Welcome to this edition of the Down Syndrome Support Newsletter!

HAPPY NEW YEAR! I hope all is well with you and your family this busy holiday season! At this time of year, I realize how blessed I am to have my son Brandon in my life. I also realize how blessed I was to not have the option of terminating my pregnancy (we didn't find out until he was born). As many of you have seen, there have been many articles written about how advances in science now make it easier to tell sooner if your child is carring the extra chromosome. With this new information many believe that even more will terminate their pregnancies. One statement was it could make Down syndrome nonexistence. Some see it as a disappearing disease, I view it as many children who will not touch us. Much like many of you, I could not picture my life without Brandon part of it, and it's unfortunate that many will not experience this life because they didn't understand that having Down syndrome does not mean having no life. As parents, I believe our job is to educate the world on what it means to have Down syndrome and let everyone know that there is a place in this world for them. We have a great January meeting lined up and an outing to a Bulls game is being planned for late March. Come have a family fun day and support Down syndrome awareness at the same time!! Jennifer "AKA, Brandon & Ella's mom

The ARC is hosting a workshop on special needs trusts and
plannning.
Date: 1/6/2006
Time: 9:30:00 AM
Theresa Varnet, M.S.W., J.D. will address the unique needs that families have in planning for the financial and legal future of their relative with a developmental disability. Check under View Details/Related Files for a full brochure on this seminar.

Glenkirk
3404 Commercial Ave.
Northbrook, IL 60062
United States
For more information contact Janet Donahue
708-206-1930

• Parents, Families and Consumers
Member Price: $22.50
Non-Member Price: $25.00
• Professionals
Member Price: $40.50
Non-Member Price: $45.00

http://www.thearcofil.org/events/index.asp

SPECIAL OLYMPICS ON THE BIG SCREEN! SUPPORT "THE RINGER"

On December 23, "The Ringer," a Farrelly Brothers film starring Johnny Knoxville, opened in theaters across the United States and Canada. Special Olympics and NDSS are supporting this new comedy which challenges destructive stereotypes about people with intellectual disabilities.
 
In "The Making of 'The Ringer,'" Peter Farrelly comments that one of his goals in making the movie, which features more than 150 individuals with intellectual disabilities in small parts and supporting roles, was to "make people with disabilities more accessible to people who would have been afraid to approach them." Special Olympics president Tim Shriver points out that "humor is a very effective way to reach [younger people with the Special Olympics message], and the Farrellys are masters of that demographic."
 
This movie represents an amazing opportunity to raise the profile of people with intellectual disabilities in their communities and show the public that just like everyone else, these individuals are people first. NDSS will be contacting affiliates with more information about the film and ways to promote it in your community.

MEDIA REQUEST
NDSS (National Down Syndrome Society) needs your help with a pitch to a national media outlet about two generations of a family. We're seeking a family anywhere in the U.S. that had an older family member with an intellectual disability who was institutionalized and now has a younger family member with an intellectual disability who grew up at home. The goal of the story is to show how life for people with intellectual disabilities has changed in recent generations and also illustrate the family dynamics. If you know a family who has this situation and is willing to speak candidly about their experiences and feelings, please contact Suzanne Elliott Armstrong at selliott@ndss.org or (212) 763-4370

INFORMATION BULLETIN
From the National Down Syndrome Society
December 28, 2005 
_______________________________
Proposed Requirements and Selection Criteria Published For IDEA Multi-Year IEP and Paperwork Reduction Pilots
In the Federal Register for December 19th, the U.S. Department of Education published notices of proposed requirements and selection criteria for the Multi-Year IEP and Paperwork Reduction Pilots permitted under IDEA 2004. It is important to note that these are not regulations. 
The multi-year IEP pilot allows up to 15 states to seek approval for proposals to offer parents the option of a multi-year IEP, not to exceed 3 years. IDEA states that this pilot was developed to offer the opportunity for long-term planning.

The paperwork reduction pilot allows up to 15 states to seek waivers of certain IDEA statutory and regulatory requirements for a period not to exceed 4 years. IDEA 2004 states that the purpose of this pilot is to reduce excessive paperwork and non-instructional time burdens that do not assist in improving educational and functional results for students with disabilities. The statute also states that procedural safeguards, civil rights requirements, and the right to a free appropriate public education (FAPE) may not be waived or affected.  

A careful review of the details of the proposed requirements and selection criteria for these pilots is essential in order to protect the educational rights of children with disabilities. It will be critically important to ensure that long-term planning does not limit the input of parents or the ability to plan for and measure student progress. It is also essential for States to have meaningful stakeholder input and agreement on the type of paperwork and activities that the States label as excessive and non-instructional. The short-term objective requirement for certain students with disabilities was eliminated in the IDEA reauthorization in the name of paperwork reduction. This decision raises concerns about where paperwork reduction might lead, in spite of the fact that procedural safeguards, civil rights requirements, and the right to FAPE are supposed to be kept in place.

The public has until March 6, 2006 to submit comments on the notices of proposed requirements and selection criteria for the pilots. NDSS will be sending you more information about the details contained in these notices as it develops its comments and recommendations. 
The proposed regulations for the Multi-Year IEP can be found at: http://a257.g.akamaitech.net/7/257/2422/01jan20051800/edocket.access.gpo.gov/2005/E5-7506.htm 

The proposed regulations for the Paperwork Reduction pilot can be found at:
http://a257.g.akamaitech.net/7/257/2422/01jan20051800/edocket.access.gpo.gov/2005/E5-7507.htm   

Calendar

2006 GiGi Calendars are now on Sale!

You can purchase them online through:
www.gigisplayhousetoo.com/store.asp or call the playhouse 847-885-PLAY (7529)