News

DSA of Delaware is in search of a Program Director.

ACTION REQUIRED: We need your help! We need you to call your two Senators and Representative (click here and input your zip code for your Members: http://capwiz.com/ndss/home/) and ask them to be an original cosponsor of the ABLE Act of 2011. We’ve included a call script and all the information you need to make your phone calls. **Note: Double check to see if your two Senators and Representative signed onto the bill in the last Congress (see below)

Register now for Delaware's premier conference for persons with disabilities and those who support them.

December 16 is the deadline to apply for the 2012 Partners in Policymaking program. The Developmental Disabilites Council is currently recruiting applicants from all three counties.

December 9th, 10th, or 11th Variety is pleased to invite children with disabilities and their families to "A Very Furry Christmas" at Sesame Place! Join us for a family-friendly celebration with everyone’s favorite Sesame Place characters. The park will deck the halls with 300+ Christmas trees, including a giant tree with choreographed lights and music and special Sesame Street trimmings. The Sesame Street Neighborhood will be outlined with white lights and brought to life with an illuminated Christmas parade each evening.

SENS. SHERROD BROWN, SUSAN COLLINS INTRODUCE BIPARTISAN BILLS TO ENHANCE DOWN SYNDROME RESEARCH Email Your Members of Congress and Ask them to Cosponsor the 21 Act Bills – it only takes two minutes

They say a picture is worth a thousand words. But it took Jack Smith only 400 words to win $1,000 and broader recognition for Practice Without Pressure. Jack works for Merck & Co. outside Philadelphia. As part of its Partnership for Giving program, Merck runs an annual essay contest, "Touched by an Agency" that gives employees an opportunity to recognize non-profits that have made a difference in their lives. Jack's essay was one of 18 singled out this year for corporate support.

Research to Accelerate Treatments to Improve Cognition for Individuals with Down syndrome Palo Alto, CA, October, 12, 2011 - The Down Syndrome Research and Treatment Foundation (DSRTF), announced today that it will fund leading researchers from major research centers around the country to help accelerate the delivery of treatments to improve cognition, including learning, memory and speech for individuals with Down syndrome.

This article was written by Rita Landgraf, secretary of Delaware's Department of Health and Social Services and a former president of AARP Delaware. Rita Landgraf is presenting at the DSA of DE Adult Support Group Meeting on October 12th, from 12:00 to 1:00 PM at the Special Olympics office. Visit the Events page for details on this DSA of DE event.

This study asks parents who have children with Down syndrome how they feel about their lives so that such information could be shared with expectant couples during prenatal counseling sessions. This study was conducted Brian G. Skotko, Susan P. Levine and Richard Goldstein at the Childrens Hospital of Boston.

Families report happy lives in first survey of impact of genetic condition Among 2,044 parents or guardians surveyed, 79 percent reported their outlook on life was more positive because of their child with Down syndrome. This is particularly relevant as a new blood test to determine Down syndrome early in pregnancyis expected to be available within months.

BACK TO SCHOOL Resources you may find helpful this fall as your child heads back to school.

Researchers in the Department of Psychology at the University of Arizona have teamed together to establish a world-renowned research group devoted to understanding the cognitive difficulties that individuals with Down syndrome face and the development of new therapies to ameliorate those difficulties. The Down Syndrome Research Group (DSRG) is led by Regents Professor Lynn Nadel and Jamie Edgin and have been recipients of DSRTF Innovation Research Grants since 2008.

If you love the great outdoors and want to teach your children and teens about the same things you love; you need to go on an adventure trip with United Special Sportsman Alliance (USSA). This incredible organization has been taking kids with disabilities, critically ill children and wounded veterans on special trips all over the country for 10 years. With the exception of travel expenses, most trips are offered completely free of charge for the child/teen and their family. All food, drinks and lodging is covered by USSA.

Wed., August 17, 2011 at 10:00am - noon at the Can Do Playground (Location: 4361 Weldin Road, Wilmington, DE 19803) Families, friends, children and individuals with disabilities are invited to take part and celebrate this day of significance as Governor Jack Markell formally signs HB 91 and HB 214 into law.

