Special education's Hager steps down

John H. Hager, the assistant secretary who headed the office of special education and rehabilitative services at the federal Department of Education, has resigned to become chairman of the Virginia Republican State Central Committee, writes Education Week. Hager, a former lieutenant governor of Virginia, had occupied the position since 2004.

Under construction

A word to the wise: we're in the process of moving to a new website. With luck, the change will be completed soon. In the meantime, some links to old blog posts may not respond as expected. Your patience is appreciated.

From the in-box

John and Jane Roberts at his swearing-in ceremony in 2005 (AP Photo)

-- Doctors have started using the word "epilepsy" in connection with Chief Justice John G. Roberts Jr. , who stayed overnight in a hospital in Maine after experiencing a seizure on Monday. The seizure was similar to one he experienced 14 years ago, according to a court press release.

-- Parents of children with disabilities send a few choice words in response to a recent Wall Street Journal story on special ed -- words like "union thugs" and "overpaid fat-cat administrators."

-- Researchers find a link between pesticide exposure and autism, but caution that it's too early to draw conclusions.

-- Reviewing the new reality series "Flipping Out," Ginia Bellafonte says the show at last sets the record straight on obsessive compulsive disorder.

"For years now, the comic detective series “Monk” has equated O.C.D. with intuitive brilliance. We’ve long required a corrective interpretation, and “Flipping Out” is it. Mr. Lewis isn’t a genius of anything. He’s just a delusional jerk."

-- A growing number of professionals are prescribing a new treatment to patients with depression and anxiety. They call it "bibliotherapy." In lay language, that means: read a self-help book.

MS discovery sparks predictable treatment hopes

Scientists reporting in the New England Journal of Medicine report that three genes will offer new understanding to multiple sclerosis and may lead to new treatments. Skeptics among us will be forgiven for remembering that scientists had the same idea half a century ago, after French geneticist Jerome Lejeune identified the triple 21st chromosome in Trisomy 21 (Down syndrome). And have new treatments for Down syndrome materialized? Nope. There are, however, lots of very profitable prenatal screens and tests that are widely used to prevent the births of infants with Down syndrome.

Autism: Random? Or mom?

So does autism occur randomly? Or can it be traced genetically to mom? Two publications report two different views of an autism study from Cold Spring Harbor Laboratory.

Scientific American reports the scientists came up with a new genetic model for autism that divides families into two groups: those with a low likelihood of children with autism, and those with a higher likelihood.

"The team determined that most cases of autism arise from novel, spontaneous mutations passed down from one or both parents, resulting in large gaps in a person's genome often encompassing several genes, which are then disrupted or inactivated."

[Why those spontaneous mutations might be occurring at an estimated rate of one in every 150 children was not discussed.]

Newsday pointed instead at mom's role in conveying autism.

"What Wigler and his team found is a previously unrecognized pattern: Mothers, they say, acquire genetic mutations spontaneously that are specific to autism, which can be passed to their children. The mothers do not themselves exhibit traits of the disorder, but they have a 50 percent chance of transmitting the trait."

Once again, those refrigerator moms can't win.

Vouchers for kids with disabilities? Proceed with caution.

Yet another gee-whiz story today about the new law in Georgia that will provide vouchers to students with disabilities. The law has been promoted as a ticket out for families who want to escape their local schools, but little has been written about the law's weaknesses. Among them: private schools that aren't obligated to provide adequate curriculum or teaching for kids; stipends that won't cover the cost of private schools; and a real possibility that kids will be disconnected from their communities in segregated "special" schools. For some more realistic talk on the subject, see this earlier piece that cautions: let the buyer beware.

A little housekeeping

When the National Down Syndrome Congress meets in Kansas City this weekend for its annual confab, I'll be there. Look for me on Sunday, when I'll be giving a keynote address and a workshop on disability coverage in the media.

"My lovely son, the Hollywood star"

Max Lewis and his mother, Sandy.
Max was featured in "Notes on a Scandal." (Daily Mail photo)

Here's a refreshing first-person article by Sandy Lewis in the (UK) Daily Mail. Sandy's 13-year-old son Max played opposite Cate Blanchett in "Notes on a Scandal," recently released on DVD. Sandy documents her personal journey, starting with the emotional story of her son's Down syndrome diagnosis and ending with his successful star turn in Hollywood.

Along the way, Sandy learns to ignore the negative predictions of "professionals" and instead to focus on the many strenths of her son, a gifted performer whose smile can light up a room. She has harsh words for the nurse who counseled her to institutionalize her baby, and for the parents who complained when they found their children shared a classroom with Max. She's looking forward to a bright acting future for Max, who is eagerly seeking roles that are written for "a boy with lots of talent."

