April 2009 Enewsletter

 
 

 

MCDSIG Upcoming Events

  1. MCDSIG Spring Fling-Friday, May 8th from 6:30-8:30pm at the Trinity Lutheran Church Social Hall.  This event is free.  There will be pizza and hoagies, chips etc., water and juice boxes.  If you would like to bring something, you are welcome to bring a dessert item.  Please RSVP by May 1st with the number of people attending so we can get an accurate count for food.  As always, family and friends are welcome to attend as well! 

    We will be entertained by Kristian Paradis, an active steelpan performer and teacher based in Philadelphia, and was awarded GigMasters "Top Steel Drummer" award in 2007. He has been featured as the drummer for the US Navy's Show Band "Far East Edition", lead pan player for the Tokyo Panorama Steel Orchestra and the Royal Palms Steel Band, as well as his newest Caribbean party group, De Jumbie Crew. Mr. Paradis has performed around the world, including appearances with the Tokyo Symphony Orchestra and the Israel Philharmonic Orchestra. He currently teaches steelpan at the University of Delaware and the Northern Home for Children, as well as teaching out of his home studio and giving clinics to local school music programs. You can check him out at http://www.myspace.com/kristianparadissteel
     

  2. MCDSIG Hospital Outreach Meeting-Monday, May 18th from 6:00-8:00pm at the MARC building in Eagleville, PA.  We will use this meeting to discuss ideas about how to reach out to new parents as well as professionals so that new parents get accurate information and the support they need when their child is diagnosed with Ds.  Doing this well is a big job and the more people we have helping, the better so please join us!
     

  3. MCDSIG July Meeting featuring the Drinker Brothers-We are still finalizing the details of this event.  It is tentatively scheduled for the evening of Saturday, July 18th.
    We send out the specifics as soon as we have them.  If you haven’t checked out scenes from their documentary yet, go to http://dandrinker.blogspot.com/

Upcoming Events

  1. Brad Hennefer from Golf Life to be on TV-Attached is a link about a show that will air in June about inclusion, that includes Brad Hennifer, his brother, and his basketball coach.
     http://www.caucusnj.net/caucusnj/special_series/families/barriers.asp
     

  2. WMUSA Top Soccer Program-age 4 and up official US youth soccer program that enriches the lives of young athletes with disabilities through the game of soccer.  For more information visit www.westmontsoccerunited.org  or call Angela Bruecks at 610-505-4371
     

  3. Variety Club Summer Programs- Visit http://www.varietyphila.org/ to learn about the many summer programs available.
     

  4. The 33rd Annual Philadelphia Regional Conference on Developmental Disabilities

    Date:    Friday, May 8th, 2009
    Time:        9:00am - 3:00pm
    Place:   The Children’s Hospital of Philadelphia, 3535 Market Street 16th Floor, Philadelphia, PA 19104

    A forum to discuss areas of mutual concern, foster partnerships and keep abreast of the latest developments. For questions, call 215.590.7466 or email: yerkess@email.chop.edu.

     

  5. Universal Design for Learning:

    Meaningful Access to the Curriculum for all Students

    With Ricki Sabia, Associate Director NDSS Policy Center

    Wednesday, May 13, 2009 ~  7:00 – 9:00 pm
    Helen Mills Theater, 137-139 West 26th Street, New York City

    Reservations required. Please reply to bfinkelstein@ndss.org to confirm your attendance
    or call 212.763.4367. Space is limited. There will be no solicitation of funds.

    For more information please visit http://www.NDSS.

    Ricki Sabia resides in Silver Spring, Maryland and is the mom of David, a college student, and Stephen, who has Down syndrome and is fully included in regular 10th grade classes at his neighborhood high school. She is a graduate of Georgetown University and the University of Maryland School of Law. Ms. Sabia has been an advocate for children with disabilities and their families since 1992. In 2002 she joined the Policy Center at the National Down Syndrome Society, where she is currently the Associate Director. In that capacity Ms. Sabia chairs the National Universal Design for Learning Task Force and is on three national advisory committees for federally funded projects on assessments for student with disabilities. She is also a nationally recognized speaker on the Individuals with Disabilities Education Act, the No Child Left Behind Act, Universal Design for Learning, and strategies for inclusive education.
     

  6. Third Annual Dufferfest to support CHOP T21 Center-DufferFest is a music festival featuring local bands, disc jockey, children’s crafts, games for the big kids, food and drinks, dancing and good times http://www.dufferfest.com/
     

  7. Little Wonders Inclusive Summer Programs for ages 3-12-CALL 610-275-KIDS or visit www.littlewonderscenter.com

     Little Wonders Parent Networking Group
    Informal Meeting for Parents to Meet and Share Information.
    All parents or caregivers of children with special needs
    are welcome to attend .There is no charge for this event.

