Still no answers from years of research about Alzheimer's

From The NY Times. In the picture, Elise Schoux has been more careful to exercise regularly and eat right as preventive measures since her husband, Bill, learned last year that he has Alzheimer’s.

BETHESDA, Md. — The scene was a kind of science court. On trial was the question “Can anything — running on a treadmill, eating more spinach, learning Arabic — prevent Alzheimer’s disease or delay its progression?”

To try to answer that question, the National Institutes of Health sponsored the court, appointing a jury of 15 medical scientists with no vested interests in Alzheimer’s research. They would hear the evidence and reach a judgment on what the data showed.

For a day and a half last spring, researchers presented their cases, describing studies and explaining what they had hoped to show. The jury also heard from scientists from Duke University who had been commissioned to look at the body of evidence — hundreds of research papers — and weigh it. And the jury members had read the papers themselves, preparing for this day.

The studies included research on nearly everything proposed to prevent the disease: exercise, mental stimulation, healthy diet, social engagement, nutritional supplements, anti-inflammatory drugs or those that lower cholesterol or blood pressure, even the idea that people who marry or stay trim might be saved from dementia. And they included research on traits that might hasten Alzheimer’s onset, like not having much of an education or being a loner.

It is an issue that has taken on intense importance because scientists recently reported compelling evidence that two types of tests, PET scans of Alzheimer’s plaque in the brain and tests of spinal fluid, can find signs of the disease years before people have symptoms. That gives rise to the question: What, if anything, can people do to prevent it?

But the jury’s verdict was depressing and distressing. So far, nothing has been found to prevent or delay this devastating disease, which ceaselessly kills brain cells, eventually leaving people mute, incontinent, unable to feed themselves, unaware of who they are or who their family and friends are.

“Currently,” the panel wrote, “no evidence of even moderate scientific quality exists to support the association of any modifiable factor (such as nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical conditions, toxins or environmental exposures) with reduced risk of Alzheimer’s disease.”

“I was surprised and, at the same time, very sad” about the lack of evidence, said Dr. Martha L. Daviglus, the panel chairwoman and a professor of preventive medicine and medicine at the Feinberg School of Medicine at Northwestern University. “This is something that could happen to any of us, and yet we are at such a primitive state of research.”

She said, “In the end, we concluded that the evidence is the evidence and we have to say what it is.”

The state of the evidence reflects in part the long time it took before researchers even realized that Alzheimer’s was a disease, said Dr. Richard J. Hodes, director of the National Institute on Aging. Until the mid-1980s, many thought dementia was a normal part of aging, and so serious studies of its causes and prevention did not really begin until then. Scientists have spent the years since searching for factors that might affect risk, checking data from other studies to see if, for example, diet or blood pressure or years of education might be associated with the disease.

In the meantime, doctors are in a bind. Should they tell people to do things like walk briskly or eat vegetables — activities that might someday be shown to protect against Alzheimer’s and that certainly cannot hurt? Or should they wait for absolute proof, confirmation that a diet or a drug or an exercise regimen prevents Alzheimer’s?

The Alzheimer’s Association tells people to exercise, challenge themselves mentally, remain socially engaged and keep their hearts healthy. Such measures can only help, says Dr. Maria C. Carrillo, a senior director of the organization.

But, she said, “The Alzheimer’s Association certainly agrees that there is not enough evidence to say anything definitive about the prevention of Alzheimer’s disease and any kind of intervention.”

Of course, Dr. Hodes said, there are many reasons to follow practices to improve general health. But, he said, researchers have to be careful about implying that any measures will protect against this degenerative brain disease.

“We don’t know that yet,” Dr. Hodes said.

Dr. John W. Williams Jr., head of the Duke group that evaluated the studies, thought the task would not be too arduous. He expected relatively few studies and clear results.

To its great surprise, the Duke group discovered a vast amount of literature on Alzheimer’s prevention. Instead of coming up empty on many topics, Dr. Williams said, “We came up empty on very few.”

The problem, the group wrote, was that “the quality of the evidence was typically low.”

Most studies observed people who happened to use or not use a possible preventive measure and then determined whether they got Alzheimer’s or not.

Such studies, known as observational ones, are not the gold standard, like those in which people are randomly assigned to take a pill or do something like exercise, or not. Observational studies are useful in generating hypotheses but are not proof. Still, if several well-done studies of this type come to the same conclusion, they can be valuable evidence.

In the case of Alzheimer’s prevention, though, the studies tended to have problems, Dr. Williams said.

Often it was not clear precisely what subjects were doing. They might have been using a drug or a supplement at the start of the study but the dose was not specified, nor was it clear whether subjects were taking the same doses, or for how long.

Some studies of drugs to lower blood pressure used self-reports as opposed to, for example, pharmacy data. A 12-year study asked participants about their use of cholesterol-lowering statins at the start of the study but never did again. A nine-year statin study used pharmacy records but included as users those who took the drugs at any time during the study period.

Definitions of conditions, like high blood pressure, tended to vary from study to study.

Descriptions of factors like “strong social support” were vague or idiosyncratic. For example, some studies classified married people as having strong social support for that reason alone, with no evaluation of whether the marriage was good or bad.

Often, there were vague assessments of Alzheimer’s disease. And often studies did not take into account other differences among subjects, like age or family history of Alzheimer’s, that might have independently led some to get the disease and others not.

Looking over the piles of studies, the group rated evidence as high, moderate or low, depending on how confident they were in the findings.

Low confidence did not necessarily mean the measures did not work — it meant the evidence was so faulty that there was no way of deciding.

In the end, it said it was highly confident in the findings for just one thing, the herb ginkgo biloba. But in that case the evidence pointed in only one direction: it did not prevent Alzheimer’s.

Moderate evidence, not totally convincing but not worthless, applied to only four factors studied.