Thisislondon.co.uk has another story on Max. Key quote: he likes acting "because I'm brilliant at it." For more information about actors with Down syndrome, go to www.dsiam.org, an online service based in Los Angeles.

Is the workplace discriminating against parents?

Back in the day when my children were tiny, I worked 60-hour weeks as a senior editor at the LA Times Magazine. I depended heavily on the kindness of babysitters and preschool teachers, but the wheels pretty much stayed on the bus until Margaret was diagnosed with leukemia.

After that, it quickly became clear that my husband and I couldn’t manage two kids (one with both an intellectual disability and a chronic life-threatening illness) AND two high-powered jobs. If our family was going to survive, one of the jobs had to go. I left the Times -- a great loss for me, but one that seemed unavoidable.

Now that almost 20 years have passed, I often wonder whether the choices are less stark for parents who find themselves in similar circumstances today. Job or family? Family or job? Do people have to choose?

An in-depth story in today’s New York Times Magazine attempts to answer that question – and I guess I’m not surprised to learn things haven’t changed all that much for families despite the passage of landmark federal legislation. Or rather, things are much the same but a lot more lawyers are involved.

Writer Eyal Press introduces us to a woman who lost her job after her baby was born 16 weeks early, a man who was denied a request for time off to care for his ill wife and child, and a woman who was terminated after requesting a different work schedule so she could attend her son's therapy sessions. He traces lawsuit after lawsuit, discussing the issues in light of the 1993 Family and Medical Leave Act, the 1964 Civil Rights Act and the 1990 Americans with Disabilities Act.

Here’s how the headline frames the debate: “Do workers have a fundamental right to care for the families?” and “The latest front in the job-discrimination battle.”

More Sunday stories

-- Alzheimer's advocates counter misconceptions among minority communities. From the Boston Globe. The campaign is part of an effort to address cultural barriers to dementia care among African-Americans, Asian-Americans, Latinos and other groups.

"Driving the initiatives is concern that increasing numbers of African-Americans and Latinos are at high risk of Alzheimer's and other types of dementia because they have cardiovascular disease or diabetes, and because they are reaching their 60s, 70s and 80s, when dementia typically strikes."

-- Tips for planning vacations for people with disabilities. From the Dallas Morning News.

-- Harvard business school student with ALS (Lou Gehrig's disease) uses B-school techniques to encourage research into drug treatments. From the Boston Globe.

"Acting normal in a world that thinks you're not" -- on NPR

This American Life rebroadcasts an hour show called "Special Ed," featuring segments on people "who were told that they're different. Some of them were comfortable with it. Some didn't understand it. And some understood, but didn't like it." You can listen to the program or download the podcast here.

From the promo:

"Ira Glass talks with a bunch of special ed students. By and large, they thought of themselves as regular kids—until each experienced a shocking moment of revelation when they discovered that they were not the same as other kids, and that the other kids already knew that...and had known for a long time."

From one of the interviews:

“You kind of think of yourself as regular until these teachers and people in high authority are telling you you’re not the same as everybody else. So you have to figure out – so okay – why am I different?”

Law grants new rights to European travelers with disabilities

The BBC reports that a new law passed by the European parliament will improve air travel for people with disabilities. Under the new rules, airlines will no loger be able to refuse to fly people because they have disabilities.

ADA anniversary, continued

Just 17 years ago, our family was so preoccupied with Margaret's medical and educational needs that we didn't even notice the passage of the ADA. Similarly, any improvements that the ADA may have made to Margaret's life were certainly not obvious to us, as we struggled to get her a decent education in a largely unresponsive local school district.

With luck, this blog will help me catch up on what I missed, about the ADA as well as other disability-related developments. Stay tuned.

Meanwhile, here are a few more documents relating to the act's anniversary.
-- Proclamation from President Bush
-- Statement from Hillary Clinton, pledging to expand economic opportunity for individuals with disabilities
-- Statement from John Edwards, calling for Congress to strengthen the ADA

Diabetic and determined

Team Type 1 in training. Photo by New York Times

The New York Times reports that athletes with Type 1 diabetes are "blasting out of the starting gate in full force.

"Because of new technology, the emergence of companies that help them manage their illness, the rise of successful role models and sheer determination, they are running marathons, doing 100-mile bike rides, completing Ironmen — many with their doctor’s blessing."

Special education = costly education

A recent article in Forbes perpetuates the stereotypical view of special education as a benefit program for wealthy parents who sue school districts for costly and unnecessary programs.

