Thursday, December 29, 2011

New federal study criticizes DOJ for failing to enforce laws that provide disabled students with SAT, bar exam accommodations

From USA Today:

A new federal study criticizes the Justice Department for failing to enforce laws that provide disabled students with special accommodations for taking the SAT, bar exam and other high-stakes tests.

Testing companies say they don't have to provide accommodations if they think the requests are unreasonable or if they think the applicant hasn't proved they need the accommodation.

People with disabilities such as visual impairment, dyslexia or attention-deficit hyperactivity disorder say they are entitled to extra time, special software or other accommodations that will best ensure that the test reflects their aptitude rather than their disability.

Testing companies say they don't have to provide accommodations if they think the requests are unreasonable, or if they think the applicant hasn't proved they need the accommodation.

The Government Accountability Office (GAO) found that "almost all" of the nine testing companies it studied did not change any practices in response to regulations issued this spring designed to broaden the definition of disability and reduce burdensome documentation. It also found that the Justice Department's hasn't updated training manuals for the law since 1993, nor has it initiated compliance reviews to ensure testing companies meet the standards.

"The testing companies don't want to comply with the law … (and the) Department of Justice hasn't been enforcing the law," said Rep. Pete Stark, D-Calif., one of three House lawmakers to request the GAO study. They are urging Attorney General Eric Holder to conduct periodic compliance reviews of testing companies in addition to strengthening the Justice Department's review of citizen complaints.

The report is the latest wrinkle in a long-festering battle between disability-rights groups and testing companies. Private testing companies say they must guard against applicants who may seek an unfair advantage by requesting accommodations they don't need, and that the use of software increases the potential for security breaches.

"There are many interests at stake. Testing organizations have a legitimate interest in protecting the integrity of the test. … The kids who take the exam who aren't disabled have a right to compete with everyone else on a level playing field," said Washington lawyer Bob Burgoyne, who represents the National Conference of Bar Examiners, which has been the target of several recent lawsuits.

A Maryland judge last year ruled in favor of the bar examiners, but courts this year in California, the District of Columbia and Vermont have sided with visually impaired people who were denied the use of software they requested but allowed to have someone read test questions to them. Disability-rights advocates say inflexible company policies often force them to delay careers.

"Only because I sued was I able to take the test when I wanted to," said Deanna Jones, 45, of Middlesex, Vt., who passed a standardized test required to practice law after a judge ruled she could have access to computer software — the same software she has used throughout law school — to accommodate a visual impairment and learning disability.

Wednesday, December 28, 2011

Virginia father creates app to navigate autism

From The Virginian-Pilot:

Joe Hill watched his son press a finger against the screen of an iPhone, pull back an animated slingshot, and fire a bird through the virtual air.

He was amazed at how quickly Deacon, 3 at the time, mastered the game Angry Birds. A year earlier, Deacon had been diagnosed with autism, a developmental disorder that impairs the ability to socialize and communicate.

As Hill watched Deacon play the popular game, an idea bubbled in his mind for a computer application to help children with autism learn to communicate. Hill's startup company launched Aeir Talk for the Apple iPad tablet on Nov. 30.

"I just really wanted something that was affordable and was also quality work," he said. "There were a lot of apps that did a lot of different things, but I really wanted a one-stop shop for people who had kids with autism."

The application essentially allows children to create simple sentences by selecting from a row of virtual flashcards that represent nouns and verbs.

What makes the app unique, Hill said, is that it allows parents to customize the flashcards, uploading their own photos, typing in their own text and recording their own voices. That allows the flashcards to be personalized for the child.

"The familiarity of things around them really helps in the learning," Hill said.

So far, the $40 app has been downloaded more than 100 times, and Hill's website has received thousands of hits.

And Aeir Talk is a hit with Deacon, 4, and Hill's younger son, Gunnar, 3, who also has been diagnosed with autism. Since they've been using the app, Hill said, his sons are getting better at recognizing facial expressions, and Deacon can now call his brother and grandparents by name.

Until that moment when Deacon played Angry Birds, Hill had struggled to interact with his son and find something to hold the boy's interest. As he played the game for the first time, Deacon giggled and kicked his feet with excitement as the birds squawked and flew across the iPhone's screen, Hill recalled.

"It actually brought me to tears," said Hill, who lives in Chesapeake. "That day was the first time we had actually sat down together and interacted for a long time."

Deacon would play the game for hours or until the phone's battery died. After a day or two, Hill's son even learned how to tell his parents he wanted to play.

"He was saying, 'birds, birds,' and asking for it by name, which is a big deal because he doesn't say much," Hill said. "I hadn't seen him interact with toys like that at all. So I knew there was hope. I knew there's something in his mind that could be unlocked."

The wheels began to turn in Hill's head, too. He began searching the Web for smartphone or tablet computer programs designed for autism. The ones he found were expensive and lacked the features he wanted.

