Enewsletter August 2009
	MCDSIG Upcoming Events MCDSIG Pizza at the Park-Friday, September 25th at Fischer's Park - 2225 Bustard Rd Lansdale, PA 19446, US from 5:30-7:30pm.  This is a free event.  Pizza, water and juice will be provided.  It will be an opportunity for the kids to play and the adults to talk.  All are welcome; please RSVP with the number of eating children and adults by Monday, September 21st so we can plan to have enough pizza and drinks for all.    Upcoming Events CHOP Trisomy 21 Buddy Walk and Family Fun Day at Villanova University-Sunday, October 4th at 10am. This family fun day benefits individuals with Down Syndrome through the Trisomy 21 Program at The Children's Hospital of Philadelphia and the National Down Syndrome Society. Trisomy 21, or Down syndrome, affects more than 350,000 people in the United States. This event is great fun for the whole family and includes a walk, food, music and activities for all. This year, there will also be a special appearance by singer and National Down Syndrome Society Goodwill Ambassador Chris Burke with Joe and John DeMasi. For more information, visit www.tri21center.org, or contact Rebecca J. Elias at 267-426-5600 or by e-mail at events@email.chop.edu.   EPDSC/Lehigh Valley Buddy Walk is September 19, 2009- The Eastern Pennsylvania Down Syndrome Center is a non-profit 501C(3) organization that provides up-to-date information on Down syndrome, performs medical evaluations for children and adults with Down syndrome, and sponsors workshops, get-togethers for families and members of the community as well as our Annual Buddy Walk. 2009 EPDSC - Lehigh Valley Buddy Walk Down Syndrome Association of DE is hosting a 2-day oral motor/feeding course presented by Lori Overland.  If anyone is interested in attending, information on this can be found on the Down Syndrome website: http://www.dsadelaware.org/Events/Event.aspx?EventID=1494 <http://www.dsadelaware.org/Events/Event.aspx?EventID=1494>   Navigating My Child's Evaluation, Now What? Date: September 16, 2009 Time: 6-8PM Location: Activities Center on the Valley Forge Educational Services Campus, 1777 N. Valley Rd., Malvern, PA Description: Parents with children needing educational accommodations often have insufficient information regarding their child's evaluation plan and educational implications in the academic or social setting.  In this workshop, parents will leave with an understanding of what their child's evaluation/testing means to the educational community and what questions to ask in the process.  They will be provided with at least three strategies for future communications with schools and service organizations. The workshop is the first of the Parent Resource Workshop Series from the VFES Conferences & Training Division for 2009-2010 and is in partnership with VFES Child Development Consulting Services. Register at www.vfes.net Light refreshments served.   Learning Disabilities Association of Pennsylvania Annual Conference “Facing The Challenges 2009” Harrisburg Holiday Inn East Friday Evening Workshop – Larry Silver, MD. Saturday Morning – Nancy Mather, Ph.D. Saturday Afternoon – Matthew Cohen, Esq. For additional Information call LDAPA at 717.939.3731 or 888.775.3272 (Toll Free in PA) or e-mail: LDAPAinfo@aol. com Please click here to view our conference brochure http://www.ldapa. org/brochure/ LDPA2009. pdf   Indian Creek Foundation is offering trainings aimed at increasing the awareness and understanding of developmental disabilities. Open to both the public and those employed in the developmental disabilities field, these courses will provide valuable knowledge for family members, caregivers, and seasoned professionals. For information regarding dates, fees, and location please contact Trudy Gentzler at (267) 203-1500 extension 101. Please click here to view a PDF of the Fall Training Brochure   National Down Syndrome Society (NDSS). The My Great Story campaign is designed to honor and celebrate the amazing stories of the 400,000 Americans with Down syndrome by showcasing these stories in a beautiful online storybook. This book will feature inspirational stories about work, school, friends, family, hobbies, travel, the NDSS Buddy Walk program and many other things. If you have Down syndrome, they want to hear your great story! They want to learn about your achievements, dreams, aspirations, successes, and anything else about yourself that you want to share. If you have a great story about someone you know who has Down syndrome, please share it! They want to know how he/she has inspired you. You can tell a story about your friend, family member, colleague, student, patient, neighbor, etc NDSS has taken it one step further and turned two great stories into a national public service announcements (PSA), featuring the great stories of Sujeet Desai, The Traveler and Sara Wolff, The Public Speaker. These PSA’s will be featured in national and local media outlets across the country this fall, as well as high profile websites. Please encourage others you know to get involved! For more information please visit www.ndss.org/stories, click the 'submit' bookmark, and enter your great story.   