Empowering Hoosier parents

Posted by: Courtney Scott  | Friday, February 13, 2015

With the halfway point of the legislative session quickly approaching, many bills are making their way out of committees and onto the House floor. One of these bills, which I will share with you today, is a bill that I authored regarding prenatal diagnoses.

You might be thinking that my experience in the healthcare industry is what prompted me to author this legislation. However, like many pieces of legislation, this came about as a result of conversations with my constituents.

In particular, I had the honor of meeting Nina Fuller and her daughter, Hope at a community event in Chandler. Nina is the president and founder of S.M.I.L.E. on Down syndrome, a Down syndrome support group in Evansville.

Nina found out during her pregnancy that her child had Down syndrome. However, all she could find was outdated resource books. As a result, she has used her own personal experiences to help other parents gain access to important information on their child’s condition.

After hearing of her work, I too wanted to make a difference, and thankfully, as a state representative, I have that opportunity. That is why I authored House Bill (HB) 1093 to require the Indiana State Department of Health (ISDH) to collect certain information regarding the prenatal diagnosis of Down syndrome and any other prenatally diagnosed condition.

This information will then be disseminated by health facilities and health care providers to parents who receive a prenatal diagnosis for one of these conditions. The information must include a brief description as well as contact information for state and local advocacy organizations that advocate for people with intellectual and other developmental disabilities.

Ultimately, my goal in authoring this legislation is to empower parents with the information they need and deserve regarding the health and wellbeing of their child. While this already occurs at many large hospitals, including Deaconess Women’s Hospital and St. Mary’s Medical Center, many smaller hospitals simply do not have their own materials to distribute. This bill will ensure that parents across the state will receive consistent information no matter which healthcare provider they chose to visit.

This bill would not only require ISDH to approve and compile the information, but also make it available online for immediate access upon diagnosis. This would allow parents to make a more informed decision upfront about how they want to approach dealing with their child’s condition. Since the information is constantly being updated, the ISDH website would be able to contain the most up-to-date resources.

I am proud to report that on Monday, Feb. 9, this legislation was passed unanimously by the Indiana House of Representatives. Now, as we reach the halfway point, this legislation will move over to the Senate for further consideration and debate. I am proud to be a part of this and believe it is the least we can do for our Hoosier parents so that they, not the doctors, are able to make the most informed decisions for their family.

If you have any questions or comments regarding this bill or any other pertinent matters, please do not hesitate to contact me at 317-232-9833.

-30-