"... the explosion in autism diagnoses has been a boon to lawyers who represent parents dissatisfied with the level of education their autistic kids are getting. Usually well-off, these parents don't hesitate to hire a lawyer to seek extra services or private school tuition."

The author recounts stories of million-dollar legal judgments, and suggests that autism diagnoses are booming because savvy parents and lawyers are seeking to profit by working the system. The article, by Mary Ellen Egan, can be purchased here.

Public buys harmful epilepsy "myths": study

A study from the University College London finds that many people believe potentially harmful myths about epilepsy. A third would put something in the mouth of a person having a seizure to stop them from swallowing their tongue -- but doing so could block their airways. The study authors suggest that the inaccurate depiction of epilepsy in films may be perpetuating these myths, and contributing to negative stereotypes surrounding the disease. From the BBC.

Related story: In a first-person report on National Public Radio, a woman describes the stigma she faced as a child with temporal lobe epilepsy. The stigma didn't end until brain surgery stopped her seizures, she says.

On the 17th anniversary of the ADA ...

-- From the National Council on Disability: "two reports on the Americans with Disabilities Act (ADA) ... show that ADA implementation is not only possible and practicable, it is also good for business."

-- From Radio Iowa: Democratic Sen. Tom Harkin intends to introduce language to "restore the intent" of the ADA, which he says no longer offers protections to people with epilepsy, diabetes and cancer.

-- From WUSA-TV in Washington, D.C. -- Legal advocates say courts have eroded the rights of people by allowing employers to say a person is too disabled to do the job, but not disabled enough to be protected. Majority Leader Steny Hoyer (D-Md.) and Rep. James Sensenbrenner (R-Wis.) say they will co-sponsor new legislation to restore the ADA to its previous mission.

Disability = Taboo

TV personality Al Roker recently got in trouble for making jokes about people with epilepsy. Mark Aranoff, writing in the Chronicle of Higher Education, uses the incident to examine why, in his view, disability is the most taboo subject in American culture. Here's his conclusion:

"Taboos reflect the preoccupations of the societies in which they are embedded. Disability will be verbally charged as long as we are preoccupied with the physical and emotional perfection that few of us can aspire to. We will either get over it and accept ourselves, as the Dove soap campaign for real beauty exhorts us to, or, in a future more reminiscent of another Woody Allen movie, Sleeper, we will have plastic surgery and Prozac for all, greeting more-serious disabilities with an exceedingly awkward silence."

Mark Aronoff is a professor of linguistics and associate provost at the State University of New York at Stony Brook.

Democrats shift policy on abortion

Stephanie Simon, writing in the Los Angeles Times, notes that Democrats in Congress and on the campaign trail are adopting some of the language and policy goals of the antiabortion movement.

"In a striking shift, Democrats in the House last week promoted a grab bag of programs designed not only to prevent unwanted pregnancies, but also to encourage women who do conceive to carry to term.

"The new approach embraces some measures long sought by antiabortion activists. It's designed to appeal to the broad centrist bloc of voters who don't want to criminalize every abortion — yet are troubled by a culture that accepts 1.3 million terminations a year."

The story also notes the return of the Kennedy-Brownback bill, which disappeared in committee in the last session of Congress and was reintroduced last week.

"Liberal stalwart Edward M. Kennedy (D-Mass.) is working with staunch conservative Sam Brownback (R-Kan.) to mandate more support services for pregnant women carrying fetuses with genetic abnormalities, such as Down syndrome. Focus on the Family, an influential conservative ministry, praises that bill as 'lifeaffirming.' "

Millions for "wrongful birth"

Amara Estrada, right, hugs the wife of her attorney after the judgment was announced.
Photo from the St. Petersburg Times

A jury has awarded a Florida couple more than $20 million in what is being called a "wrongful birth" case. The parents had alleged that a geneticist was negligent in failing to prenatally diagnose their child's genetic syndrome. They testified that they would have terminated the pregnancy had they known.

" ... because the doctor works for the University of South Florida, the family will have to persuade the Florida Legislature to award most of the money. State law caps negligence claims against government agencies at $200,000.

"Daniel and Amara Estrada claimed in the lawsuit that if their first child's condition - a genetic disorder called Smith-Lemli-Opitz syndrome - had been correctly diagnosed, a test would have indicated whether their second child would also be afflicted ...

"But, they say, Dr. Boris Kousseff, who treated their first son, Aiden, after his 2002 birth determined that the child's birth defects were not specific and did not diagnose Smith-Lemli-Opitz syndrome."

Related links:

-- From the St. Petersburg Times, this story:

"From the moment their son was born, Amara and Daniel Estrada knew he would suffer. Baby Aiden had webbed toes, a cleft palate, low-set ears, a small head and genitals so tiny doctors had a tough time determining his gender..."

