Congress Launches New Congressional Down Syndrome Caucus

FOR IMMEDIATE RELEASE
May 8, 2008

McMorris Rodgers Announces New Congressional Down Syndrome Caucus

(Washington, D.C.) Today, Congresswoman Cathy McMorris Rodgers and other members of the Congressional Down Syndrome Caucus held their first briefing. Today’s briefing marks the first official event of the bipartisan caucus since its launch last week.

McMorris Rodgers co-chairs the caucus. She and her husband Brian have a one-year-old son, Cole, who has Down syndrome.

“The news of Cole’s Down syndrome was at first difficult to get our arms around and we were eager to learn all we could,” McMorris Rodgers said. “I’m often asked how being a mother has changed my life and changed my priorities, and I can assure you that it’s all been for the better. I have a new passion and a new energy for everything that I do. We have every intention of doing everything possible to ensure Cole has every opportunity to reach his full potential. I believe the Congressional Down Syndrome Caucus will be a vehicle to help bring this information to the forefront so all families of children and adults with Down syndrome can lead happy lives.”

There are more than 350,000 people with Down syndrome in the U.S., but past and current funding at the National Institutes of Health (NIH) is disproportionately low when it comes to finding treatments and increasing understanding of secondary disorders that often afflict people with Down syndrome, like Alzheimer’s disease and atherosclerosis.

Today, the Congressional Down Syndrome Caucus held its first briefing on what research is being done at the National Institutes of Health (NIH). The NIH updated us on its 10-year research plan which calls for increased research on the medical, cognitive, and behavioral conditions that occur in people with Down syndrome.

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From the website of McMorris Rodgers:

Mission of Congressional Down Syndrome Caucus

The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome.

The Congressional Down Syndrome Caucus will:

• Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.
• Hold informational events for Members and staff here in DC to increase awareness of the disorder among Members.
• Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.
• Continue to build House Congressional Down syndrome Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.
• Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.
• Identify and strike down barriers in the law for person’s with mental disabilities.
• Expand opportunities for the Down syndrome population in education, the workplace and society at large.

Goals of Congressional Down Syndrome Caucus

• To raise expectations and improve outcomes in education.
• To eliminate barriers to economic opportunity in employment and in programs that promotes savings and investment.
• To promote and fund research that accelerates the development of effective treatments and therapies.
• Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.
• To promote inclusiveness for people with Down syndrome.
• To help provide family support services and a community of care model.
• Advocate for the rights of those with Down syndrome and make sure those rights are being enforced.
  

Comments

[Marsha Katz]

I would be interested to know what prompted Rep. McMorris Rodgers to create this very specific caucus, thus separating Down Syndrome from the concerns of the existing Disability Caucus. How do the mission and goals of her caucus differ from the mission and goals of the disability caucus, and how would legislation differ for people with Down Syndrome? At a time when we are working so hard in the greater disability community to PRACTICE the "inclusion" we preach to others, how will her caucus advance "community" and refrain from the current philosophy of "divide and conquer?"

[Will Hull - United Cerebral Palsy National Office eAdvocacy/eCommunications Coordinator]

We have covered this issue here at United Cerebral Palsy in our internal e-newsletter/blog. Please take a look at the announcements section:
http://ucpeople.blogspot.com

[Stephanie Smith Lee and Madeleine C. Will]

The National Down Syndrome Society (NDSS) is one of the national organizations that encouraged Rep. McMorris Rodgers, Rep. Pete Sessions, Rep. Patrick Kennedy and Delegate Eleanor Holmes Norton (the caucus co-chairs) to form the Congressional Down Syndrome Caucus. While we can’t speak for the Members of Congress, we would like to share with you our perspective on why it is important to have a Congressional Down Syndrome Caucus. First, it is important to note that NDSS has worked for many years in collaboration with other disability organizations to defend the rights of individuals with disabilities and to promote improved opportunities across the lifespan for education, independent living, employment and inclusion in community life. For example, we are actively involved in the Consortium for Citizens with Disabilities, the Collaboration to Promote Self-Determination, and we created and are helping to support an important coalition on Universal Design for Learning (UDL). These coalitions are focused on promoting innovative practices and addressing the systemic barriers that impede many children and adults with disabilities from achieving the bright futures to which they aspire. In many cases, particularly in education, we have taken, and continue to take, the lead on issues that impact all children and adults with disabilities.

