Sunday, January 31, 2010

California to close its last large institutional care center for people with disabilities

From the LA Times:

Reporting from Sacramento - The Schwarzenegger administration plans to close one of California's last large institutional care centers for people with profound developmental disabilities.

The 82-year old Lanterman Developmental Center in Pomona, which houses 398 people with severe autism, cerebral palsy and other lifelong disabilities, could shut its doors within two years, said Terri Delgadillo, director of the state Department of Developmental Services.

The population of the 302-acre campus has dwindled from a peak of nearly 3,000 in the late 1960s, when a change in state law discouraged housing the developmentally disabled in large institutions. Since then the trend has been for the state to offer home-based services or to place people in group homes in their own communities.

With Lanterman's aging buildings and more than 1,300 employees, Delgadillo said, "it's just not economical for us to continue it."

The news came as a shock to residents' families.

"It's devastating for us," said Ann Grivich, whose brother-in-law Bobby Grivich, 61, has lived at Lanterman since 1969. He has the mental capacity of an 18-month-old, she said; without constant supervision, he smears himself with feces and wanders into traffic.

"People like Bobby are actually more confined in the community. At least [at Lanterman] he can wander the grounds safely," Grivich said.

Brad Whitehead, who works in the dental and eye clinics at Lanterman, said residents struggle to get services when they go back to their neighborhoods.

"They run into offices that don't want to treat them because of the challenges they present," Whitehead said. "The second someone goes out in the community, they lose about 80% of the services they were going to receive."

The state closed two other 24-hour care facilities in 2009: Agnews in San Jose and Sierra Vista in Yuba City. In both cases, Developmental Services officials went to great lengths to make sure the residents wound up in smaller facilities equipped to provide proper care, Delgadillo said.

The current Developmental Services budget and the one just proposed by Gov. Arnold Schwarzenegger provide enough money to do the same for residents at Lanterman, Delgadillo said.

In general, advocates for the developmentally disabled give Delgadillo high marks for finding suitable places for people last year. But as the budget noose tightens on state agencies, they're skeptical that the department will still have enough money to do painstaking evaluations of each case.

"In this fiscal climate, I think it's going to be very hard to figure out what people need," said Terry DeBell, who speaks for a group representing families of Lanterman residents.

A common concern among patient advocates is that the smaller community facilities don't require as much staff training as bigger institutions. But even with a well-paid, professional staff, Lanterman has faced its share of regulatory hurdles in recent years.

In 2005, the state health department fined the center $25,000 after staff failed to promptly treat a resident's bowel obstruction, a condition they knew he suffered from. The man subsequently died in a hospital emergency room.

The state also cited the center in 2003, after a 31-year-old resident died from internal bleeding caused by blows to the stomach. In his five months at Lanterman, he had been injured at least 12 times -- including with cuts, bites and broken fingers. Investigators never determined who killed him.

Also in 2003, federal inspectors found that Lanterman administrators had failed to properly investigate 55 patient injuries.

But families of some of the neediest patients viewed such incidents stoically, seeing them as the exceptions not the rule.

"We're happy with the care at Lanterman," Grivich said. "There's some good people and some bad people, but for the most part, we didn't find Nurse Ratched," she added, referring to an oppressive character from the novel and movie "One Flew Over the Cuckoo's Nest."

The closure plan still requires approval from the Legislature. Employee unions, such as the California Assn. of Psychiatric Technicians, with 511 members working at Lanterman, have vowed to fight it.

Abigail Breslin, Alison Pill talk about bringing new "Miracle Worker" to Broadway

From The video of the interview is on the Web site.

Half a century after it first took the Broadway stage, William Gibson’s The Miracle Worker is back with a starry cast led by Academy Award nominee Abigail Breslin (of Little Miss Sunshine fame) and Tony Award nominee Alison Pill (The Lieutenant of Inishmore). (Both are pictured.)

The famous story of Helen Keller and her equally famous teacher, Annie Sullivan, will be directed by Kate Whoriskey, whose critically acclaimed Ruined took the theater world by storm last year. chatted with The Miracle Worker‘s cast and creative talents as they prepped for previews, which begin February 12, 2010.

Colorado officials look into abuse, neglect of man with Down syndrome

From The Pueblo Chieftain:

The possible abuse and neglect of a 46-year-old man with Down syndrome is being investigated after he was found to weigh only 60 pounds discovered to be suffering from severe bed sores and a broken femur.

The Pueblo County Sheriff's Office is now investigating the case concerning Karl Martinez, who has been recovering in a local hospital since November.

The ARC of Pueblo was granted emergency guardianship at the time and is now Martinez's legal guardian.

"He was withdrawn, was so malnourished and the bed sores were horrific," said Stephanie Garcia, executive director of the ARC. "I'm happy to report he's gained 20 pounds."

Martinez had been living with a relative on Pueblo's East Side when neighbors reported suspicious activity at the home on Nov. 5. Neighbors called 911 after they saw Martinez's relative carrying "what appeared to be a limp body to a vehicle," according to court documents obtained by The Pueblo Chieftain.

The body was first believed to be a dead dog, Garcia said, but was actually Martinez. Sheriff's deputies didn't respond because they were on other calls, the document said.

The court documents included a letter by Dr. Constance Wehling, who treated Martinez.

"This is truthfully the most severe case of neglect that I have encountered in 30 years of my medical practice, and I would encourage the legal system of this county to take an active role in giving him respect of life," Wehling wrote.

While Martinez is improving, Garcia said she's disappointed with the lack of progress in the case.

"I am disappointed, and I think what triggered my anger was the horrible reports of the animal abuse up north and how quickly people were brought to justice, and I just want that for Karl. I want Karl's offenders brought to justice," she said.

Garcia was referring to the recent incident in Park County, where 100 sled dogs were allegedly abused and malnourished and their owners arrested and charged.

Sheriff Kirk Taylor said investigative efforts had been dedicated to the December robbery-homicide of Robert Piserchio, which has netted arrests of seven suspects in Colorado Springs.

More resources have recently been dedicated to Martinez's case.

"The detective working with this has been tied up on the homicide," Taylor said in a recent interview. "No. 1: the stronger (Martinez) gets, the better witness he's going to be. He was only able to answer 'yes' or 'no' to questions."

"Carl's been saying the same thing from day one," about his alleged abuse, Garcia said. "And I told Kirk (that) Karl's voice is not being heard. As long as I'm around I'm going to jump up and down and scream until Karl's being paid attention to."

The Pueblo County Department of Social Services has had contact with Martinez dating back to at least 2007. Garcia said DSS knew of abuse against Martinez in 2007 after he collapsed at his home and was hospitalized for malnourishment.

Jose Mondragon, DSS director, said in a recent interview he couldn't talk about the case due to client confidentiality.

"(DSS) had gone out four times before because the neighbors were called and had reported concerns of Karl's well-being," Garcia said.

Taylor said DSS has not been cooperative or forthcoming with the investigation.

Capt. John McClure of the investigation unit at the sheriff's office said the district attorney's office had reviewed the case and is awaiting more medical information before reaching a conclusion on whether charges will be filed.

"The DA has reviewed the case, and they need more specifics," McClure said.

Australian teen with dyslexia attempts around-the-world sail

From UPI:

BRISBANE, Australia -- The Australian teenager now in the midst of a solo, non-stop around-the-world sail suffers from profound dyslexia, her mother says.

Julie Watson told The Brisbane Courier-Mail her daughter, Jessica, 16, was diagnosed with dyslexia when she was still in preschool. She struggled with school because she could not learn to read.

When Jessica was 11, her mother read her "Lionheart: A Journey of the Human Spirit" by Jesse Martin, who in 1999 became the youngest person to sail alone around the world without stopping. Julie Watson said her daughter "went very quiet, you could see the cogs turning."

"She realized he was an ordinary person with vulnerabilities and humanness," Julie Watson said. "And that's why he wrote the book: so people realized you don't have to be superhuman to go around the world."

Jessica is now trying to break Martin's record. She is on board her yacht, the Pink Lady, halfway across the South Atlantic.

"She has struggled all along with perception and people saying: 'How could she do that if she can't even spell?' But you don't have to accept that as a limitation," her mother said.

Baby with rare condition born with no eyes

From ABC News:

When Taylor Garrison gave birth in October, she was astonished that doctors whisked her daughter, Brielle (pictured), out of the delivery room without much explanation.

"They took her out of the room, and they wouldn't let us see her," said Garrison, 15, of Wellington, Fla.

Finally, after six hours of tests, Garrison got to look briefly at her baby and see what doctors were so concerned about.

"She looked like a normal baby, but I could just tell something was wrong," Garrison said.

Brielle was born without any eye tissue at all, a condition called anophthalmia that leaves a person irrevocably blind.

Garrison also learned this rare diagnosis was one that is almost always missed by ultrasound -- even though hundreds of genetic diseases and deformities once discovered at birth can now be detected with the latest ultrasound technology.

"If you look at the ultrasounds, where the eye sockets are they're just black because the eyes are made of water," Garrison said. But Brielle's eye sockets were just empty.

Dr. Aaron Fay, director of Ophthalmic Plastic Surgery at the Massachusetts Eye and Ear Infirmary, is currently treating 10 patients with the rare disorder.

The condition of either partially (microphthalmia) or completely missing eye tissue occurs in 30 in 100,000 births, and although in concept, Fay said, doctors could perhaps see the missing eyes in utero with an MRI, it is rarely diagnosed in the womb.

