Kentucky Down Syndrome Groups Have a Question for the Vice Presidential Debate
Should it be U.S. Policy for Down syndrome to be prevented through prenatal testing?
Louisville, KY, October 02, 2012 --(PR.com)-- Advocates from across the Commonwealth have a question for Martha Raddatz, the Vice Presidential Debate moderator, to ask Vice President Joe Biden and Congressman Paul Ryan: should it be U. S. policy for Down syndrome to be prevented through prenatal testing?
“Under the health care reform law, preventive care regulations require no-cost prenatal testing for genetic and developmental conditions,” explained Mark Leach, President of Down Syndrome of Louisville, whose daughter has the genetic condition that causes developmental delay. “Prenatal testing does nothing to prevent Down syndrome, so why is this required as part of health care reform’s preventive care measures?”
According to the National Down Syndrome Society, the life expectancy for individuals with Down syndrome has more than doubled since the 1980’s, from 25 in 1983 to 60 today. This improvement in both quantity and quality of life is due, in part, to key pieces of federal legislation.
Beginning in the 1970’s, federal law began to require early intervention therapies and inclusion in public schools. These measures progressed to include individuals with Down syndrome and other disabilities in their communities and in work places. But, advocates fear the progress made against discrimination and in favor of acceptance could be reversed if the current policy is allowed to remain.
Where governmental policy reduces the cost of prenatal testing, more expectant mothers accept it and fewer children with Down syndrome are born. This can result in those having children with Down syndrome being stigmatized, particularly if there is a governmental policy to “prevent” Down syndrome.
“Prenatal testing is a very personal decision,” said Dr. Harold Kleinert, director of the University of Kentucky’s University Center for Excellence in Developmental Disabilities and a board member of Down Syndrome Association of Central Kentucky. “In 2011, the Kentucky state contract for Medicaid management initially required coverage for prenatal testing for Down syndrome for all expectant mothers, without any requirements whatsoever that expectant mothers be given accurate information about Down syndrome. Through public debate we changed that, but now the issue is at the federal level with little to no public debate taking place.”
With the Vice-Presidential debate being held in their home state, advocates say it is time for this question to be raised.
“We recently held our annual walk where 1,500 of our fellow Kentuckians came together to celebrate October being National Down Syndrome Awareness Month,” said Nancy Combow, Vice-President of Down Syndrome of South Central Kentucky. “I have a six-year old son with Down syndrome. I want to know why U.S. regulations now say prenatal testing should be used to prevent those like him from being part of our society. It’s a question that needs to be asked.”
Advocates from across Kentucky hope that at the October 11 debate at Centre College Ms. Raddatz will ask the candidates that question.
About Down Syndrome Association of Central Kentucky
Down Syndrome Association of Central Kentucky (DSACK) is a 501 (c) (3) non-profit organization which serves children and adults with Down syndrome, their families, and interested professionals in the Central Kentucky area. DSACK provides emotional, educational and social support to families in need and focuses on current and future planning for families and their loved ones with Down syndrome, through seminars, group meetings, social activities, and informational materials.
For additional information about DSACK, visit http://dsack.org/.
About Down Syndrome of Louisville
Down Syndrome of Louisville (DSL) is a 501(c)(3) non-profit with the mission of improving the lives of people with Down syndrome and their families by providing support, information, education, and advocacy for their rights and concerns. In the past year, DSL has opened its Louisville campus’ Lifelong Learning Center, expanded its services to Southern Indiana, and will soon be opening another Lifelong Learning Center in Clarksville, Indiana.
For additional information about DSL, visit http://downsyndromeoflouisville.org/.
About Down Syndrome of South Central Kentucky
Down Syndrome of South Central Kentucky (DSSCKY) is a 501©(3) non-profit organization serving primarily Allen, Barren, Butler, Edmonson, Logan, Simpson, and Warren Counties. Its mission is to enhance the quality of life for individuals with Down syndrome and their families by providing support, information, education, resources, networking, and activities, while advocating in the community and state.
For additional information about DSSCKY, visit: http://www.dssky.org/.