-- Link to the Smith-Lemli-Opitz Foundation website.

Planned Kevorkian speech draws protests

Jack Kevorkian, shown in 1991 with his "suicide machine."
AP photo from New York Times.

A scheduled speaking engagement by Jack Kevorkian at the University of Florida is drawing protests from critics of euthanasia. Bobby Schindler, brother of Terri Schiavo, is organizing a petition drive seeking to get UF to withdraw its invitation to the man who has been called Doctor Death.

"The scheduled Oct. 11 appearance at UF will likely be his first paid public speaking engagement since his June 1 release from prison, according to his attorney. Kevorkian served eight years for second-degree murder in the poisoning of a man who had Lou Gehrig's disease."

Other recent coverage of Kevorkian includes:

-- An interview in the New York Times after his release from prison.

"But eight years behind bars and a strict list of promises to gain parole have done nothing to mellow the blunt, passionate, combative advocate for physician-assisted suicide. "

-- An interview by Detroit Free Press columnist Mitch Albom.

"After an hour, I knew I wouldn't want to go via Jack Kevorkian, a man for whom the world is bleak, happiness is rare, belief is a waste of time and life is a finite, meaningless entity. The act he champions may indeed be one of compassion, but how can it be delivered by such a cold, cold heart?"

-- A column in the Boston Globe, "Helping my Father Die," by Darshak Sanghavi.

"Dr. Jack Kevorkian was never an attractive poster child for dignified and comfortable deaths for the terminally ill. That's too bad, because Kevorkian was on to something important."

No genetic privacy? No problem.

Medical investor Esther Dyson explains why she feels comfortable exposing her genetic and medical information on the Internet. She acknowledges that she doesn't have deep secrets or vulnerabilities that might expose her or her relatives to stigma or loss of insurability, and wonders what transparency may mean to others who are "less fortunate."

No matter, she says; the broader spread of medical and personal information on the Internet and elsewhere is "inevitable." See her Wall Street Journal column here.

The next generation of bionic people

New Yorker staff writer Ben McGrath chronicles the life of Claudia Mitchell, a young woman who loses her arm in an accident and gets a bionic replacement. The story in the July 30 issue is available at newsstands, not on the Internet.

Schools beat back demands for special-ed services

Parents Face Long Odds Amid Cost Concerns

Daniel Golden writes in the Wall Street Journal about a national pattern of denial of claims for special education services, quoting disability advocates and parents.

They say administrative reviews in many parts of the U.S. overwhelmingly back school districts in disputes over paying for special-education services. State education departments, which have an interest in keeping down special-education costs, typically train or hire the hearing officers. Also, recent U.S. Supreme Court decisions and changes to federal law have made it harder for parents to win cases.

Although relatively few disputes between parents and school districts reach the hearing stage, the decisions set ground rules for how much extra assistance districts must provide disabled students, who comprise 14% of all public-school students. In recent years, schools have "mainstreamed" more students with disabilities in regular classrooms, hoping to benefit the children through interaction with nondisabled peers while saving money at the same time.

The battles reflect tension over the high cost of special education. In 1999-2000, the latest year for which figures are available, national spending on special education reached $50 billion, according to the Center for Special Education Finance, a nonprofit research group. In 2005-06, New York City's public school system alone spent $390 million on private education for disabled students considered unsuited to public school. Such tuition can cost $50,000 a year or more per pupil.

In China, children with disabilities are sold into slavery

A reporter explores the sale of children, often disabled, to work as beggars on the streets in China. The news follows stories earlier this summer about slave laborers, again often people with disabilities, who are forced to work in Chinese brick factories. How will these people be affected next year when Beijing hosts both the Olympics and Paralympics? From the (UK) Observer.

A helping hand for families living with chronic illness

The Los Angeles Times reports on three nonprofit websites that offer web pages to families with chronic illness, allowing them an easy and effective way to communicate with family and friends. Leading sites are Caringbridge.org, CarePages.com and theStatus.com. Families praise them for helping to promote a community of care around their loved ones.

Alzheimer's treatment seen

And while we're on the subject of doom, Alzheimer's style, British researchers report that an effective treatment may not be far off. From the (London) Evening Standard. Link here.

To headline writers: Two thumbs down

Nominations for least favorite headlines:

Doomed from birth to death. From the (Toronto, Canada) Globe and Mail. On a story about the link between Down syndrome and Alzheimer's disease. See it here.