"There are skeletal stigmata that could be picked up," Fay said. "But it's most frequently diagnosed at birth."

The condition is not inherited, Fay said, so families have no clue that their child may be carrying the deformity. It could be a genetic mutation, or an unexplained occurrence in the first few weeks of pregnancy.

Garrison said Brielle's genetic screening came up clear.

"She got a chromosome test, and she came back as a normal baby girl," Garrison said.

However, eye and genetic screening specialists say a genetic mutation can sometimes lead to anophthalmia.

"A number of those patients have a problem on chromosome 13," said Michael S. Watson, executive director of the American College of Medical Genetics.

If a doctor somehow suspects a problem with the eyes, which happened to baby Faith featured by in November, then Watson said mothers could go in for prenatal genetic screening.

"We certainly can test for, with great accuracy, for chromosome abnormalities and that has been the case for 40 years," said Dr. Mark Evans, a member of the American Congress of Obstetricians and Gynecologists.

"There are hundreds of them, however the vast majority occur with chromosome 21, 13 and 18," said Evans, of Comprehensive Genetics in New York City.

With such old technology and more genes discovered every day, one might wonder why every woman wouldn't get prenatal genetic screening.

"But we do not routinely test everybody for everything because we'd bankrupt the country," Evans said.

Evans also thought that occasionally a false security in ultrasounds keeps prenatal genetic screening rates low, in addition to the high costs.

"What has happened in the last 20 years is that many women are being falsely reassured by ultrasound and not going on to genetic testing," Evans said. "In some places the birth rates of these (genetic) problems have gone up."

As ultrasounds for women seeking prenatal care have become almost universal in the United States and, as Evans argued, perhaps overly reassuring, doctors also say that the prenatal imaging has evolved into high tech and low tech uses.

Now, a portion of obstetricians have become experts in using prenatal imaging to diagnose genetic disorders an ultrasound wouldn't have caught a generation ago.

"What you can see in prenatal imaging is changing enormously," Watson said. "You end up with two different kinds of people who do imaging. One level is the standard obstetrician on the corner, who can do the basic measurements and tell you if your baby is growing normally and you end up with a picture on your fridge."

The other, Watson said, are people who specialize in high-risk pregnancies and can use ultrasounds to diagnose, or even treat more and more genetic abnormalities.

"At the first level it's a matter of someone being suspicious that something is going on," Watson said. "The patient can then go to an obstetrician who specializes in high risk pregnancies."

Doctors can even treat a few of the birth defects in the womb -- such as Spina bifida or twin to twin transfusion syndrome -- if ultrasounds pick up on the disorder, Watson said.

Evans said ultrasounds today can even raise red flags for Down syndrome, although the condition is not treated in the womb, and alert a woman that she might need genetic screening.

"There are certain markers on ultrasound that change the odds (of a genetic disorder), for example the nuchal translucency, which is thickness of the back of the neck in the first trimester, can be a marker for Down syndrome," said Evans.

Garrison said she chose to go to the public with her story because, her family had never heard about Brielle's disorder, unlike Down syndrome or other more well known conditions.

"It's just so rare, most people don't know that it really exists," said Garrison "If more people know about it, then it's more likely people will study it."

For the next few years, Brielle will have to see doctors for conformers -- balls filled with hydrogels to increase the size of her eye sockets -- in order for her facial structure to grow normally.

Fay says he and his colleagues at Massachusetts Eye and Ear are continually looking for new ways to help children with the condition grow as normally as possible before they receive prosthetic eyes.

Since speaking with ABC News affiliate WPBF in West Palm Beach, Fla., Garrison said parents of children with anophthalmia or microphthalmia have contacted her seeking support.

"A lot of worse things could have happened and thank god they didn't," Garrison said. "I see her just as any other baby. She does everything any other baby would."

Texas boy with spina bifida shows his lamb in livestock show

From the Fort Worth Star-Telegram:

FORT WORTH — Dressed for the cold in a hooded red sweatshirt, Case Graham (pictured) sat in a wheelchair in a corner of the show ring, holding a tight rein on Bob.

"Dad, how much does Bob weigh?" Case asked.

Bob is the boy’s lamb.

"He’s 114 pounds," Keith Graham said.

"Is that good?"

The father smiled.

"Perfect," he said.

Keith and Tracy Graham’s oldest child was born with spina bifida, the most common severe birth defect in the United States, affecting about 1,500 babies each year.

Case, 12, a sixth-grader, learned to walk, using forearm crutches, before age 5.

"He’s a go-getter," his mom said.

"A trouper," his dad said.

Since September, when Keith Graham bought a lamb for each of his two sons to raise, Case and his 8-year-old brother have dutifully fed, watered and cared for the lambs.

Both boys, from Anson, near Abilene, looked forward to coming to the Fort Worth Stock Show and leading their animals around the ring at today’s junior lamb show.

But Case had another setback in November.

He needed surgery to relieve a pressure-point wound on his backside.

In late December, after the stitches failed to hold, he returned to a Dallas hospital. Case, who has undergone more than 20 major operations, spent Christmas recuperating, lying on his side.

Case was determined to continue his 4-H project.

Day after day, he walked the haltered animal from a golf cart.

Two weeks ago, Case weakly made his way on crutches to the barn to feed Bob.

His father had to carry him back to the house.

Keith Graham said his son still very much wants to show his lamb.

"He understands" he can’t, Keith Graham said, "but he doesn’t want to accept it. And that’s OK. There’s nothing wrong with that."

For Case, experiencing the Stock Show is still fun, an adventure.

At 7:30 a.m. Friday, he happily explored the huge Sheep Barn. His eyes took in the rows of pens, the sacks of feed and pine shavings, the faces of other exhibitors as they exercised their lambs and placed them on scales for weighing.

The excitement filled him with questions.

How much does Bob weigh? Where’s the show ring? What time is the show?

His brother had a question, too.

"Dad, can I have a corny dog?"

"No, not for breakfast," Keith Graham told Cooper, who this morning will parade two white lambs in front of the judges — his own entry, Tiger, and his big brother’s.

He doesn’t want to accept it. And that’s OK."

Keith Graham, referring to Case’s desire to show his lamb

Michigan cities seek to limit medical marijuana

From the Detroit Free Press:

Christopher Frizzo (pictured) of Royal Oak, Mich., said marijuana helps him battle symptoms of his multiple sclerosis.

But during a routine traffic stop Jan. 11, police took his medical marijuana and refused to return it, said Frizzo, 47.

Although he was approved by the state to use medical marijuana, he didn't register for a state-approved caregiver to be his supplier, Frizzo admitted. His state registration card is stamped "No Caregiver."

When the cop saw that, he had to seize Frizzo's seven grams of grass -- roughly seven cigarettes' worth -- "or we're legitimizing an illegal drug purchase," City Attorney Dave Gillam said. Frizzo said he got the drug from a licensed caregiver, but not from anyone he'd named in his state paperwork.

The dispute highlights one of the ways local governments are struggling to deal with Michigan's new law on medicinal marijuana. Another dispute has communities across metro Detroit debating whether to pass local ordinances on who can dispense medical marijuana, and where.

The law has led to "disagreements all across the state," Michigan Department of Community Health spokesman James McCurtis said.

"The law needs changes," Frizzo said.

Communities in Michigan are passing or considering zoning changes and ordinances to regulate the distribution of medical marijuana from within their borders.

Livonia passed an ordinance last fall. Grosse Pointe and Huntington Woods did so this month. Clawson, Royal Oak and Hazel Park are drafting ordinances.

The state's medical marijuana law, overwhelmingly passed by voters in 2008, is vague on where and how state-approved providers of the drug -- called caregivers -- can dispense marijuana to state-certified patients.

"I suspect over the coming months, virtually every city will pass some type of ordinance" on marijuana, Huntington Woods City Manager Alex Allie said.

Many local officials said it is imperative to get something on the books that regulates or bans dispensaries, a term in other states for shops that sell marijuana to anyone approved for using it as medicine.

Michigan's act does not mention dispensaries, and the Michigan Department of Community Health, in a statement last week, said "it is illegal to operate a marijuana dispensary here."

The number of people who want to use marijuana for medical purposes -- and are required to get a doctor's approval -- is swelling. More than 7,000 patients and 3,000 caregivers -- those licensed to grow marijuana for patients -- have registered with Lansing.

What some call Michigan's first dispensary began selling pot this month in Ypsilanti.

But operator Anthony Freed, founder and CEO of the Michigan Marijuana Chamber of Commerce, calls it "a compassion center." He compared it to a private club.

"We had our first 100 patients within five hours with no advertising," Freed, 31, of Brooklyn, Mich., said Friday.

Livonia has prohibited dispensaries, though City Attorney Don Knapp said cities don't want to stop legitimate users from alleviating their suffering.

"There are physicians advertising for patients just to approve them for using marijuana," Knapp said.

Huntington Woods' ordinance, passed Jan. 19, forbids dispensaries and regulates caregivers, case by case.

"Basically, we will allow what the state allows for an individual cultivating this in their own house, for their own use," Allie said.

The ordinances someday will be challenged in state courts, said Detroit lawyer Matthew Abel, who said he specializes in advising caregivers of their rights.

Ordinances in Livonia and other cities amount to "a paranoid attempt to keep out all illegal drugs while stifling the legitimate medical use of marijuana," Abel said.

Blind man in Texas says drivers move into the crosswalk while he's still there

From WFAA-TV in Dallas:

PLANO, Texas — A blind Plano man says drivers are making his daily trek to the bus stop a life-threatening ordeal.