Contact: Mark W. Leach
Phone: 502.938.4864 mobile or 502.681.0583 office
e-mail: mleach@stites.com
“Under the health care reform law, preventive care regulations require no-cost prenatal testing for genetic and developmental conditions,” explained Mark Leach, President of Down Syndrome of Louisville, whose daughter has the genetic condition that causes developmental delay. “Prenatal testing does nothing to prevent Down syndrome, so why is this required as part of health care reform’s preventive care measures?”
According to the National Down Syndrome Society, the life expectancy for individuals with Down syndrome has more than doubled since the 1980’s, from 25 in 1983 to 60 today. This improvement in both quantity and quality of life is due, in part, to key pieces of federal legislation.
Beginning in the 1970’s, federal law began to require early intervention therapies and inclusion in public schools. These measures progressed to include individuals with Down syndrome and other disabilities in their communities and in work places. But, advocates fear the progress made against discrimination and in favor of acceptance could be reversed if the current policy is allowed to remain.
Where governmental policy reduces the cost of prenatal testing, more expectant mothers accept it and fewer children with Down syndrome are born. This can result in those having children with Down syndrome being stigmatized, particularly if there is a governmental policy to “prevent” Down syndrome.
“Prenatal testing is a very personal decision,” said Dr. Harold Kleinert, director of the University of Kentucky’s University Center for Excellence in Developmental Disabilities and a board member of Down Syndrome Association of Central Kentucky. “In 2011, the Kentucky state contract for Medicaid management initially required coverage for prenatal testing for Down syndrome for all expectant mothers, without any requirements whatsoever that expectant mothers be given accurate information about Down syndrome. Through public debate we changed that, but now the issue is at the federal level with little to no public debate taking place.”
With the Vice-Presidential debate being held in their home state, advocates say it is time for this question to be raised.
“We recently held our annual walk where 1,500 of our fellow Kentuckians came together to celebrate October being National Down Syndrome Awareness Month,” said Nancy Combow, Vice-President of Down Syndrome of South Central Kentucky. “I have a six-year old son with Down syndrome. I want to know why U.S. regulations now say prenatal testing should be used to prevent those like him from being part of our society. It’s a question that needs to be asked.”
Advocates from across Kentucky hope that at the October 11 debate at Centre College Ms. Raddatz will ask the candidates that question.
About Down Syndrome Association of Central Kentucky
Down Syndrome Association of Central Kentucky (DSACK) is a 501 (c) (3) non-profit organization which serves children and adults with Down syndrome, their families, and interested professionals in the Central Kentucky area. DSACK provides emotional, educational and social support to families in need and focuses on current and future planning for families and their loved ones with Down syndrome, through seminars, group meetings, social activities, and informational materials.
For additional information about DSACK, visit http://dsack.org/.
About Down Syndrome of Louisville
Down Syndrome of Louisville (DSL) is a 501(c)(3) non-profit with the mission of improving the lives of people with Down syndrome and their families by providing support, information, education, and advocacy for their rights and concerns. In the past year, DSL has opened its Louisville campus’ Lifelong Learning Center, expanded its services to Southern Indiana, and will soon be opening another Lifelong Learning Center in Clarksville, Indiana.
For additional information about DSL, visit http://downsyndromeoflouisville.org/.
About Down Syndrome of South Central Kentucky
Down Syndrome of South Central Kentucky (DSSCKY) is a 501©(3) non-profit organization serving primarily Allen, Barren, Butler, Edmonson, Logan, Simpson, and Warren Counties. Its mission is to enhance the quality of life for individuals with Down syndrome and their families by providing support, information, education, resources, networking, and activities, while advocating in the community and state.
For additional information about DSSCKY, visit: http://www.dssky.org/.
Contact: Mark W. Leach
Phone: 502.938.4864 mobile or 502.681.0583 office
e-mail: mleach@stites.com
Contact
Down Syndrome of Louisville
Mark W. Leach
(502) 938-4864
https://twitter.com/MarkWLeach
Mark W. Leach
(502) 938-4864
https://twitter.com/MarkWLeach
Contact
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Kentucky Down Syndrome Advocates Have a Question for the Vice Presidential Debate
Should it be U.S. Policy for Down syndrome to be prevented through prenatal testing?
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