While it is indeed tragic that individuals with Down syndrome have a greater chance of getting Alzheimer's than the general population, it seems highly insensitive and unnecessary for the headline writers to refer to them as "doomed." Many, many people with Down syndrome are happy and productive community members; others are trying to make the most of their situations. One wonders: would a story about Elizabeth Edwards, who is living with incurable cancer, have carried a headline referring to her as "doomed"?

When an extra chromosome is one too many: Corruption to genes passed down to the baby from his parents can cause a myriad of problems. From the (Malaysia) New Straits Times. Link here.

As if babies didn't have enough problems -- now they have to deal with corruption. And very long headlines.

Braille literacy drop called civil rights issue

The Christian Science Monitor reports that the number of Braille-literate children has dropped precipitously. It is estimated that between 12 and 20 percent of 55,000 legally blind children in the U.S. can read Braille, down from about 50 percent in the 1960s. Many believe the trend will provide a significant barrier to employment, as current studies indicate that at least 90 percent of the blind people in the U.S. who currently hold jobs are Braille literate.

"[Literacy] is the biggest single determinant of a person's ability to be successful," says Steven Rothstein, president of Perkins School for the blind in Watertown, Mass. … (He) considers the decline an "enormous crisis" requiring a civil rights movement for America's disabled.

… The decline in literacy is generally linked to the 1973 Rehabilitation Act, which mainstreamed blind students into public schools where teachers were often unprepared to teach them. Today about 85 percent of blind schoolchildren are enrolled in public schools.

The Zeitgeist

Current reporting on the r-word

A regional campaign chairman for Rudy Giuliani has come under fire for using the word “retarded” when referring to the National Association for the Advancement of Colored People. Former South Carolina congressman Arthur Ravenel Jr. referred to the NAACP as the “National Association for Retarded People” at a rally in support of the Confederate flag in the year 2000. The Democratic National Committee has labeled the comment as “racist.”

From the Wall Street Journal:

“Mr. Ravenel said he wasn't sorry about his remarks but didn't mean to give offense to the retarded. He has previously said that he mistakenly transposed the name of the civil-rights organization with an advocacy group for the mentally disabled with which he worked in the past.”

The anecdote is part of a larger WSJ wrapup on the GOP’s political troubles in the South. The DNC has demanded a denunciation from Giuliani. A column from the Greenville, S.C., News is here.
______

Celebrity Courtney Love, visiting London, was quoted criticizing the recently enacted British ban on smoking in bars, workplaces and public buildings. From the (UK) Sun.

Said Love: "The only place I can smoke in England is the Houses of Parliament! That's so retarded!"

______

Stats, as of July 21, 2007

From Youtube.com
Videos with the keyword “retarded”: 33,900
Videos with the keyword “tard”: 4,420
Videos with the keywords “so retarded”: 518
Number of videos in the top-4-most-viewed that have the word “retarded” in the title: 1

From Urbandictionary.com
Number of synonyms for the word “retarded”: 50
Number of definitions for the word “retarded”: 31
Number of American presidents referenced in definitions of the word “retarded”: 2

Amnio report sparks disability debate

A report in the current Journal of Obstetrics and Gynaecology of Canada concludes that American data has understated the risk of miscarriage during amniocentesis. The paper quotes the authors as saying that the American findings are “misleading and should be interpreted with caution.” Story from the (Toronto, Canada) Globe & Mail here. The story sparked an impassioned public comment session, with newspaper readers debating the value of late-in-life pregnancies and the lives of people with disabilities. Link here.

UCLA offers college experience to students with intellectual disabilities

The inaugural class of UCLA's Pathway Program is set to begin this fall. Sixteen students with intellectual disabilities including autism, Down syndrome and Asperger's syndrome will be attending classes through UCLA Extension, and they couldn't be prouder. From the story in the university's faculty and staff newspaper, Today:

Their excitement about what's in store for them this fall is palpable. It's in the eager glances and smiles they give their parents at an orientation session when meal plans, roommates and welcome week activities are discussed. It's the pride — even awe — with which their parents watch them assemble around The Bruin Bear for their official class portrait.

"It's inconceivable that our kids are actually doing this," confided parent Kathe Beltran, whose daughter Kate is in the class....

... This long-awaited program has been carefully crafted to offer students a college-going experience as well as a curriculum that blends academics with the practical skills they'll need to live independently.

... Living in apartments near campus, they will take classes in four UCLA Extension buildings and spend 60 hours a month learning to pay bills, budget, make medical appointments, use public transportation and cook, among other life skills. They will study at the library, exercise at the Wooden Center, eat in the dining halls, hang out at Ackerman and participate in campus life. Then at the end of two years, Pathway will help students transition to independent living.

For more information, see the UCLA Extension Pathway website.

Full disclosure: my husband and I are among the founders of Pathway.

