Disability news, Accessibility Issues, Disability Issues, Accessiblity News

Archive for June, 2007

A calm, rational discussion of special education ….

Wednesday, June 27th, 2007

…. is not happening at the Wall Street Journal.

Nobody ever said that covering education is easy, and the job only gets tougher when reporters are called upon to spin compelling yarns while evaluating complex educational trends. Factor in the limitations posed by production and deadlines, and the results sometimes aren’t pretty.

Unfortunately, that’s what happened on the front page of the Wall Street Journal this week when John Hechinger’s story on inclusion ended up sounding more like a rant against educating children with disabilities in the general education classroom.

The story sported the inflammatory subhead “Disabled children join peers, strain teachers.” It stirred up a lot of fear but didn’t provide much insight, and didn’t even begin to discuss the benefits for all students that have been documented in well-run inclusion programs. Instead, the reader was served a stew of anxiety in which programs were evaluated not for their effects on students but on teachers, and the main concern seemed to be whether the presence of children with disabilities is damaging to teacher morale.

The less-than-balanced account relies heavily on the viewpoint of a disgruntled teacher in Scranton, PA, who announces that one particular 8-year-old student has driven her to early retirement. Clearly, this woman has axes to grind. The story appears to quote from a diary she kept of the student’s actions throughout the year, but if the reporter was present to witness any of the events described he gives no indication of it.

The end result is a quick-and-dirty account of a complex subject that deserves far more thoughtful consideration and a lot less finger-pointing – particularly against children. It’s worth a moment here to remember the origins of the federal law guaranteeing children with disabilities a right to education in the least restrictive environment: thousands of children with disabilities in 1975 were not getting any education at all.

It’s also worth remembering that the law provides no requirement that all students with disabilities get the same or similar placement. Classroom placements are determined individually, which gives administrators and teachers the flexibility to serve each student’s needs.

Implementation of special education mandates since the passage of the 1975 law has been disappointing, with students ill-served as states, localities and the federal government have wasted precious time assigning blame over funding and other issues. Inclusion has worked well for both students and teachers in settings in which training and support have been provided, and in which communication has been a priority. Sadly, those situations have been the exception.

The U.S. Department of Education reported last week that after 30 years, only 9 states have met acceptable standards. That’s the real story. We’ve thrown away time in the lives of children that can never be reclaimed. The Journal ought to be asking why school administrators still can’t get it right.

POSTSCRIPT: Did anyone else cringe over the publication of the 8-year-old student’s name and likeness? That she is a vulnerable child with a disability is obvious. That she is not capable of giving informed consent to being publicly pilloried as special education’s Public Enemy Number One seems equally obvious. Regardless of what her parents may or may not have said, this assault on her dignity should not have been permitted.

AND ANOTHER POSTSCRIPT: We wonder why the Journal is suddenly worried that inclusive practices are driving good teachers out of teaching. If you read the fine print, you learn that complaints on this score don’t even make it into the top ten sources of dissatisfaction by reporting teachers. (Not surprisingly, the top gripes circle around such evergreen topics as inadequate planning time, poor salary and heavy teaching loads.) “Mainstreaming special students” comes in twelfth – not enough to keep us up nights.

Click here for letters to the Journal.

Student with Down syndrome wins challenge to graduation policy

Monday, June 25th, 2007

‘Alicia walks: Disabled student joins peers at graduation’

‘Fight for rights of daughter with Down syndrome pays off’

A student with Down syndrome in East Hanover, New Jersey, was able to participate in high school graduation ceremonies with her peers after her parents successfully contested a 20-year-old district policy.

Alicia Vitiello had been included in regular classes from kindergarten through 12th grade, disproving skeptics. But she almost didn’t get to attend graduation with her classmates because a school district policy required students to complete their education before attending commencement.

Because Alicia’s disability qualified her for two additional years of schooling, administrators had initially barred her from attending ceremonies with her classmates. Special education advocates across the country, the White House and local politicians lent support to her parents’ challenge to the policy.

From the Daily Record in Morris County, NJ.

Friend needs to slow down, gather information

Sunday, June 24th, 2007


Dear Pat,

A dear friend’s niece is facing a crisis. She is pregnant at 35 with one little daughter, and the prenatal screening tests are showing but not yet conclusively the possibility of Down Syndrome in this pregnancy. She is understandably overwhelmed. She won’t have a complete report for another 10 days. Do you know what resources are available for counseling and helping a woman at this point in her life? I am sure there are many and some will presumably come from the OB-GYN, but if you have any suggestions, they would be welcome.

