Editors at the Baltimore Sun say families of children with disabilities have reason to be doubtful about Gov. Sarah Palin’s pledge to be their “friend and advocate.”

What they need, first and foremost, is for politicians to put money where their mouth is — starting with support services and related community-based programs. Advocates estimate there are about 600,000 people nationwide on waiting lists for such benefits as job coaching, vocational rehabilitation, personnel assistants and respite care for exhausted caregivers.

… The candidates’ views on these matters are reflected on their Web sites. Mr. Obama’s includes a nine-page treatise on his plans to help the disabled, including full funding for special education. Mr. McCain’s 14 core campaign issues include the Second Amendment and the space program but not the disabled.

Mr. McCain still has time to come around on these issues and offer specific remedies in the weeks ahead. Having a poster mom for families caring for a disabled child on the ticket is not enough — particularly for aging seniors who can no longer care for middle-aged children. Friendship is nice, but families need a government willing to invest more in the future of children who require a little help if they are to live full and productive lives.

From Roll Call, Politico.com:

Roll Call and Politico profile the three members of Congress who have children with Down syndrome: Rep. Cathy McMorris Rodgers (R-Washington), Rep. Pete Sessions (R-Texas), and Del. Eleanor Holmes Norton (D-D.C.)

With Rep. Patrick Kennedy (D-R.I.), all are members of the Congressional Down Syndrome Caucus.

An excerpt from Roll Call:

The work-life debate has received heightened attention in the weeks since Alaska Gov. Sarah Palin was named the Republican vice presidential nominee. The mother of five has an infant son with Down syndrome, and as some wonder whether Palin can effectively govern while caring for her family, a handful of Members do just that every day.

McMorris Rodgers says she and her husband didn’t receive a diagnosis of Down syndrome until three days after son Cole’s birth, and she criticized the way she and her husband were briefed on “all the negative aspects” of the condition.

As a legislator, she has pushed legislation that would provide families with more comprehensive information on the risks and possibilities for those with special needs.

“As you start to get to know your baby, you realize that so much of the information is negative. You fail to get a balanced view of your child’s future,” she said.

Earlier posts here and here and here.

(Photo provided by the office of Rep. Cathy McMorris Rodgers)

Guest commentary:

By Rud and Ann Turnbull

To the disability community in America: Be cautious.

Governor Palin’s comments at her party’s convention bring to mind a famous line from Virgil’s Aeneid: “Timeo Danaos et donas ferentes”: I fear the Greeks even when bearing gifts.

On the one hand, Gov. Palin appealed to the hopes and fears of people with disabilities and their families by proclaiming she will be their friend and advocate in Washington.

On the other, she dismissed Sen. Obama’s experience as a community organizer. She asserted he bore no responsibility for his activities; she contrasted her roles as mayor and governor as freighted with responsibility.

Gov. Palin’s promise has understandable allure for the disability community. But words take on authentic meaning when buttressed by biography.

(more…)

From the Washington Post:

As a result of Sarah Palin’s candidacy, parents of children with Down syndrome are suddenly in the spotlight. They say they spend more time in doctors’ offices than most parents, endure stares from strangers, and are forced to advocate on behalf of their children. At the same time, they say that “raising a child with a disability can also unlock profound and uplifting truths about themselves, their children and the value of life in ways that others could never see.”

Philip and Adrianne Pedliken of Vienna, Virginia, say they love their son Ethan deeply, but “acknowledge that their lives are much harder, more emotionally wrenching and often lonely.”

Many parents also talk about how the phone never rings with invitations for a play date for their children or an offer to help carpool. Sometimes, they find themselves answering people who suggest that their child should never have been born.

… Just this summer, the (Pedliken) family succeeded in toilet-training Ethan, who will be 10 next month. Until then, nothing — strategies of behavioral therapists, covering the house with plastic sheeting — seemed to work.

“It was frustrating, not to mention expensive, to be diapering a child until he was almost 10 years old,” Philip Pedlikin said.

