No doubt you have read about the bipartisan "Super Committee" – the joint select committee of congressmen and senators who are charged with developing a plan to reduce the federal deficit by $1.5 trillion by November 23rd and sending the plan to the House and Senate for a vote by December 23rd of this year. If the Super Committee cannot agree, or if the House and Senate do not pass the bill recommended by the Super Committee, then $1.2 trillion in cuts will commence and will be evenly allocated across defense programs and non-defense programs in the federal budget.
Because of the stressful and unnerving prospect of across the board cuts to disability programs, the Collaboration for Self-Determination (CPSD), a coalition co-founded by NDSS, the National Fragile X Foundation and the Autism Society of America, is determined to meet with key staff of the twelve members of the Super Committee established by Congress. We believe there is an opportunity to make a strong case for changes to the major programs that will align the policies and outcomes of these programs to the 21st century concerns and needs of families and persons with Down syndrome. Representatives of a number of the 14 organizations who make up CPSD attend the meetings and are advocating for policy changes to disability programs that will result in more people with intellectual disabilities becoming employed and living independently.
These meetings-- and others we have had with staff of other members in the House and Senate in the past few months-- are proving to be instructive. The reception to our message has been quietly positive but staffers are definitely concerned about the cost of community based programs. They are very often not aware of the progress that has been made through medicine, education and family nurturing in producing persons with Down syndrome who are competent adults ready and willing to work and become full participants in the life of their communities. Although Hill staffers are mostly young, smart people, functioning in an atmosphere of considerable unpredictability, we find them surprised by information about innovative practices and models that will help people with disabilities lead fuller lives. Supported employment and customized employment are not widely understood. Nor are the concepts of universal design for learning and post-secondary education.
The messaging task before CPSD members is daunting in its complexity: explaining how policy barriers to employment like the asset limitation and income limitations in Social Security and Medicaid fix people with disabilities in a state of perpetual poverty; and explaining how these citizens and their families, if given more control of the public resources available to them, could create a more productive and independent life while utilizing public funds more efficiently and effectively.
I intend to write about these meetings as they occur to keep you "in the loop" and to "loop you into" the message development process. Conveying who these young people and adults with Down syndrome are and their incredible competencies to policymakers is a responsibility of the collective Down syndrome community. We need your help to communicate better.
Some of you may have seen the outstanding article in the NY Times about a young man named Justin who happens to have autism. The article was written by Amy Harmon, a journalist who has also written excellent pieces about people with Down syndrome in the past. The NY Times article is especially compelling because Ms. Harmon manages to allow Justin through words and action to tell us about himself, his dreams and his journey. Justin is the message.
Thursday, September 22, 2011
Thursday, July 7, 2011
NDSS Congratulates Dr. Karen Summar
The Joseph P. Kennedy, Jr. Foundation, has named Dr. Karen Summar, a member of the NDSS Clinical Advisory Board, as one of its 2011-2012 Public Policy Fellows.
Established in 1946 and headed by Eunice Kennedy Shriver for fifty years before her death in 2010, the Foundation created the Public Policy Fellowship program to address the need for skilled leadership in government and public policy.
Kennedy Fellows are chosen for their distinguished involvement in efforts to improve the lives of persons with intellectual or developmental disabilities at the regional, state or national level. Fellows become future leaders who, after their year in Washington, make significant contributions to policy and program development. The intensive one year Fellowship in Washington D.C. includes a full year of active participation in public policy, advocacy training and a week-long Bioethics course at Georgetown University.
Dr. Summar, a pediatrician and researcher with expertise in Down syndrome, is currently an Assistant Professor of Pediatrics, in the Division of Neurodevelopmental Disabilities at Children's National Medical Center. Dr. Summar was formerly the Director of the Jane and Richard Thomas Center for Down Syndrome at the Cincinnati Children’s Hospital Medical Center and was an Assistant Professor of Pediatrics in the Division of Developmental Medicine at Vanderbilt Children’s Hospital. She is also the parent of a young woman who has Down syndrome.
Established in 1946 and headed by Eunice Kennedy Shriver for fifty years before her death in 2010, the Foundation created the Public Policy Fellowship program to address the need for skilled leadership in government and public policy.
Kennedy Fellows are chosen for their distinguished involvement in efforts to improve the lives of persons with intellectual or developmental disabilities at the regional, state or national level. Fellows become future leaders who, after their year in Washington, make significant contributions to policy and program development. The intensive one year Fellowship in Washington D.C. includes a full year of active participation in public policy, advocacy training and a week-long Bioethics course at Georgetown University.
Dr. Summar, a pediatrician and researcher with expertise in Down syndrome, is currently an Assistant Professor of Pediatrics, in the Division of Neurodevelopmental Disabilities at Children's National Medical Center. Dr. Summar was formerly the Director of the Jane and Richard Thomas Center for Down Syndrome at the Cincinnati Children’s Hospital Medical Center and was an Assistant Professor of Pediatrics in the Division of Developmental Medicine at Vanderbilt Children’s Hospital. She is also the parent of a young woman who has Down syndrome.
Monday, March 28, 2011
Announcing 2011 State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities
The National Down Syndrome Society is very pleased to announce that NDSS and George Mason University (GMU) will once again sponsor the National State of the Art Conference on Postsecondary Education and Students with Intellectual Disabilities, which will be held on November 3rd and 4th at GMU’s conference center in Fairfax, Virginia.