Two were factors that increased risk. They were a particular gene, ApoE4, which, moderate evidence showed, increased risk about threefold, and menopause therapy with a combination of estrogens and progestins, which doubled risk.

The other moderate evidence indicated that certain things that had been hoped to be protective were not. For instance, there was moderate evidence that vitamin E, found in nuts, vegetable oils, green leafy vegetables and fortified cereals, had no effect on risk. There was also moderate evidence that cholinesterase inhibitors, drugs often used to treat Alzheimer’s symptoms, had no effect.

Other than that, evidence was poor.

There is only poor evidence, for example, that keeping your brain active, having a high level of education or exercising has a protective effect. There is also only poor evidence that eating a Mediterranean diet — high in fruits and vegetables, fish and olive oil — will help stave off Alzheimer’s.

There is only poor evidence that having poor social support or smoking increases risk.

In a way, it is not surprising that many thought the evidence was stronger than it was, says Dr. James R. Burke, a member of the Duke group and director of the Memory Disorders Clinic at Duke.

“You remember the positive studies,” Dr. Burke said. “The ones that are more marginal, you tend to put them out of your mind.”

And many things thought to protect against Alzheimer’s — a healthy diet, vigorous exercise and an active brain — just seem to be common sense. The science jury said it was still possible that those measures might be found to help and urged that better quality studies be done.

But that may not be so easy if studies have to follow people until they get the disease. Alzheimer’s seems to progress silently in the brain for a decade before the earliest symptoms of memory problems surface. It can take another decade until the distinctive signs of Alzheimer’s appear: profound memory loss and an inability to handle the normal activities of daily life like bathing and dressing.

“Once there is even minimal cognitive impairment, the brain is damaged, inflamed, burning like a bonfire,” said Dr. Caleb Finch, director of the Gerontology Research Institute at the University of Southern California.

As a result, high-quality studies of possible factors like diet and exercise or mental stimulation before the disease’s onset might have to last for decades.

In the meantime, patients, like those at Dr. Burke’s Memory Disorders Clinic, and their frightened family members want advice about things they can do now.

He tells them to do all they can to stay healthy: keep their heart disease risk factors under control, eat a good diet, exercise. He tells them that even if good health cannot prevent Alzheimer’s, it might delay its onset.

“We don’t have compelling evidence or proof that this will prevent Alzheimer’s disease,” he says. But those measures, he adds, “would improve quality of life.”

But Dr. Williams, head of the Duke group, said it was also important to keep an open mind; the measures may or may not affect a person’s chances of getting Alzheimer’s.

“Unfortunately, in medicine,” he said, “things that are logical and make good sense don’t necessarily work out.”

The Problem, Personified

Elise Schoux of Washington is facing the prevention problem. She is 53, an age when prevention might make sense — when Alzheimer’s strikes, people usually are in their 70s and 80s — and she is watching her 70-year-old husband’s slow decline into the dread disease.

Bill Schoux’s memory had been deteriorating for years, but in July 2009, when he got the diagnosis, Mrs. Schoux was devastated.

“For two weeks, we were at a loss, we would burst into tears,” she said. “How could this be?”

Mr. Schoux had been an athlete all his life, he ate a healthy diet, he was friendly and outgoing. He had been an expert on foreign aid, traveling around the world, and had certainly had a mentally stimulating career. Mrs. Schoux is not sure how much more her husband could have done to ward off Alzheimer’s. But she wants to do everything she can to protect herself from getting it and to slow the disease in him.

So Mrs. Schoux now unfailingly goes to the gym with her husband several days a week, lifting weights and spending 30 minutes on a treadmill or an elliptical cross trainer.

Her husband always worked crossword puzzles. Now she does them, too. She and her husband have a subscription to a local theater. And they read the newspaper every day.

“It can’t hurt to keep the brain cells moving,” Mrs. Schoux said.

Mrs. Schoux also tries to eat blueberries, salmon, intensely colored fruits and dark leafy vegetables, in case that helps.

She knows that much of what she is trying is unproved but feels that it can, at worst, be harmless.

“I don’t know what the answers are,” Mrs. Schoux said. “I hope they find something. It is a seriously debilitating disease.”

London celebrates 2-year countdown to Paralympics

From The AP:

LONDON — London will mark the two-year countdown to the homecoming of the Paralympics on August 29, celebrating the growing prominence of the event and its start in England in 1948.

More than 500,000 people have already registered interest in buying tickets on the London 2012 website for the 12-day event, and organizers hope to attract a global TV audience of 4 billion.

The official mascot Mandeville is a nod to the location of the first games, which coincided with the 1948 London Olympics. That event featured only 16 patients British soldiers paralyzed in World War II who were recovering at Stoke Mandeville hospital near London and advised to engage in sport as part of treatment.

London 2012 organizers are hoping the Aug. 29-Sept. 9 Paralympics will bring in the most lucrative TV deals yet for the event, having already secured unprecedented coverage on Britain's Channel 4.

"We're breaking new ground with the revenue that we're bringing in," said London 2012 director of Paralympic integration Chris Holmes a former Paralympic swimming champion. "And Mandeville will be an incredibly important piece of how we connect and engage with the public. It's really fantastic that we've got that history in Stoke Mandeville and it's coming home in 2012 with a modern international festival of Paralympic sport."

The 1948 games were not just the starting gun for a sporting revolution, but to technological improvements that changed the lives of disabled people and led to their growing acceptance in society.

"If you look back to the early years, the view of disability was inherently negative," 11-time British Paralympic champion Tanni Grey-Thompson said. "Now the Paralympics have been raised to a whole new level in terms of sponsors and highlighting what the disabled can achieve."

Grey-Thompson, Britain's most successful disabled athlete, highlights the rapid advances in treatment since 1948.

"Until that point, if you had a spinal cord injury you were left in hospital to die and life expectancy was seven years," she said. "Now if you have a spinal cord injury you are likely to live as long as anyone else.

