Writing on the AOLnews website, supermodel and lifestyle guru Kathy Ireland says funding for research into Down syndrome has been consistently reduced until it now accounts for less than 0.01 percent of the National Institutes of Health’s annual research budget. This must change, says Ireland. Her niece Polly has Down syndrome.

We are on the verge of medical breakthroughs with Down syndrome, and we can’t let it fall from our doctors’ hands.

… We are in a race to help those with DS. We must run side by side with them, assuring them that the Down syndrome funding cuts, which the National Institutes of Health has faced, are reversed now.

Would eliminate term ‘mentally retarded’ from federal law

Press releases from Sen. Barbara Mikulski, The ARC of the United States:

Acting unanimously, the House of Representatives last night approved a bill to remove the terms “mentally retarded” and “mental retardation” from federal education, health and labor laws. The measure, called “Rosas’ Law” in honor of a Maryland girl who has Down syndrome, has already passed the Senate and is expected to be signed into law by President Obama.

“This law is about families fighting for the respect and dignity of their loved ones,” said Sen. Barbara Mikulski (D-Md.), one of the measure’s sponsors. “This change will have a positive effect on more than 6 million Americans.” She said the law will make the language of federal law consistent with that used by the Centers for Disease Control and the United Nations, and will not affect any services, rights, responsibilities or educational opportunities for people with intellectual disabilities.

Rosa’s law substitutes the terms “intellectual disability” and “individual with an intellectual disability” for the earlier terms, now considered outdated and stigmatizing by many self-advocates and their families. It does not cover entitlement programs, which include SSI, Medicare, Medicaid and Social Security.

Peter V. Berns, CEO of The ARC of the United States, hailed the measure’s passage as “another historic milestone in our movement.”

“We understand that language plays a crucial role in how people with intellectual disabilities are perceived and treated in society,” Berns said in a statement. “Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.”

Press release from the National Down Syndrome Congress:

John Shaffner, chairman and CEO of the Academy of Television Arts & Sciences, has pledged that the Emmy-nominated song “Down Syndrome Girl” will not be aired on the primetime Emmy telecast or the broadcast of the Emmy’s Creative Arts awards.

Shaffner’s promise came in response to a letter of protest from the NDSC’s Self Advocate Council, which characterized the musical number as “hateful” and said its recognition by the Academy of Television Arts and Sciences carried the unjust message that “those of us who have Down syndrome are less valuable than others and deserve ridicule and abuse because of our disability.”

Shaffner thanked the group for sharing its concerns about the song. “The Television Academy is always sensitive to these types of issues and had already planned not to air this song,” Shaffner wrote.

The musical number, which appeared this spring on Fox Television’s “Family Guy,” describes a character with Down syndrome as a “little whore” who is “poorly grooming,” “as-of-Monday-shoelace-tying,” “just a little crooked walking” and “a special person’s wettest dream.” The lyrics also include a reference to the “shorty bus.”

It was nominated in the category “Outstanding Original Music and Lyrics” but lost out to Randy Newman’s music and lyrics for “When I’m Gone” from the finale of USA Network’s “Monk.”

From the Melbourne, Australia, Herald Sun:

Health Department officials in the Australian state of Victoria report that the number of women who terminated their pregnancies after receiving a prenatal diagnosis of Down syndrome almost tripled in the decade ending in 2006.

Government figures showed 146 abortions for Down syndrome in 2006, including five late term abortions, compared with 54 in 1995.

They also show more than twice as many babies with Down syndrome were aborted than were born with the condition — in 2006 146 were terminated and 62 were born.

A spokeswoman for the Royal Australian and New Zealand College of Obstetricians and Gynecologists attributed the increase to more advanced screening.

Related story:

Two couples suing doctors for failing to diagnose Down syndrome — Melbourne, Australia, Herald-Sun

Two Victorian couples are suing doctors for failing to diagnose Down Syndrome in their unborn babies, denying them the chance to terminate the pregnancies.

The couples are claiming unspecified damages for economic loss, continuing costs of care of the children, and “psychiatric injury”.

Both say they would have aborted their pregnancies had they been told their children would be born with Down Syndrome.

From the Brockton, Mass., Enterprise News:

The parents of a seventh grade student with Down syndrome are trying to get their Massachusetts school district to stop using a science textbook with language they consider offensive.

The book, a standard seventh-grade science text in Bridgewater Middle School,  uses the term “mental retardation” and characterizes Down syndrome as a genetic “error.” Parents Tom and Pauline Lewis said they fear the book’s language could encourage bullying of their son and other children with Down syndrome. Tom Lewis is a special education teacher in Boston.

A district committee declined the Lewis’ request that the text be removed from the classroom, and suggested instead that teachers “create lessons for ‘teachable moments’ when the term ‘mental retardation’ arises.” The family has appealed.

Related stories:

• RI lawmakers remove ‘retardation’ from agency name — ABC6, Providence
• New Jersey looks to remove words such as ‘retarded’ and ‘idiot’ from state law — newjerseynewsroom.com
• Name change at NY agency to remove ‘retardation’ — New York Times

Says she lied to investors about prenatal DS test

From a Los Angeles Times blog,  San Diego Union-Tribune, Business Week, Motley Fool:

The former head of research and development at Sequenom Corp. has pleaded guilty to lying to investors and analysts about a company effort to develop a noninvasive prenatal screening test for Down syndrome.

As part of a plea bargain, Elizabeth Dragon admitted she was part of a conspiracy to inflate the company’s stock price, and agreed to help prosecutors in related cases. She admitted to making false claims to investors and analysts about the effectiveness of the test, and said she and others manipulated data to make the test appear more accurate than it was. Dragon’s sentencing is set for August 30.

“Elizabeth Dragon knew the truth about Sequenom’s Down syndrome test, yet she told the public it was a near-perfect success,” said Rosalind Tyson, who heads the Los Angeles office of the Securities and Exchange Commission. “Her actions misled investors with exaggerated information about a significant new product that never materialized.”

On a segment of ABC’s “What Would You Do?” that aired Wednesday, customers in a Brooklyn grocery store found themselves trapped in a checkout line behind rude shoppers who berated a bagger with Down syndrome. The customers didn’t know that the clerk and the rude shoppers were all actors. Hidden cameras recorded everyone’s reactions to abusive language that the show described as happening “all too often” in real life.

“You’re absolutely retarded, dude! You have to go faster,” an actress shouted.

While some customers ignored the abuse, others spoke up in defense of the clerk, played by actor Josh Eber. “He’s a person, the same as you and I, with feelings,” said a woman identified as “Karen”, a teacher who has taught children with disabilities. “Everybody deserves an education. Everybody deserves a job, and everybody deserves a chance in this life. And you should be ashamed of yourself.”

Madeleine Will of the National Down Syndrome Society underscored the hurtfulness of insults like the word “retard.” She called on the public to speak up against verbal abuse.

“When we’re silent, our silence condones the language,” she said. “It’s important to say, again and again, this is wrong, this is not fair, this is not how we treat other people.”