Law day in disability world

* Subway settles with the Justice Department in an accessibility case. Subway will have to renovate its 20,000 restaurants to make them accessible to people with disabilities. The company had been charged with violating the ADA.

* The Justice Department has launched a wide-ranging investigation of New York’s transit authority for “allegedly violating federal laws meant to help wheelchair-bound commuters get around underground,” reports the New York Post.

* A San Francisco surgeon is charged with hastening the death of a patient with disabilities in order to harvest his organs for transplant. Hootan Roozrokh is facing three felony charges in connection with the death of Ruben Navarro of San Luis Obispo. Roozrokh’s attorney says his client is the subject of a witch hunt.

* Six Medicaid patients sue the state of Florida to try to block cuts to in-home services for the developmentally disabled that are scheduled to begin on Wednesday.

* Parent feud divides Special Olympics organization in Texas. The Dallas Morning News shows us the documents.

Epilepsy zeitgeist

The number of Google hits for the search "Roberts, epilepsy" as of 7:45 a.m. Eastern: 1,733.

Some examples:

• Roberts facing medical option on 2nd seizure:

  "... he and his doctors will have to decide whether he should take medications to prevent further seizures ... the drugs can have troubling side effects, including drowsiness or insomnia, weight loss or weight gain, skin rashes, irritability, mental slowing and forgetfulness. "

• Experts split on whether Chief Justice Roberts has epilepsy:

  Doctors "were divided on whether the seizure -- the second one the 52-year-old jurist has suffered in 14 years -- is a sign that Roberts has epilepsy, a neurological condition that could require him to take anti-seizure medication to control the disorder."

• Does Justice Roberts have epilepsy?

  "When Chief Justice John Roberts experienced the second seizure of his life on Monday, he may have become, in medical terms, an epileptic ... The diagnosis of epilepsy, say experts, may not necessarily mean that Roberts will have to take anti-seizure medication, which can control the electrical activity of the brain, or have to be concerned that future events will impair his ability to function on the Supreme Court."

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.”

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

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.

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.

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.

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.

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 calm, rational discussion of special education ….

…. 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.

Prenatal screening panic

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.

Guaranteed to give you a headache

In this morning's New York Times: "States face touchy decisions on who is mentally fit to vote."

It's a thoughtful consideration of what happens when officials try to determine eligibility for voting, tiptoing around conflicts among the legal, medical and popular definitions of such terms as "insanity," "idiot" and "non compos mentis." This is a tough subject, and it's approached with care. Rights and risks of vulnerable people are discussed; someone asks whether people with medical diagnoses should be subjected to greater scrutiny than the average person (who may be making decisions based on jokes heard on the Daily Show.)

So then why do I have a headache? It's this quote, from the chairman of the Cranston, R.I., board of canvassers:

"I just think if you are declared insane you should not be allowed to vote, period. Some people are taking these two clowns and calling them disabled persons. Is insanity a disability? I have an answer to that: no. You're insane; you're nuts."

Nuts. Is that the legal term in Rhode Island?

Still more on the "pillow angel" saga

The Seattle Post-Intelligencer carries an insightful column by Anne McDonald about Ashley, the 6-year-old girl whose uterus and breast buds were removed at the request of her parents. The parents had argued that it would would be easier to care for their daughter, who has mental and physical disabilities, if she did not grow to an adult size, and that a childlike body would afford her "more dignity and integrity than a fully grown female body." In their blog, the parents (who have not revealed their identities publicly) refer to their daughter as "Pillow Angel."

Last month, in the face of an investigation and mounting controversy by disability rights advocates, Children's Hospital in Seattle admitted that the hysterectomy was illegal. See link.

McDonald's column explores her own experiences as a child whose growth was attenuated and whose potential was overlooked by medical professionals. She questions the assessments of Ashley's abilities, and criticizes the decision to subject the girl to surgery without an effort to obtain her participation and consent for the procedure.

Her words:

"My ongoing concern is the readiness with which Ashley's parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn't have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

"The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

"No child should be presumed to be profoundly retarded because she can't talk. All children who can't talk should be given access to communication therapy before any judgments are made about their intelligence.

"Ashley's condemned to be a Peter Pan and never grow, but it's not too late for her to learn to communicate. It's profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own."