Justin Maldonado uses a guide dog to help him cross busy Preston Road at Ventura Drive. When the light on Preston Road turns red, Maldonado and his guide dog have 32 seconds to cross before the light turns green.

But when it does, they are still in the middle of the intersection.

“We're moving slowly, because he's supposed to move slowly for my safety," Maldonado said, "so people honk at us and they yell at us."

He asked the city to make the light longer, but Plano traffic engineer Lloyd Neal says the lights are timed correctly, based on how long it takes senior citizens to cross.

"The thing we need to be very diligent now is with motorists and pedestrians," said Plano Police Department spokesman Rick McDonald. "Cross when it's safe. Don't walk in front of cars. And if you're in a vehicle and you see someone in a crosswalk, use a little bit of safety."

McDonald said if pedestrians are past the median when the light turns green, drivers must yield to them. But if the pedestrians are less than half way across when the light changes, they must stop in the median.

Maldonado said it’s hard to understand why drivers are not more courteous toward him and his dog, Deuce.

“It makes me feel upset because I'm trying to get across safely. But those people are flying across Preston," he said.

Police want to talk with Maldonado to find him a safer place to cross or another mode of transportation.

News 8 checked with both Dallas and Fort Worth. Both use similar timing guidelines to Plano, one second for every four feet of pavement. They agree that the driver is responsible for yielding to pedestrians.

Saturday, January 30, 2010

A Technoccult interview with a neurodiversity activist

From Klint Finley at Technoccult:

Kassiane (pictured), who prefers I don’t run her last name, is a neurodiversity advocate based in Portland, Ore. She was born autistic & epileptic and has spoken at neurodiversity conferences around the world. She spoke to me via instant messenger.

Klint Finley: Could you give us a brief overview of what “neurodiversity” means, or at least what it means to you?

Kassiane: Neurodiversity, the word, simply means the whole variety of different brain wirings people have…from the different kinds of normal to the different kinds of not so normal. Then there’s Neurodiversity, the movement which is the shocking idea that people with non standard wiring are human and deserve to be treated as such without being “fixed” first.

What conditions may be included in the movement?

Autistic/Asperger people tend to make up the base of the movement, because we latch onto things so well, but we’re really inclusive…ADHD, learning disabilities, mental health issues, cognitive conditions like Down Syndrome, epilepsy, migraines, neurotypical allies, Not Diagnosed Just Weird…we’re accepting of pretty much everyone.

Is there a point at which a line is drawn between “neurodiverse” and disabled?

The 2 aren’t mutually exclusive. You can be different and disabled, but being disabled doesn’t keep you from being a human worthy of respect.

How did you get involved in the neurodiversity movement?

I was born autistic & epileptic, & being told I’m broken hasn’t ever gone over well with me. When I was 16 or 17 I read and saw there are other people who feel the same way, and it was like “Hot damn! community! whee!” and it just snowballed from there.

Are you involved in any particular organizations?

I’m involved with ASAN-Autistic Self Advocacy Network, & have done several conferences for Autism National Committee.

Can you tell us about some of the activism you’ve been involved with?

Way back in the day at a big conference we petitioned to get a very abusive school kicked out of the exhibit hall of said large conference. Since the school in question doesnt believe in human rights it was big gesture, small step–we’ve been working to have them closed down for years.

ASAN has recently taken to picketing events that seek to eradicate autistic & other neurodivergent people, to show the public that eradication isn’t the only viewpoint. We’ve also done a lot of writing to congress and other important people.

I was also involved in the petitioning to have a teacher in Florida who voted a kid out of her classroom delicensed, though that’s all still pending.

Can you be more specific than “events that seek to eradicate autistic & other neurodivergent people”? What particular organizations do you think are problematic?

Oh, Autism Speaks. They totally need to climb a rope and let go. As do Defeat Autism Now!, TACA, and and Generation Rescue.

In what way do they seek to eradicate autistic people?

Prenatal testing to prevent us from being born, specifically. And then there’s the wackaloons who think it’s ok to kill us, who are always fun.

Who are the Wackaloons?

It’s a generic term that here means “person so far disconnected from realityland that I’m not sure how to deal with them” there are wackaloons in all those groups. They pop out of the woodwork when a kid is killed, or an adult, which happens far too often.

Gotcha. And so some wackaloons think it’s ok to kill autistic people who have already been born? What, as some sort of euthanasia? How common is that?

Well, this website is incomplete. And with every one of those in my memory, there were people defending the murderers. Not to mention the one I followed most closely in 2006 or so, where the whole town and even the newspaper were supportive of the killer.

Should neurodiversity be important to “neurotypicals”?

Of course.


I assume that a cookie cutter world is boring to you. And many people won’t be neurotypical forever. Besides that whole “civil rights” thing, which majorities aren’t always so awesome at.

By “many people won’t be neurotypical forever” are you referring to cognitive decline people experience with age?

Cognitive decline, head injuries, infections that affect the brain, neurological diseases, stroke…brains are fragile

Do you think the criminal justice system should treat people with an autism spectrum diagnoses differently than a “neurotypical” person?

It depends on the person, & on what they did. Like, if I go knock over the 7/11, I’m fully capable of knowing that’s wrong and of not doing it. But if someone has an irresistable compulsion to, say, go stare at fountains and gets arrested for tresspassing for staring at a fountain, their neurology may need to be taken into account.

Autism surely isn’t a get-out-of-jail-free card.

What do you think about use of the “r-word”?

Uhm. I hate it with the passion of 100,000,000 firey suns and have nearly gotten the shit kicked out of me on the bus for expressing this loathing.

To be honest I hadn’t really thought about it much before I read you ranting about it on Twitter a while back. But on further examination it’s weird how many people (myself included, unfortunately) would use the word without giving it a second thought, but would never defend the use of racial slurs.

Exactly! or they get all offended about homophobic slurs, but they throw around the r-word like a tennis ball. seriously? It’s not ok. It’s only remained ok because the people who it’s actually slamming are often unable to tell the ones using it to shove it.
It’s all about the power dynamics, & lack of creativity in insults.

What about using the suffix “tard” to create new slurs for specific groups (itards for Apple users, Paultards for Ron Paul supporters, etc.)?
That’s not any better. It’s not even creative. And it still comes from a place that says it’s ok to slam people who are cognitively disabled, and from a place that says “these people hold irrational to me beliefs because they’re cognitively impaired.”

A year or two ago I read an article musing on the possibilities of creating pills that could temporarily “cure” or even *cause* autism. The basic idea is that someone born with autism could take a pill to become neurotypical at a party, or a neurotypical person could take a pill to become autistic temporarily to accomplish some particular task. Scientific feasibility aside, what do you think about such a possibility.

It’d be confusing in the extreme.

I couldn’t function in an NT brain, any more than you could function in my autistic brain. I’m USED to hearing and seeing and taking in everything and focusing on the details. Take that all away & for the duration of the dose, I’d be lost.

Give an NT autistic-like thought processes and perception, & they couldnt use the pattern recognition or hyperfocus or whatever…they’d be too busy looking for better earplugs and sunglasses because the lights are loud and flickering. Scientific feasability aside, there’s no way anyone would actually use it.

You can dual boot a computer. You can’t dual boot a brain.

Book editor wonders if it is taboo to talk of possible mental illness associated with J.D. Salinger

By Jane Henderson, St. Louis Post-Dispatch Book Editor:

Charles McGrath wrote a masterful obituary of J.D. Salinger for The New York Times.

Although most people believe it is right to only speak of the good qualities of the newly deceased, perhaps the words “mentally ill” should not be left out of appreciations of Salinger.

Traditionally, reporters do not report things they can not verify. But some of the disturbing parts of Salinger’s life - his affinity for teen girls, his daughter’s report about his interest in cults, drinking urine, etc. - are indeed being reported. Many of these reports, taken together, show that Salinger probably suffered some sort of mental illness.

So why don’t the obits use that term? It’s not derogatory. It doesn’t take away from his great, published literary works. It’s just part of the life. If his unpublished manuscripts did include pages written under the influence of mania, so be it.

If Salinger suffered from mental illness (like other unique voices such as David Foster Wallace and John Kennedy Toole, both of whom killed themselves), it was a fact of his life that may have influenced his works. But accepting that fact takes nothing away from his great characters, Holden and Seymour.

Fifth grader with autism wins National Geography Bee


Eleven-year-old Aaron Cvengros of north suburban Winthrop Harbor is autistic. But that didn't stop the Our Lady of Humility School fifth-grader from becoming the first student there to win an academic competition with the use of a letter board.

Aaron won the National Geographic Geography Bee on Jan. 22, participated in by other fourth- through-eighth-grade OLH students. The contest is designed to help spark interest in the subject.

Identifying the location of Puget Sound was the winning ticket for the boy.

"It was one of the most remarkable things I've ever seen," said OLH Principal Patrick Browne. "This was one of those breakthrough moments. And it was the first time a student at OLH has won a contest using the RPM (Rapid Prompting Method)."

Denise Lamm, Aaron's assistant who helps him in the classroom, said the boy used the regular letter board for the geography bee, using RPM by pointing to each stenciled letter with a pencil to spell out his answers. "He used the stencil so the judges could see his choice," said Lamm. In class he sometimes uses a laminated board.

Aaron's mom, Annette, said her son has been using RPM to communicate since he was in the first grade.

Aaron, using a letter board being translated by his mom, said he won a medal in the competition. His mom said he wouldn't wear the medal all day at school because he didn't want to seem boastful in front of his fellow students.