"What about Work? a presentation on Work-ing & social security disability programs."

His big bat has made the St. Louis Cardinals' slugger one of the top 10 players in baseball history. But to people with Down syndrome and the poor of his native Dominican Republic that he helps, he means a lot more than home runs and RBI. B

The survey looks at whether parents are treated as equal partners in their children's education. Topics include whether the rights of students with disabilities and their parents protected throughout the special education process, including IEP meetings and IEP issues, eligibility (Child Find), Due Process hearings (impartial hearings), and other education issues.

The U.S. Department of the Treasury now requires all federal benefit and nontax payments to be paid electronically. People applying for Social Security, Veterans benefits or other federal benefits on or after May 1, 2011, will receive their payments electronically starting with their first payment. To learn more, view the full article.

Are You A Caregiver? Need A Rest? Saturday Respite Services At Easter Seals Can Help!

The Down syndrome population is one of the most under diagnosed populations for childhood apraxia of speech. Studies have confirmed that at least 15% of children with Down syndrome have apraxia. It is so very important that children with Down syndrome get the appropriate help they need to treat this motor speech disorder. A parent and professional workshop, The Speech-EZ® Apraxia Program: From Diagnosis to Treatment to Literacy Development, will be held April 9th, 2011 at The Villanova University.

As part of their committment to helping caregivers and parents of special-needs children take control of their lives, Sisters/Mothers/Authors/Paper Collectors, Gina Gallagher and Patricia Konjoian, are pleased to announce their new show: The Imperfection Connection, now premiering on Family Network TV.

Inclusion in general education classes can be beneficial both to children with Down syndrome and their typical peers. One story of inclusion at work is in a third grade classroom in California.

The first two steps in the See and Learn Speech program, will be available in UK and US English editions in June 2011. The See and Learn Speech program is designed to help children with Down syndrome improve speech discrimination skills and develop clearer speech production.

Toys "R" Us is looking for kids to model in our Toys"R"Us toy guide for differently-abled kids.

This one-day summit on April 14, 2011, will bring together caregivers and representatives from state government, nonprofit organizations, legislatures and service providers representing all ages and disabilities to: provide information about respite care programs and options in Delaware, and increase awareness of family support resources.

Junior Partners in Policymaking (JPIP) is sponsored by the Delaware Developmental Disabilities Council, Delaware Department of Education, and the Administration on Developmental Disabilities. Training is provided by the Center for Disabilities Studies at the University of Delaware. Junior Partners in Policymaking is held every other year for young adults aged 15 to 22. The next program is scheduled for June 19-24, 2011.

The National Institutes of Health (NIH) is the largest government funding organization for research. The NIH has issued a Request for Information regarding a national Down syndrome registry, research database and biobank by APRIL 1st, 2011. They are expecting responses from the Down syndrome community and from anyone who is interested in supporting people with Down syndrome. Every e-mail counts!

Saturday, June 4th 2011, 6 PM Original artwork will be sold at a silent auction directly benefitting The Boys and Girls Christian Home in India and to create an art scholarship for the children of the Down Syndrome Association of Delaware. Art contributed includes work by students of Studio 4:10, Special Olympics "Team Grizzly Bear", and members of the Down Syndrome Association of Delaware.

Timely Tax Tips for Taxpayers with Disabilities. Taxpayers with disabilities and parents of children with disabilities may qualify for a number of IRS tax credits and benefits.

The DSA of Delaware will not be holding an Adult Support Group Meeting in March. We will resume our monthly meetings in April. In lieu of the March meeting, we recommend attending the following DDDS Forum. It is expected to be an informative session!

Delaware Destroyer Swim Practices will begin SUNDAY MARCH 20th, at the Delaware Swim Club, New Castle Ave. Practices will be held every SUNDAY from 3pm to 5pm. The athletes will compete in Summer Games which will be held the weekend of June 10-11th. Please note that athletes will compete both FRIDAY AND SATURDAY, in 2 or 3 events.