"Sport has helped drive medical changes and that medical technology has helped change sport."

Medical technology such as the carbon-fiber prosthetic limbs are used by South African sprinter Oscar Pistorius. The "Blade Runner" is hoping to be the first track and field athlete to compete in both the Paralympic and Olympic Games.

Natalie du Toit of South Africa achieved that in the pool at Beijing 2008.

Britain was second only to China in the Paralympic medal table in Beijing, winning 42 gold and 102 medals.

British hopes in London will be led by 15-year-old swimmer Eleanor Simmonds, who this month won four world championship gold medals.

Pennsylvania Supreme Court rules legal guardians can't end life-preserving treatment for disabled people

From The Bulletin in Philadelphia:

In a ruling involving a mentally disabled man whose legal guardians sought the power to end his medical care, the Pennsylvania Supreme Court has determined that state law requires life-preserving treatment for people who are not near death and have not refused treatment.

The Alliance Defense Fund and allied attorneys filed a friend-of-the-court brief on behalf of 53-year-old David Hockenberry of Ebensburg, Pennsylvania, who has had acute mental disabilities since birth, arguing that his legal guardians should not be allowed to deny him life-preserving treatment while he is not terminal or unconscious. Hockenberry’s guardians unsuccessfully attempted to deny him temporary life-preserving medical treatment for pneumonia.

“Having a disability shouldn’t be a death sentence when treatable medical complications arise,” said Independence Law Center Chief Counsel Randall L. Wenger. “The court made the right decision to protect Mr. Hockenberry’s right to live. He is not dying or unconscious, and his life isn’t worthless just because he has a disability that may lead others to view his life as less worthy to live.”

“A person’s value isn’t based on his or her physical or mental abilities,” said ADF Legal Counsel Matt Bowman. “No one should be allowed to decide that a person’s life is not worth saving just because he or she has a disability or medical condition.”

In December 2007, Mr. Hockenberry developed aspiration pneumonia. Hockenberry’s guardians–appointed as his legal guardians in 2002 by a trial court–tried to decline his required ventilator treatment to assist his breathing, but the hospital proceeded despite their objection. After three weeks on the mechanical ventilator, he recovered from pneumonia and no longer required the treatment.

Mr. Hockenberry’s guardians filed a petition with a trial court in January 2008 that would allow them to end his care if a similar situation were to arise in the future. The Department of Public Welfare objected, stating that Mr. Hockenberry was neither terminally ill nor permanently unconscious and never appointed a third party with the power to refuse healthcare necessary to the preservation of his life. Mr. Hockenberry’s guardians filed a series of appeals until their case reached the Pennsylvania Supreme Court, which agreed to hear the case. In March, ADF and allied attorneys argued in a friend-of-the-court brief that people should not be considered better off dead just because of a disability. The high court concurred that the Health Care Agents and Representatives Act requires life-preserving care for such persons.

“We hold that where, as here, life-preserving treatment is at issue for an incompetent person who is not suffering from an end-stage condition or permanent unconsciousness, and that person has no health-care agent, the Act mandates that the care must be provided,” the opinion states. “The enactment...regulates the situation in which the incompetent person suffers from a life-threatening but treatable condition, obviously reflecting the Legislature’s assertion of a policy position of greater state involvement to preserve life in such circumstances.”

Illinois Appeals Court upholds decision to allow autistic boy to take his service dog to school

From The AP:

SPRINGFIELD, Ill. — An Illinois appeals court has agreed to allow a central Illinois student to keep his autism helper dog in school.

The Fourth District Appellate Court sided with the family of Kaleb Drew (pictured). They had argued that the boy's yellow Labrador retriever is a service animal allowed in schools under state law.

The boy's mother had testified that the dog prevents the boy from running away, helps him focus on his homework and calms him when he has a tantrum.

The appeals court upheld the November decision of a Douglas County judge. The court issued its opinion August 24.

The Villa Grove school district had opposed the dog's presence and argued that it isn't a true service animal. A telephone message for the school district's attorney was not immediately returned.

Medical marijuana use could cost some their jobs

From The NY Times:

Residents in 14 states and Washington can now appeal to their doctors for prescriptions for medical marijuana to help them with their pain.

Their employers, however, may not be so understanding.

In some cases, workers have been fired for failing drug tests despite having prescriptions saying, in effect, that what they are doing is legal according to the laws of their states.

Though the number of such cases appears to be small, they are exposing a new legal gray area, with workers complaining of rights violations and company officials scratching their heads over how to enforce a uniform policy for a drug that the federal government has not recognized as having a legitimate medical purpose.

“The current state of affairs puts employers in a very difficult situation,” said Barbara L. Johnson, an employment lawyer in Washington. “But the reality is that there are no federal guidelines like there are when dealing with other types of prescription medications.”

Some workers have learned about this legal quandary first-hand, at the cost of their jobs.

Nick Stennet (pictured), 20, has a congenital disorder called Poland’s syndrome, which left him without a chest muscle on the right side of his body and with a right hand with fingers substantially shorter than those on his left.

Doctors prescribed one or two inhalations of marijuana each night before bed to relieve severe muscle stiffness and shooting pains in his arms.

Mr. Stennet said he told the human resources manager at the Home Depot in Hilo, Hawaii, about his prescription when he was being hired. But after his drug test came back positive for tetrahydrocannabinol, or THC, the active chemical in marijuana, he was out a job.

“Why would they send me down there when they know I am going to test positive?” he said. “I feel like they put me through ridicule when it was so avoidable.”

Steve Holmes, a Home Depot spokesman, said the company followed federal guidelines for its drug policy. Employees are allowed to take a leave if they choose to use marijuana to combat the side effects of treatment for a serious ailment. When they return, however, the THC must be out of their systems.

“It’s a safety issue for us,” Mr. Holmes said.

Cynthia Estlund, a professor of labor and employment law at New York University, said that only one state that had legalized medical marijuana had taken the additional step of saying explicitly that it was unlawful to fire someone for using a lawful substance.