"He said that he congratulated the other young lady (runner-up Sarah Olson) and he told her she did her very best," said Annette.

"We are just really proud of him," said his mom. "It's an awesome accomplishment and what's great is he has a real interest in this." Part of Aaron's therapy included intense studying of maps since he was only 2. "It paid off," said Annette.

Annette explained she prefers to say that her son is "recovering" from autism. "Because that's how we see it," she said. "We've seen many children improve." Consistently working with Aaron and providing him expert help has made the difference, she says.

His mother also believes allowing Aaron to be in a regular classroom has also been good for his academic and emotional growth. He has been in an inclusive setting at OLH since kindergarten.

"By winning this competition, a public statement was made that goes to show that just because of autism, you are still capable," said Principal Browne, adding that one out of every 150 children has been diagnosed with autism.

"It's an encouraging story," said Aaron's mom. "Not too many special-needs families get encouraging words. And this is hopeful because it shows that all things are possible."

Annette and her husband Terry have two other children, including Deliah, 17 who has Retts Syndrome, and attends Laremont School in Gages Lake. Another daughter, Seiree, is an eighth-grader at OLH. Grandmother is Beach Park Village Clerk Laurie Cvengros.

Aaron's mom and Seiree, 13, helped him study for the bee. Though she said she had every confidence in her younger brother's intellect, Seiree said she wasn't sure he'd win the contest because of his age. "I think he's really smart. Better than me at his age," said Seiree.

After two hours of intense questioning, seventh-grader Sarah Olson and Aaron competed for the top.

After being notified Aaron won, the Cvengros family celebrated by eating brownies and special gluten-free cake (Aaron is allergic and eats gluten-free food).

This week, Aaron took a 70-question written exam to see if he qualifies for the state level of the geography bee. In March, OLH will be notified if Aaron will go on to the state competition.

In May, state winners are invited to Washington D.C. to compete in the national finals. Prizes include scholarships in the amounts of $25,000, $15,000 and $10,000.

Asked of his mother what he would do if he gets to go to the national level, Aaron said with his letter board, "I would be excited and I think I would have a shot at winning."

Dad of disabled teen in Florida wins fight over reimbursement for diapers

From the Miami Herald:

Severely disabled, Sharett Smith, 17, needed one thing in order to leave behind her green-and-white plush doggie and her brown teddy bear and go out with her family to church or the park: diapers.

At a price tag of $200 to $300 per month, her widowed father could not afford them. And the state's Medicaid program, which pays for Sharett's care, refused to help.

This week, a federal judge ruled that, for Florida children like Sharett, diapers are a medical necessity -- not a ``convenience'' -- and ordered the state Agency for Health Care Administration to pay for them. The ruling could affect thousands of sick or disabled children throughout the state.

In the 28-page ruling, U.S. District Judge Alan S. Gold said he understood the state's plight in an unforgiving budget year. ``Florida has limited resources, particularly in an economic downturn, and must make tough choices about where to invest those limited resources.''

But he added: ``While I doubt neither the gravity nor the difficulty of funding Medicaid obligations, such concerns do not excuse a violation of federal law.''

``I am very happy with the decision,'' said Floyd Smith, 53, Sharett's father. ``When I approached Legal Services with this problem, I said it was not only for Sharett, but for other less-fortunate children -- children in the same situation, or maybe even worse.''

Court records say about 12,000 Florida children could be affected by Gold's ruling, at a potential cost of $19 million a year, about two-thirds of which would come from federal grants.

In a statement e-mailed to The Miami Herald, the state agency said it is examining its legal options.

``In the last legislative session [before this lawsuit was filed], the Agency asked for funding for diapers for children between 3 and 21 who suffered from medical conditions that lead to incontinence. The Governor's current proposed budget also asks for this funding. Legislators have been receptive to these requests, but severe budgetary constraints have made it difficult to fund them,'' the statement said.

Smith, of Miami, is raising Sharett and two other young children on about $1,000 a month in Social Security disability and survivor's benefits. His wife of 26 years died of a brain tumor. The $200 to $300 he spent each month for diapers for Sharett represented 20 percent or more of his budget.

The money, he said, can be used for school supplies, clothes and other items for Sharett's 5- and 9-year-old sisters.

Diagnosed with cerebral palsy and severe mental retardation, Sharett cannot talk, and cannot even watch television, which she does not understand.

Sharett's world already is painfully small. Smith takes her to church, but trips to the park or elsewhere draw unwelcome attention.

``Other kids in the area where I live look at her in a funny way,'' Smith said. ``Her sisters say, `Daddy, let's go. Look at how they're looking at Sharett.'

``We don't go out a lot.''

Smith testified at trial that he had tried a number of times to toilet-train his daughter, but to no avail. The girl's longtime pediatrician testified that with Sharett's cognitive abilities, toilet training is not really possible.

Without diapers, Smith would have been forced to consign his daughter to life inside his very modest home. She cannot attend school without diapers because of sanitary concerns, and she could not attend church or other activities in the community either, said attorney Monica Vigues-Pitan with Legal Services of Greater Miami.

On behalf of his daughter, Smith sued the Agency for Health Care Administration on June 8, 2009, arguing that, under federal law, the state cannot simply refuse to provide briefs for Medicaid recipients who needthem.

If a state chooses to participate in Medicaid, a joint state-federal insurance program for the needy or disabled, it must provide all the care and services the program requires, the judge wrote.

``Because Florida participates in the Medicaid Program,'' Gold wrote, ``it must comply with the Medicaid Act and corresponding regulations.''

Smith's doctor, Audrey Ofir, a pediatrician at the University of Miami, had testified that ``if left on her own, Sharett would spend hours playing with one stuffed toy.'' Diapers, she added, allow her ``to engage in necessary life activities such as socializing with others, attending school and participating in public events with her family.''

If forced to do without briefs, Ofir testified, Smith would constantly soil herself and her clothes. This would ``harm her physical and mental health,'' Gold wrote in his order.

The state had suggested Smith could get help for his daughter in other ways, such as placing her in a nursing home or institution, or from a community-based care program for disabled Floridians -- though that option is not available since Smith is already on a waiting list, along with about 17,000 others.

Smith's plight was detailed in a Miami Herald story in June 2009. Dozens of readers donated diapers and other supplies to the family, and another state department, the Agency for Persons with Disabilities, agreed to pay for the briefs while the lawsuit was pending.

But with Gold's ruling, the Agency for Health Care Administration will be forced to provide briefs for all children whose disability or medical condition leave them incontinent.

More than 4,300 veterans with PTSD receive benefits upgrade

From The Daily Herald in Everett, Wash.:

More than 4,300 Iraq and Afghanistan war veterans who were diagnosed while still in service as suffering from post-traumatic stress disorder, but got low military disability ratings, have won an agreement to upgrade them retroactively to 50 percent.

The higher rating will represent an important win for this group of veterans mentally scarred by war.

It will mean, from date of discharge, eligibility for disability retirement and access to Tricare, the military's triple health insurance option, for the veterans, spouses and dependent children.

Any out-of-pocket medical costs since discharge also could be paid retroactively, and these soon-to-be-designated disabled retirees will gain access to discounted shopping and recreational services on base.

Sparking the agreement is a class-action lawsuit brought by the National Veterans Legal Services Program, which contends that the services illegally denied retiree status and medical benefits for years to these veterans who were diagnosed with stress then separated as unfit for service.

Service evaluation boards routinely separated their members with disability ratings as low as 10 percent.

A rating below 30 percent lowers personnel costs. Instead of an immediate annuity and lifetime health care coverage, veterans rated below 30 percent get only a lump sum severance pay.

Judge George Miller agreed to delay a final ruling in the case of Sabo, et al v. United States after defense officials agreed to cut the deal.

Misty Sabo, wife of former Army Sgt. Michael Sabo, an original plaintiff of the Sabo case, said she was excited to learn of the agreement this week. Five of their six children are disabled with bilateral cleft lip and palate, which creates hearing, dental and speech problems and requires multiple surgeries. Family medical bills, said Misty Sabo, are enormous.

Michael Sabo, 31, had served in the Army more than a decade when he was diagnosed with traumatic stress after two tours in Iraq where he routinely went on patrols that exposed him to multiple explosions and enemy fire.

In the middle of his second tour, which again exposed him to explosions, mortar attacks and small arms fire, he returned home on emergency leave to care for his children while his wife underwent surgery. While home, he had nightmares, severe headaches and violent mood swings that the lawsuit contends, “severely impacted him and his family.”

He sought medical help and was diagnosed with traumatic stress and post-concussive syndrome. In February 2008, the Army separated him as unfit with a 10-percent disability rating and a modest lump-sum payment.

Misty Sabo said she was stunned that the Army rating was only 10 percent for a condition that ended his career and changed his life so dramatically.

“He was just thrown to the wind,” she said.

“I didn't care at the time,” said Michael Sabo, in a brief phone interview.

By October 2008, under pressure from Congress, officials did advise the services to rate stress victims at a 50 percent disability. Meanwhile, Congress ordered the defense department to create a special board to review any service-generated disability ratings of 20 percent or less for veterans separated as medically unfit since Sept. 11, 2001.

A class action notice is being mailed to the 4,300 veterans and must be returned either by fax or postmarked before July 24, 2010. Veterans who don't get a notice by mail but believe they might be eligible can get more information at

New Mexico decides not to tax medical marijuana

From The Associated Press:

SANTA FE, N.M. - A proposal to tax medical marijuana in New Mexico ran into strong opposition on Friday and a House committee shelved the measure.