The Administration on Developmental Disabilities (ADD), in the U.S. Department of Health and Human Services, confirmed today that ADD will cosponsor the conference. ADD funds technical assistance on postsecondary education through ThinkCollege! and will be an important partner in the conference. Last year a number of national organizations cosponsored the conference, with contributions starting at $2,500, and we anticipate similar support again this year. Financial support from cosponsorships helps defray the costs of the conference, and will lower the registration costs for parents and students/self-advocates. If your organization would like to consider cosponsoring the 2011 conference, please contact Stephanie Smith Lee at slee@ndss.org.
The conference of 300 participants will provide an opportunity for colleges and universities, researchers, program staff, parents self-advocates, and government officials to learn about the current state of research and practice in the field. Panels that include faculty and staff from postsecondary education initiatives, parents, self-advocates and other experts, will share effective practices during break-out sessions with an opportunity for group discussion.
For a report on last year’s conference please click here to see the December NDSS E-Newsletter. A common thread in comments about the 2010 conference was the importance of the “mix” of government officials, researchers, IHE faculty, project staff, parents and self-advocates. Evaluations from the conference stressed how important it was to have an opportunity to learn from one another and experts in the field.
For information on the conference, visit www.sscsid.org. Registration will open May 30, 2011.
The Administration on Developmental Disabilities (ADD), in the U.S. Department of Health and Human Services, confirmed today that ADD will cosponsor the conference. ADD funds technical assistance on postsecondary education through ThinkCollege! and will be an important partner in the conference. Last year a number of national organizations cosponsored the conference, with contributions starting at $2,500, and we anticipate similar support again this year. Financial support from cosponsorships helps defray the costs of the conference, and will lower the registration costs for parents and students/self-advocates. If your organization would like to consider cosponsoring the 2011 conference, please contact Stephanie Smith Lee at slee@ndss.org.
The conference of 300 participants will provide an opportunity for colleges and universities, researchers, program staff, parents self-advocates, and government officials to learn about the current state of research and practice in the field. Panels that include faculty and staff from postsecondary education initiatives, parents, self-advocates and other experts, will share effective practices during break-out sessions with an opportunity for group discussion.
For a report on last year’s conference please click here to see the December NDSS E-Newsletter. A common thread in comments about the 2010 conference was the importance of the “mix” of government officials, researchers, IHE faculty, project staff, parents and self-advocates. Evaluations from the conference stressed how important it was to have an opportunity to learn from one another and experts in the field.
For information on the conference, visit www.sscsid.org. Registration will open May 30, 2011.
Wednesday, March 2, 2011
Buddy Walk on Washington
What a great few days on Capitol Hill for the Down syndrome community! Click here to get the scoop and see some great pics!
Monday, January 24, 2011
Yearbook
When students with Down syndrome have the opportunity to be included in
all aspects of the school community something amazing happens; people
start to see them for their contributions to that community and not for
their disability. Steve Sabia, son of the Associate Director of the
Policy Center, recently was honored with a full page spread in his high
school year book as the "symbol of school pride" for the Class of 2011,
a class of 450 students. The article in the yearbook mentions that he
has been a manager of the football and baseball teams since his freshman
year. The article also points out that he received a Panther of the
Month award for leadership, citizenship and scholarship-an award given
by the teachers that is received by only 40 students from each class
during their four years at the school. There are also quotes about how
funny Steve is and how he kept the football players on their toes. All
of this is wonderful, but the best part of the article is what it
doesn't say. There is no mention of Down syndrome or disability. The
focus was solely on Steve, the high school senior-as it should be.
all aspects of the school community something amazing happens; people
start to see them for their contributions to that community and not for
their disability. Steve Sabia, son of the Associate Director of the
Policy Center, recently was honored with a full page spread in his high
school year book as the "symbol of school pride" for the Class of 2011,
a class of 450 students. The article in the yearbook mentions that he
has been a manager of the football and baseball teams since his freshman
year. The article also points out that he received a Panther of the
Month award for leadership, citizenship and scholarship-an award given
by the teachers that is received by only 40 students from each class
during their four years at the school. There are also quotes about how
funny Steve is and how he kept the football players on their toes. All
of this is wonderful, but the best part of the article is what it
doesn't say. There is no mention of Down syndrome or disability. The
focus was solely on Steve, the high school senior-as it should be.
Thursday, January 6, 2011
Congresswoman Cathy McMorris Rodgers Encourages You to Attend the Buddy Walk on Washington!
"The Buddy Walk on Washington brings the local community and the nation's Capitol together to celebrate the accomplishments of individuals with Down syndrome and to educate elected representatives on those issues affecting the Down syndrome community." -Congresswoman Cathy McMorris Rodgers
For more information and to register, click here. Hurry! Registration closes on January 12!
For more information and to register, click here. Hurry! Registration closes on January 12!
Wednesday, December 1, 2010
Join Us!
There are just 40 days left to register to attend the Buddy Walk® on Washington. Registration closes on January 12th for the 2011 Buddy Walk® on Washington, which will take place on February 7th and 8th in Washington D.C.
There is no better opportunity as a member of the Down syndrome community to:
There is no better opportunity as a member of the Down syndrome community to:
- Join forces with other Down syndrome advocates from around the country
- Meet face to face with elected officials on Capitol Hill and talk to them about the need to advance education, research and healthcare for people with Down syndrome
- Have your voice heard…while having a great time!
No experience in advocacy is necessary, NDSS provides all of the training and preparation you’ll need.
Click here to register and to learn more. Registration is only $25!
Also, be sure to connect with us on the new Buddy Walk on Washington Facebook page for more in-depth, exclusive information and to share your perspective!
See you there!
Subscribe to:
Posts (Atom)