Little Wonders Birthday Parties Click here to view our website... www.littlewonderscenter.com 100 West Germantown Pike  East Norriton, PA 19401    Nominate a Self-Advocate for The Dan Piper Award-The Dan Piper Award is given in honor 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.  Dan was employed, and had many friends in the community where he lived in Iowa .  Dan considered himself a "regular guy" that was given opportunities which allowed him to accomplish extraordinary things, such as testifying before Congress on behalf of the Americans with Disabilities Act.    Sadly, Dan passed away on September 1, 2002.  In his memory, The Dan Piper Award is given to an individual with Down syndrome, who through everyday activities brings about a greater public awareness and understanding of people with Down syndrome.  By living their dreams, this person is an advocate for themselves and others with Down syndrome.  Currently, we are requesting nominations of young adults with Down syndrome.  Click here to learn more.    Challenger Day is for youth interested in learning about or trying out sports.  Activities will include baseball, basketball, cheerleading, football, lacrosse, swimming, face painting, arts and crafts and lots more. This years Challenger Day is being held on Saturday, October 3, 2009 from 2 to 4PM at the Upper Merion Middle School in King of Prussia, PA. This event is free and open to families wherever they live. For more information, to register or to volunteer, please e-mail Emily Miller at emiller@umtownship.org or call the Park & Recreation department at (610) 265-1071 See attached flyer for further details   1ST DOWN SYNDROME AWARENESS DAY AT THE PHILADELPHIA ZOO SEPTEMBER 12, 2009. See attached flyer for further details or call Jenn Bonawitz (215) 990-8730 or Theresa Gabor (215) 632-1334 with any questions.   Save the date for the National Down Syndrome Society National Policy Center's first annual Down Syndrome Advocacy Day on Capitol Hill on February 24th and 25th, 2010. Your presence in Washington will make a difference! As part of its new strategic plan to place more national emphasis on advocacy, public awareness and Buddy Walk activities, NDSS intends to organize an Advocacy Day in Washington, DC in February or early March of each year. The timing of Advocacy Day is crucial for purposes of influencing Members of Congress as they begin to grapple with the budget and legislative priorities at the beginning of the legislative session. The exact date of Advocacy Day-February 24 and 25th--is based on input from NDSS' congressional advisors and other experts. Last year 300 Down syndrome advocates came to Washington, DC in February to successfully conduct Capitol Hill visits and were directly responsible for the introduction of the ABLE Act (Achieving a Better Life Experience), the savings bill which is a priority of our national NDSS legislative and policy agenda. Down syndrome advocates need to continue to build credibility among our lawmakers and to garner their support for our legislative priorities. The February 2010 NDSS Advocacy Day will be a unique and powerful opportunity for Government Affairs Committee (GAC) leaders, affiliate leaders in government relations, seasoned self-advocates and others to come together to: Learn strategies for successful advocacy Meet with elected representatives Create lasting partnerships Connect with other Down syndrome advocates from around the country Please hold the date on your calendar. More information will follow at www.ndss.org. See you in Washington D.C.!   Variety Club Camp Guide Online-You can now learn about Programs at the Variety Club Camp and Developmental Center in Variety's 2009-2010 Program Guide.  This guide, which you can download in pdf format includes information about activities for children with special needs and their families, all offered at the Variety Club Camp and Developmental Center in Montgomery County this Fall.  Please check out our program guide and join us at camp!  Videos Celebrating unique beauty of all children         Books   Man refused to give up on book about stepson with Down syndrome Hurricane Katrina destroyed nearly every copy of "Best Friends, The Story of Derek," Mike Gilly's self-published book about his stepson with Down syndrome. Instead of giving up on the project, Gilly decided to expand his collection of inspirational anecdotes about Derek and his friends. The new book has been released by Bezalel Books. The Mississippi Press (Pascagoula) My Friend Isabelle available on itunes. http://itunes.apple.com/WebObjects/MZStore.woa/wa/viewSoftware?id=321206787&mt=8     Inspirational Stories Girl with Down syndrome thrives on swim team Courtney Pyburn, a 12-year-old North Carolina girl with Down syndrome, trains and competes on her community swim team with children without disabilities and is flourishing. "Other sports, there's a roster," says her coach. "... And swimming, it's much more individual in that you're competing against yourself as well as the other teams."      