From the [Toronto, Canada] National Post:

Barbara Farlow and her husband Timothy are facing what is expected to be the end of their legal challenge to Toronto’s Hospital for Sick Children over the 2005 death of their daughter Annie, who had Trisomy 13. If a judge rules today that the case cannot be heard in small claims court, as expected, the Farlows have said they will withdraw their challenge for lack of funding.

Barbara Farlow has claimed that the hospital denied Annie proper treatment, issued a “do not resuscitate” order without her parents’ consent, and gave her a lethal dose of painkillers as part of  an unspoken policy to deny life-saving treatment in the case of infants with genetic disorders.

She says she wishes not to blame doctors but to provoke a broader discussion about the discriminatory policies used to treat children with disabilities.

[Barbara Farlow] said the trend in genetic screening for birth defects is “discriminatory,” in that people who choose to terminate genetically abnormal pregnancies are offered care and support, but those who choose not to are “on their own.” Once Annie was born, she alleges, she was falsely told doctors would provide life-saving care for her respiratory distress and other ailments related to Trisomy 13, when in fact, she alleges, they intended to let her die naturally.

Earlier posts here and here.

(Photo from the National Post)

From the Toronto [Ontario] Star, Global News Canada:

The parents of Annie Farlow, an infant who died at an Toronto hospital in 2005, are pressing a claim before the Ontario Human Rights Tribunal alleging that their daughter received inadequate care because the hospital withholds life-saving treatment from infants with disabilities.

Barbara and Tim Farlow say their daughter, who was born with Trisomy 13, was admitted to Toronto’s Hospital for Sick Children with breathing problems but did not receive proper care because a “do not resuscitate” order was issued without their knowledge or consent.

The Farlows’ concerns are similar to those raised by the Wallace family last week, who alleged that staff members at the same hospital suggested that they stop feeding their daughter Kaylee and let her starve because she has a rare brain disorder. Jason Wallace said he was told that the hospital had to consider how much money Kaylee’s care might cost.

(more…)

‘Left out in the cold’ says MDs’ attitudes pose barrier to health care access

From the Boston Globe:

A new study by the Arc of Massachusetts finds that many disabled adults face long waits finding medical care and thus aren’t treated properly for common adult conditions.

Among other reasons, the report said that many internists avoid disabled patients because of uneasiness with them. Also, many doctors feel they are not reimbursed adequately by insurance companies for the time it takes to work with these patients. “Doctors avoid them,” said Leo Sarkissian, executive director of the Arc.

The study, “Left Out in the Cold: Health Care Experiences of Adults with Intellectual and Developmental Disabilities in Massachusetts,” recommended that the state call for added training for doctors.

(Above: Dr. Dan Palant, a pediatrician in Lexington, still treats longtime patient Shalom Lowell, who is 26 and has Down syndrome.  Boston Globe photo)

UPDATE:

See editorial The disabled need doctors — Boston Globe

(Photo from Hartford Courant)

Lots more about the continuing “Tropic Thunder” controversy. We’ll be following it throughout the day. Let’s start here.

Stiller defends “Thunder” on the CBS Early Show. With video. Stiller says the movie is a comedy, and that people should view it in context and lighten up. (Note: Robert Downey Jr. also appeared on ABC Good Morning America, but didn’t discuss the controversy over the word “retard.” He says the filmmakers made a conscious effort to avoid offending people with racial humor involving his character, which he played in blackface.)

I appeared yesterday on The Morning Show with Mike and Juliet, a national Fox network program, along with David Tolleson, executive director of the National Down Syndrome Congress; Eddie Barbanell, one of the stars of “The Ringer,” and Gitesh Pandya of Boxofficeguru.com. David, Eddie and I talked about why the disability community views the word ‘retard’ as hurtful. Gitesh said that protests add to the film’s appeal at the box office. Eddie’s comments definitely provided the high point of the segment. With video.

Eddie also appeared with Tim Shriver on Fox & Friends. (With video.) An excerpt from Shriver’s remarks:

We’re not questioning Ben Stiller’s intent. We’re questioning and challenging the content. We don’t know what he was thinking when he was writing. We didn’t have people on the set. Nobody invited people with intellectual disabilities to screen the film in the early days. Nobody asked us to see whether this movie crossed the line. They did ask other groups. They did not ask for the voice of people with special needs.

Film critics stand firm against ‘Tropic Thunder’ protests by advocates for the disabled in the Los Angeles Times. In a wrapup of reviews from 11 media outlets, John Horn notes: “Quite a few film critics appear to be agreeing with the studios and the filmmaker, not the protesters.” Includes excerpts from reviews in Salon.com, the San Francisco Chronicle, Washington Post, New York Times, Baltimore Sun, Los Angeles Times, MTV and elsewhere.

Disabilities just aren’t funny, an op-ed by Jim Flanigan in the Albany [NY] Times Union. The executive director of the Rensselaer Arc says the movie is a “turkey” and urges people to stay home. An excerpt:

The people responsible for “Tropic Thunder” claim that they were equally offensive to many groups. The movie does make fun of actors, egotistical producers, farts, agents, war movies filled with explosions and drug dealers, all of which could be considered fair game. By adding people with disabilities to this mix, Stiller, Dream Works and Paramount are sending a not too subtle message to their young audience that they, too, are fair game.

Funny or offensive? Blackface, ‘retard’ jokes may shoot down ‘Tropic Thunder‘ — Q&A with Slate.com reviewer Dana Stevens on washingtonpost.com

Also:

Protesters speak out against ‘Tropic Thunder’ film – Hartford Courant blog

‘R-Word’ sets off protests — Chicago Tribune

Letters:

• The R-word isn’t funny — Let’s give it a rest –in the Tallahassee Democrat
• Slurs are unacceptable — in the New Orleans Times-Picayune

A thought-provoking piece by Ann-Marie Rosland, MD, in the Journal of the American Medical Association (subscription or $15 purchase required):

Dr. Rosland tells the story of her “aunt Jean,” who was not offered chemotherapy when she was diagnosed with metastatic colon cancer. Instead, the oncologist proposed only that she be kept as comfortable as possible.

Dr. Rosland thinks the oncologist may have made some biased decisions about her aunt’s care based on Jean’s unusual physical appearance. Jean is a very tiny woman who has a rare genetic disorder; she also has a very full life, a job and many friends, none of which was obvious to the doctors.

The episode made Dr. Rosland realize that attitudinal barriers can prevent people with disabilities from getting the health care they need.

(more…)

By Laura Landro in the Wall Street Journal (registration required):

As the ranks of cancer survivors grow to more than 10 million in the U.S., so does concern that medical providers aren’t doing enough to link patients and families to resources they need to face the physical and psychological effects of cancer — from fatigue and memory loss to depression, anxiety, sexual dysfunction and pain.

Now, leading cancer-advocacy groups, major cancer centers, insurance companies and oncology medical societies are stepping up efforts to help, with new programs to provide so-called psychosocial services that aid patients, families and health-care providers in managing the myriad psychological and social aspects of cancer.

The new push follows a report from the Institute of Medicine that found health-care providers often fail to provide needed support to patients.

“Cancer Care for the Whole Patient,” a report from IOM that provides information about free patient support programs around the country, is available free at www.IOM.edu.

From the Ottowa Citizen:Self-advocate Stephen Shore, speaking at an autism conference, says society should value people with autism for their gifts and abilities. He said it is unproductive for parents to deny their children’s diagnosis. (more…)