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National State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities

Wednesday, August 25th, 2010

The National Down Syndrome Society (NDSS) is pleased to announce that registration is now open for the 2010 National State of the Art Conference on Postsecondary Education and Individuals with Intellectual Disabilities sponsored by NDSS and the George Mason University . The conference will be held on October 28 and 29 at George Mason University ’s new conference center in Fairfax , Virginia . The conference is being cosponsored by the Steve Riggio family, the Office of Postsecondary Education (OPE) and the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education, the American Association of Colleges for Teacher Education (AACTE), the University of Minnesota’s Institute on Community Integration, ThinkCollege, Association of University Centers on Disabilities (AUCD), and the American Association on Intellectual and Developmental Disabilities. The conference is dedicated to the memory of Melissa Riggio.

 This conference will provide an opportunity for students, parents, researchers, colleges and universities and practitioners to meet with top experts in the field and hear about exciting postsecondary initiatives across the country. The conference registration is expected to fill up fast. If you are interested in attending we encourage you to register immediately. 

Click here to register and for more information.

Research Study on Boys with Down Syndrome

Monday, August 23rd, 2010

The Kennedy Krieger Institute is sponsoring a research study on boys with Down syndrome. Study details:

Who: Boys, ages 3-12, with Down syndrome to participate in a behavioral and genetic research study.

What: We will be testing learning skills, behavior, and measuring physical and motor development. We will also obtain a small blood sample for future genetic studies. We would like parents to complete cognitive testing as well, to help us understand more about their child. Participants will receive free lunch on each day of testing. In addition, a detailed report based on your child’s performance will be sent to you 6-8 weeks after your visit. There is no cost associated with joining this study. Reimbursement for travel will be provided.

Where: At the Kennedy Krieger Institute, Center for Genetic Disorders of Cognition & Behavior (707 North Broadway, Baltimore, MD 21205.)

When: The study takes place over the course of two consecutive days, each lasting about 5 hours. We will try our best to accommodate your schedule!

Why: 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.

How: Join today! If you are interested in participating, please contact Marie Andachter, Study Coordinator at 443-923-7716 or andachter@kennedykrieger.org.

NDSS E-Newsletter, August 2010

Thursday, July 29th, 2010

Click here to view the NDSS August 2020 e-newsletter: http://ndss.org/images/stories/NDSSresources/pdfs/august_e-news.pdf

Game Day Highlights Valor Bowl 2010

Monday, June 14th, 2010

Special thanks to Wendy Badman and photo by Wendy, LLC.

Photo by Wendy is featured on facebook, please tell you friends, family and students to “like” us!! Thanks!!

Here is the direct link : http://companies.to/photobywendy/

NDSS May e-newsletter

Thursday, May 6th, 2010

Click here to view the NDSS May e-newsletter

http://ndss.org/images/stories/NDSSresources/may%20enews%20word97-%20final.pdf

Growing Up Research Study at CHOP

Wednesday, April 21st, 2010

Children with Down syndrome ages birth to 20 years are invited to participate in a research study at CHOP to develop new growth charts for children and young adults with Down syndrome. The current Down syndrome growth charts are outdated and may not reflect current patterns of growth in children and young adults with Down syndrome. CHOP wants to learn as much as possible in order to improve the medical care of children and young adults with Down syndrome.

For more information, visit:
http://www.chop.edu/service/trisomy-21/our-research.html

INCLUSION TODAY — PRESENTATION

Thursday, February 4th, 2010

INCLUSION TODAY – HOW TO MAKE IT WORK FOR YOUR CHILD?   with CCIU INCLUSION SPECIALISTS: PATTY GIESCHEN AND CHARLIE ROBEY

February 11, 2010   10:00am – 12:00pm

INCLUSION TODAY – How to make it work for your child!  A brief snapshot of how special education has arrived at the inclusive practices of today, followed by a discussion of ways to collaboratively increase the overall “culture of inclusion” in your child’s school.  Insights on working as a collaborative IEP team member, identifying supplementary aids and services,  and an overview of the appropriate use of the SAS Toolkit process will be provided.

There will be time for questions.

Location:

Chester County Intermediate Unit
(455 Boot Road, Downingtown, Pa 19335)

Registration:

Connie Mohn – 610-696-8090 x220, cmohn@arcofchestercounty.org
Pre-registration preferred, but not necessary.

LTF Business meeting from 10:00 with the Inclusion presentation beginning at 10:30a.

Sponsored by:  Chester County Right to Education Task Force, CCIU, and The Arc of CC.