So Hill toyed with the idea of trying to develop an app himself.

Around last December, Hill bounced the idea off two doctors at Children's Hospital of The King's Daughters in Norfolk. The doctors, who had treated Deacon and Gunnar, were enthused.

"Language is one thing that makes a huge difference with autistic children," said Dr. John Harrington, one of the pediatricians with whom Hill met. "Most kids, if they're speaking by age 5, often have a better outcome than if they're not."

Early this year, Hill searched for investors to fund the app's development. He also visited parents who were raising autistic children to determine what features they wanted.

By February, he had found investors, and Hill quit his job selling insurance to focus on developing the application. He approached We Are Titans, a Norfolk-based Web and mobile software development company, to build the program.

But his funding fell through the next month. Facing grocery bills and a mortgage payment, Hill told the developers at We Are Titans to put plans for the app on hold, and he took a job scrubbing toilets at a Chesapeake hotel.

Rather than let the project stall, We Are Titans offered to go ahead and develop the program.

"The type of company that we have, people call us every day with ideas - they have something they call the next Facebook, or something revolutionary," said Zack Miller, a project director at the company. "But not every day do we hear something like this."

Miller's company formed a partnership with Hill, and the company began work on Aeir Talk in May.

Since the app launched, Hill said he's hearing good things, including from Harrington at CHKD.

"Kids with autism can process things fairly well if it's visual and it makes sense to them," Harrington said. Hill "has set it up to take pictures of their natural environment and set up sentence structure so they can communicate."

Children with autism like repetition, Harrington said.

"It allows them to use it over and over again but make changes quickly," he said of the app. "And that's the benefit it of it. It puts educational stuff on its ear."

One early user of the application is Chesapeake resident Donna Hillard. Her son Willy, 14, has been diagnosed with autism.

"When I heard about this device, I knew that he wouldn't outgrow it, because you can make it harder and harder," said Hillard, 60. "So first of all, we put my voice on it. He immediately loved the idea that my voice was on it, and I was asking him questions, and he was pointing to the answers."

Hillard said that in the short time her son has been using the program, he's already improving his communication skills.

Hill wants to share that experience with as many parents and autistic children as possible.

He and We Are Titans are getting feedback from early adopters and plan to continue to improve the application. They also want to launch it on other platforms. Recently, they temporarily dropped the price of the app to $10 to encourage more downloads.

Most of all, though, he wants Aeir Talk to foster his relationship with his sons.

"I hope that my sons will be able to follow directions," he said, "or that they'll be able to look at me and say 'I love you,' and grasp 'I love you.' "

American families saving children with Down syndrome abandoned in Ukranian mental health institutions

From The Daily Mail in the UK:

Her beaming smile and the giant hug from her new sister is a world away from the lonely, uncertain life little Mia had been destined to face.

At just four years old, she was due to be transferred from her orphanage in the Ukrainian city of Donetsk to an adult mental health institution simply because she has Down syndrome.

There, she would have no hope of a family or an education - only the prospect of growing up in an environment of neglect.

But she now has a new, loving home, complete with adoring parents and siblings after her picture was spotted on the internet by American couple Kris and Kecia Cox.

'Her eyes were really what spoke to us first,' Mrs Cox told ABC World News. 'They just grabbed us, and we just knew that she was saying: "You're my mom and you're my dad, and you're supposed to come get me."

Her photograph was posted on the website for Reece's Rainbow, a nonprofit organisation that helps match disabled children - most of them with Down syndrome in eastern Europe - with families in the United States.

In the Ukraine, where society praises appearances, children with the condition are often abandoned at birth. Placing them in grotty institutions alongside adults with severe mental illness is quite common.

Mia (pictured), as she has been renamed by the Coxs, was born Kareen in Donetsk on Jaunary 15, 2007, but when she diagnosed with Down syndrome, her parents terminated their parental rights.

Just a month after Kareen was born, Mrs Cox received the same heartbreaking news Kareen's birth mother was told - her third daughter named Bree also had the condition. Kecia and Kris were devastated.

But their experience made them determined to bring some love into the life of someone in their daughter's position who was far less fortunate. So they started trawling Reece's Rainbow.

'We would come home at night and, you know, get up, get on our laptop and sit in bed and look through all these pictures of the babies and nothing stood out,' Mrs Cox said.

And then one day, when Kris was at work and Kecia was on the computer at home, she clicked on Kareen's picture. It was one she had seen before, but this time something pulled at her.

'When I came in and we sat down and started talking, she, I mean she just burst into tears,' Kris said. 'Basically just said: "I think I found our daughter."'

From then on, it was a family effort to raise money through yard sales and fundraisers to pay for the $30,000 adoption.