At the same time, Ms. Estlund said, “Nothing in the law tells employers what to do, so they don’t have to fire them under federal law.”

That is the objection raised by Scott Michelman, a lawyer for the American Civil Liberties Union, on behalf of his client, Joseph Casias.

In 2008, Mr. Casias, a father of two who medicates with marijuana to relieve the pain of inoperable brain and sinus cancer, was named associate of the year at the Wal-Mart in Battle Creek, Mich. But when he injured his knee last year, company policy required a drug test. The positive result cost him his job.

In June, the A.C.L.U. filed a complaint in state court on his behalf, citing wrongful termination. He is seeking reinstatement and damages.

“The cancer is not what’s keeping him from earning a living — Wal-Mart is,” Mr. Michelman said. “There’s actually no law to require Wal-Mart to do what they did.”

Greg Rossiter, a spokesman for Wal-Mart, said: “This is obviously an unfortunate situation all around. But we have to consider the overall safety of our customers and our associates.”

On the broader legal question, Mr. Rossiter added: “As more states allow this treatment, employers are left without guidelines.”

Only the Rhode Island Medical Marijuana Act offers protection to medical marijuana cardholders for students, employees and tenants. Michigan’s law does not compel an employer to make accommodations for marijuana consumption “in any workplace” or for “any employee working while under the influence of marijuana,” according to the legislation.

While that addresses marijuana smoking at work or just before work, the Michigan law does not speak to what employees can do away from work. Mr. Michelman of the A.C.L.U. said he believed that there was no gray area and that federal law does not govern the relationship between a private employer and an employee.

“There is only one law governing this situation, and that’s Michigan law,” he said.

John Vasconcellos, a California state senator who was a leading advocate for medical marijuana legislation there, said lawmakers had not anticipated such a collision of state and federal law in employment practices.

“I think they’re hiding from common sense, and they’re hiding from the science that shows it might help their employee be more healthy and feel less pain,” Mr. Vasconcellos said of companies that fired employees with medical marijuana registry cards, prescriptions or endorsements from doctors.

In Colorado, the right to use medical marijuana for a debilitating medical condition is protected by the State Constitution — though with limitations — making it unique among states where it is legal. But Brandon Coats, 30, a phone operator at Dish Network who has used a wheelchair since he was paralyzed in a car accident 14 years go, was fired after a random drug test came back positive.

Mr. Coats’s doctors had recommended medical marijuana to control his involuntary muscle spasms and seizures after prescription drugs were no longer effective for him. A few puffs before bed allows him to work comfortably the next day, said his lawyer, Michael Evans.

Mr. Evans said that Mr. Coats — who, he said, had consistently received good performance reviews — was terminated for conduct that was legal and outside of work.

In an e-mail, Francie Bauer, the company’s corporate communications manager, said: “Dish Network does not comment on the specifics of employee matters. As a national company with more than 21,000 employees, Dish Network is committed to its drug-free workplace policy and compliance with federal law, which does not permit the use of marijuana, even for medicinal purposes.”

The issue has not worked its way through the Colorado courts.

Some companies have begun to recognize marijuana as a legitimate therapy. Jian Software, based in Chico, Calif., recently consulted with the National Organization of Marijuana Reform Laws, or Norml, in an effort to institute a drug policy that accounts for the medicinal use of marijuana.

This is necessary, said R. Keith Stroup, legal counsel for Norml, because the courts have not yet held that medical marijuana users enjoy “a legally enforceable, fundamental right” to smoke.

“Employers in states that have legalized the medical use of marijuana under state law unfortunately remain free to fire employees who test positive for THC,” Mr. Stroup said in an e-mail. “It is terribly unfair to these patients, but at this time it is not illegal.”

Federal Appeals Court confirms no link between autism, vaccines

From The AP:

WASHINGTON — A federal appeals court on August 27 upheld a ruling that vaccines are not to blame for autism.

The U.S. Court of Appeals for the Federal Circuit upheld a decision last year by a special vaccine court, which concluded there's little if any evidence to support claims of a vaccine-autism link.

Scientist years ago reached that conclusion, but more than 5,500 families sought compensation through the government's Vaccine Injury Compensation Program.

The August 27 ruling came in the case of Michelle Cedillo of Yuma, Ariz., who is disabled with autism, inflammatory bowel disease and other disorders that her parents blame on a measles vaccine given at 15 months.

In the 2009 ruling Special Master Denise Vowell wrote that the evidence "is weak, contradictory and unpersuasive. Sadly, the petitioners in this litigation have been the victims of bad science conducted to support litigation rather than to advance medical and scientific understanding" of autism.

In its ruling Friday the appeals panel said "we have carefully reviewed the decision of the special master and we find that it is rationally supported by the evidence, well-articulated, and reasonable. We, therefore, affirm the denial of the Cedillos' petition for compensation."

Earlier this year the so-called vaccine court also concluded that the additive thimerosal is not to blame for autism, an added setback in a long-running battle by parents convinced there is a connection.

The decisions help to offer reassurance to parents scared about vaccinating their babies because of a small but vocal anti-vaccine movement. Some vaccine-preventable diseases, including measles, are on the rise.

California lawyer, wife arrested on charges of bilking San Francisco school district through fraudulent bills for treatment of autistic son

From the San Francisco Chronicle:

A former partner at a well-known law firm and his marketing consultant wife were arrested August 25 on felony charges of bilking the San Francisco school district and private insurers out of about $400,000 via fraudulent bills for treatment of their autistic son, officials say.

The San Francisco couple, Jonathan S. Dickstein and Barclay J. Lynn, both 43, surrendered Wednesday and are expected to appear in court this morning for arraignment on 30 counts of fraud, theft and conspiracy, authorities say.

They were briefly jailed Wednesday on $100,000 bail each but were released on bond.