The proposal would impose a 25 percent tax on the value of marijuana grown for medical purposes.

A 2007 law allows people with certain medical conditions to get relief by using marijuana. About 1,000 patients are registered with the state.

One of those patients, Paul Culkin of Albuquerque, told lawmakers he spent $800 a month for two ounces of medical marijuana. The 30-year-old Army veteran suffers from post traumatic stress disorder.

A tax would increase prices, Culkin said, and "this would cause me to go out on the street" to buy cheaper marijuana.

"We don't want to drive patients to the black market," said Reena Szczepanski of Drug Policy Alliance New Mexico, who lobbied for the medical marijuana law.

The state doesn't tax prescription medicines and opponents said the medical marijuana tax would hurt patients with serious illnesses, including cancer, multiple sclerosis, Lou Gehrig's disease, HIV-AIDS and certain spinal cord injuries.

"Most of the patients are on fixed income," said Szczepanski.

Len Goodman runs a nonprofit that is one of five licensed by the state to produce and distribute medical marijuana. He sells marijuana for $280 or $360 an ounce.

Goodman said patients can't afford to pay the proposed 25 percent tax and producers can't absorb the tax in their costs.

"The licensed producers are working on very thin margins," he said.

The bill's sponsor, Rep. William Rehm, an Albuquerque Republican and retired police officer, said he proposed the tax to help provide money for Medicaid. The program provides health care for the needy and is facing cutbacks because of a state budget crunch.

The tax could generate $1 million a year, according to a legislative bill analysis. But Rehm said the estimate was highly uncertain because of a lack of information on marijuana prices.

The House Taxation and Revenue Committee voted 14-1 to table the bill, which probably dooms it for the session. The measure remains alive but it's bottled up in committee unless members change their minds, which appears unlikely to happen. A similar proposal is pending in a Senate committee.

Korea's first disabled prosecutor begins work

From The Dong-A Ilbo:

The list of some 120 new prosecutors to be announced by the Justice Ministry includes one set to become a pioneer in the Korean prosecution.

Yang Ik-joon, 31, who has completed courses for junior lawyers at the Judicial Research and Training Institute, is paralyzed from the waist down. He will become Korea`s first disabled person to be appointed a prosecutor Feb. 8.

In an interview with The Dong-A Ilbo yesterday, Yang was all smiles, saying he is "happy" to prove that he does anything despite his physical disability.

In 1997, Yang was a high school senior when he missed a step that caused him to fall off from the rail of his home about 100 days before taking the college entrance exam. His family took part in his rehabilitation and treatment, but he ended up in a wheelchair.

“Lying in bed all the time, I began to see people who are physically challenged,” he said. “I chose to major in law to find a way to help them.”

He overcame challenge after challenge until finally graduating from the judicial institute, a training center for those who passed the national bar. When he entered Yonsei University College of Law in 2001, his family left his hometown of Masan, South Gyeongsang Province, and moved to a small room in western Seoul to support him.

His father had to give up his job to help him, so Yang`s family became poorer. Yang had to take a taxi all the time because he could not afford a secondhand vehicle to accommodate his wheelchair.

Many law majors tend not to care so much about their grade point average than others because they must fully devote themselves to state-administered judicial exams. Yang, however, had to maintain a high grade point average to get scholarships covering his tuition. When he started to prepare for the judicial exams, he attended on-campus lectures for about half the cost of those at private institutions at the Sillim-dong district.

His dream of becoming a prosecutor grew clearer as he attended lectures at the Judicial Research and Training Institute. “I really enjoyed subjects related with prosecution,” he said. “I received higher scores in those subjects than in others.”

Yang said he is confident he can be a good prosecutor if he sees the underprivileged from a fair perspective. He wondered, however, if he could investigate cases given his disability, as he had never heard of a prosecutor in a wheelchair.

Professors at the institute encouraged him not to give up, saying he should become a prosecutor to show that a disabled person can do the job.

Working for two months as an intern at a prosecutors` office in Goyang, Gyeonggi Province, he came to believe that becoming a prosecutor in a wheelchair is not impossible.

“Prosecutors I worked for at the office made me learn about the job just the way they do with other people rather than give me favors,” he said. “That was when I learned that the job of a prosecutor has nothing to do with physical disabilities.”

The Justice Ministry had to consider many things when it selected Yang as a prosecutor, but saw no reason not to hire him.

A ministry official said he not only had stellar grades but also maintained good relationships with others to the extent that he never missed a gathering or group activity. “We decided that there was no problem with him executing prosecutorial duties,” the official said.

Yang said, “I hope people who are facing difficult situations don`t think that they cannot do something. I believe one can achieve anything if he or she sets a goal and works steadily to reach that goal.”

Amputee, 11, excels at wrestling

From The Washington Post:

Here's the scouting report on 11-year-old Dayton Webber: No arms. No legs. Huge heart.

Whether he's wrestling, playing football, go-karting or ice skating, Dayton doesn't just participate -- he competes.

"I just like to do sports," Dayton (pictured) said. "I feel like I can play sports and kind of show people what I can do -- that I can do sports just as good as them. I feel like I can do anything if I just put my mind to it."

For four years, Dayton, whose limbs were amputated when he was 11 months old because of a life-threatening bacterial infection, has wrestled competitively in the Maryland and Virginia suburbs. Dayton, who lives in the Charlotte Hall section of Charles County with his parents and his brothers Tyler, 17, and Justin, 5, started out with a club in Calvert County. Now he competes for Rampage Wrestling in Waldorf.

By now, Dayton is well known on the local wrestling circuit. When he started out, his very presence moved some parents of wrestlers on other teams to tears.

"It's a moving thing, seeing him out there, trying his heart out," William "Lou" Hennessy said.

Hennessy, a district court judge in Charles, first saw Dayton at a competition two years ago. He rounded up his three sons, who were wrestling for another team, and a teenager who also wrestled and was living with his family and had them watch Dayton. "Some kids don't know how good they have it," Hennessy said.

Dayton doesn't quite get all the fuss. Sports run through his family, so competition is in his blood. He would have it no other way.

A lot of kids are curious when he meets them, said Dayton, an articulate sixth-grader. They ask how he lost his hands and feet and parts of his arms and legs. He answers. It's no big deal.

Every now and then, he said, a kid will express doubt that Dayton can play or compete. And then that drives him.

"Anything they say I can't do, I try to show them I can do it," Dayton said.

He showed his drive at a recent match in Waldorf, where no one batted an eye during his bout. The referee blew his whistle, and Dayton and Mac Scott began grappling for position.

Mac, 9, maneuvered himself onto Dayton's back, pressing until Dayton's face nearly touched the mat. Dayton rose and flipped his opponent to the mat. After three one-minute periods, the whistle blew again. Mac won on points, 4 to 1.

Mac offered his hand for the postmatch handshake. Dayton reached out and touched it with his padded stump.

Mac's mother, Geanie Scott, said it was hard to watch the match because she wanted to root for both boys. "We all have challenges, but he has more," Scott said.

Good luck convincing Dayton of that.

'He's just a boy'

Dayton not only skateboards but also does tricks -- the equivalent of handstands on his arm stumps. He races go-karts, with the help of Velcro-outfitted gloves that help him control the steering wheel with the insides of his biceps. He plays video games, such as "Madden NFL 10," balancing the controls on his lap and pecking at the buttons.

He ice-skates. "We just stick his legs in the skates and tie them real tight," said his mother, Natalie Webber, 37.

Dayton is also the family's most skilled user of chopsticks, she said.

His parents said they never pushed him to play or compete, nor did they discourage his athletic aspirations. (Dayton, though, contends that he had to nag his parents to let him play football.)

"He's just a boy," Natalie said. "In our family, that's what kids do. All the members of our family are athletically oriented. Anything a kid would want to do, he does."

When he was 8 and 9, Dayton played on a youth football team, which had an "A" squad for the better players and a "B" team. Dayton played for the "A" team. He has prosthetic legs, but he eschewed them on the gridiron. On his stumps, he played on the defensive line, usually lining up in a four-point stance, sometimes standing upright like a linebacker.

Before long, his teammates and coaches were calling Dayton "the Vacuum" because he was so good at recovering fumbles -- at least four in one game.

"He has a nose for the football you wouldn't believe," said Rich Brenner, one of Dayton's football coaches.

Being lower to the ground than other players can be an advantage, Dayton said. As plays developed, he said, he could look between offensive linemen and see in which direction the quarterback or running back was headed with the football.

"I'd bear-crawl past the linemen," Dayton said. "I liked trying my best to get through the line."

Willingness to learn

As for wrestling, Dayton wins his share of matches, pins his share of opponents and has been pinned only once -- in his first year of wrestling, when he was 7, said his father, Mike Webber.

Because of his physical limitations, Dayton can't execute certain wrestling moves. But his opponents also can't use certain basic tactics, such as going for his ankles.

Harry T. Hornick was Dayton's first wrestling coach. He said that when the Webbers brought Dayton to him, he thought, " 'Poor guy.' But you could tell from the look on his face he was very excited. He had a sparkle in his eye, like, 'This is going to be fun.' I basically started thinking, 'I'll have to figure out how he can wrestle.' "

Dayton's willingness to learn was a big plus, Hornick said. "Getting him to try stuff is easy. He's really a tough kid to pin, because he's strong, he's quick, he tries hard. These are all characteristics of a good wrestler."