I have always told my daughters that in any critical situation there is time, as strange as that may sound, to still examine things and think them through. This definitely feels like one of those moments. This woman is utterly overwhelmed and I have tried to offer my friend encouragement to help her slow down, gather information, think carefully and proceed with care. The stakes on either side of her choice are very high.

What can we tell her?

Claudia
______
Yes, you’re right: there is time to gather information and think it through. Unfortunately there’s a lot of confusion out there, and it seems that we’ve been much more successful in developing tests than in helping people interpret the results.

First, there’s the confusion about the tests themselves. Your friend should be aware that the prenatal screens used in the first trimester produce data in what is called a “probabilistic” format. In other words, they are not definite; they say that you may have one chance in X number of a particular result.

It’s important to know that what the woman receives are odds (sort of like Saturday night in Las Vegas), and that the screens are designed in such a way that they deliver many false positives as well as false negatives. I’ve had email from women who have been told they had a high probability of a child with DS only to have a child without it, and women who were told their child would likely not have DS and then did have it. In all likelihood, her doctor will recommend followup testing of amnio or CVS, which will offer more definitive (although not infallible) information.

Then there’s the confusion about what a diagnosis of Down syndrome could mean. Everyone is unique, and there’s no way to predict what a person will be able to do by looking at their chromosomes. Recent advances in education and healthcare have brought about marked improvements in outcomes for people with DS these days, according to parent reports. (See “Prenatal tests put Down syndrome in hard focus” in the New York Times.) But national outcomes data is not kept, so it’s understandable that medical professionals who have minimal contact with people with DS may well be unaware of progress that parents are seeing.

In a recent survey of mothers of children with DS published in the American Journal of Obstetrics and Gynecology, Dr. Brian Skotko found that parents feel obstetricians and genetic counselors fall short when it comes to delivering a prenatal diagnosis of Down syndrome to pregnant women. (You can access the study here.) Mothers who received a prenatal diagnosis of DS reported that doctors did not give them a balanced view of the possibilities and realities of life with Down syndrome, and did not provide up-to-date information.

With that in mind, your friend might want to contact her local Down syndrome organization. In my experience, predictions by doctors and lists of symptoms in medical textbooks can be very limiting. It’s not until you meet other families and get current information that you begin to see the possibilities. The National Down Syndrome Congress and the National Down Syndrome Society, available on the internet here and here, may be able to help you find a local affiliate.

And if that’s not enough to think about, you should also be aware that OB/GYNs are feeling the bite of rising medical liability insurance costs as courts in some states have been awarding damages in what are being called “wrongful birth” lawsuits. With that kind of backdrop, it’s understandable that many doctors are insisting that women get prenatal screening (or sign a waiver declining it) as a way of warding off potential lawsuits. Sadly, this only adds to the level of anxiety that surrounds the topic of prenatal screening.

As I’m typing this, my daughter Margaret is busily reading “Julia and Jacques Cooking at Home” by Julia Child and Jacques Pepin, looking for recipes for tonight’s dinner. She has completed high school and a post-secondary culinary arts program, and is excited that she will be moving into her own apartment with a couple of girlfriends (with some help from mom and dad) later this summer.

I guess I’d want to tell your friend that in the final analysis, being a parent to any child is both work and a gift. Like many things in life, it mostly requires that we keep smiling and keep showing up. Having a few good friends also makes a world of difference.

P.S. Here’s a link to a story from the Sacramento Bee the other day about a “precocious” third-grader who’s performing in her local junior production of “The Music Man.” Her name is Katina and she’s got DS. The photos are adorable.

Race, genetics and what else? Prenatal diagnosis

Saturday, June 23rd, 2007

Osagie K. Obasogie, writing on the Bioethics Forum, discusses the possible impact of efforts to decode the genetics of skin color. He wonders whether the money is there to create prenatal diagnostic tools to allow couples to choose the skin colors they want for their children, and ponders the effect of such a development on social constructions of race. Good questions. Given that racial inequality has historically been based largely on skin hues, how would it feel to live in a society in which the haves could choose their offspring’s color and the have-nots could not?

Says Obasogie:

What’s happening with genetic research into skin color is as much an ethical development as a scientific one.

States get dismal report cards on special ed

Friday, June 22nd, 2007

The U.S. Department of Education has graded the states on how well they are educating children with physical and mental disabilities. Nine are complying with the law, five need “intervention,” and the rest “need assistance.” See the Department of Education release here, story on stateline.org here. The grades are based on public information submitted by the states for the 2005-2006 school year.

The states that met the requirements for children aged 3 to 21 were: Alaska, Connecticut, Hawaii, Michigan, Oregon, Pennsylvania, Tennessee, Virginia and Wyoming.

Those listed as “needing intervention” were: Colorado, Indiana, North Carolina, North Dakota and Washington.