"This was an elaborate scheme to defraud the school district and insurance companies out of a lot of money," said Chief Assistant District Attorney David Pfeifer. "They used this scheme to make money off their child's special needs - that's terrible."

Until this year, Dickstein, who graduated from Stanford and then Harvard Law School, was a partner at the internationally recognized San Francisco firm of Morrison & Foerster, specializing in intellectual property issues and the law surrounding life sciences. He has since started his own practice, according to his Facebook page.

He and his wife had arranged for the home care of their young son through another school district before transferring to the San Francisco school district. Under state guidelines, school districts are obligated to provide or compensate parents for home education of autistic or other severely disabled children.

By law, parents are required to use licensed private educational providers to develop individual treatment plans that meet state guidelines for their disabled children.

Dickstein and Lynn had employed such a private provider, but in 2006, they created their own: Puzzle Pieces. Prosecutors said it was actually a dummy company that was not licensed to develop autism education.

Double dipping
In fact, they say, the couple used Puzzle Pieces to overbill and "double dip" - charging both the school district and insurers for the exact same services - from 2006 to 2008. They billed for counselors and doctors at allegedly inflated rates and charged both the district and insurers for the same hours of treatment. They allegedly told insurers the district would not pay.

Gentle Blythe, spokeswoman for the district, said it was school officials who raised red flags to prosecutors last year.

"The parents weren't allowing the district personnel to talk to the service providers," Blythe said. She said it was then that the district uncovered the fact that Puzzle Pieces was not a licensed provider and in fact had been started by Lynn in 2006.

Dickstein's attorney, Garrick Lew, said the couple were devoted to their severely challenged son, but admittedly took efforts too far.

"They put a lot of work into getting whatever the child needed," he said. "In the process of getting all those needs met, there were problems."

He said he hopes to "try to work something out" with prosecutors.

Douglas Rappaport, Lynn's attorney, said that it was too soon to comment in detail but that there was "some indication that their conduct could be construed as lawful."

He said the couple volunteered many hours of their time to causes associated with autism.

The alleged fraud went undetected for about three years, until the school district assigned a new case supervisor over the education and treatment of the child last year.

Blythe said the district's earlier efforts to supervise the child's care met with resistance from the couple, but officials acted quickly when the problem was uncovered by the new supervisor.

The new supervisor noticed that Puzzle Pieces was charging twice what would typically be paid for in-home autism care and counseling for autistic children, prosecutors say.

A doctor who supposedly provided help had no specialty in autism, prosecutors say. Dr. Robert Schenck describes himself on the Internet as a specialist in depression in adults. He declined to comment.

When confronted about the questionable billings, the couple told authorities at the district that they did not have copies of the checks used to pay Puzzle Pieces.

Prosecutors said the couple attempted to pass off Puzzle Pieces as a company that they were not directly involved in, saying they would have to talk to the company people and get back to the district. But, Pfeifer noted: "They are the company."

Thousands in losses
According to prosecutors, the district lost as much as $240,000 while Anthem Blue Cross lost an estimated $100,000 and CIGNA, which administered the law firm's health plan, lost about $40,000.

In an Internet profile, Lynn said that from March 2006 until June of this year, she was a "director" of "private autism services" and that she "designed and directed (an) individualized home education program for (a) child affected by Autism" that combined "best practices" in " therapies and techniques ..."

She said that the "10 year old child in question went from an 'untestable' IQ in 2004 to being able to reach (sic) at a 2nd grade level, write several pages of text and is able to do 2nd grade math."

Lew, Dickstein's attorney, said the couple got overwhelmed as they worked with the many intricacies involved in securing care for their son.

"They were dealing with multiple agencies," he said. "Somehow things kind of went south. It's really unfortunate for them, as people, and also for their kid."

In Fresno, Calif., mental health court may fall victim to budget cuts

From The Fresno Bee:

A Fresno man was sentenced August 25 to seven years and eight months in prison for running over an undercover officer's foot during his escape from a north Fresno store parking lot in January 2008.

Gilbert Jimenez apologized in Fresno County Superior Court for his actions, but said he acted in self-defense.

Police said Jimenez, 37, is a Bulldog gang member who got into a fight with Corben Whitney of the California Highway Patrol and Chris Wagner of the Department of Motor Vehicles outside the Ross Dress for Less store at First Street and Shaw Avenue.

Training police to handle situations involving people with mental illness is much-needed as officers deal with an increasing number of such calls, Fresno Police Jerry Dyer said Tuesday.

At a news conference announcing a three-day crisis intervention program that's under way in east-central Fresno, Dyer said his department had 8,500 mental illness-related cases last year -- and that number is growing.

The goal of the training, which ended August 27, is to better prepare officers when they respond to mental-illness incidents, known as "5150" calls, Dyer said.

Richard A. Ciummo & Associates has thrived by offering governments cut-rate contracts to provide public defender services in Fresno, Madera and five other California counties.

The Madera-based law firm has been called the Walmart of legal defense for the poor -- and just like the mega-retailer, the firm has created a lot of controversy.

While Ciummo & Associates has strong support from government administrators, it's drawn criticism from law professors and legal-aid groups who fear the firm's flat-rate contracts cheat indigent defendants of adequate representation.

Relatives of a Fresno man who was stabbed to death inside his Tower District home a year ago tearfully told a judge August 26 that they have lost faith in the jury system.

They wanted Darshae Dews, 19, to get life in prison without parole for murdering 44-year-old Arthur Lopez, who was stabbed 20 times.

But Fresno County Superior Court Judge Hilary Chittick said the law doesn't give her the authority to sentence Dews to that punishment.

At least one in three inmates released early from Fresno County Jail since 2008 has landed back in jail for new crimes -- sometimes within hours, an analysis by The Fresno Bee has found.

Many inmates were arrested and released repeatedly -- up to five times -- over a 28-month period.