Wrestling matches are paired according to weight. Dayton wrestles in the 52- to 55-pound group, often against kids who are younger. In practice, he participates in all the drills his fellow Rampage wrestlers do. When they run laps, Dayton hustles around on his stumps.

At the end of practice, the wrestlers pick up a fellow wrestler and carry him over a shoulder in a firefighter's drill. Dayton picks up his brother Justin, who also wrestles, and is a mere 10 pounds lighter.

An emergency-room visit

Natalie Webber said she thinks Dayton's resiliency has something to do with the ordeal he survived as an infant.

In May 1999, his parents took Dayton to an emergency room in La Plata. He was swollen and had a 105-degree fever.

Doctors found that Dayton had been born without a spleen, an organ that helps filter bacteria from the bloodstream. He had streptococcus bacteria in his bloodstream, and the flow to his extremities was compromised.

Dayton's prognosis was so dire at first that a doctor asked his mother if there was anything she wanted done if the boy couldn't be saved.

Natalie Webber, a Catholic, wanted Dayton baptized.

A priest was summoned. As Dayton's parents, siblings and other relatives stood nearby, the priest baptized Dayton. Then he administered last rites.

Dayton ended up spending four months at Children's National Medical Center. To save him, doctors amputated at the knees and just above the elbows.

"For a kid to come so close to dying, I think he has it in him -- that drive to survive," Natalie Webber said.

And to have fun.

On the same day he lost to Mac Scott, Dayton pinned another opponent.

Dayton touched the other boy's hand, then scampered toward his parents, beaming.

New rules from Obama administration promise better mental health coverage

From The New York Times:

WASHINGTON — The Obama administration issued new rules on Feb. 29 that promise to improve insurance coverage of mental health care for more than 140 million people insured through their jobs.

In general, under the rules, employers and group health plans cannot provide less coverage for mental health care than for the treatment of physical conditions like cancer and heart disease.

Insurers cannot set higher co-payments and deductibles or stricter limits on treatment for mental illness and addiction disorders. Nor can they establish separate deductibles for mental health care and for the treatment of physical illnesses.

Such disparities are common in the insurance industry. By sweeping away such restrictions, doctors said, the rules will make it easier for people to obtain treatment for a wide range of conditions, including depression, autism, schizophrenia, eating disorders and alcohol and drug abuse.

For decades, many health plans have had limits on hospital inpatient days and outpatient visits for mental health treatments, but not for other types of care.

Kathleen Sebelius (pictured), the secretary of health and human services, said the rules guaranteed that people with debilitating mental disorders would not suffer “needless or arbitrary limits on their care.”

The rules, which take effect on July 1, carry out a 2008 law that was adopted with bipartisan support. They significantly expand the rights of people with mental illness, much of which goes untreated because of insurance restrictions.

Under the rules, insurers can still review claims for “medical necessity,” can still require prior approval of some services and can still charge consumers more for using doctors and hospitals that are not on a list of preferred providers.

But under the rules, insurers cannot use these techniques in a more restrictive way for mental health care than for other medical services.

The administration said the new requirements could increase premiums by four-tenths of 1 percent, or $25.6 billion over 10 years. Businesses with 50 or fewer employees are exempt.

The rules apply to group health insurance plans of the kind typically offered by employers. Federal health officials said the rules did not apply to the individual insurance market, where policies are sold directly to individuals and families. However, some states have laws that apply to the individual market.

Irvin L. Muszynski, a lawyer at the American Psychiatric Association, praised the government’s decision to require a single deductible for mental health and medical-surgical coverage.

“Patients with mental illness often have general medical conditions like diabetes or high blood pressure that require treatment at the same time,” so a combined deductible makes sense, Mr. Muszynski said.

The rules were developed by the Labor Department, the Department of Health and Human Services and the Internal Revenue Service, which share responsibility for their enforcement.

The government said the rules would benefit 111 million people in 446,400 group health plans offered by private employers, and 29 million people in 20,000 plans sponsored by state and local governments.

In the new rules, the government says a health plan would be violating the law if it “imposes an annual $250 deductible on all medical-surgical benefits and a separate annual $250 deductible on all mental health and substance-use disorder benefits.”

The rules say that an insurer may require “prior approval that a course of treatment is medically necessary.” But the insurer cannot enforce this requirement in different ways for medical benefits and mental health services. For patients who receive treatment without prior approval, the penalty must be the same.

A number of companies specialize in managing mental health benefits. The Obama administration said the techniques used by these companies would hold down the cost of complying with the new rules.

But, it said, the standards and techniques used to manage mental health benefits must be comparable to those for other medical care and cannot be applied more stringently.

In a preamble to the rules, the Obama administration said that patients had typically faced higher co-payments for visiting mental health professionals than for visiting primary care physicians.

The rules are likely to reduce this disparity, so more people will be treated by mental health professionals, the administration said. This, in turn, “could lead to more appropriate care and thus better health outcomes,” it said.

The law requiring parity in the coverage of mental and physical illnesses is named for its sponsors, former Senators Paul Wellstone, Democrat of Minnesota, and Pete V. Domenici, Republican of New Mexico.

Friday, January 29, 2010

Disabled children in the life of comedian Rosie O'Donnell

O'Donnell's new documentary about family will premiere on HBO Jan. 31. In the People magazine article below about the documentary, she discusses her son Blake's learning disability. She wrote the forward to the book by the speech-language pathologist who worked with Blake. And her new girlfriend, Texas-based artist Tracy Kachtick-Anders, has a son with Down syndrome. Given O'Donnell's long-time support of children's issues, the disability community should connect with her to promote efforts for disabled children.

The People article:

The red carpet is an unusual spot to hang out with your ex – unless you're Rosie O'Donnell. Last week, at the New York City premiere of her documentary A Family Is a Family Is a Family: A Rosie O'Donnell Celebration, the comedian happily posed for photos alongside her four children – and Kelli Carpenter, her partner of 10 years whom O'Donnell only recently revealed she'd separated from in 2007.

"What makes a family is love, and we all love each other," O'Donnell, 47, tells PEOPLE. "We're gonna stay together and take care of each other as a family unit."

The definition of a family is at the heart of the comedian's documentary, which premieres this Sunday on HBO at 7 pm ET and features interviews with kids who come from all different types of families: ones headed up by a mom and a dad, two moms, two dads, as well as a mother and a grandmother. Adoption and surrogacy are also discussed.

"It's just children telling the truth about how they live and how it is for them," says O'Donnell.

A Family also includes new songs by artists including Ziggy Marley and They Might Be Giants, covering everything from love to in-vitro fertilization.

O'Donnell says she was inspired by the popular 1970s album and TV special Free To Be … You and Me, created by Marlo Thomas. "We took that model and just applied it to family instead of equal rights," explains O'Donnell.

The comedian herself appears briefly in the documentary with her daughter Vivienne, 7 (her other kids Parker, 14, Chelsea, 12, and Blake, 10, are seen in video footage), and addresses her split with Carpenter. She also acknowledges how it's "difficult for families to adjust and changes are challenging." (Her next documentary, she reveals, will tackle divorce.)

These days, the exes live near each other in Nyack, N.Y. – Carpenter also has an apartment in New York City – and are raising the kids "equally," says O'Donnell, who hosts "Rosie Radio" on Sirius XM. (She also penned the forward to the upcoming book The Sound of Hope by Lois Kam Heymann, a speech-language pathologist. Heymann has worked with Blake, who has auditory processing disorder, a learning disability.)

Adds O'Donnell, "You have to really look at the four kids and realize that family is forever, which we both believe and it makes it a little bit easier."

Her family may be expanding, too: She says her girlfriend Texas-based artist Tracy Kachtick-Anders, 45, is "hopefully moving to Nyack" with her six children, ages 6 to 18.

"Our group of kids together is like the Brady Bunch on steroids," O'Donnell jokes. "Or the Gay-dy Bunch."

Research of British doctor who suggested autism-MMR vaccine link discredited by Britain's General Medical Council

From the Los Angeles Times:

Reporting from London - The British doctor whose suggestion of a link between the MMR shot and autism helped cause vaccination rates to plunge conducted his now-discredited research in a dishonest and irresponsible manner, medical authorities here concluded Thursday.

It was the latest development in a long-running health controversy that has seen measles make a comeback among British children after being all but wiped out.

The General Medical Council, Britain's medical regulator, found that Andrew Wakefield (pictured) acted unethically in the way he collected blood samples from children and in his failure to disclose payments from lawyers representing parents who believed the vaccinations for measles, mumps and rubella -- given as a single shot, referred to as the MMR vaccine -- had hurt their kids.

The regulator also concluded that Wakefield acted with "callous disregard" by conducting invasive tests on children that were not in their best medical interests.

Wakefield, who now lives and works in the United States, called the allegations "unfounded and unjust" and expressed deep disappointment with the council's finding. He told reporters he had "no regrets" over his work.

In 1998, Wakefield caused a national -- and, later, international -- stir with a study published in the prestigious British medical journal Lancet that suggested a possible link between the MMR vaccine and child autism.

His subsequent, widely publicized comments that he could no longer in good conscience recommend the vaccine to parents caused a dramatic drop in vaccination rates across Britain. A Wakefield appearance on "60 Minutes" helped fuel a vocal anti-vaccination movement in the United States.

His study, however, was based on just 12 children. Lancet later declared that it should not have published the report, and further studies have not been able to replicate Wakefield's results.