All That Jaz: Smokies' Jackson buoyed by the love of his sister Knoxville News Sentinel - Knoxville,TN,USA But Jaz, as she if affectionately called, was born with Down Syndrome 18 years ago and Jay devoted himself to her from day one. ...    Disabled punk band fights for right to party "Heavy Load," describe themselves as an "anarcho-garage-punk" band and are made up of five musicians, one of whom has Downs Syndrome and two who have ...   Students elect a very special prom queen by Beth Fand Incollingo/The Times It didn't seem to matter that she was the only child with Down syndrome in a class of typical children. ...    Hennefer attends game Brad Hennefer, a Cherry Hill man saluted for his accomplishments as a person with Down syndrome, appeared at the All-Star Game as a representative of the ..   Gaithersburg woman helps kids with Down syndrome find homes by Patricia M. Murret | Staff Writer Andrea Roberts of Gaithersburg is executive director of Reece's Rainbow, which places children with Down Syndrome from ...    Sarah Palin Says Son Trig Is a 'Typical Rowdy 1-Year-Old' Sarah Palin paid a visit to Long Island, NY, on Sunday and spoke about the joys of raising her 1-year-old son Trig, who was born with Down syndrome. ...    Accessibility leader found inspiration in daughter When her daughter was diagnosed with Down Syndrome, she quit her corporate job and started a company to help others. By Carol Hazard Debra Ruh was ...    19-year-old Riverside resident gleeful about role on new Fox series Lauren has Down syndrome and is a member of The Down Syndrome Association of Los Angeles, a nonprofit agency that offers programs, resources, education, ...   Max in a Million “Does he have Down's syndrome?” I repeated. By now the question was redundant because I was absolutely certain that he did have it.    Justin's varsity dream a reality Justin Weisner, who has Down Syndrome, is playing for the Newton-Conover varsity this season. On the final play of the 2008 junior varsity season, ...    A Tornado Named Eunice, Minus the Ball Gown He is 31 and has Down syndrome. A swimmer and soccer and baketball player in the Special Olympics, Egan works in the mail room of Booz Allen Hamilton in ...   'Daniel the artist' The 20-year-old, who was born with Down Syndrome, will have two of his pieces of art on display after being named a finalist in a national competition. ...    Down syndrome community gets a day in the sun from star surfer The fourth annual event is her way of thanking those who supported her during Riley's early days and brings the Down syndrome community together for a fun ...     Education National Down Syndrome Society Education Series event ‘Universal Design for Learning: Meaningful Access to the Curriculum for all Students’ with Ricki Sabia the presentation is now available to view online at www.ndss.org!  Click here to view the online presentation.  Universal Design for Learning (UDL) is an educational framework that provides flexibility in the ways information is presented, in the ways students respond or demonstrate knowledge and skills, and in the ways students are engaged. It reduces barriers in instruction, provides appropriate accommodations, supports, and challenges, and maintains high achievement expectations for all students. When properly implemented, goals, instructional materials, teaching methods and assessments are designed to be accessible to all students.  This presentation covers the rationale, principles and benefits of UDL as well as methods for implementation and implications for advocacy on the national and local levels. This is a great opportunity to share information about UDL with an educator, policymaker, friend or colleague.  If you have any questions or comments, please contact Beth Finkelstein at bfinkelstein@ndss.org.      Prenatal  Part I: Diagnosis: Down Syndrome By AMY NEFF ROTH Genetic testing can tell pregnant women whether their baby has Down syndrome. It doesn't tell them what to do about it. ...   Project leads to heartfelt questions This amazing project has a simple goal: to reach out to couples who have just learned that the baby they are expecting may have Down syndrome. ...   Consensus Building Across National Organizations Around Prenatal Screening and Diagnosis as Related to Down Syndrome The National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) are pleased to share the results of an historic first meeting which brought representatives of five organizations (NDSC, NDSS, the American College of Obstetricians and Gynecologists, the American College of Medical Genetics and the National Society of Genetic Counselors) together to discuss prenatal screening and diagnosis as related to Down syndrome.  