The DSA of Delaware joined the national effort to end the use of "the R word." Special thanks to Amy Kosmalski for coordinating our local representation. Several members of our organization spoke to students in New Castle County about "The R Word: Spread the Word to End the Word" campaign. DSA of Delaware board member, MaryJo Gilligan and her daughter Amanda spoke to the students of Middletown High School. Traci LaGanke and her son Nick spoke to the students of Newark High while Amy and her daughter Kayla captured the audience at St. Marks.

MAKE YOUR VOICES HEARD! The Administration on Developmental Disabilities (ADD), a division of the U.S. Department of Health and Human Services, recently held listening sessions across the country in order to listen to those with developmental disabilities and their families and their vision for the future. They have also asked that self-advocates, family members, allies, and professionals across the country send them comments in order to insure representation to all. In response to ADD’s actions the Voice of the Retarded (VOR) a group of advocates in favor of large institutional programs sent out a request to their membership asking them to submit comments telling ADD to preserve these programs. To date, most of the responses to ADD (which can be viewed on their website) have come from those supporting the institutions. Please submit a comment stating that the integrated community living is the policy that the federal government should support.

We are looking for parents of children with Down syndrome to complete a survey of their children's language abilities and the speech-language services they have received. The web-based survey is available online and should take no longer than 30 minutes to complete.

Saturday, April 23, 2011, 10 AM to 4 PM On-line Registration for this event is now open.

Vaulting Open House Saturday, February 26th, 1-3 PM

At each event, the State Parks personnel will be highlighting inclusive recreational opportunities for people with disabilities in all the State Parks throughout Delaware.

Easter Seals Delaware & Maryland's Eastern Shore Are You A Caregiver In Need Of Respite Services? Easter Seals Has Grant Money!

IN THIS ISSUE Delaware Lifespan Respite 2011 Summit Financial Assistance Lifespan Respite Care Program Reauthorization Input Requested Information and Referral New Staff Member Calendar Resources

Nurses ’n Kids…Dedicated to caring for children with special needs. In this issue: Tracheostomies, ventilators, feeding tubes & so much more… How do children qualify for Nurses ’n Kids programs? Is a "tube" required to qualify for care? Do you know a parent/caregiver that needs Respite? Pet Therapy brings happy smiles! Milford Open House was a success!

This week, Etsy's Chief Operating Officer, Adam Freed posted a letter regarding recent policy changes. Etsy policies have prohibited disparaging or promoting hate against people based on race or religion for quite a long time. But they never covered gender, people with disabilities, or sexual orientation. They are changing that — and a few other policies — effective now.

January 30, 2011, 1 - 3 PM Beat the winter blues!! Come enjoy an afternoon of dancing and winter fun in the beautiful Rockwood Carriage House. School of Rock will be attending. There will be a quiet room for those who are sensitive to noise. Any questions, please contact Heidi.Mizell@delautism.org or 302-224-6020.

The Parent Information Center of Delaware is running a series of workshops geared to improve Parents' legislative advocacy skills. The first session will be held on January 12th, 2011 from 6 - 8 PM. Reserve your seat now!

Please join us for the next Delawareans with Special Health Care Needs: Medicaid Managed Care Panel teleconference call on January 11, 2011, at 11am. If you have any issues, problems, or concerns with your child's Medicaid Managed Care Plan (Delaware Physicians Care, Unison Health, Diamond State Partners) this is your opportunity to have them addressed.

SAVE THE DATE: Friday, March 25, 2011 Mark your calendar because you will not want to miss this health care transition conference! The Keynote Talk " Health Care Transition: Youth, Family and Provider Perspective" will be dilivered by John Reiss, PHD. Other topics include: The Nuts and Bolts of Successful Transition; Transition Support for Youth with Chronic Disease, Physical and/or Cognitive Disability; Panel Discussion of Personal Transition Experiences; and, Workshops for Clinicians and Young Adults with Special Health Care Needs and their Caregivers.