    Guest Speaker: Jill K. Belchic-Schwartz, PhD Childhood Solutions, PC
    “Addressing the Needs of Siblings of Children with Special Needs”
    Little Wonders     Child Growth & Development Center, Inc.
    DATE: Tuesday, May 19th
    TIME: 7:30pm - 9:00pm
    LOCATION: 100 West Germantown Pike East Norristown, PA 19401
    RSVP Preferred, but not necessary.
     

  8. From Pam Grossman of Transition Committee Montgomery County Right to Education Task Force-We need the help of parents who have students who are 14 years of age or older and have (or had) an IEP. Graduates are encouraged to share their stories! The Montgomery County Right to Education Local Task Force Transition Committee, has put together a comprehensive survey for parents of students with an IEP,  so you can let us know what your family’s experience has been regarding post secondary transition.

     Please, take a few moments to take this survey. Make a difference for your family while helping others! Please pass this on to other families. With your  anonymous information we can make recommendations  to the State Task Force, school districts, and agencies supporting young adults.  Without your information - no changes, no suggestions, status quo will prevail.

     http://www.surveymonkey.com/s.aspx?sm=9eEmp7pOZPg_2fNc7NXrEK0Q_3d_3d  
     

  9. Spring Valley YMCA Camp MAJIC-June 22nd-August 14th and offers weekly options.  For school age, call Jennifer Ivey at 484-984-0561 or email jivey@fvymca.org

    For preschool age call Alison Johnston at 610-948-9622 or email ajohnston@fvymca.org .

Prenatal

  1. Prenatal DNA test raises both hopes and worries
    Image by: Photos.com Researchers have been able to diagnose certain genetic conditions, like Down syndrome, in fetuses since the 1960s. ...

Medical and Research

  1. Gene expression signature of cerebellar hypoplasia in a mouse ...
    Down syndrome is a chromosomal disorder caused by the presence of three copies of chromosome 21. The mechanisms by which this aneuploidy produces the ...

Music

  1. Finnish Teacher Unlocks Music for Special Needs Students-http://www.csmonitor.com/2009/0429/p47s01-lign.html

Videos

  1.  

Movies

  1. Up Syndrome-Using donated digital tapes and a camera purchased with money earned from an eBay sale, indie filmmaker Duane Graves's critically acclaimed documentary chronicles a year in the life of his childhood friend, Rene Moreno, who has Down Syndrome. After graduating from a high school for special students, Moreno sets out to make his way in the adult world, optimistically battling the prejudices his condition engenders. Upsyndrome released on Netflix
     

  2. Yellow Brick Road-Chronicles a group individuals with developmental disabilities preparing for a performance of the Wizard of Oz. http://www.yellowbr ickroadmovie. com/ybr_site_ 01.html

Books

  1. Street Gang: The Complete History of Sesame Street , by Michael Davis-A compelling and comical story about the creation and history of Sesame Street . Emily Pearl Kingsley is highlighted in the book for her work in including individuals with disabilities on Sesame Street  which began nearly 38 year ago.  Michael Davis also highlights her son, Jason Kingsley, who was the first child with Down syndrome to appear on the show. Sesame Street continues to be the leading TV show to appropriately include individuals with Down syndrome and other disabilities. For more information visit: www.streetgangbook.com

Education

  1. Inclusion tough call for local families
    Alex was diagnosed early with Down syndrome, and inclusion was a relatively new idea when the Beams were making their decision. The family felt as though ...

Adults with Down Syndrome

  1. Can children with Down's Syndrome be independent?
    But, unlike most of her peers, Sam has Down's Syndrome and cannot grasp the concept of money. “She understands notes, because she can see the numbers. ...

Using Appropriate Language

  1. The National Down Syndrome Society and our Ambassador John C. McGinley Support the Special Olympics: Spread the Word to End the Word Campaign.  Click here for more details!
     

  2. Vandebilt teachers and students help to ‘spread the word’
    Her brother Skipper and her 9-month-old daughter Ella both have Down syndrome, a genetic disorder that is often apparent by distinguishing physical features ...
     

  3. Be a Fan of Special Olympics Georgia athletes and join the Spread ...
    Actor John C. McGinley, who plays Dr. Cox on the television show "Scrubs," and Ambassador of the National Down Syndrome Society, pledged his support for ...
     

  4. Cherish children with disabilities
    In the past, many of those children were people with Down syndrome. Recent decades have seen a profound reduction in the population of people with Down ...

