Ohio passes the Down Syndrome Information Act

Ohio Gov. Kasich signs Down Syndrome Information Act with members of Down syndrome support groups

Closing out 2014, Ohio became the latest state to pass the Down Syndrome Information Act, making it the fifth state to do so in 2014 and seventh overall.

Right before Christmas, representatives of the Down Syndrome Association of Greater Cincinnati (DSAGC) and the Down Syndrome Association of Central Ohio (DSACO) attended a bill signing ceremony with Ohio Governor John Kasich (pictured above). The law passed without any vote cast against it, as has happened in most states that have passed the law. The full text of the law can be viewed here.

Ohio joins Pennsylvania, Maryland, Delaware, Louisiana, Kentucky, and Massachusetts in passing a law requiring information to be provided with any test result, pre- or post-natal, for Down syndrome. Like each state, Ohio made the language a bit individual to its version of the Act.

Pennsylvania requires the information to be made available on-line. Maryland requires the State to provide the information but leaves it to the physician’s discretion whether to deliver it.  Louisiana forbids any mention of abortion in the materials. For its version, Ohio requires that parents receive a “sheet” containing up-to-date information and referral to local support organizations.

The Ohio implementing agency could save itself some time and model its information sheet after the webpage created to implement the Kentucky version of the law, listing the resources recognized by professional guidelines and the contact information for the local support organizations. All Ohio would need to do is swap out the Kentucky groups for the Ohio Down syndrome support organizations. Then, Ohio could follow Maryland’s lead in sending a statewide notice to all providers delivering test results to alert them to the new law and information. And, optimally, Ohio then would follow Massachusetts which committed state funds to purchase the recognized materials for parents to be provided to them.

These three steps:

1. accurate, professionally-recognized materials;
2. notice to providers by state officials of law’s requirements; and
3. appropriating funds to deliver materials

have been shown to be the most effective implementation of the Down Syndrome Information Act. On the other hand, materials that cannot cover all options, or are created by the state agency itself (as in the case of Louisiana and Pennsylvania, respectively) have resulted in the non-delivery of professionally-recognized resources or delivery of unbalanced information.

I was fortunate to be included in the beginning stages of the Ohio effort and consulted as needed through the process. I’m very pleased to see that the effort was successful and hope it will have a positive effect in improving the patient experience in receiving a test result for Down syndrome from health professionals.

Regardless of the outcome of tonight’s first ever College Football Championship Game, where The Ohio State University faces Oregon, today we can say:

Congratulations, Buckeyes!