Club 21 in the News:

The Centers for Disease Control and Prevention (CDC) and the National Birth Defects Prevention Network have published a study that updates national statistics regarding the prevalence of Down syndrome in the U.S.  Click here to read more about the study. 

The study indicates that there are about 6,000 diagnoses of Down syndrome each year in the United States.  One in every 691 babies is born with Down syndrome.  This is an increase from the previously reported statistic of 1 in every 733. 

Based on the new study, the National Down Syndrome Society (NDSS) will cite the new prevalence estimates on its website and other materials.  Click here to read the official position paper.

Rosa’s Law, a law that would remove the terms “mental retardation” and “mentally retarded” from federal health, education and labor policy and replace it with the term, “intellectual disability” and/or “individual with an intellectual disability” has been signed by President Obama and now becomes law.   The changes would occur as laws and documents come up for revision over the next several years.

Sen. Barbara Mikulski, D-Md., the bill’s sponsor stated:  “For far too long we have used hurtful words like ‘mental retardation’ or ‘MR’ in our federal statutes to refer to those living with intellectual disabilities.   Rosa’s Law will make a greatly-needed change that should have been made well before today — and it will encourage us to treat people the way they would like to be treated.”

The language does not change the rights of individuals with disabilities but requires use of a more acceptable term.  David Tolleson, Executive Director of NDSC states:  “While some may view Rosa’s Law as nothing more than ‘political correctness’, the truth is that language matters, particularly when it comes to governmental laws and policies.  One simple change of wording can positively impact how lawmakers and administrators approach legislation related to individuals with disabilities.”

Rosa’s Law is named for Rosa Marcellino, a Maryland girl with Down syndrome.