Down Syndrome Association of San Diego
e-NEWS
November 18, 2005
Dear Friends and Families,
This week we share with the the most recent issue of Affiliate News from NDSS as well as
upcoming events in the community
Recent articles of interest in the San Diego Union Tribune newspaper:
High court rules against parents in special education case 11-14-05
http://www.signonsandiego.com/news/education/20051114-0928-scotus-schools.html
Upcoming Community Events/Trainings:
Compassionate Communication 11-30-05
http://www.buildingbridges2gether.org/presentation%20communication.htm
Dec 8, 2005 6:30pm-9:00pm CACSE Holiday Potluck Social, Book Club discussion &
general meeting. Community Advisory Committee for Special Education meeting is at
Lindbergh Schweitzer Elementary School, located at 4133 Mt. Albertine Avenue, San Diego
92111.Visit www.cacse.org or call 858-627-7270 ext 3160.
Workshops by LDA San Diego (Call 858-467-9158):
IEP Goals - Dec 2,2005 9:30-11:30am or Feb 28, 2006 6:30-8:30pm
School Problems - January 17 & 24, 2006 from 6:30-9:00pm
Not Really a Bad Kid - Feb 2, 2006 9:30-11:30am
ABC-TV documentary “Shadow Voices: finding hope in mental illness” airing
December 4th
http://www.efrconline.org/admin/files/ABC%20Shadow%20Voices%2012405.doc
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National Down Syndrome Society Affiliate News
November 2005
1. MESSAGE FROM THE PRESIDENT
2. WELCOME NEW AFFILIATES: Down By the Border (TX), Down Syndrome Support Team
(MI)
3. OPPORTUNITY TO SPONSOR NATIONAL INCLUSIVE SCHOOLS WEEK, DEC. 5 - 9
4. SPECIAL OLYMPICS ON THE BIG SCREEN! SUPPORT "THE RINGER" ON OPENING
WEEKEND, DEC. 23-25
5. POSTSECONDARY SCHOLARSHIP OPPORTUNITY!
6. CHANGING LIVES PARTNERS
7. NATIONAL POLICY CENTER UPDATES: No Child Left Behind - An Unexpected Ally for
Inclusion, Colorado Affiliates Join Forces
8. HOLIDAY GIFT IDEAS FROM NDSS
9. NDSS ANNUAL REPORT ADDENDUM
1. MESSAGE FROM THE PRESIDENT
Dear Affiliate Leaders:
By now, each of you should have received your copy of the NDSS Annual Report, Opportunities:
Past, Present and Future, which covers our accomplishments during fiscal year April 2004-March
2005.* The document lists several achievements of the NDSS National Policy Center (NPC) over
that time, including reconstituting the NDSS National Governmental Affairs Committee (NGAC) and
representing the interests of students with Down syndrome and their families during the
reauthorization of the Individuals with Disabilities Education Act.
Since March, the NPC and the NGAC, under the leadership of Madeleine Will and David Hoppe
respectively, have added many items to their already impressive list of accomplishments in the
advocacy arena. In September, they succeeded in getting important language included in the Fiscal
Year 2006 report of the Senate Appropriations Subcommittee on Labor, Health and Human
Services and Education and Related Agencies. The bill provides funding for the Department of
Education and all the agencies of Public Health Service, and the language secured by NDSS gives
strong guidance for the use of these funds within special education and research programs
important to the Down syndrome community.
For the Department of Education, specific language calls for the development of a plan to expedite
the process of developing universally designed instructional strategies, curricula, standards,
materials and assessments for children with intellectual disabilities in grades K-12. This is an area
of particular interest to the NDSS policy team, as it is seen as a key way to increase the rigor of
curricula offered to students with Down syndrome and improve their test scores under NCLB.