In recent decades advances in medicine and genetics have enabled more women to receive a prenatal diagnosis of Down syndrome.  In 2007, Practice Bulletins 77 and 88 issued by the American College of Obstetricians and Gynecologists recommended that physicians offer prenatal testing to all pregnant women. These developments, which have heightened anxiety within the Down syndrome advocacy community about prenatal screening and diagnosis, led the University of South Carolina's Genetic Counseling Program and Center for Disability Resources to host a meeting of these medical and advocacy organizations.   The two-day roundtable discussion resulted in a consensus document which explores perceptions and misperceptions about prenatal diagnosis and screening. The consensus statement, "Toward Concurrence: Understanding Prenatal Screening and Diagnosis of Down Syndrome from the Health Professional and Advocacy Community Perspectives", also establishes a foundation for future multi-organizational collaboration such as the review of information provided parents about prenatal screening and diagnosis, practice guidelines and research to define models of best practice.  The consensus document can be read on our website at:   Consensus Document   Prenatal testing for Down syndrome raises ethical concerns At least one biotech company purportedly is on the verge of offering a way to detect the chromosome abnormality associated with Down syndrome, trisomy 21, ...   Research  Study shows prevalence of refractive error among children with ... Children with Down syndrome had significantly more refractive error and oblique astigmatism than control subjects in a study. "The study is the first to ...   U. researchers develop genetic map for Down syndrome  Down syndrome individuals typically face a host of problems such as intellectual disabilities, heart defects and Alzheimer's disease. ...    Research sheds light on cause of Down syndrome and other genetic ... ScienceBlog.com -It is the underlying cause of many genetic diseases -- such as Down syndrome, Edwards syndrome, and Patau syndrome -- as well as many cases of pregnancy ...   Scientists make Down's syndrome breakthrough Down's syndrome occurs when some or all of an extra copy of chromosome 21 is present. Scientists are still unclear as to why the additional genes disrupt ... Movies Mr. Blue Sky- Back in August last year Ms. Ann Curry of NBC Dateline did a story that detailed the deplorable living conditions for people born with certain disabilities, including Down syndrome and who were consequently Institutionalized in Serbia. I will give a brief background to the events that have taken place since that show aired. I am the writer and Executive Producer of a film, Mr. Blue Sky,that reaches deep on the subjects of equality and acceptance for all individuals born with any physical or mental disability (Specifically Down syndrome). Mr. Blue Sky is a powerful film that educates society on the abilities and rights of those individuals born with disabilities and also attempts to erase prejudices. Please view our website for a trailer, news DVD etc... www.mrblueskymovie.com.   Mr. Blue Sky is a film that must be seen by any family living with Down syndrome. Mr. Blue Sky was viewed by Ms. Dragana Ciric Milovanovic, Director to the Serbia office, at the Mental Disability Rights International (www.mdri.org) in Washington, D.C. and to make story short, Mr Ms. Milovanovic contacted Mr. Eric Mathews, Development Associate at MDRI, who in turn contacted me to send them a copy of Mr. Blue Sky. On June 10, 2009, Mr. Eric Rosenthal, Founder and Executive Director of MDRI, traveled to Serbia to present Mr. Blue Sky to the officials in that Country as first attempts to educate and change perceptions and in doing so change their policies toward individuals born with any developmental disabilities, including Down syndrome! We are hoping Mr. Blue Sky will serve as a means to further educate society about those born with Down syndrome and help change perceptions, and will continue to improve living conditions for those born with Down syndrome, not only in Serbia, but in other parts of this country and the world! Thank you kindly for all of your valuable time as it is much appreciated. Products  Beautiful Faces 2010 Calendar-Once again, nationally known photographer Kendra Dew, has captured the beauty of children with Down syndrome in the 2010 Beautiful Faces Calendar. The pictures featured in the calendar are true pieces of art as the photographs radiate the individual beauty of each child. Band of Angels is now accepting pre-orders for the 2010 Beautiful Faces calendar!  This year, Band of Angels is ordering a limited amount of calendars based on pre-orders. » Click here to pre-order Beautiful Faces 2010! Stock up on your calendars TODAY to guarantee you will receive this beautiful and inspirational keepsake!  