Fetal medicine expert tells all

In an interview in the (UK) Guardian & Observer, fetal medicine pioneer Charles Rodeck tells us how things look from his side of the examining table. It's a sobering view. Rodeck is the founder and head of the unit for fetal medicine at University College Hospital, London, and was among the first physicians to pioneer fetal ultrasound in the seventies.

Among his revelations: doctors are increasingly being called upon by panicked parents to predict the level of disability that may be present in a child, and they are not equipped to do it.

... Unless a fetus is suffering from a particularly well-defined abnormality, it is impossible for a physician to predict how a condition will manifest itself in any child. "Our diagnostic abilities have outstripped our therapeautic skills," Rodeck said. "We now screen more women and can identify a huge variety of abnormalities, but we still can only treat a minuscule fraction...."

"... I have to tell parents all the time that just we don't know or can't predict exactly how their child will be affected by any particular condition," he said. "Often we can't even give a name to the abnormality suffered by a fetus...."

Rodeck also offered stiff criticism to the commercial IVF industry, which he characterized as "very competitive."

"Some clinics try to keep a step ahead by offering more interventions than their competitors, even if they know these procedures are uproven and may not work. This can become exploitation..." He said he is particularly concerned about a growing number of pregnant women he sees who have been prescribed unnecessary, unproven and possibly harmful drugs by private clinics.

The full story can be seen here.

Kuwaitis reported biased against Down syndrome

The Kuwait Times reports that Kuwaitis "attach a myriad of prejudice to people living with the Down syndrome." Among the anecdotal evidence cited: parents who subject children to multiple plastic surgeries to disguise their appearance, and parents who tied their child's hands and kept him in the basement as punishment.

A teacher is quoted as saying: "Some people fear them. Others reject them and don't accept them. There is a lot of rejection."

The link to the story is here.

Locked out.

Note to Medicaid patients: The doctor won't see you.

The Wall Street Journal reports on another way that people with disabilities are being sent to the back of the line. A growing number people with disabilities are losing access to health care or facing monumental delays as doctors across the country increasingly refuse to accept Medicaid patients, reports Vanessa Fuhrmans. Link here.

The story, which focuses on Michigan, raises the following points:
-- Straining under higher costs, Medicaid has been freezing or slashing fees to doctors. Doctors say Medicaid payments now do not even cover their costs.
-- A recent report from the non-profit Center for Studying Health System Change found that nearly half of doctors polled said they had stopped accepting or limited the number of new Medicaid patients.
-- Specialists are exiting the system at a higher rate than primary care physicians.
-- Delays in receiving treatment are leading to serious health consequences and costly emergency care, patients say.
-- The dwindling number of doctors who accept Medicaid patients undermines some presidential candidate proposals to broaden health-care coverage by expanding Medicaid eligibility.

Sex selection redux

Top fertility doctors in Britain want to lift the ban on parents choosing the sex of their babies, saying that couples have the right to pick "a pink one rather than a blue one." From the Daily Express (UK). Link here.

Parallels between sex-selective abortions and selective terminations

Taken together, this story and the accompanying letter to the editor present a parallel to prenatally diagnosed disabilities and termination.

First, the story:

India tries to stop sex-selective abortions. New York Times. Link here.

"Last year, a study by The Lancet, the British medical journal, reported that up to 500,000 female fetuses are aborted each year in India, leading to the birth of nearly 10 million fewer girls over the past two decades. Experts say that sex-selective abortions in India reduced the number of girls per 1,000 boys from 945 in 1991 to 927 in 2001."

Now, the letter. Link here.

"India’s latest proposal to stop sex-selective abortion regrettably overlooks a root cause of the discriminatory practice ... Until the Indian government adopts and enforces laws and policies that promote education for women, eliminate discrimination in the family and the community, and ensure women’s access to safe reproductive health services, it will continue to disempower its women."

To connect the dots: In societies in which people with disabilities are not being provided with adequate education, health care and other needed services, couples look to termination to avoid personal heartache. The net effect is a practice that continues to foster discriminatory attitudes against a historically stigmatized group.

Who is helped and who is harmed by using donor eggs?

The practice of using donor eggs for assisted reproduction is growing dramatically, giving older and infertile women new hope of giving birth. (Your Gamete, Myself, by Peggy Orenstein, New York Times magazine, July 15.) While we hear lots of enthusiasm among those who stand to profit personally or financially, the sad truth is that many thousands of young egg donors are being lured by the promise of quick cash without adequate information about the risks they may face of serious physical harm, damage to their future fertility, or even death.

