LB891 Down Syndrome Diagnosis Information and Support Act has passed and been signed by Governor Ricketts!
We would like to thank everyone in the Nebraska Down Syndrome Community who advocated on behalf of families yet to receive a diagnosis of Down syndrome. Nebraska joins 14 other states who have passed a similar law. A special thank you goes to Tom Venzor, for proposing the idea, to Senator Lydia Brasch who sponsored the bill and to the 43 other senators who signed on as co-sponsors.
When meeting with Senators to discuss the bill, almost all asked why this needed to be a law. They each felt that accurate, non-biased and immediate information should already be provided to families receiving a diagnosis or screenting test results.. Unfortunately, far too many of us know this is not happening. Previously, a prenatal diagnosis was most often delivered by a specialist who dealt with high risk pregnancies and had experience delivering an unexpected diagnosis. Even with all that experience many families still report receiving out of date information or being pressured to terminate their pregnancies. Now, however, a new screening is available called Cell Free DNA screening. This checks for genetic issues, but also allows an expectant couple to find out the sex of the baby very early in pregnancy. For this reason, obstetricians and family practice physicians are being asked to order the tests, but they may not be prepared or equipped to deliver the news that a baby has a high likelihood of having Down syndrome. This law will make it easier for any physician who orders the test to deliver results and provide up to date, non-biased information and allow families to be better informed so they can make decisions that align with their values.
Now that the law is passed, the Nebraska Down syndrome community must again work together to get the information on the Health and Human Services website so that doctors can access the information. Until that time our website, lists some of the best resources for medical professionals who want to learn more about delivering a new diagnosis. http://www.dsaane.org/medical-professionals.html
The passage of this law shows that by actively advocating and collaborating with others in the Down syndrome community can accomplish great things!
For details about the LB 891, please refer to the following information.
Advocate for the Down Syndrome Diagnosis Information and Support Act.
Official Bill as Introduced
Down Syndrome Advocates in Action Nebraska, is a group for parents run by parents.