Remember that the Beautiful Faces Calendar is a perfect gift for teachers, therapists, friends and family members in your child’s life.  Pre-orders will ship September 15th.  Legislation    From NDSC NDSC Continues Efforts to Address Waiting List Crisis Susan Goodman, NDSC Director of Governmental Affairs recently met with the Director of Medicaid and State Operations at the Center for Medicare and Medicaid Services (CMS) to discuss ways to meet the needs of the hundreds of thousands of adults on waiting lists for Medicaid services across the country.  Representatives of the aging and mental health communities also participated in the meeting. Medicaid is virtually the only funding stream available to pay for supports and services to enable adults with disabilities to live and work in the community.  Medicaid also pays for many services (e.g. - respite care, equipment, therapies) available for children that are not provided through the educational system.   A recent NDSC survey on the receipt of adult services revealed that less than one-fourth of those responding receive support services from Medicaid. One of NDSC's top priorities is inclusion of long-term supports and services in current health care reform efforts.  Issues that impact individuals with Down syndrome, including education and employment laws, as well as the lack of adult services, will be addressed this week in a session led by Susan Goodman at the NDSC National Convention in Sacramento.  For those not attending the conference, this session will be included on an audio CD-ROM of all workshops, and will be available for purchase after the convention.    Congressional Briefing on Savings Account Bill (H.R. 1205)   On July 21, 2009, a briefing on the Achieving a Better Life Experience (ABLE) Act was held for Congressional staff members.  The meeting was sponsored by NDSC, NDSS, and other national disability organizations.  This bill would enable parents and others to have savings accounts in their child's name for specific disability related expenses without the risk of disqualification from receiving federal benefits needed to live and work in the community.  ABLE, which is strongly supported by NDSC and many other national disability organizations, was initiated by a group of parents from the Down Syndrome Association of North Virginia. This legislation will offer families an additional option, among estate planning tools, to use in providing for their child's future.   The purpose of the briefing was to enlist additional co-sponsors for the bill in the House of Representatives.  The bill and a list of co-sponsors can be found at http://thomas.loc.gov. Under bill number, key in H.R. 1205, House of Representatives. If your Representative is not on the list of co-sponsors, please contact him or her and ask them to co-sponsor this bill which will assist families in providing resources for their children.  For more information on this bill and its status in the Senate,  please contact susan@ndsccenter.org. Federal Bill Encourages Use of School-Wide Positive Behavior Supports NDSC is part of the School Success for All coalition of national disability organizations who have actively advocated for a bill that was recently introduced on May 21st by Representative Phil Hare (D-IL) called  the Positive Behavior for Safe and Effective Schools Act (H.R. 2597). The legislation is designed to encourage the use of school-wide positive behavior support (PBS) for all students. School-wide PBS reinforces desired behavior and eliminates inadvertent reinforcement of problem behavior.    For more information on this bill, go to http://thomas.loc.gov and key in the bill number (H.R. 2597). From NDSS Policy Center Update-On July 21, 2009 a briefing was held on Capitol Hill for staff of Members of the House of Representatives regarding the ABLE Act--Achieving a Better Life Experience Act--((S 493/HR 1205) which would allow individuals with disabilities and their parents to create a tax-advantaged savings account which would not jeopardize public benefits. The moderator of the briefing was Stephen Beck, a parent volunteer from the Down Syndrome Association of Northern Virginia who has worked closely with the staff of NDSS and NDSC.  The briefing consisted of a series of presentations from individuals such Rick Hodges who is the parent of a child with Down syndrome and Alexander Reid who has a brother with Ds.  Both Congressman Ander Crenshaw, the bill's lead sponsor, and Congressman Cathy McMorris Rodgers, co-chair of the Congressional Down syndrome Caucus and important supporter of the legislation, spoke. Members of the NDSS Science Advisory and the NDSS Clinical Care Advisory and other professionals have provided expertise to the Policy Center staff regarding a proposed piece of legislation which will create centers of excellence to conduct basic, clinical and translational research.  This piece of legislation is now being finalized by Member of the house of Representatives and is expected to be introduced soon.     