Because egg donation is virtually unregulated, long-term studies about the effects of intense hormonal medications and surgical procedures on young women have not been done. Women and their doctors ought to lobby for regulation and oversight, so the safety of egg donors will not be overlooked in the market’s multi-million-dollar quest for eggs promising certain hair color, eye color, and taste in movies.

Related links:

From the New England Journal of Medicine: The egg trade -- making sense of the market for human oocytes, Debora Spar, March 29, 2007

From the BBC: Safety of egg donation 'unclear' -- June 30, 2005

Early screening cuts births of children with Down syndrome by 50 percent in Denmark

Early ultrasound screening, coupled with a blood test, has reduced the number of children born in Denmark with Down syndrome by 50 percent, according to Professor Karen Brondum-Nielsen of the Kennedy Institute in Glostrup, Denmark.

The findings were the result of an analysis of data collected in three counties in Denmark, accounting for about one-fifth of the nation’s population, for the years 2004 to 2006. The analysis followed a recommendation for new guidelines for prenatal diagnosis in 2004 by Denmark’s National Board of Health.

Until September 2004 the Danish government had recommended that only pregnant women over the age of 35 should be offered the combined non-invasive tests, which are carried out between the 11th and 14th weeks of pregnancy.

But Denmark's national health board subsequently recommended that the early tests should be made available to all women who requested them, regardless of age. The combined testing regimen included a nuchal translucency ultrasound along with a maternal blood test.

Brondum-Nielsen reported that women whose initial screen indicated an elevated chance of Down syndrome were then offered an invasive test (amniocentesis or chorionic villi sampling). As a result of the early screening, she said, rates of invasive testing declined during the period studied.

See the reports here and here.

"... The professor concluded that there was a need to analyse the psychological impact of the policy, both in regard to the pre-test counseling available to pregnant women and their attitudes towards screening."

Unkind words wound people with disabilities and their caregivers

Hello, all. I'm back after a brief vacation.

Check out this morning's USA Today for responses to its recent column about the widespread use of the word 'retard' as an insult. The columnist, USA Today reporter Theresa Howard, made the point that the use of this common slur diminishes the dignity of the estimated 7.5 million Americans who have intellectual disabilities as well as their families.

From today's letters:

"I just don't understand why many people avoid using racial slurs but somehow think it is OK to use 'retarded.' I know that in the vast majority of situations, people are not trying to be mean; they're just oblivious. Hopefully, commentaries such as Howard's will raise awareness of just how inappropriate it is to use degrading, insensitive terms in casual conversation. Perhaps people will begin to understand that they are being disrespectful to those who have developmental disorders and to the families who love them."

Couldn't have said it better myself. The letters can be found here.

Sadly and predictably, there are also many foolish and insensitive comments now attached to the original column, including some from writers advocating for their right to free speech -- an odd and paranoid twist, considering that Howard was arguing for civility, not censorship. (Navigate back to it here.)

From In These Times:
Genetic Disorder: Parents with limited incomes are being denied access to genetic tests and the counseling that experts say should accompany them

From Boston Globe: With rise in autism, programs strained

From the Times (UK): Couples are 'driven to IVF tourism by ethical disparities across Europe'

From ABC (Australian Broadcasting Corp.): Stem cell research boosting women's egg trade

From Fox News: Infanticide, abortion responsible for 60 million girls missing in Asia

From the American Medical Association News: Confronting eugenics: Does the now discredited practice have relevance to today's technology?

Prenatal screening tied to MD concerns over lawsuits: Economist

In a report from the Economist, ACOG's prenatal testing and screening guidelines are attributed at least in part to physician worries over wrongful birth litigation. See the story here:

Wanted: Perfection. Doctors try not to be sued over Down syndrome babies

Key quote:

The new guidelines may also be triggered by the surge in lawsuits. In November an ACOG survey found that 65% of obstetrician-gynecologists had reduced their practices for fear of liability claims. Clinic workers confirm that women who have imperfect babies tend to blame doctors. One nurse says her clinic can't afford the insurance to ward off the suits. 'If more tests reduce our risks, then so be it.' (emphasis mine)

What's remarkable to me is that more media attention hasn't been paid to the connection between wrongful birth lawsuits, lack of tort reform and the broadening of prenatal testing. Although ACOG has presented the guidelines as a response to requests from women, the Economist makes the point that the guidelines often are not well implemented, and many women are feeling ill-served.

From the story:

Many obstetricians are clearly overworked, with no time to offer more than suggestions and results. And although the guidelines describe these tests as options, many pregnant women are feeling badgered. Some are being asked six times or more whether they want an amniocentesis.