It's unclear how many of the crimes might have occurred without early release. But Fresno police say the jail's revolving door is contributing to a recent spike in burglaries and auto thefts -- in part because repeat offenders know they have a good chance of getting released early.

Only two years after it started, a Fresno County program for criminal defendants with mental illness may fall victim to budget cuts, ending a model that has reduced crime in other places.

Started by Superior Court Judge Hilary Chittick, Behavioral Health Court places participants in treatment for drug abuse and psychological problems and tries to steer them away from crime.

Studies have found that mental health courts can keep the mentally ill out of trouble. Although it's too early for a complete report on Fresno County's program, initial results have been promising, Chittick said.

But county budget cuts have put the future of the program in doubt. The county funds most of the court's personnel, and department heads say it's uncertain whether they can continue. The state budget -- when approved -- may determine the court's fate.

Chittick and others in Behavioral Health Court said they hope the program will survive.

"Mental illness leads to recidivism," Chittick said. "In the long run, it's better to keep these people out of trouble and prevent future victimization."

The Behavioral Health Court is something of a hybrid -- part probation office, part support group. Court officials use a combination of discipline and feel-good measures to try to keep participants on the right path.

State officials say more attention must be given to the mentally ill in California's courts. More than half of the people behind bars in the country have a mental illness, according to a task force convened by Ronald M. George, chief justice of the California Supreme Court. The task force recently recommended that trial courts adopt specialized approaches to the mentally ill, such as mental health courts.

Statewide, 41 of 58 counties have a mental health court, according to the state Administrative Office of the Courts.

Mental health courts reduce re-arrest rates by up to 45%, according to a report by the state task force.

Chittick and other Fresno County officials started the Behavioral Health Court in July 2008 after touring similar courts in other counties. Chittick said she has been concerned about the lack of assistance for mentally ill defendants since she worked in the Public Defender's Office about 20 years ago and represented a disturbed man who threatened a television personality.

In Fresno County, mental health court takes defendants after conviction in a traditional court, instead of determining their guilt, as some mental health courts do. Behavioral Health Court essentially serves as an expanded probation program. Individuals convicted of certain crimes -- including drug dealing, gang activity, and crimes causing serious injury -- are ineligible.

Participants also must be certified by a health professional as having a severe mental illness such as schizophrenia or bipolar disorder. Such illnesses make people lose touch with reality and more prone to commit crime, said Kristine Ruiz, a probation officer. The court's only full time employee, Ruiz meets with participants regularly to make sure they're meeting program requirements and otherwise find out what's happening in their lives.

Defendants in court recently showed how mental illness can create problems for themselves. The program's 15 participants must show up for court every other week and have Chittick review their cases.

In one recent session, Robert Posey, 48, tried to explain to Chittick how he was having problems with a woman who owed him money. Posey was previously convicted of assault.

Advocates fight Washington state school district's decision to raze alternative school

From the Seattle Times:

A group of parents, teachers and concerned citizens are fighting a decision in Renton to tear down an alternative high school and relocate the students, saying the school district has ignored its input and is violating a state policy that encourages community feedback.

Black River High School, a 150-student school for students who failed in regular comprehensive high schools and need special teacher attention, soon will be demolished. Students will be redistributed throughout other high schools when the school year begins, and by 2011 a bond-funded new school called the Secondary Learning Center will open its doors at the current Black River site.

Leaders with the community group say the Renton School District changed the allocation of bond money without voters' approval and did not consult the community before closing the school.

Michele Savelle, a member of the community group, is concerned about student and staff separation. Alternative schools, which are much smaller than regular high schools, are close-knit communities that, if ripped apart, destroy at-risk students' motivation to stay in school, said Savelle, who also is the founder of the community-revitalization organization Skyway Solutions.

Separating students is "essentially throwing away students who are already at risk and had just gotten their confidence back in school," Savelle said. The closure left students "really mad and they're really hurt. And when teenagers get mad and they don't have really good support at home, they get into trouble," she said.

The group has said the district is not following a state policy that requires 90 days of community feedback before a school is closed.

The district maintains that it followed the rules because the district isn't closing the school, just rebuilding it, said district spokesman Randy Matheson.

"They say you should run your district like a business, and that's what we do," Matheson said. "The curriculum we set up, it has parent input. We get student input. But we can't accommodate all that input."

Wendy Bluhm, whose son goes to Black River, said her ideas haven't been welcome at the district. She also was upset that along with the changes, the district decided to cut a popular horticulture program because it didn't meet state science requirements.

She said cutting horticulture will force the students, many of whom have ADHD (attention deficit/hyperactivity disorder) and other learning disabilities, to take more advanced classes such as biology and chemistry, whose textbooks are "too thick." Horticulture, she said, provided students with hands-on learning.

"That's how they learn, that's how they pass," Bluhm said.

The teacher of the class, Carol Grimes, said she could have "changed the class to fit requirements," but was given little notice of the change.

The Renton School District has rebuilt and reopened 13 schools with the bond money since voters approved a bond measure in May 2008, Matheson said — "and we're doing the same thing with Black River."

But unlike previous school reconstructions, where students and teachers traveled together to a temporary site, just over half of Black River students and teachers will be housed together at nearby Sartori High School, another alternative school. The rest will go to regular comprehensive schools in the district.

Then, after the school is demolished and reconstructed, the district expects to give the replacement school a new name, and its student population will be different.

The district's plan blurs the lines between closure and reconstruction, which aren't differentiated or defined in the state policy, said Dave Stolier, chief of the education division at the state Attorney General's Office. But a state document says the policy doesn't apply when schools are temporarily closed for renovation and students are relocated to another school in the meantime. Whether the exception still holds true when the "renovation" is a total tear-down and when students are relocated to multiple schools rather than just one is unknown, Stolier said.

"It sounds like it's a little bit of an eye-of-the-beholder question," he said.