Although MMR vaccination rates have begun to recover, Britain has seen a surge in measles among children: more than 1,000 cases in 2008, an increase from several dozen annually a decade earlier.

In its findings, presented Thursday after an investigation that took more than two years, the regulator did not rule on Wakefield's conclusions from his research. But it said his research practices had been unacceptable.

Those included taking blood samples from children at his son's birthday party and paying them each about $8, the regulator found. He also performed spinal taps on children at a hospital without due regard for how they might be affected, it said.

It has not yet been decided whether any disciplinary action will be taken against Wakefield, including revocation of his right to practice medicine in Britain.

Wakefield, who now practices in Austin, Texas, came to London for the council's decision Thursday.

"The allegations against me . . . are both unfounded and unjust," he said, standing amid a small knot of supporters. "It remains finally for me to thank parents whose commitment, whose loyalty has been extraordinary, and I want to reassure them that the science will continue in earnest."

Law & Order: SVU casting for disabled actors

Info from IAMPWD:

Please see the casting breakdown below for NBC’s Law & Order: Special Victims Unit

Law and Order: SVU
Episode Title: "Disabled"
Location: NYC
Shoot Dates: 2/5-2/17
Auditions: Tuesday, 2/2/10
Casting Director: Jonathan Strauss
Casting Associate: Philip Huffman

Seeking Actors who can portray the following characters:

Male; Any Ethnicity; 20’s-Mid 30’s; Left with a Prosthetic Hand/Arm after having it blown off in Iraq; Optimistic; Baby faced, Anxious but determined; Dial-a-Ride bus driver in training. Is nervous while being taught how to drive the bus by his mentor Tony Griegs. Does not have the hang of it yet, but with some more experience he'll be just fine. When a usual passenger fails to show up at the bus stop, he goes to get her, only to find Cara Riley, raped and badly beaten.(THREE SCENES;15Lines)

Male/Female, Any Ethnicity; 40's-50's+; Passengers with Visible Disabilities on the bus while Jake is doing a test drive. Although the Passengers are anxious to get to their physical therapy they realize that Jake is new to the job and must learn before his mentor Tony Griegs retires.(Teaser, 1-2 Lines each)

Female; Caucasian; 18-21; Wheelchair User with Intellectual or Developmental Disability, who used to take the Dial-A-Ride bus everyday till one day she refused. It is believed that she was sexually abused by the bus driver Tony Griegs. When cops come to talk with her and her mother, Beth is initially frightened, but summons the courage to point out her attacker as well as convey what he did to her. (ONE SCENE, Non-Speaking with many Emotional Reactions)

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Experimental surgery in the womb saves baby born last week

From the St Louis Post-Dispatch:

St. Louis has joined a handful of cities nationwide performing a rare and somewhat controversial surgery on a fetus with an undeveloped diaphragm, a life-threatening condition that allows organs to float into the chest and severely restrict lung growth.

The baby that had the fetal procedure — Ali Davis (pictured) — was born Jan. 22 at Cardinal Glennon Children's Medical Center, the first to be delivered at the pediatric hospital because he needed immediate access to a heart-lung machine. To everyone's surprise, Ali's oxygen levels were high enough that he did not need the machine for his first five hours.

"The fetal operation may have caused these changes and ultimately may lead to survival," said surgeon Dr. Ed Yang, co-director of Cardinal Glennon's Fetal Care Institute, which opened last summer.

The operation was also ground-breaking for fetal surgery because Yang experimented with using a gel instead of a balloon to help the lungs grow, which Yang hopes will prove less risky.

It was a procedure Ali's mother, S'ala Davis, 26, of St. Louis, was willing to try. "I'd rather someone take a chance and try to save my son's life than to have not tried at all," she said.

At 20 weeks gestation, an ultrasound revealed that Ali's lungs were virtually undetectable. His liver, a solid organ, was in his chest. Ali had a severe form of congenital diaphragmatic hernia, which occurs in about 1 in 2,500 babies and is more common than spina bifida, muscular dystrophy or cystic fibrosis.

CDH varies widely in severity and outcomes. In best cases, infants do well with surgery after birth. In the worst, babies survive only days. The national survival rate is about 50 percent, according to the Association of Congenital Diaphragmatic Hernia Research, Awareness, and Support.

Yang believes with fetal surgery, he is offering an alternative in cases with little hope.

The surgery — called tracheal occlusion — involves using a tiny scope to place a balloon in the baby's airway, trapping fluid in the lungs and forcing them to expand. That balloon, however, must also be removed in a second surgery before the mother goes into labor. Each surgery increases the women's risk of delivering prematurely. A 2003 study shows that because of this risk, tracheal occlusion does not improve survival rates.

Yang believes blocking the airway with a gel that dissolves after about four weeks will result in better outcomes. "It's new. It's risky," he admits. It requires moms such as Davis willing to be a part of research. "They are doing this for future babies," Yang said. The hospital paid for the surgery, he said.

Some, however, question the science used to predict which babies with CDH will do poorly. "We lose babies with good predicted outcomes, and we see survivors among babies with horrible predicted outcomes," said Dr. Brad Warner, chief pediatric surgeon at St. Louis Children's Hospital.

Before coming to St. Louis, Yang studied at three fetal surgery centers and directed the fetal program at Vanderbilt Children's Hospital in Nashville, Tenn. He studied CDH cases closely, he said, and feels confident that with a variety of tests, he can accurately predict which babies will likely die.

The gel helped Ali's left lung to grow significantly, but not the right. More may have been needed, Yang said. Ali's prognosis is unknown, but his first few hours give his mom hope. "He came out fighting," Davis said.

California trial will focus on safety of botox as treatment for cerebral palsy

From the Los Angeles Times:

Kristen Spears (pictured) started getting Botox injections at the age of 6 -- not to smooth furrows in her brow, but to calm spasms in her legs.

The girl was born with severe cerebral palsy, and Botox, best known as a face-lift-in-a-syringe, can relax contorted muscles and sometimes help young patients walk without surgery.

Instead, Kristen's mother alleges, an overdose of the drug killed her.

Opening arguments in a negligence lawsuit by Dee Spears against Botox manufacturer Allergan Inc. are set for today in Orange County.

At issue is the safety of the blockbuster drug, especially in the higher dosages that are used to treat children with cerebral palsy.

It is believed to be the first Botox case alleging a fatal reaction to reach trial, and is one of several pending suits related to the drug's cosmetic and non-cosmetic uses.

The trial comes less than a year after federal authorities mandated "black box" labels that warn of potentially serious reactions to Botox. And it opens a window on the Irvine-based drug maker's own records of reported ill effects, showing that the company knew of some serious problems linked to neurotoxins such as Botox as early as 2005.

Allergan declined to comment on the trial. In a court motion, Allergan says that Kristen died of a bacterial infection and that her mother cannot prove Botox killed her.

When the suit was filed, a spokeswoman characterized the drug's safety record as "remarkable." Serious side effects, she said, were rarely reported in more than 15 million treatments over two decades.

In a confidential 2008 report to federal regulators, Allergan said it found that the risk of death among children with cerebral palsy was low and that fatalities often resulted from underlying poor health.

Approved in the United States specifically to treat frown lines, crossed eyes and other conditions, Botox yields $1.3 billion in annual sales. But the drug can be legally prescribed at doctors' discretion for a variety of other purposes, including cerebral palsy. It is also specifically approved for cerebral palsy in many other countries. Its use for that condition alone contributed $47 million to Allergan's bottom line in 2007.

The drug uses botulinum toxin, a powerful poison, to block neural communications, allowing muscles that produce worry lines or gnarled limbs to relax. A few injections smooth wrinkles, while larger doses are required to relax arms and legs.

Kristen died in November 2007 of respiratory failure and pneumonia, according to her death certificate. Experts hired by Dee Spears say Botox weakened muscles that controlled her breathing and swallowing, leading to respiratory failure and pneumonia.

Kristen's death came more than a year before the U.S. Food and Drug Administration ordered the labels warning of the drug's potential to cause botulism symptoms, including "potentially life-threatening swallowing and breathing difficulties and even death."

At the same time, the agency required Allergan to notify physicians that the toxin could spread beyond the injection site and to prepare a patient guide saying that it was not known whether Botox was safe for children or for other patients whose conditions it had not been approved to treat.

Spears alleges that Allergan knew problems had been reported at least two years before Kristen died. What's more, she alleges, Allergan encouraged Kristen's pediatrician to treat cerebral palsy patients with Botox and helped with his training.

"I don't want this to happen to anyone else's child," she said in a statement.

In preparation for the trial, Allergan was required to produce safety assessments of Botox and other confidential internal reports. Portions of some documents were obtained by The Times after Orange County Superior Court Judge Ronald L. Bauer unsealed them.

The documents include a 2005 letter sent by a European health official that alerted Allergan of reports that botulinum toxin had spread beyond the injection site among patients who sought cosmetic treatment. There was at least one similar drug manufactured by another company in the European market, and the letter did not specify which products the reports related to.

Trouble with swallowing and "aspiration have been reported to occur secondary to muscle weakness in the muscle in the neck region," the letter says. "Fatal cases of aspiration have been reported."

In a confidential response dated Sept. 16, 2005, Allergan said its internal database contained 436 "serious adverse event" reports related to Botox.

Of those, 201 were "serious, healthcare professional-confirmed cases with events possibly due to remote spread of the toxin," including 42 after facial wrinkle treatments.