A new study published by the Centers for Disease Control and Prevention (CDC) and the National Birth Defects Prevention Network has found that one in every 691 babies is born with Down syndrome. This is an increase from the previously reported statistic of 1 in every 733.

Len Leshin, M.D., F.A.A.P. is a pediatrician and the father of Avi, 16 years old, and Nathan, 18 years old. Avi has Down Syndrome and has inspired him to write a number of essays about children with DS for other parents. Dr. Leshin has compiled these essays and other information for parents and professionals on a single website for easy access. Check out the news and information posted on this website www.ds-health.com.

The Kennedy Krieger Institute is currently recruiting individuals with Down syndrome for two research studies. Dr. Capone is recruiting Boys and Girls ages 10-17 with Down syndrome to complete a 20 week clinical trial on the drug Rivastigmine, which has been shown to help with cognition and memory in people with Alzheimer’s disease. Dr. Kaufmann is recruiting boys ages 3-12 with Down syndrome, to learn about the behavioral and cognitive features of children with Down syndrome, and to look specifically at the diagnosis of autism spectrum disorders within Down syndrome.

A special thank you to Nancy Colley, RN, APN, MS for her generous donation to the DSA of Delaware. The funding has provided new books to benefit siblings and families of individuals with Down syndrome.

There are a number of differences between high school and college that you should be aware of before starting college. The most important thing to know is that in college you are expected to speak for yourself.

If you live in Philadelphia or the surrounding area, you will not want to miss this “One of a Kind Event” brought to you by the Karen Gaffney Foundation and Golf For Life! Come to Citizens Bank Park, home of the Word Class Baseball Team, the Philadelphia Phillies, to hear from another World Class Team - Self Advocates Brad Hennefer, Karen Gaffney, Sujeet Desai and David Egan on Saturday, February 26, 2011.

Dr. Lou Bartoshesky, MD, MPH - recognized by the U.S. Health Resources and Services Administration, Maternal and Child Health Bureau for his excellence and outstanding contributions in improving systems of care for children and youth with special health care needs and their families.

You can now register online for Variety's 2010 Sesame Place Halloween Spooktacular, to be held on Saturday, November 6th from 10:00 AM until 4:00 PM.

News from Down Syndrome Education International Speaking at an international scientific conference in Rome, researchers from Down Syndrome Education International and the University of York today reported positive initial results from a landmark study of a targeted language and reading programme designed for children with Down syndrome.

Join us for the the October NDSS webinar on October 20th at 12pm ET. Expert Leslie Walker-Hirsch will explore The Facts of Life and More: Sexuality and Intimacy Across the Lifespan for People with Down Syndrome.

Ike Ditzenberger is like a lot of other 17-year-old American football players. He dreams of playing college football. He attends daily practices. Most of the time he toils away in offensive drills. Then, on rare occasions, Ditzenberger runs into the limelight with aplomb. The description could fit thousands of American teenagers, except for one crucial detail: Ike Ditzenberger has Down Syndrome.

Special Olympics Delaware will recognize the Nolan family during its annual Night of Heroes on Wednesday, Oct. 6 at Clayton Hall on the University of Delaware campus.

NDSS Monthly Webinar Features Fathers Members of D.A.D.S. and DSAIA will be presenting on the National Down Syndrome Society's Monthly Affiliate Webinar on Policy Education for Fathers, scheduled for Tuesday, November 23rd at 12:00 pm Eastern.

Special Art for Special Kids 9 Tuesdays, 10/19/2010-12/14/2010 6:00PM-6:55PM Member: $107 Non-member: $127 Materials: Included

The 2011 NDSC Convention will take place August 5th through 7th at the JW Marriott San Antonio Hill Country Resort & Spa.

U.S. Broadcast Premiere: Thursday, October 14, HBO–8pm ET / 7pm CT The documentary will air primetime across the U.S.

Balanced and accurate informational booklet will soon be available to medical professionals and families throughout the United States.

On June 17, Governor Markell signed legislation that uninamously passed both House and Senate chambers expanding the definition of FAPE.