In terms of research, the language would lead to a sharpened focus on Down syndrome at a
number of institutes at the National Institutes of Health (NIH) and epidemiological studies at the
Centers for Disease Control. Increased basic science and clinical research support would be
directed at studies on cognition and health issues in Down syndrome. Also, the director of NIH is
urged to establish Down Syndrome Research Task Force to develop a strategic plan for research in
this area.
Another significant accomplishment of the NPC/NGAC is the development of priorities that cross the
lifespan for individuals with Down syndrome to guide NDSS legislative and policy efforts in the
coming years. These priorities include providing a first-class education for children with Down
syndrome by raising expectations and improving outcomes for both early childhood and K-12
programs, as well as creating an economic future for adults with Down syndrome by improving
outcomes of transition and promoting and encouraging consumer control of resources, earnings,
savings and ownership.
In addition to these achievements at the federal level, the NPC is making substantial progress in
developed and strengthening the NDSS legislative and policy infrastructure at the state level. The
NPC is working to create a network of statewide government affairs committees (GACs) in
preparation for 2010 reauthorization of IDEA, and by the end of 2005, the NPC will have delivered
training and provided ongoing support to GACs in eight states! On November 18, the NPC will host
a meeting in Columbus, Ohio, in which representatives from all our Ohio affiliates and several other
intellectual disability organizations in the state will explore opportunities for collaborating on public
policy goals. Be sure to check out the next issue of Affiliate News to read about the events of the
day and any decisions made.
All these successes would not have occurred without the leadership of Madeleine Will (director,
NPC), Ricki Sabia, (associate director, NPC) and David Hoppe (chair, NGAC). They are effective,
passionate and truly non-stop in their advocacy to promote legislation and policies that give
individuals with Down syndrome the opportunity to achieve their life aspirations.
Sincerely,
Alan P. Brownstein
P.S. Happy birthday to the Down Syndrome Association of Greater Cincinnati! I am so pleased to
have had the opportunity to attend your wonderful 25th anniversary celebration, which gave a voice
to all members of your constituency, including self-advocates, parents, professionals and staff.
*Please see item #9, "NDSS Annual Report Addendum"
2. WELCOME NEW AFFILIATES
DOWN BY THE BORDER
15 W. Madison Suite A
Brownsville, TX 78520
(956) 541-2085
zariahzarate@yahoo.com
Primary Contact: Dolores Zarate, President
DOWN SYNDROME SUPPORT TEAM
602 Island Dr.
Tecumseh, MI 49286
(517) 424-0630
downsyndromest@yahoo.com
Primary Contact: Katherine Dehring, Coordinator
Please join us in extending a warm NDSS welcome to these groups, and be certain to include them
as you continue to reach out to each other and share your information and ideas!
3.OPPORTUNITY TO SPONSOR NATIONAL INCLUSIVE SCHOOLS
WEEK, DEC. 5 - 9
NDSS is proud to be Association Partner of National Inclusive Schools Week, which takes place on
December 5-9, 2005. Our affiliates also have the opportunity to support this initiative to promote the
inclusion of ALL students in schools across the country.
National Inclusive Schools Week was created five years ago to promote a national dialogue on the
benefits of inclusive schools and inclusive educational practices. The week invites educators,
families and communities to celebrate the progress of our nation's schools in providing a supportive
and quality education to all students.
To learn more about National Inclusive Schools Week, visit www.inclusiveschools.org. If your group
wishes to become an Association Partner, fill out and return the agreement form located at
www.ndss.org/media/pdf/AssocAgreeForm.pdf. A checklist of requirements is located at
www.ndss.org/media/pdf/AssocChecklst.pdf.
4.SPECIAL OLYMPICS ON THE BIG SCREEN! SUPPORT "THE RINGER"
ON OPENING WEEKEND, DEC. 23-25
On December 23, "The Ringer," a Farrelly Brothers film starring Johnny Knoxville, opens 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.
We are encouraging everyone to help us change attitudes by seeing "The Ringer" at your local
theaters in December! Some ways you might show your support include:
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Designating Dec. 23 as "See 'The Ringer' Day" in your community and encouraging your
families to attend.