At the same time, exciting new scientific breakthroughs in basic and clinical research have lead to new knowledge about genetics, health, cognition, behavior, etc. in people with Down syndrome. New knowledge of how the brain works in individuals with Down syndrome could lead to new knowledge in how to teach people with Down syndrome academics, language skills, improved memory ability and improved behaviors. This knowledge would then need to be “translated" to educators, the medical field and parents and individuals with Down syndrome. This new scientific information has an impact on a wide range of issues impacting individuals with Down syndrome. According to NIH, “Infants with Down syndrome have certain characteristic physical features…and are more likely to have health conditions like hearing loss, heart malformations, hypertension, digestive problems, and vision disorders.” A high percentage of individuals with Down syndrome are affected by other medical issues such as Alzheimer's disease, atherosclerosis, cancer, obstructive sleep apnea, and language, cognition, and behaviors specific to individuals with Down syndrome. A new National Institutes of Health(NIH) plan on Down syndrome research “cites the need for increased research on the medical, cognitive, and behavioral conditions that occur in people with Down syndrome. These conditions include leukemia, heart disease, sleep apnea, seizure disorders, stomach disorders and mental health problems.” While the work being done is specific to Down syndrome, NIH researchers report that the Down syndrome research is opening up new knowledge concerning Alzheimer's and other diseases. While the new breakthroughs are exciting, much more needs to be done and funding for Down syndrome basic and clinical research and clinical care has been very limited.

We are also deeply concerned about the Center for Disease Control study that found that non-white children with Down syndrome die at an early age. Much more needs to be done to reach out to families from diverse backgrounds with information and assistance concerning medical care. Accurate, balanced information about Down syndrome needs to be provided to all families who receive a prenatal or postnatal diagnosis of Down syndrome. Another issue specific to Down syndrome is the low expectations and outright discrimination that sometimes occurs and can have such a negative impact on educational opportunities, friendship possibilities and quality of life. These are just a few of the areas that are Down-syndrome specific and need attention by Congress and federal agencies.

NDSS applauds the new caucus co-chairs for taking a lead in addressing the issues that are so important to individuals with Down syndrome and their families. We hope our colleagues on this listserve will agree with us that these Represenatives' efforts to improve the lives of children and adults with Down syndrome and their families in no way detracts from larger efforts to improve the lives of all people with disabilities.

For more information about the education, research and advocacy efforts of NDSS, visit our website at: ndss.org

Stephanie Smith Lee,
Senior Policy Advisor
NDSS National Policy Center

Madeleine C. Will,
Vice President of Public Policy
Director, National Policy Center
National Down Syndrome Society

[M. Leiberton]

Thank you Ms. Lee and Ms. Will. Thank you, Rep. McMorris Rodgers, for working to ensure that attention, effort, and funding be brought to bear to conduct research and further knowledge about Down syndrome. I fail to appreciate how this effort may exacerbate problems of persons with other disabilities. It is not a case of 'divide and conquer.' It is a case of recognizing differences and working to alleviate problems due to those differences.

[Bruce Campbell]

I think it's important to remember, and to continually point out, that on the specific topics of funds for research, we advocate funding for specific research that will have collateral benefits. I'm not up on the latest science but for some time have been following the developments in genetic links between Alzheimer's and Down syndrome, and I've found it very exciting that research in one area could lift the other. There are issues particular to DS, but we as advocate families should always look for the links and partnership and demonstrate those, even at the level of our mission statements.