The economic subtext becomes more clear when you read the most recent ACOG report on litigation here. Among the key findings from the 2006 ACOG survey on professional liability:

-- Almost 70% of ob-gyn survey respondents have made changes to their practice as a result of the affordability and/or availability of professional liability insurance, and 65% have made one or more changes to their practice as a result of the risk or fear of professional liability claims or litigation.

-- A total of 89% of respondents indicated they had at least one professional liability claim filed against them during their professional careers, or an average of 2.6 claims per ob-gyn.

-- Top lawsuit allegation made against gynecologists: delay-in or failure-to-diagnose.

In other news:

From USA Today:
A mother's view of a word that wounds: 'Retard'

From the Independent (UK):
Screening IVF embryos 'can damage birth chances'
(See the original report in the NEJM here.)
Childhood asthma gene identified by scientists

From the Guardian (UK):
Benoit son's disability questioned

From WPVI-TV in Philadelphia:
Gifts for every parent

A Tale of Two Daniels

How the WWE tried to protect its image by exploiting our prejudices

In the era of celebrity-driven philanthropy, it just might have been a non-profit’s worst nightmare. A celebrity does something ghastly, and surprise! Somebody blames the people you’re trying to help.

That’s what happened in the world of Fragile X last week when World Wrestling Entertainment tried to deflect blame for the apparent murder/suicide of wrestler Chris Benoit and his family.

Brushing aside questions about illegal steroid use, the WWE put out the word that Benoit’s 7-year-old son Daniel had Fragile X syndrome – an account that family members now dispute -- and that his disability was a constant source of tension for Benoit and his wife.

Faster than you can say eugenics, speculation about Benoit’s anguish over the boy’s “suffering” swept the airwaves and the internet, eliciting sympathy and temporarily blotting out the “roid rage” theories. Who among us can judge, wrestling fans asked one other. Perhaps dealing with a chromosomal anomaly was just too much stress. Perhaps Daniel was a “burden;” perhaps he was hopeless.

Let me add my own theories to the mounting pile. Perhaps the publicly-traded WWE was engaging in damage control. Reasoning that fans would be repelled by the specter of a celebrity turned murderer, perhaps they were banking on the hope that many might perceive a utilitarian logic in ending the life of a child with a disability. Judging by the number of Google hits that now connect Benoit’s name with the term “mercy killing,” the WWE may not have underestimated the public sense of justice.

Whether Daniel Benoit did or didn’t have Fragile X is not our business – or the WWE’s. What we should be concerned about instead is the WWE’s cynical effort to shift blame to an innocent and voiceless young boy, in effect victimizing him a second time.

In so doing, the WWE also sent hurtful messages about the many thousands of people who are living productive, satisfying and dignified lives with Fragile X syndrome, and about their families. To suggest that their lives are fraught with despair is both inaccurate and demeaning, and fuels public stigma against them.

Far from being a rare medical condition as it was described in media reports, Fragile X syndrome is shared by between 70,000 and 100,000 people in the U.S. according to the National Fragile X Foundation. If all the people who are carriers are included in that estimate – an estimated 1 in 130 women and 1 in 700 men -- the number rises to more than a million. The disorder gets its name from the long tail of the X chromosome.

While Fragile X syndrome is the most common inherited cause of mental impairment, better education and early intervention services have greatly improved prospects from what they were a generation ago. Experts say many young adults with Fragile X are now holding jobs and living independently or semi-independently, and that the trend will continue to grow.

We may not be aware of it, but it’s very likely that some of these people are among our neighbors and friends. If we are really worried about alleviating their “suffering,” then perhaps we should turn our attention to broadening the availability of accurate diagnosis and intervention services, and stepping up research into treatments.

I’ve often wondered why the public is so quick to swallow unproven assertions that families of people with disabilities are dysfunctional, and that disability in a family causes it to become violent.

Perhaps it’s a failure of imagination. If we haven’t lived with a person with a disability, we don’t know what to expect. As with raising any child, raising a child with a disability brings many aggravations as well as joys.

Studies have shown that families with disabled children report they fare no better or worse than others, and often rate themselves higher in personal satisfaction than other families. Many of them say what’s stressful is less their child’s diagnosis than the public stigma attached to disability.

Our family cherishes the friendship of a young man, also named Daniel, who has Fragile X syndrome. We greatly value his kindness, charm, sense of humor and taste in television shows (which runs heavily to reruns of “West Wing”). Supervisors in the gourmet shop where he has been working are much impressed by his enthusiasm and easy way of relating with the customers. Our Daniel has friends, a supportive family and a very active social calendar. He enjoys his life.

I only wish that Daniel Benoit might have been so lucky.

For more information, visit the National Fragile X Foundation or the Fragile X Research Foundation.