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Archive for the ‘Down syndrome’ Category

Palin links disability advocacy with pro-life stance

Saturday, October 11th, 2008

From WKYC-TV [Cleveland], and Foxnews.com:

At a campaign stop Friday in North Olmstead, Ohio, Sarah Palin drew a connection between her pledge to advocate for people with disabilities and her opposition to abortion.

“With John McCain and me in the White House, they’ll (people with disabilities will) be a priority, because every life is going to be cherished, and we’ll make sure that needs are met and that we’re manifesting our commitment to those who have challenges that others perhaps have not had to face yet,” she said in an interview with WKYC-TV.

The comments came in connection with Palin’s appearance in a ribbon-cutting ceremony at the opening of a center for adults with disabilities. The Michael T. George residence was built by Cleveland-area businessman Tony George and named for his five-year-old son, who has Down syndrome.

… “My belief and John McCain’s belief is that a culture of life is best for America where every innocent human life is recognized as having great potential and great promise to make this world a better place.”

Video here.

(Screenshot from WKYC-TV)

Opinion: Informed consent needed in prenatal DS testing

Friday, October 10th, 2008

Mark Henderson, science editor of the [UK] Times, says the prospect of a reliable and risk-free prenatal blood test for Down syndrome points up the need to educate medical professionals on how to counsel prospective parents about the tests and the results. An excerpt:

At present, only about 32,000 high-risk women [in the UK] are offered tests that diagnose Down’s reliably, after full counseling about the implications. When the new procedure comes in, 20 times this number will be suitable for such accurate diagnosis. There is a real danger that without detailed planning, not all of them will get the counseling they need to make informed decisions about how much they want to know, and how they might deal with unwelcome news.

The success of a Down’s blood test will require more than clever science. Just as important will be careful thought about how it will be delivered by health professionals, and explained to pregnant women and their partners.

Columnist raps public ‘intolerance for imperfection’

Friday, October 10th, 2008

Writing in the American Spectator, Daniel Allott says high rates of selective abortion of fetuses with Down syndrome reveal “a culture increasingly unaccepting and intolerant of children with developmental disabilities, who often face brutal and sometimes deadly prejudice.”

Allott says a fundamental misconception about the lives of people with intellectual disabilities is at the root of prejudice against them. He says the Prenatally and Postnatally Diagnosed Conditions Awareness Act, signed this week by the president, is needed to give parents accurate information about what it’s like to raise a child with a developmental disability. An excerpt:

People with developmental disabilities challenge our view of the world. Because they require more patience and self-giving, they can be sources of growth, tolerance, joy and hope to those they encounter. Unlocking these powerful truths is especially important in a time when superficial, exploitative and selfish relationships have become all too common.

Special needs planning — What happens when parents die?

Thursday, October 9th, 2008

From the Wall Street Journal:

A growing number of financial service companies are springing up to help parents provide for the future care of their children with disabilities. They help navigate the maze of federal and state programs, and assist parents in setting up trusts, coordinating estate plans, and educating future caregivers.

These tasks have become increasingly vital as people with disabilities are living longer than ever before, frequently outliving the parents who support them.

Miami lawyer Barry Nelson (far left) set up a special-needs trust for his fourteen-year-old son Jesse, who has autism. The trust will be funded by life insurance when Nelson dies, and can be used to pay for expenses beyond what Medicaid or SSI would pay for.

Nelson says a special-needs trust “gives me — and it gives every parent — peace of mind.”

A sidebar provides a list of financial planning resources.

(Wall Street Journal photo)

Scientists promise ’safer’ prenatal test for Down syndrome

Monday, October 6th, 2008

Stanford test performs accurately on 18 samples

From the BBC, San Jose Mercury News, New York Times, Nature News, Stanford University press release on Marketwatch:

Stanford University researchers say they have designed a new prenatal test that uses a maternal blood sample and would be much safer than current methods like amniocentesis, according to a study published Monday.

Current prenatal genetic tests like amniocentesis and chorionic villus sampling (CVS) carry a small but significant risk of miscarriage, with estimates ranging from one-half a percent to two percent. “Right now, people are risking their pregnancies to get this information,” said Yair J. Blumenfeld, a Stanford postdoctoral medical fellow and co-author of the paper describing the technique.

Stanford scientists say their technique will allow parents to spot Down syndrome and other genetic conditions earlier in pregnancy than with amnio and CVS, avoiding the risk of miscarriage.

(more…)

Cardinal hails Trig as symbol of antiabortion fight

Monday, October 6th, 2008

From the Boston Globe:

Cardinal Sean P. O’Malley, the Roman Catholic archbishop of Boston, praised Sarah Palin’s son Trig at the annual “Respect Life March” on the Boston Commons yesterday as he urged Americans to fight against abortion and what he termed “the culture of death.”

In coverage of the event, Boston Globe religion writer Michael Paulson identified Trig Palin as “the child with Down syndrome whom Governor Sarah Palin chose not to abort.” An excerpt:

“I very seldom get to see any television, but I did watch part of the political conventions, and for me the star of the conventions was Trig Palin, whose mother said that he was ‘beautiful’ and ‘perfect,’ ” O’Malley said. “And when his little sister used that spit to slick his hair down, I mean, I stood up and applauded.”

O’Malley’s reference to the 5-month-old child comes in a political season in which the role of the abortion issue for Catholic voters has become more contested than ever.

With video.

See also Paulson’s “Articles of Faith” blog.

Op-ed: Trig is turning the tide

Friday, October 3rd, 2008

By Dennis Teti, writing in the National Review:

What is it about powerless infants that brings out the best and the worst in human beings? I ask, naturally, because of the astonishing responses to Trig, Sarah Palin’s baby, who has Down syndrome. What can we learn from the warm public response — and the antipathy of powerful elites?

… the rhetoric about the “freedom to choose” has become less convincing with time. In terms of popular opinion, in the U.S. at least, those who would use that slogan to compel women to abort children with health conditions are farther away from their goal now than they were ten or 15 years ago. The surprising and overwhelming public embrace of Sarah Palin testifies to the growing understanding of the implications for the unborn of the true rhetoric of equal rights.

See also:

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This blog attempts to explore what we know about disability, and to chronicle the efforts of people who are seeking new ways to address familiar challenges.

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