Talking to a local movie theater about getting a discount on a block of tickets, and
distributing them to your members.
Organizing a group outing for your teens and adults group on opening weekend.
Reaching out to other disability organizations in your community about the film.
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.
To read more about "The Ringer," visit:
http://www.specialolympics.org/Special+Olympics+Public+Website/English/
Press_Room/Global_news/The+Ringer+opens+23+December.htm .
5. POSTSECONDARY SCHOLARSHIP OPPORTUNITY!
NDSS is pleased to announce the second year of The Joshua O'Neill and Zeshan Tabani
Enrichment Fund. This fund was established in January 2005 by Zeshan Tabani to honor his friend,
Joshua O'Neill. The Joshua O'Neill and Zeshan Tabani Enrichment Fund will continue to offer
financial assistance to young adults with Down syndrome who wish to continue to enrich their lives
by participating in postsecondary programs or taking enrichment courses to obtain employment and
other important life skills.
The fund will award five (5) grants of up to $1,000 to individuals with Down syndrome who wish to
enroll in or continue studying in a postsecondary program or enrichment course. We encourage all
individuals who meet the eligibility criteria to apply for this grant. The applicants must have Down
syndrome; be at least 18 years old; demonstrate a desire to continue their education; and intend to
enroll in a postsecondary class or program that will enrich their life through employment,
independent living skills, life skills or another way.
Applications will be available at www.ndss.org/postsecondary by Monday, November 28, 2005.
Completed application packages must be returned to NDSS by May 1, 2006. The grants will be
awarded no later than July 15, 2006. If you have any questions, please feel free to contact Erin
Geller at egeller@ndss.org or (212) 763-4379.
6. CHANGING LIVES PARTNERS
Dear Affiliates:
We would like to take this opportunity to welcome the following groups as our newest Changing
Lives Partners:
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Down Syndrome Support Team (Tecumseh, MI)
Down Syndrome Association of Wisconsin (Milwaukee, WI)
We are very excited about the work being done by our affiliate in Delaware. The Down Syndrome
Association of Delaware (DSAD) has started to reach health care providers throughout their state.
DSAD's Kristen Pidgeon has informed us that the group has been involved in a variety of Changing
Lives outreach programs, including direct presentations to health care providers and a statewide
telecast to medical residents. Through the group's presentations, information about Down
syndrome, delivering a diagnosis, and available resources has reached numerous health care
providers of various disciplines.
We applaud the great efforts being made by DSAD and cannot wait for future updates!
Tip of the Month
If you have purchased Changing Lives and don't know where to start, contact me! I can put you in
touch with other partners who are doing wonderful and exciting things with the program.
Aileen Leonard,Resource Specialist
(212) 763-4367 aleonard@ndss.org
7. NATIONAL POLICY CENTER UPDATES
No Child Left Behind - An Unexpected Ally for Inclusion
A recent article in The Washington Post entitled "'No Child' Closes the Gap; Harder for Special
Needs, Low-Income Students to be Left Behind" describes Ricki Sabia's battle to include her son,
Stephen, in regular classes, and how the federal No Child Left Behind (NCLB) law has become an
"unexpected ally" in promoting inclusion and improved achievement for children with disabilities.
Ricki is the associate director of the National Down Syndrome Society's National Policy Center and
a leading expert on NCLB and special education.
In the article, Ricki stated: "The biggest impact of NCLB may be a revolution in the way we talk
about education for students with disabilities. The standard has always been an appropriate
education which provides some minimal benefit or progress on IEP goals. We only heard "world
class" or "state of the art" applied to general education. With NCLB, school systems will have to
start applying those terms to students with disabilities if they are not to be left behind."
To read the full article, visit
http://www.ndss.org/content.cfm?fuseaction=NwsEvt.Article&article=1485.
Colorado Affiliates Join Forces
Our parents and self-advocates in Colorado are serious about making sure that America's "world
class" standards apply to all Coloradans, including those with Down syndrome and other disabilities.