So let’s get this straight: it’s been 32 years since Congress passed the law mandating public education for students with disabilities, and only nine states are in compliance?

Education Week story is here.

Topics in prenatal diagnosis: Cosmetic enhancement, bullying, homophobia ….

Thursday, June 21st, 2007

The British Human Fertilisation and Embroyology Authority has granted a license to a London family clinic to screen embryos for a genetic disorder which causes a severe squint. The action is being described as the first time a British clinic will be allowed to screen embryos for cosmetic problems. Critics say the action is inappropriate because the condition is not life-threatening. Story from the BBC here; from the London Telegraph here.

The Telegraph account quotes Prof. Gedis Gurdzinskas, who received the license, as saying that he would screen for any genetic factor, cosmetic or otherwise, that might cause a family severe distress.
When asked if he would screen embryos for factors like hair colour, he said:

“If there is a cosmetic aspect to an individual case I would assess it on its merits.

“[Hair colour] can be a cause of bullying which can lead to suicide. With the agreement of the HFEA, I would do it. If a parent suffered from asthma, and it was possible to detect the genetic factor for this, I would do it. It all depends on the family’s distress.”

As long as there is money to be made screening pregnancies and embryos, there will be no shortage of people willing and eager to perform the service. But as the saying goes, the fact that we can do a thing is not an argument that we should. Increasingly, it seems, we are turning to market forces to eliminate problems that more properly should be addressed by social action. Prenatal screening to avoid bullying by those who don’t like our hair color? Please.

If parents perceive themselves as being morally obliged to create “perfect” children who will not arouse social opprobrium, society will inevitably become less tolerant of those who are different, whether that difference resides in disability, a luxurious crop of red hair, or sexual orientation. For more on the topic of selecting for sexual orientation, see Alice D. Dreger on the Bioethics Forum: “Liberty and Solidarity: May We Choose Children for Sexual Orientation?”

She argues that prenatal screening attaches negative attitudes to the conditions that are screened, recounting a case in which a friend was “scolded” by a stranger for having a child with Trisomy 21 (Down Syndrome).

“I can fully imagine a scenario where, thirty years from now, a woman tells a friend her son has come out as gay, only to have the friend respond, “Didn’t you get the test?!” Could we really imagine that offering such a test would have no negative impact on how an already-homophobic culture views people who are gay (and their parents, for that matter)?”

Here’s her conclusion about prenatal screening and termination for homosexuality (which she credits to researcher Simon LeVay:

“… we shouldn’t ban it. Because that would be allowing governments to make decisions about our reproductive choices, which isn’t a good idea. . . . But I reserve the right to become hysterical about it.”

Now that’s productive.

More on the so-called “gay gene” from the Toronto Star here.
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Michigan woman with DS killed in apparent murder-suicide

Thursday, June 21st, 2007

Glee Bengel and her 24-year-old daughter April were found dead of shotgun wounds at their Lansing-area home this week, and police say they suspect the mother killed her daughter and then herself. Glee Bengel left a note saying that her colon cancer had returned and she feared that April would not be cared for in the event of her death.

A news report described April as a “delightful” young woman who operated the cash register in a local training program and was working on living independently. Links here and here. John Schneider, writing in the Lansing State Journal, extends his sympathy to the mother, writing that murder-suicide in such a case is not unprecedented. His words:

… I don’t know what other alternatives Glee Bengel had – for herself, or her daughter. But the world, minus the sheltering arms of a loving parent, can be a harsh place for people who depend completely on the selflessness and forbearance of other human beings. That’s why we sometimes read about parents who just aren’t willing to send their children to that place.

Sigh. Am I reading what I think I’m reading? The columnist finds it understandable for this mother to kill her daughter because her daughter had Down syndrome? That this case is a tragedy is not in question. But the tragedy was not that the daughter had a disability. (In fact, it sounds as though she was pretty capable.) The tragedy here was that her mother was not willing or able to seek the help that her daughter may have needed to maintain a secure and satisfying adult life in her mother’s absence.

My hope, for this columnist and for the rest of us, would be that a case like this would provide an opportunity to examine the services that are available for families of people with disabilities, and to make reasoned recommendations about what improvements are needed. Instead, we find a writer who implicitly excuses this young woman’s killing because he sees death (by shotgun blast) as preferable to a life in which she must depend on people other than her mother.

Attitudes like the ones expressed here serve only to extend unwarranted public stigma against people with disabilities, and to excuse society of the responsibility of caring for its more vulnerable members. If we aren’t providing adequate support for individuals and their families, then let’s be more forceful in advocating for needed changes in the memory of April Bengel. She deserves nothing less.

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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 website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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