Intellectually Disabled Student Wins Dorm Suit

Tuesday, January 5th, 2010

CCDSIG_Micahby Joseph Shapiro

December 29, 2009 

 Micah Fialka-Feldman attends Oakland University, one of many schools and community colleges that are setting up programs for students with Down syndrome.
Courtesy Micah Fialka-FeldmanMicah Fialka-Feldman attends Oakland University, one of many schools and community colleges that are setting up programs for students with Down 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.

Fialka-Feldman, 24, attends classes at Oakland University, as part of a program for students like him, with intellectual disabilities. The campus is about 20 miles from where he lives with his parents in Huntington Woods, Mich.

A few years ago, Fialka-Feldman helped his younger sister Emma move into her dorm room when she went off to college at Mount Holyoke. It gave him another reason to want to live on campus: He thought he was missing out on an important part of college life. But his school said because he was in a special program and not a full-time student, he couldn’t live on campus.

So Micah sued.

Early yesterday morning, his cell phone rang. It was his lawyer with the news: He had won. “I’m happy and I’m proud,” say Fialka-Feldman.

A U.S. District Court judge in Michigan ruled that Oakland University had discriminated against Fialka-Feldman. The new school term starts Tuesday. And Fialka-Feldman says he hopes to move into his new dorm room by Sunday. He’s got his computer, his radio and his bedding ready. He’s got the posters he wants to put on the wall, including ones with quotes from civil rights leaders. One says: “A community that excludes one member is not a community at all.”

To live on campus, he says, “means I would have the full college life and … I could go to Friday night things in the dorm, like Friday night activities like a film night or like a basketball game and going out with friends.”

His father, Rich Feldman, adds: “The judge’s decision is a wonderful victory for Micah’s dream to live in the dorm and a victory for so many other students and folks with cognitive disabilities. Now it’s their right to be fully included in the college dormitory experience.”

A spokesman for the university said officials there have not had time to evaluate the decision. The school can appeal.

It’s pretty common these days for kids with intellectual disabilities like Down syndrome to go to their neighborhood schools and to be mainstreamed with all the other kids. And when these disabled students finish high school, they often want to go to college. In recent years, scores of community colleges and universities have opened special programs and invited students with intellectual disabilities to enroll. Oakland University has been a pioneer in opening up to these students. But the colleges can’t always keep up with the rising expectations of disabled students and their parents.

Fialka-Feldman takes regular classes, and students act as tutors to help him follow along in class and keep up with his homework.

He has taken classes at Oakland since 2003 and the new term will be his last on campus. “I’m taking a class on public speaking. And a class on persuasion,” he says.

He’s already been pretty good at persuasion. In the course of fighting this case, he has spoken twice to the school’s board of trustees, and he pressed his case in court. The university’s study government voted to support Fialka-Feldman’s right to live on campus, and the student body president, Kristin Dayag, was at his side at his court hearing earlier this month.

“Micah has really found his voice,” says his mother, Janice Fialka. She remembers when Micah was 2 or 3, and still didn’t speak. “I remember vividly asking the speech therapist, do you think that Micah will ever talk. And she hesitated. And that hesitation, which was probably only four seconds, felt like a lifetime,” says Fialka, a social worker who now is a speaker on disability issues. “And basically she was saying, ‘We don’t know.’ And now he’s speaking in front of all kinds of people. So this is quite a journey of surprise, and the importance of believing that every person has a gift and should be supported in their dreams.”

A generation ago, parents couldn’t dream for their kids with disabilities. Before the 1975 special education law, public schools weren’t even required to teach them — and about 1 million then didn’t get any education at all.

Even today, lots of these kids aren’t capable of going to college — and for many of them the future remains bleak.

But Paul Marchand, with the advocacy group The Arc, says parents now have higher expectations. “Parents want the best for their kids. They want their kids to get a job; they want their kids to be as independent as possible. They want society to accept them. They want their kids to be as typical as all the other kids of their age, including going to a college.”

Last year, Congress passed legislation that for the first time makes it possible for people with intellectual disabilities to get federal college loans — even if they’re not in a full-time program.

New Parents

Monday, November 9th, 2009

Please call us at (610)889-0291.  We’d love to hear from you and tell you more about the group.

Spread the Word to End the Word

Saturday, October 31st, 2009

r-word.org

Pledge Your Support

ACT NOW–pledge your support to eliminate the demeaning use of the r-word. Tell us what you think.

Make a Difference

Create new opportunities by helping Special Olympics bring the gift of sport to one more person. Even the smallest donation can make a huge difference. Donate Now.

Words Matter

The language we choose can help cultivate a culture of respect and dignity for all people. Young people around the world are creating a world of acceptance. See how.

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Best BuddiesBest Buddies International wants you to volunteer, start a chapter or become a friend. Find out how.