The National Policy Center (NPC) is pleased to announce the creation of an eighth NDSS affiliate
government affairs committee in the state of Colorado. The NPC, the Colorado Springs Down
Syndrome Association, and the Mile High Down Syndrome Association jointly sponsored a
leadership training on October 21 and 22 in Denver that resulted in the Colorado Down Syndrome
Governmental Affairs Committee and two priorities for action. The priorities for action are to monitor
and influence the development of the IDEA 2004 state regulations and to advocate for and help
create a post-secondary program initiative in the state of Colorado. Our Colorado groups are great
advocates, and we look forward to hearing about the successes of their collaboration.
8. HOLIDAY GIFT IDEAS FROM NDSS
Get your holiday shopping done early! NDSS offers a wide selection of gifts for everyone on your
shopping list, including:
UpBeat Subscriptions
This year, why not get the teens and young adults on your list a subscription to UpBeat, the
magazine for and by individuals with Down syndrome? UpBeat is a unique resource for teens
and adults with Down syndrome to read about and share their views on a wide range of topics,
including current events, movies, art & music, self-advocacy, independent living, travel, fitness
and much, much more!
Subscriptions include three (3) issues and cost $15 in the United States and $25 internationally.
Visit the NDSS store at http://www.ndss.org/content.cfm?fuseaction=shop.main to order UpBeat
and view other great gift ideas.
Awesome Kids Merchandise
For young children, consider the following two products developed specifically for NDSS by
Awesome Kids.
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The Creative Crafts Boxx ($19.99), which features fun arts and crafts activities that
emphasize the values of friendship.
An animated DVD entitled "Margie's Journal" ($19.99). "Margie's Journal" is the story of
a girl named Margie who has Down syndrome and moves to the Village of Awesome.
Featuring NDSS member Cary Ziesemer as the voice of Margie, this story teaches
children about acceptance and inclusion of all people.
Awesome Kids, a national partner for the 2005 Buddy Walk, is donating 20% of proceeds from
the sale of these two products to NDSS. To make a purchase, visit:
http://www.awesomekids.com/ndss.html.
We thank you for supporting our national programs in education, research and advocacy by
giving NDSS merchandise this holiday season!
9.NDSS ANNUAL REPORT ADDENDUM
The following affiliate groups were unintentionally omitted from the 2004-2005 NDSS Annual
Report, Opportunities: Past, Present and Future. Please accept our apologies as we sincerely
regret this error.
Florida
Broward Gold Coast Down Syndrome Organization
Developmentally Disabled Residential Corporation
Down Syndrome Association of Central Florida
Down Syndrome Association of Jacksonville, Inc.
Down Syndrome Supported Living, Inc.
Gold Coast Down Syndrome Organization, Inc.
Manasota B.U.D.S. Bringing Up Down Syndrome
Southwest Florida PODS Angels Family Support Group, Inc.
Up with Downs of Pinellas
Georgia
Chattahoochee Valley Down Syndrome Support Group (also serving Alabama)
Down Syndrome Association of Atlanta
Hawaii
Hawaii Down Syndrome Congress
Maui Down Syndrome Family Support Group
Idaho
Treasure Valley Down Syndrome Association
An addendum with this information will be inserted into all copies of the Annual Report that will
be distributed in the future. You can download the addendum on the NDSS Web site at:
http://www.ndss.org/media/pdf/affiliate_addendum.pdf.
Do you have comments or suggestions about the types of items you would like to see in Affiliate News?
Our goal is to provide NDSS affiliates with ongoing support and helpful information, so we would love
to hear your ideas. Just reply to this message or e-mail affiliates@ndss.org.
To read past issues of Affiliate News , visit
http://join.buddywalk.org/site/R?i=TaAsMu3ROM9Vk8YCPnrCRg..
© 2005 National Down Syndrome Society. All rights reserved.
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November 18, 2005