NDSC Represented at White House Meeting On May 26, NDSC Governmental Affairs Director, Susan Goodman, met with White House officials to discuss the use of restraint, seclusion and aversive interventions on students with disabilities.  This meeting followed a hearing on this subject several days earlier by the House Committee on Education and Labor.    Also in attendance were other members of APRAIS, a coalition of national organizations of which NDSC is a founding member.  Among its goals, APRAIS (Alliance for the Prevention of Restraint, Aversive Interventions and Seclusion) seeks the elimination of the use of seclusion, aversive interventions, and restraint to respond to or control the behavior of children and youth.  The alliance was founded in 2004.   Representatives of the Department of Education were also at the meeting, as were congressional staff members and representatives from professional education groups such as school boards associations, state special education directors and, teachers' and administrators' organizations.   APRAIS representatives suggested several actions that could be accomplished by Executive Order of the President. APRAIS will continue the advocacy efforts with the White House, Department of Education and Congress.   NDSC Statement on Healthcare Reform Recently, we have received a number of comments and questions about the impact of the health care reform bills that have been drafted by Congress.  Generally, these concerns come from special interest groups or individuals with diverse and contradictory opinions about what a final health care plan should entail.    However, currently agreement has not been reached in the House of Representatives or the U.S. Senate on one bill on which there will be a vote.  The President and the Administration do not have a health care bill - that is the purview of Congress. We are closely following these bills in this very fluid situation to determine the impact of various provisions on individuals with Down syndrome and other intellectual disabilities.  However, the provisions are still in flux and we will not be commenting on them until we have a clearer sense of direction from the two bodies of Congress. Stay up to date on their website:  http://www.ndsccenter.org   Lawyers for children with Down syndrome sue state By AP SEATTLE (AP) — Lawyers for three children with Down syndrome are suing the state of Washington to try to prevent a cut in the hours of in-home care ...     Supreme Court Rules in Parents Favor on Case on Private School Tuition Reimbursement  On June 22, 2009 the Supreme Court, in Forest Grove v. T.A., the Court ruled that Forest Grove v. T.A.  parents who unilaterally enroll their disabled child in a private school are entitled to tuition reimbursement if the child never received special education from the district. T.A.'s parents removed him from school and placed him in a residential treatment program in 2003. After T.A. completed treatment program, his parents enrolled him in a private school and requested from the school district, among other things, an extensive evaluation.  Although the school recognized T.A.'s learning difficulties in 2003, they stated that he was not entitled to receive services under the Individuals with Disabilities Education Act (IDEA) because his disabilities did not adversely affect his educational performance.  The Supreme Court ruled that even though their son had never received special education services from the school district they were entitled to tuition reimbursement for the private educational program in which they placed their son.   The school district attempted to avoid paying the parents on the grounds that a 1997 amendment to the Individuals with Disabilities Education Act (IDEA) only allows parents to be reimbursed if the child had already been receiving special education services from the district before making the unilateral placement.  The Court held that the 1997 amendments to the IDEA should not be read to limit earlier Supreme Court cases that allowed reimbursement when a school district did not provide an appropriate education for a student.    The Court stated that: "It would be particularly strange for the Act to provide a remedy, as all agree it does, when a school district offers a child inadequate special-education services but to leave parents without relief in the more egregious situation in which the school district denies a child access to such services altogether."   The court also stated that reimbursement will only occur if the school district does not offer the student an appropriate program and the program selected by the parents is found to be appropriate.  Second, even after the parents have met those hurdles, they could still have their reimbursement reduced or eliminated if it is found that they acted unreasonably.    If you would like to read the entire case, go to http://www.wrightslaw.com/law/caselaw/08/9th.forest.grove.ta.htm.