Pennsylvania passes the Down Syndrome Information Act

Just like Keystone promised “bottled beer taste in a can” and didn’t deliver, The Keystone State’s Down Syndrome Information Act does not deliver accurate information.

In 2014, Pennsylvania joined the growing number of states passing the Down Syndrome Information Act. It’s implementation needs to be improved.

In 2012, Massachusetts passed the law. In 2013, Kentucky passed it. And, then, in 2014, Maryland, Delaware, Louisiana, and Pennsylvania passed their versions of the Down Syndrome Information Act.

Campbell North reported on the law’s passage in the Pittsburgh Post-Gazette.  Dr. Kishore Vellody, medical director of the Down Syndrome Center at Children’s Hospital of Pittsburgh of UPMC, is featured in the article:

“Published data shows that less than half of people felt like their training was accurate in communicating prenatal diagnosis,” he said. “Even in my med school textbooks, a lot of things we learned about Down syndrome was inaccurate because it takes so long to have them updated.”

* * *

“Our goal in medicine is to make sure people receive balanced and accurate information when they make decisions about health care,” Dr. Vellody said. “That’s why we support endeavors to help expectant parents.”

Video of the bill signing can be viewed at this link. It runs just under a minute.

However, a website styled as addressing misinformation about reproductive health actually misinforms on the purpose of the Down Syndrome Information Act, recently enacted by Pennsylvania and called “Chloe’s Law” there. The Jerome Lejeune Foundation USA provides a much needed reality check explaining:

Chloe’s Law implements the guidelines physicians were supposed to be following but have not done so consistently. This law is a caring law that will improve patient care. That is why it has received the broad, near unanimous bipartisan support it deserves. The Down syndrome community becomes uneasy when it seems certain groups are attempting to suppress information on the positive experiences of having a child with Down syndrome. Let’s stand for providing women information, not for denying them information about a condition that remains too often misunderstood – even within the medical community.

Moreover, the expressed criticism is not based on what information Pennsylvania ultimately created and now requires to be passed out–and, unfortunately, that information is even worse than the criticism of it.

The Keystone State’s bad Down syndrome information

Pennsylvania’s Department of Health (DOH) produced a fact sheet to implement the Act. To put it bluntly: it is abysmal.

Titled “Down Syndrome Prenatal/Postnatal Education,” the DOH thought this was the way to provide accurate, up-to-date information about Down syndrome to expectant moms in need of care and support:

• There is no known cause for Down syndrome but feelings of guilt are common by parents wondering if they have done something to cause their child to have Down syndrome. Pennsylvania believes it necessary to share at the outset that: “an individual [with Down syndrome] most often inherits two copies of chromosome 21 from the mother and one chromosome 21 from the father”.
• Pennsylvania phrases a bullet point “What are the risk factors for conceiving a child with Down syndrome?” As Dr. Skotko has cautioned, “risks” are typically something to be avoided, and using such loaded language expresses a bias against a life with Down syndrome.
• In one of the more gag-inducing phrases, the Dept. of Health advises that “the severity of Down syndrome ranges from mild to severe”. (emphasis mine). No one can predict how a child will be affected, and current guidelines recognize the range as being from “mild to moderate” not “severe”.
• The sheet goes on to comment on how “[t]he average brain size of a person with Down syndrome is small” and lists a litany of attendant health complications, including cancer and that “[a]bout half of individuals with Down syndrome have coexisting psychiatric or behavior conditions”.
• Not until the last page are parents shown a picture–the only actual photograph–of a child with Down syndrome. The child is a male caucasian. The only other depiction of Down syndrome is this artistic rendering:

• Finally, the DOH document ends with resources only listing national organizations and Pennsylvania public agencies. There is not a single Pennsylvania local support organization listed. Not the groups in Bucks County, Centre County, Lancaster County, or the 17 other local organizations in Pennsylvania.
• And, confusingly, there is another information sheet available on the DOH website, but it is not much better.

There was a lot of fanfare about the passage of the Pennsylvania Act. But, nothing in the Pennsylvania information gives an accurate glimpse of what kind of life a child with Down syndrome is living. The Pennsylvania Act instead gives state sanction to how parents have been incorrectly counseled by the medical community: an emphasis on medical complications, inaccurate predictions of what their child may be able to do, and no accurate images provided of a child living a life with Down syndrome.

Pennsylvania currently is an example of the best intentions leading to bad outcomes. The material Pennsylvania is providing women is precisely the medically-focused, pejoratively-worded, objectified depiction of individuals with Down syndrome that expectant mothers have complained of being counseled about for years. It needs to be scrapped.

This post was revised and updated on March 11, 2016.