Inspirational

  1. Love heals broken dreams
    When Nykie Grove-Eades' daughter was born last year with Down syndrome the 32-year-old Birkenhead designer thought her dreams for the future had been dashed ...
     

  2.  Thibodeau's story shows magic of sports
    Thibodeau stands 5 feet 6 inches tall, but short stature is not the main detriment for Thibodeau: He has Down's syndrome. Down's syndrome is a condition ...
     

  3.  Class president overcomes syndrome
    Yes, there's something irresistible about 10-year-old Julie Ann — and it doesn't seem to matter a whit that she has Down syndrome. ...
     

  4. Down's age milestone for Peter, 75
    Pensioner Peter Akers has defied medical opinion to become Britain's oldest living man with Down's Syndrome. Born in 1934, 75-year-old Peter was not ...
     

  5. Down syndrome no barrier to teen politician
    The high school quarterback says a warm hello to him when he sits down next to Sean at a baseball game. Players, coaches, parents and fans in the stands ...
     

  6. Down syndrome boys get kick out of classes
    Only months after joining a karate class for people with Down syndrome, two boys are into their first round of grading. Daniel Howard, 15, at front, ...
     

  7. Down syndrome actors bringing 'Grease' to the stage
    For the second year, Couling returns to direct a popular musical that combines young actors with Down syndrome, with their nondisabled peers. ...
     

  8. The power of love
    Schroeder, 39, who has Down Syndrome, was in an Adult Basic Education class at Laconia High School at the time. "I realized the teacher and everyone else ...
     

  9. Teen with Down syndrome
    Ballway has Down syndrome, but that doesn't stop him from hitting the court and having fun. And when you meet him, you see he's just one of the guys. ...
     

  10. A second Young has a run on the 'G
    CLINTON Young was six when his brother Lachlan was born with Down syndrome. He and his other brothers - Gavin, Jarrod and Mitchell - understood that the new ...
     

  11. Chester's M&S hand cheque to Eastenders's star for Down's Syndome ...
    A SOAP-STAR toddler with Down's Syndrome has accepted a cheque

Legislation

  1. NDSS Policy Center Update-The NDSS Policy Center has been following the developments of the American Recovery and Reinvestment Act (ARRA), also known as the stimulus package. To follow the national and local developments visit, www.recovery.gov.

    The Policy Center has been moving forward with three key pieces of legislation:

    Prenatally and Postnatally Diagnosed Conditions Awareness Act of 2008(Kennedy/Brownback) Congresswomen McMorris Rodgers and Holmes Norton sent a letter co-signed by other members of the House of Representatives to the House Appropriations Subcommittee in support of providing $5 million in FY10 Appropriations to implement this Act. The law requires the Department of Health and Human Services to collect and distribute information relating to Down syndrome and other prenatally or postnatally diagnosed conditions, coordinate the provision of supportive services for expectant or new parents receiving a positive diagnosis of these conditions, and oversee the new requirements for health care providers established by the law. There is also a requirement for the Centers for Disease Control to help state and local health departments integrate testing results into their data collection.

    Achieving a Better Life Experience Act ( ABLE ) of 2009(S 493/HR 1205) These bills have recently been introduced in the House and the Senate and co-sponsors for these bills are being sought. The ABLE Act will allow individuals with Down syndrome to create a disability savings account that would accrue interest tax-free.  The account could fund a variety of essential expenses for the individual.  The legislation prohibits amounts held by, or paid or distributed from any ABLE accounts from being treated as income or assets when determining eligibility for benefits provide by any Federal benefits program. Please call your elected officials to ask them to co-sponsor these bills or send an email from http://capwiz.com/ndss/issues/alert/?alertid=12827501&queueid=2992136061.

    Higher Education Opportunity Act (HEOA) Work has begun on the negotiated rulemaking for the HEOA, which contains many provisions benefiting students with Down syndrome. An NDSS alert recently went out to get Members of Congress to support appropriations for this Act.      Click here to link to the NDSS Policy Center

    Accommodations on High Stakes Testing, College and Graduate School Admissions Tests By: Hillary D. Freeman, Esq.

    No Child Left Behind (NCLB), signed into law in 2001, requires states and districts to administer standardized assessments in certain grades to measure basic skills in reading, writing, and math.

    Students with disabilities may not be excluded from these assessments. Instead, the district must provide appropriate accommodations as determined by the IEP team or §504 team. Some examples of accommodations may include, but are not limited to, extended time, isolated room, a reader and/or scribe, enlarged print, and/or a computer. Click here to read the full article.