On December 19, Ohio passed the Down Syndrome Information Act, which requires medical professionals to distribute up-to-date, evidence-based information on Down syndrome to parents who receive the diagnosis, either prenatally or after birth, that their child has Down syndrome (DS). Included in the required material is contact information for support organizations and local resources available to the parents.
The Down Syndrome Information Act (Sub. HB 552), sponsored by Rep. Peter Stautberg, was signed into law along with 39 other pieces of legislation by Governor John Kasich last Friday. The bill passed the House and Senate both times with no opposing votes this November and mid-December.
The new law requires that Ohio’s Department of Health create a Down syndrome information sheet that includes all of the following:
- A description of Down syndrome, including its causes, effects on development, and potential complications;
- Diagnostic tests;
- Options for treatment and therapy;
- Contact information for local, state, and national organizations that provide Down syndrome educational and support services and programs.
Additionally, the bill elaborates that the included medical information should be “current and based on medical evidence” and that it should be reviewed and updated periodically by the health department. The sheet must also be published for the general public on the department’s web site.
Because there have been many recent developments and ongoing research to improve the lives of those with DS, this “pro-information” bill gives parents a more accurate idea of what to expect. Today, as Jerome Lejeune Foundation USA president Mark Bradford points out, individuals with DS live to an average of 60 years old, whereas just a generation ago, that average was only 25 years old, according to Dr. Brian Skotko, co-director of the Down Syndrome Program at the Massachusetts General Hospital.
Meanwhile, some parents have reported that their doctors stated as fact that their children with DS won’t live long or accomplish much. Examples abound to the contrary with the impact of early intervention therapies and support programs. From the perspective of individuals with DS, Dr. Skotko found in his 2013 study that 99% of his respondents with DS are happy with their lives and 97% like who they are. Moreover, 99% of parents said they love their child with DS, among other positive findings.
Yet it is no secret that a devastating majority of unborn children diagnosed with Down syndrome are aborted in the United States – between 61 and 93 percent – depending on the study. Research has shown that many parents who receive a prenatal diagnosis of DS were not even presented with the option of carrying the child to term while discussing with the doctor. A 2000 study published in the journal Prenatal Testing and Disability Rights revealed that a quarter of doctors delivering a DS diagnosis admitted trying to sway the mother on whether to keep or abort her child, and usually encouraged the mother towards abortion. A 2007 survey conducted in the Netherlands found that of the 71 women who chose abortion after receiving a DS diagnosis, 34% said that continuing the pregnancy was not raised as a possible option. Furthermore, there is the potential for expanded disability-selective abortion as earlier and non-invasive prenatal screening technologies are developed and popularized.
For this reason, both Down syndrome advocacy groups and pro-life organizations alike celebrate the passage of the Down Syndrome Information Act. The Down Syndrome Association of Greater Cincinnati says: “The reason this bill is so crucial is because many health care providers continue to rely on old information about Down syndrome and are unequipped to appropriately deliver a Down syndrome prenatal or postnatal diagnosis.” Earlier last week, Ohio Right to Life executive director Stephanie Ranade Krider also praised the bill’s passage through the General Assembly along with five other pro-life initiatives saying, “This is what ‘building a culture of life’ looks like.” She observed that the bills would “ensure that Ohio’s children are safe inside the womb and out, and that their parents are empowered to make healthy, life-giving decisions.”
Other states that have recently passed similar DS legislation include: Delaware, Kentucky, Louisiana, Maryland, Massachusetts and Pennsylvania. A New Jersey bill was also introduced in May.
In his sponsor testimony before the Senate Medicaid, Health and Human Services Committee in December, Rep. Stautberg shared movingly, “[T]he parents of children with Down syndrome will tell you that although there are challenges that come with raising a child with Down syndrome, these are wonderful and precious children and there are numerous wonderful and joyous occasions that come with raising any child.” Would that this insight continue to be reflected in more life-affirming legislation across the country.
Genevieve Plaster is a research assistant for the Charlotte Lozier Institute.