It's also a question the state can't answer because the project isn't using state money, according to Scott Black at the state Office of the Superintendent of Public Instruction.

If the project were state-funded, "there would usually be a swing facility where the school would put all the kids in temporarily," Black said, but "the fact that the district didn't do that is a local decision that they have a right to make."

For now, this handful of concerned residents have tried to get the district's attention with letters and by trying to involve others in fighting the decision, but group members say they can't afford the roughly $3,500 needed to file for the injunction their lawyer suggested. They attempted to raise money with carwashes and community donations, but many of the school's families don't make much money and can't donate.

Instead of seeking an injunction, the group plans to use the money it raised to print informational fliers about their fight and distribute them in neighborhoods by the Black River campus.

Though the community group isn't taking legal action, it is fighting to keep the students from Black River together, something the district's current plan doesn't do.

At the new school, called the Secondary Learning Center and expected to be completed in 2011, the school's population will be a combination of students who now attend Sartori and students from Black River who this fall will be housed at Sartori. The students who will be redistributed to comprehensive schools this fall will not reunite with their fellow Black River students after the school's reconstruction.

Though Sartori, like Black River, is an alternative school, it's for people who dropped out of high school and have returned as adults to earn GEDs at their own pace. Black River is for teens who failed in their regular comprehensive high schools and require more teacher attention to succeed in school.

The district didn't solicit the entire Sartori community's input before deciding to move Black River students in with Sartori students, said Sartori math teacher Tim McIntosh.

But, he said, if the two schools are kept separate, they can coexist well in the same building — now and in the future.

"One answer for everybody won't work," McIntosh said. "That's why these students failed in their regular comprehensive high schools."

Teen wheelchair user in UK finally gets bank access

From BBC News:

A teenage wheelchair user from Sheffield has paid his first cheque into his local bank after a four year battle to get access.

David Allen (pictured), 19, took the Royal Bank of Scotland to court after it failed to provide disabled access at its Church Street branch.

In November 2009 judges dismissed the bank's appeal against a ruling ordering it to pay damages and install a lift.

The estimated cost for installing the platform lift was £200,000.

David's mother, Ceri, said: "We are absolutely thrilled about it."

She said the lift was very good and added: "David will be able to come and do his own banking. And a young man of 19 should be able to do their own banking business."

The Church Street branch is a 19th century listed building where access to all entrances was by flights of stone steps.

Scientists measure gene mutation rate for autism, schizophrenia

From Physorg.com:

An international study led by University of Montreal scientists suggests family history may not be a good predictor of the presence of mutations predisposing to autism or schizophrenia.

The findings show how new or de novo gene mutations - alterations of the cell's DNA - play a role in these devastating conditions. Published in the American Journal of Human Genetics, this study has implications for disease prevalence and severity.

"This study emphasizes the importance of de novo mutations as genetic factors predisposing to autism and schizophrenia. We found an increased frequency of severe de novo mutations in critical brain genes in both of these diseases," says senior author and University of Montreal professor, Guy Rouleau.

"Harmful de novo mutations, as observed in this study, may in part explain the high global incidences of autism and schizophrenia," adds Dr. Rouleau, who is also director of the Sainte-Justine University Hospital Research Center and a scientist at the University of Montreal Hospital Research Centre.

The team analyzed 400 genes that are turned on in nerve cells from patients with autism or schizophrenia spectrum disorders. Their results showed that there is an excess of de novo gene mutations associated with the two diseases.

Their study revealed that DNA taken directly from the patient's blood was superior to that taken from patient-derived cell lines. "The source of biological material is crucial for these types of experiments," says lead author Philip Awadalla, a University of Montreal pediatrics professor, scientist at the Sainte-Justine University Hospital Research Center and scientific director of the CARTaGENE project.

"In the process of confirming our findings, we were also able to provide one of the first direct estimates of the human mutation rate," continues Dr. Awadalla. "The number of mutations per generation is extremely small but on the order of what was previously indirectly inferred for human-chimpanzee comparisons. We also discovered that mutations can be introduced when cell lines are produced, which creates false-positive results. This artefact can significantly bias results and therefore great care needs to taken when analyzing these samples."

Mutations are alterations of the cell's DNA that can occur because of errors in the DNA replication, which happen prior to cell division. Once DNA is changed, this mutation is passed down to a next generation. A mutation that is newly formed and therefore not inherited from either parent is called a de novo mutation.

UK artisits honor Paralympics champion with exhibit

From UKPA:

A humbled Paralympic champion David Weir (pictured) said he was "truly honoured" at having an art exhibition in south London mark his success on the track.

Oil paintings, photos and sculptures from at least six different artists will be among the items paying homage to the wheelchair racer who aims to defend his 800m, 1500m titles plus win the 5,000m at London 2012.

The exhibition has been set up by Sutton Council where Weir, 31, was born and began training.

He said: "I am truly honoured that my borough has brought this event together and really looking forward to the exhibition.

"Sunday August 29 marks two years to the start of the Paralympics in London and I can't wait now; it's already two years since Beijing!"

The exhibition featuring work by artists including Jeremy Houghton, Richard Booth, Dominic Pearce, Sam Hunt and Teresa Witz will be held alongside an Olympic poster exhibition at Sutton Library from September 1 to October 31.

Weir was the only gold medal winner in Britain's athletics team at the Bird's Nest as he ended a 12-year wait for Paralympic glory.

Weir has continued to improve his times, although this summer he lost two world records to Marcel Hug of Switzerland.

Sutton Council's deputy leader Ruth Dombey said: "David is one of London's most successful athletes.

"This exhibition shows just how proud Sutton is of his achievements and will hopefully inspire more young people to follow his lead."

Georgia Tech, 8 other universities receive $10 million federal grant to develop computer system that can screen children for autism

From The AP:

ATLANTA -- Georgia Tech and other colleges have received a $10 million federal grant to develop a computer system that can screen young children for developmental disorders like autism.