Also in 2005, documents show, Allergan sent a confidential report to the FDA, saying that an analysis identified 38 patients -- 20 children, most of them with cerebral palsy, and 18 adults -- who had suffered seizures after Botox injections.

In May 2007, European regulators asked Allergan and two competitors to add information to labels and warn doctors that the toxin could spread, causing botulism symptoms.

Two months later, on July 16, 2007, consulting firm BioSoteria Inc., in a confidential report to Allergan, identified 207 patients with medical problems, including several deaths, associated with the spread of toxin.

A third of the cases identified by BioSoteria occurred in people treated for wrinkles; the rest were treated for muscle spasms, muscle spasticity and eye problems. Proportionally more problems were reported among children.

Kristen's care proceeded as such reports flowed into Allergan, according to depositions and documents filed in court.

The Amarillo, Texas, pediatrician who treated Kristen said in a deposition that he learned to use Botox on children with cerebral palsy at Allergan-sponsored seminars in 2000 and 2001.

Dr. Rolf Habersang, who is a critical care pediatrician and medical professor at Texas Tech University, and his nurse practitioner wife, Pia, both testified that they believed that Allergan arranged and paid for them to fly to an Irving, Texas, seminar.

Allergan also sent Habersang to Little Rock, Ark., to train with a pediatric neurologist, the Habersangs said.

The doctor testified that he learned to dose children with 15 units of Botox per kilogram of body weight.

That is nearly twice the maximum dosage that Allergan considers safe for children, according to the deposition testimony of Allergan executive and neurologist Mitchell Brin.

But, Brin testified, the company never shared its maximum dosage information with physicians because of a federal ban on marketing for non-approved uses that it believed prohibited such communications.

Still, Allergan's sales agents discussed the use of Botox for juvenile cerebral palsy patients with the Habersangs repeatedly, visiting the practice about 50 times over several years, according to motions and depositions.

One sales agent told the Habersangs that other physicians were using Botox "in the range of 10 to 15" units per kilogram, Pia Habersang said in her deposition.

Allergan said in a court motion that Rolf Habersang was aware of the risks of Botox when he treated Kristen, although Habersang testified that he was unaware of the reports of seizures and breathing, swallowing and other difficulties among pediatric cerebral palsy patients. He said he would have shared such information with parents.

In June 2006, the suit alleges, Kristen's health was stable. Over the next 15 months, the 33-pound girl got seven Botox treatments in her legs, groin and chest.

Kristen's health deteriorated dramatically, the suit alleges.

Already subject to seizures, Kristen got them more frequently, and they got worse, according to one motion.

She was hospitalized 10 times for repeated bouts of breathing and swallowing difficulties and pneumonia, it says.

About six weeks after her last treatment, Kristen stopped breathing.

She died on Nov. 24, 2007, at the age of 7.

UC-Irvine researchers investigate if stem cells can reverse MS

The University of California at Irvine press release:

Biologist Tom Lane (pictured) and a team of UCI researchers are leading an effort to determine whether a stem-cell-based treatment can repair neurological damage caused by multiple sclerosis.

More than eight years ago, Tom Lane helped discover a potential way to prevent multiple sclerosis from affecting the central nervous system. Now he’s leading an effort at UC Irvine to determine whether a stem-cell-based treatment can repair neurological damage caused by the chronic disease.

Lane, a molecular biology & biochemistry professor, is among 15 U.S. researchers who recently received five-year Collaborative MS Research Center Awards from the National Multiple Sclerosis Society. With the $742,500 in funding, he has assembled a team to investigate the use of cell-replacement therapy to regenerate MS-ravaged nerve tissue.

In people with MS, immune-system T cells attack myelin, the protective coating of nerves, and eventually the nerve fibers themselves. Symptoms may be mild, such as intermittent numbness in the limbs, or severe, such as paralysis or loss of vision. There is no cure for MS, and current treatments mainly try to limit immune-system response.

“The promise of cell-replacement strategies to treat MS is significant,” Lane says. “Imagine being able to infuse people with cells that could make new myelin or transform into healthy nerve cells. That’s the focus of our effort.”

Spinal cord injury research at UCI has already shown the potential of cell-replacement therapy to repair myelin. Neurobiologist Hans Keirstead pioneered a technique to turn human embryonic stem cells into myelin-making oligodendrocyte precursor cells (OPCs) that, he demonstrated, can restore impaired nerve function. These findings form the basis of an upcoming clinical trial involving people with acute spinal cord injury.

With Keirstead providing the cell lines, the UCI team will explore OPCs’ ability to repair MS-related myelin damage and how the cells could be safely introduced into the body. Researchers and their topics include:

• Lane studying immune-system messenger cells called chemokines that permit the migration of OPCs to their targeted nerve sites.
• Dr. George Chandy, physiology & biophysics professor, investigating methods of muting T cell response while OPCs reconstruct myelin.
• Michael Cahalan, physiology & biophysics professor and chair, developing ways to track and visualize the migration of stem cells and immune cells within the living central nervous system.
• Dr. Michael Demetriou, associate professor of neurology and director of the comprehensive MS program at UC Irvine Medical Center, examining how enzymes direct T cells and, possibly, OPCs.
• Dr. Steven Schreiber, neurology professor and interim chair, determining whether niacin can increase the repair capacity of OPCs.

“With the knowledge acquired from these studies, we believe we’ll lay the foundation for the creation of safe and effective treatments to improve quality of life for people with MS,” Lane says. “UCI has long been a leader in MS research and patient care, and it’s exciting to be part of the significant impact our researchers and clinicians make in this field.”

TheraSuit may aid kids with CP in walking

From The Denver Channel:

Cerebral palsy is a disorder that makes walking, speaking and learning difficult for many kids. There is no cure, but now a special suit that was first used in Russia for their astronauts is helping kids do what they once couldn't.

Nicole Miller can't do everything other kids her age can, but don't tell her that.

Nicole was born weighing just 1 pound, 14 ounces. Doctors diagnosed her with cerebral palsy.

"She's realizing that she's different, and she wants to be able to do what the other kids do," said Joy Miller, Nicole's mom.

Thanks to a special suit and intensive therapy, Nicole really can.

"It helps me stand strong better and do all kinds of stuff," said Nicole, 11.

With the suit on, Nicole stands for 300 seconds.

And she uses her walker to scoot across the room by herself. It's a "first" that she's proud of. The TheraSuit retrains the nervous system. Bungees keep the body aligned properly and apply pressure to weak muscles.

"It's applying compression, anywhere from 30 to 55 pounds of pressure throughout the body," said Ariana Watson, an occupational therapist at Innovative Children's Therapy, Inc. in Winter Park, Fla.

But it's not just the suit. It's the length of the therapy. Instead of 30 to 60 minutes, one to three times a week, this intense program includes four hours of therapy, five days a week for three weeks at a time.

"In that time, they make exceptional progress," Watson said.

Five-year-old Andres was also born with cerebral palsy. After just three weeks, Andres said goodbye to his walker and only needed crutches.

"The doctor told us he would not be able to walk, would only be able to crawl, but look at him now," said Jose Toro, Andres' dad.

In a pilot study, 92 percent of kids who used the suit in an intensive program saw improvement. Twenty-one percent were able to walk on their own, and 39 percent learned to stand by themselves. The therapy sessions are expensive, costing parents about $100 an hour. For a three-week session, that's $6,600.

BACKGROUND: According to the National Institute of Neurological Disorders and Stroke, cerebral palsy refers to a neurological disorder that appears in infancy or early childhood and permanently affects body movement and muscle coordination. It is caused by abnormalities in parts of the brain that control muscle movements. Most children with cerebral palsy are born with it, although it may not be detected until years later. Some signs of the condition include a lack of muscle coordination, stiff or tight muscles, walking with one foot or leg dragging, walking on the toes, a crouched gait and muscle tone that is too stiff or too "floppy."

STANDARD TREATMENTS: There is no cure for cerebral palsy, but treatment will often help a child function better. Standard treatments for cerebral palsy may include physical therapy, occupational therapy, speech therapy, drugs (to control seizures, muscle spasms and pain), surgery (to correct abnormalities), and braces.

THERASUIT: The TheraSuit is a special device that is worn to help kids with cerebral palsy and other disorders. It consists of bungees that keep the body aligned properly and apply pressure. The pressure helps patients feel their body better. The suit retrains the central nervous system, improves balance and coordination, provides stabilization, supports weak muscles, and normalizes gait. It originated in Russia and was brought to the United States by Izabela and Richard Koscielny. The Koscielnys have a child with cerebral palsy and are also physical therapists. They created the TheraSuit Method, which is based on an intensive and specific exercise program. Typically, kids with cerebral palsy only partake in therapy sessions for an hour or less, one to three times a week. In the intense program, kids typically undergo therapy with the suit and other equipment for up to four hours a day, five times a week. The sessions usually last for three weeks at a time.

RESULTS: In a pilot study conducted at the Pediatric Fitness Center in Keego Harbor, MI, researchers studied 20 children with cerebral palsy who used the TheraSuit Method. The study found 92 percent of participants experienced functional improvements. Other improvements were also made in coordination, strength, range of motion, balance and movement control. Ninety percent of the participants learned to roll independently, and 75 percent learned to sit without assistance. More than 30 percent learned to walk with assistive devices, and 21 percent gained the ability to walk independently.

SUIT HELPS OTHER DISORDERS: The TheraSuit can help kids with disorders other than cerebral palsy. It can be used for those who suffer from developmental delays, traumatic brain injuries, stroke, spasticity, low muscle tone and ataxia.