each Walk a gift basket of Down Syndrome Footprint merchandise. In addition, Down Syndrome Footprint has come up with three different ways to raise funds for the Buddy Walk or the affiliate using their merchandise risk-free.

·    Knology®, an interactive communications and entertainment services company, provides media and outreach support to Walks in locations where they have offices. Keep an eye, out as they are a growing company!

·    Okobos®, a unique footwear company, offers fundraising opportunities through the sale of their items, including the custom Buddy Walk accessory- Okobit.

·     Woodbine House, a publisher that specializes in books about disabilities, offers 200 brochures, a complimentary book and reduced rates for books specifically related to Down syndrome.

·    T-Formation, our preferred vendor, offers competitive rates and reduced group prices on certain items plus the opportunity to bundle orders with other Buddy Walk groups for cost savings in their Buddy Walk store.

·    Toys"R"Us® provides complimentary copies of their "Toy Guide for Differently-Abled Kids®" to Buddy Walks or affiliates and encourages their employees to volunteer at local Walks.

NDSS is proud to acknowledge the support of the companies noted above and, even more, the hard work of our organizers.  Their commitment ensures that the Buddy Walk remains the most widely recognized Down syndrome awareness program both nationally and worldwide!

NDSS Buddy Walk Blog

Thank you to all of the new followers of the Buddy Walk blog, and extra special thanks to our first few contributors!  If you have not yet checked out the new Buddy Walk blog, we encourage you to take a few moments to see what it is all about.  In addition to tips provided by NDSS staff and Walk organizers, on Buddy Walk Wednesdays we also post weekly stories from the My Great Story campaign's Buddy Walk section that highlight participants' memories and experiences.  

Click here to check out the NDSS Buddy Walk blog.

Buddy Walk Social Media 

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! 

My Great Story Buddy Walk Section! 

The top voted story in the Buddy Walk section will be featured in our next e-newsletter and the top voted story overall wins a prize, so be sure to share your story and spread the word!

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

Buddy Walk Organizers:  

Click here to download the My Great Story Buddy Walk flyer to distribute at your Walk and encourage your participants to share their stories!  

NDSS Continues Relationship with Prudential  

Employment/ Unemployment/ Jobs Survey for People with  

Down Syndrome 

There is currently no information available on employment and unemployment status for adults with Down syndrome. There is also no information describing where they work and the kinds of jobs they do. We all need that information in order to document the current situation and advocate for job training programs, funding, and more variety and choices in jobs.

There is a new survey being conducted by Libby Kumin, Ph.D., CCC-SLP, which  will begin to collect that information. The survey is designed to get information about adults with Down syndrome, ages 18-50 years old, whether they are working in paid or volunteer jobs, not currently working, or are in a training program to prepare for jobs.  If you have Down syndrome and are 18-50 years old, you can help us learn how to make jobs easier to find and to keep, and maybe even more fun to do. If you want to help, you can fill out the answers yourself, or you can ask a parent or someone else to help you.

Everyone's response is important.  Together we can make a difference!

Click here to take the survey.

My Great Story of the Month Contest 

Claire's Triathlon 

Diane Sabatier 

Baton Rouge, Louisiana

Claire's triathlon story begins this spring when she was invited to attend an Easter social for special needs families at the Healing Place Church in Baton Rouge, Louisiana.  While at the social, we came upon a booth which had a pamphlet for an annual bike riding camp called "Lose the Training Wheels."  

I was hesitant about signing up Claire because she showed no interest in attending a camp to learn to ride a bike.  Many years ago, she did try to learn to ride a bike.  Like most children with special needs, she only rode with training wheels.  The years came and went as did her desire to want to ride a two wheel bike.  Claire is 20 years old.  Why ride a bike?  How about drive a car, listen to cool music, talk on her cell phone, or text her friends.

My purpose for Claire to attend this camp was for her to try new challenges.  I thought her lack of interest and fear might hold her back.  Hoping she would get past the fear, the experience would instill a sense of accomplishment and build self confidence.  

According to Claire, the first day of her camp was tough.  She was tired because she had to pedal 75 minutes on modified bikes with rollers.  By Thursday, she was riding on her own. On Friday, she begged me to buy her a bike!  Twenty years of emotions ran through me.  Failure was not an option for her any more!  She did it.  She tried something new and succeeded!   

Susan Hayden, founder of the Rocketkidz foundation, happened to see the "homemade" video of her bike camp on Facebook.  Knowing Claire could swim, she invited Claire to participate in the annual Rocketkidz Triathlon held at Louisiana State University on July 31. In late June, Claire began to train for the event by swimming two to three times a week, bike riding three to four times a week and attending circuit training fitness classes a twice a week.   

We invited many of our family and friends to come a cheer her along for her special day.  Claire was blessed to have three shadows, people who assist race participants.  Their energy and encouragement motivated Claire to succeed and finish her race! That evening friends and family celebrated her achievement with a "congratulations" cake.  

Never in my wildest dreams could I have imagined the wonderful blessings (fellowship, family, support, and love) this day would bring.    By her expression and outward interactions, she appeared to feel that sense of pride that comes with conquering your fears!   Claire experienced a sense of accomplishment that will carry her to a new level of life achievements.   Praise God for this day!  Way to Go Claire:  50 meter swim, 1.5 mile bike ride, 1K run - Time 33:18.   

Click here to watch Claire's triathlon video. 

I was 40 when I learned I was pregnant. My husband and I were finally going to be a family! We learned during the pregnancy that our baby was a very special baby, one with Down syndrome.  Terminating the baby was never an option, this child has a purpose! From the early research about children with Down syndrome, to the massive support of our family and friends, we knew we were blessed with a gift.  After her birth, we were amazed by how many people would stop us and comment on what a beautiful child she was.  Total strangers would literally stop us to take a look at her. As she grew and developed her personality, she just blossomed! She has such an amazing amount of pure love. Somehow she knows when people just need a hug, or a hand to hold. She is genuine with her emotions. Her smile is contagious, and her eyes light up the room!

Because of Jamie Lynn, I have changed careers. I gave up the corporate environment. I now work with children and adults with all types of special needs and have opened a therapeutic riding center. Working with these children and adults as well as their families has shown me what is truly important in life. Jamie has taught me to play more and work less....

Eight years have passed and words alone cannot express the joy she has given us. She is our bright, energetic, loveable comedian!

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! 

The Quad Cities Dispatch-Argus spoke with My Great Story author Tara Wilson of Moline, Illinois, about her submission to the campaign. 

Skirt! Lexington in Kentucky covered the My Great Story campaign and highlighted Linda Hougland's story. 

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:

@JustCate1 

@DownSynAdvocacy
@AbilitiesUnited 

@momsheffield
@GDSFoundation     

 Aquatic Therapy at the Betty Wright Swim Center   

 California Disability Services Institute  

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

Social Media