See also related story in the Washington Post: What is Down syndrome?

From the Richmond Post-Dispatch:

In the face of overwhelming opposition from parents, the Virginia Department of Education has backed down from a proposal that would limit parental consent for ending special education services.

The proposal would have allowed educators to end a student’s special education services without the approval of parents. The proposed change had been promoted as a way to bring special education funding under control, but had drawn objections from Gov. Timothy M. Kaine and Speaker of the House William J. Howell.

In public meetings around the state, the proposed rule change drew 77,000 comments from the public — the most ever recorded.

See earlier posts here and here.

From the Los Angeles Times and the [Toronto] Globe and Mail:

Andre Lalonde, executive vice president of the Society of Obstetricians and Gynecologists of Canada (SOGC), says he is concerned that abortions in the case of Down syndrome may decline as women follow the example of Sarah Palin. Palin’s infant son Trig was born after she received a prenatal diagnosis of Down syndrome. From the Globe and Mail:

As a vocal opponent of abortion, Ms. Palin’s widely discussed decision to keep her baby, knowing he would be born with the condition, may inadvertently influence other women who may lack the necessary emotional and financial support to do the same, according to Lalonde.

Dr. Lalonde said that above all else, women must be free to choose, and that popular messages to the contrary could have detrimental effects on women and their families.

The SOGC last year issued a recommendation that all pregnant women be offered screening for Down syndrome. It is estimated that 90 percent of women in Canada who receive a prenatal diagnosis of Down syndrome decide to abort their pregnancies.

Krista Flint, executive director of the Canadian Down Syndrome Association (CDSS), said doctors generally paint a very dark picture of life with Down syndrome during prenatal diagnoses. The CDSS has challenged the ethical implications of the recommendations by the obstetricians’ group.

“We know overwhelmingly the message families get is ‘Don’t have this baby, it will ruin your life,’” Flint says. “And I don’t think people would look at Sarah Palin and see a ruined life. Regardless of politics, I think it’s a good example.”

See earlier post: Airbrushing away diversity — Ottawa Citizen

UPDATE: The Los Angeles Times notes in a ‘For the record’ item that its story noted above “mischaracterized” Dr. Lalonde’s comments. The item says Dr. Lalonde was not concerned that abortions in general would drop as a result of Sarah Palin’s candidacy. Rather, he was concerned that “that women would be influenced by Gov. Palin’s decision to keep Down syndrome children that they were neither emotionally nor financially prepared to care for.” The Times story noted above has been removed from the newspaper’s website.

From Marlene Prange of Quarryville, PA:

September 9, 2008
Rally at Franklin & Marshall College in Lancaster, PA
Aleena R. Prange, 4, and Gov. Sarah Palin

With an hour to go before the speeches, little Aleena was getting tired of her perch on mom’s shoulders. Reluctantly, Marlene Prange surrendered their spot toward the front of the packed gym and went off to the sidelines so Aleena could play.

That’s when a member of Gov. Sarah Palin’s advance team approached Shirley Kullander, Marlene’s mother. She said she had noticed that Aleena had Down syndrome, and asked if they would like to come past security and meet Sarah Palin. From Marlene’s account:

“She said, “Awwww” and kind of melted when she saw Aleena. She asked her name and age. Then she hugged her. She actually got watery eyes.”

Marlene said she hopes Palin’s candidacy will bring better public awareness to people with Down syndrome. “I’m excited that people will not be so afraid, and will not think it’s the end of the world,” she said. Here’s her blog post about it.

Editor’s note:

Readers, if you’d like to have your snapshots included here, please send them to patricia@patriciaebauer.com. We’re looking for shots of people with Down syndrome alongside Sen. Obama, Sen. McCain, Sen. Biden or Gov. Palin.

Please enclose the following information: Your full name and city or town; where and when the photo was taken; IDs and relationships of the people in the photo (and ages, for kids), and a few lines about the circumstances. Please also let us know where we may contact you. By sending photos, you are granting permission for their publication.

Earlier campaign snapshots here.