The National Science Foundation award will go to researchers collecting behavioral data from children to help develop an automated system of analysis and identification. The computer-based system will help increase the number of children who can be screened and get them the critical treatments they need earlier in life.

Other colleges involved are: Boston University, Carnegie Mellon, Emory University, Massachusetts Institute of Technology, the University of Illinois at Urbana-Champaign, the University of Pittsburgh, the University of Southern California and the Marcus Institute autism research center in Atlanta.

New book seeks submissions from young people with disabilities

From H-Net:

Call for Proposals: Disability in America: Voices of a New Generation

Ari Ne’eman and Stacey Milbern, Co-Editors

Deadline: January 15, 2011

This year, the disability community is celebrating the 20th anniversary of the passage of the Americans with Disabilities Act (ADA), civil rights law that protects the rights of disabled people. Growing up in a post-ADA America has meant that many of us have had access to more opportunities than previous generations. We know if we had been born in 1967 instead of 1987 our lives would look completely different. We know the history of our people is tainted by eugenics, ableism, lack of access and the sting of low expectations. We recognize the work that has been done by disability movements over the last century to make the current lives we live possible. We are proud to be members of this vibrant, breathing, community.

Although the struggle continues, we recognize that the realities of disabled people look vastly different in many ways. With this in mind, we are requesting proposals for chapters in a book-length anthology to document this legacy and record the stories of disabled young people talking about what it is to grow up with a disability in this day and age.

Part One of our anthology will attempt to explore how a new generation experiences these age old challenges, affording a chance to assess how far we have really come. Part Two of our anthology asks disabled young people to identify what our struggle looks like now.

We’re seeking a diversity of perspectives and topics. A few questions we pose as food for thought:
-- What does it look like to navigate the medical system?
-- What is it like trying to find and keep a job as a young person with a disability today?
-- How are mental health challenges and psychiatric impairments approached by family members?
-- Do students still have to choose between support and inclusion?
-- What is the impact of pity and charity?
-- How do we survive the traumas we experience by people who say they are helping us, whether this is in schools, in doctor’s offices, our places of worship, or within our support systems?
-- How do people with less visible disabilities choose whether or not to disclose?
-- How has the nature of “passing” changed or not changed?
-- How do we fight eugenics, with its many faces?
-- How do we work with personal assistant services and our support systems?
-- How is disability portrayed differently in American society?
-- How are media, and pop culture representations of disability viewed by the new generation of young people with disabilities?
-- What do our relationships and sex lives look like?
-- How do we find community?

We are seeking creative non-fiction essays from young people with disabilities ages 13-30 (some flexibility will be available for compelling submissions from individuals slightly outside our preferred age range). People with all types of disabilities are welcome to submit. Speaking from personal experience is strongly encouraged. The intent of this project is to use personal voices to capture the experience of the new generation of young people with disabilities.

Submissions should range from 2,000 to 5,000 words. Please include your address, phone number, e-mail address and a short bio on the manuscript.

Proposals are due by e-mail to voicesoftheadageneration@gmail.com to January 15, 2011 but we encourage and will consider for approval early submissions. Please e-mail co-editors Stacey Milbern and Ari Ne’eman at voicesoftheadageneration@gmail.com with questions.

Magnetic fields used to treat depression, bipolar disorder, TBI, autism

From The Age in Australia. In the picture, Kevin’s bipolar disorder is treated with TMS at The Alfred hospital in Australia.

A pioneering treatment using magnetic fields to stimulate brain activity has helped people with depression live medication-free and is now being trialled on autistic young people, patients with bipolar disorder and those with traumatic brain injuries.

Doctors at The Alfred hospital say transcranial magnetic stimulation (TMS) has a high success rate, with fewer side effects than more invasive treatments such as electric shock therapy.

Patients are fully conscious and do not need hospital admission. Some are even having the 40-minute sessions in their lunch break. A course of treatment is typically five sessions a week for four weeks.

Magnetic pulses applied to a coil on the patient's head deliver a gentle electric current that fires up nerve cells in the brain.

While previously the procedure was tested for use in combating depression and schizophrenia, The Alfred is now trialling ''deep TMS'' for disorders such as autism and Asperger's in patients as young as 18. The therapy uses a coil that stimulates an area of the brain which controls social functioning.

Paul Fitzgerald, deputy director of the Monash Alfred Psychiatry Research Centre, said the treatment had been able to change the way people with the disorders related to others by helping them better read body language and verbal cues.

''We're looking at trying to improve their capacity for social decision-making, their capacity to judge other people's individual emotional state so they can make better judgments in social settings, which is one of the core problems for people with autism,'' Professor Fitzgerald said.

''If you look at brain imaging studies of patients with autism, if they're required to do tasks that involve making social judgments, particular networks in their brain are just not as active as they should be.''

Patients with bipolar disorder and those suffering severe depression after head injuries sustained in road accidents are also seeing results in as little as four weeks.

Another trial is looking at using the technology to help people beat addiction to drugs or alcohol.

Most patients with depression who have had the treatment found it lessened their symptoms and improved appetite and sleep patterns.

Professor Fitzgerald said the therapy had become a mainstream mental health procedure in the United States with up to 250 centres offering it as a standard clinical treatment.

But in Australia it is limited to research trials. A number of funding applications to state and federal governments have been made in the hope of expanding the program to treat up to 200 people a year. At present, about 20 patients are treated annually in clinical trials.

Professor Fitzgerald said if it were more widely available it could be a treatment option for people who were either sensitive to medication's side effects or unwilling to undergo more invasive methods such as electroconvulsive therapy, which requires a general anaesthetic.

''It gives patients a greater degree of choice in the types of treatment techniques they can access,'' he said.

Louise Newman, president of the Royal Australian and New Zealand College of Psychiatrists, said that while early results of TMS trials suggested it had the potential to be an important treatment, it was too early to say if it was effective enough to be used more widely.