David Tolleson, NDSC Executive Director and Susan Goodman, Director of Governmental Affairs attended a reception honoring Rep. Patrick Kennedy (D-RI.) for his work as a co-chair of the Congressional Down Syndrome Caucus. Representative Kennedy is retiring from Congress after this term. The reception was sponsored by the Global Down Syndrome Foundation (GDSF) which was launched in 2009 by the Anna and John J. Sie Foundation.

National Down Syndrome Society's My Great Story section features Dennis Diehl's brother-in-law, David.

Down Syndrome Association of Delaware and Easter Seals Delaware proudly host Gross Motor Development in Children with Down Syndrome present by Patricia Winders, PT Friday, September 17, 2010 8:00am — 4:00pm

By Liz Szabo, USA TODAY In 1950, when Marybeth Solinski was born, a diagnosis of Down syndrome was practically a death sentence. Children with the condition often died before their 10th birthday. Yet Solinski, at 59, has outlived her parents. She has even joined AARP. Her longevity illustrates the dramatic progress for people with Down syndrome. Thanks to better medical care, the average life expectancy for a child with Down syndrome is now 60 years, according to the National Down Syndrome Society, which estimates that about 400,000 people are living with the condition in the USA.

New Center Provides Comprehensive Care for People with Special Needs

Caitlin Coughlan and Michael Pasquale represented SODE and Best Buddies Delaware, respectively, at this year’s Capitol Hill Day, and for them, the venture to the nation’s Capitol included an unexpected stop.

The way Patricia Moody approaches life is proof that her title of "The Happy Advocate" is absolutely accurate. Patricia very happily dedicates her time and energies as an advocate for others with Down's Syndrome.

Here's one reason Micah Fialka-Feldman wants to live on his college campus, instead of remaining at home with his parents: To get to college in the morning, he takes the public bus near his home, then transfers to a second bus. The trip takes about two hours. There is more to this story and Micah's desire to live on campus.

Trisomy 21 Translational Research Parity Act Introduced in Congress– Importance for Down Syndrome Biomedical Research and New Opportunities On September 25, 2009, the Trisomy 21 Translational Research Parity Act of 2009, or the “21 Act” (H.R. 3656) was introduced in the US House of Representatives by Representatives Cathy McMorris Rodgers (R-WA), Patrick Kennedy (D-RI), and Pete Sessions (R-TX). A companion bill (S. 1762) was introduced on October 7, 2009 in the US Senate by Senators Sam Brownback (R-KS) and Sherrod Brown (D-OH). Read more about this act and how you can help.

Spartan Sparkles Cheerleaders Inspire Young Girls - Video - Oprah.com

Senator Barbara A. Mikulski (D-Md.) has introduced "Rosa's Law," a bill that will eliminate the terms "mental retardation" and "mentally retarded" from the federal law books. Senator Michael Enzi (R-Wyo.), U.S.Ranking Member of the Health, Education, Labor and Pensions Committee, is the Republican sponsor of the bill. Rosa is a young girl with Down syndrome living in Maryland.

New guidelines for physicians: How to give a diagnosis of Down syndrome by Children's Hospital Boston staff on September 30, 2009 by Brian Skotko, MD, MPP

DSA of DE is organizing a new community based team based in the bear/newark/middetown area targeting younger athletes. The team will be call the Delaware Destroyers. The Destroyers first team event will be Bowling Dec 12. The team will also compete in baskeball skills in winter, and swimming and track in the summer. The team is open to any individual who qualifies for Special Olympics Delaware. For more information or to joing contact info@dsaofdelaware.org

New article examines the influence of current tests on birth rates, assesses forthcoming tests, and calls for the establishment of medical and educational policies

DSA of DE scholarship are available for recreational activities, conventions and seminars and other similar non-medical needs for individuals with DS and their parents. Completion of a Scholarship Application is required.

Essay: Mothers share experiences, feelings about children with Down syndrome By BEVERLY BECKHAM The Boston Globe