'I think we found our daughter': The couple spotted Mia through Reece's Rainbow, a non-profit organisation that helps match disabled children in eastern Europe with families in the United States

'I think we found our daughter': The couple spotted Mia through Reece's Rainbow, a non-profit organisation that helps match disabled children in eastern Europe with families in the United States

The girls - Kyra, nine, Adrie, six, and Bree - made bookmarks and manned lemonade stands. And perhaps the biggest sacrifice for three children, they dumped out their jar of coins they'd been saving for a family trip to Disneyland.

Kecia and Kris then embarked on a month-long trip to the Ukraine to complete the complex process of adopting.

When the couple walked into the orphanage for the first time, they were ushered into a large room with toys on a table and a large mural on the wall.

And then Kareen was brought in, carried by a nurse, her shortly hair carefully styled with tiny white rosettes.

'Priviet,' Kecia said to the little girl – 'Hello' in Russian. She reached out to touch her daughter for the first time.

When asked if they wanted to adopt her, they signed the papers on the spot.
Big hug: Mia welcomes Mr Cox as he arrives at the orphanage to start the adoption process

They returned to the orphanage the next day to start a routine that would last them the next 3½ weeks, taking Kareen to a small playground on a lot of unmowed grass outside the orphanage.

'She smiled a little when we first met her,' Kecia said. 'But after only a couple of days she had a sparkle in her eyes that she did not have before.'

As Kris carried her around the playground - she was a Daddy's girl from the very start - Kecia touched Kris' chest and told Kareen: 'Papa'

At the end of the 32-day stay, Kris and Kecia walked with her through the orphanage gates for the final time. Mia stopped to look behind her, but never looked back again.

In the weeks that followed, Mia changed a little bit more every day. Her pale skin became rosy from spending time in the summer sun, ABC News reported.

Doctors say her weak legs are much stronger and she will eventually walk normally. Her hair grew in thicker and she gained weight, benefiting from a new diet that included fruits, vegetables and protein.

She began learning sign language and now signs words like 'shoes'. She says 'bye-bye' and 'Papa' or 'Daddy' and knows what it means to 'give loves'.

Her sisters have taught her how to play on the swingset, how to terrorize the backyard in a motorized Barbie jeep, how to put on dance parties in the playroom.

'We haven't even touched on her capabilities. She has so much to give and that the world gets to see that now,' Kecia said. 'She doesn't have to be in a little white room hidden away because of an extra chromosome.'

Monday, December 26, 2011

Needs of amputees disabled by military service will continue long after wars

The beginning of a series in the San Diego Union-Tribune:

The current generation of young war-wounded amputees like Sgt. Collin Raaz (pictured), a 25-year-old Marine scout sniper, will likely live 50 to 60 more years.

Vietnam War veterans demonstrated that, absent other medical complications, the life expectancy of amputees can be as long as their peers if they take care of their health.

But much remains unknown about the physical recovery of troops severely wounded in Iraq and Afghanistan, says Jennifer Town, director of C5, the combat casualty care program at San Diego Naval Medical Center in Balboa Park.

“Forward deployed medical assets are giving massive transfusions to these kids, and they are surviving. The lance corporal is putting tourniquets on his buddy,” Town says. Before modern products and measures to control blood loss, “the Raazes of the world would not have made it out of theater in wars past.”

Environmental contaminants are another wild card in their long-term health. “They’ve had exposures to many things. Afghanistan is a very dirty country. Infections and all those things that were taken care of initially with their acute care, is there a long term in any of that?” she wonders.

Federal finances are another unknown. There is little interest, so far, in slashing military health care funding to balance the budget, but “we have to be willing to go to bat and say there is an ongoing requirement for this population,” Town says. “We’ve got to keep the public aware.”
Improved care

Ryan Pavlu, an executive vice president of Wounded Warrior Project, an advocacy and support organization for post 9/11 combat veterans, said “early on when we started receiving heavy casualties, let’s be honest, we weren’t ready. (The Defense Department) wasn’t ready for the amount of casualties they were seeing and the seriousness of the casualties.”

Since then military medical care for the war wounded has improved significantly, Pavlu said, with increased staffing and better treatments.

Wounded service members continue to report shortcomings with care at some smaller regional health care facilities, an over reliance on medication instead of rehabilitative care, bureaucratic red tape, and the effectiveness of cognitive treatments for so-called invisible wounds such as traumatic brain injury and post traumatic stress.

But when it comes to health care for catastrophic physical injuries such as amputations, “especially at the major military facilities,” Pavlu says, “warriors are really getting top-notch care.”

The draw down of troops from the war zone, however, is going to produce another surge in demand for military health services. “They’re going to have physical injuries, mental health injuries,” Pavlu says. “We’ve got to have the health care system in place to take care of those needs. For a time, the health care system is going to be flooded.”

China restaurateur finds retention of employees in overlooked corner: intellectually disabled people

From The China Realtime Report:

While businesses in China’s service sector often struggle to retain employees, Li Ping says he has had no turnover problems with his staff.

The Shanghai-based franchisee, who runs 500 Dairy Queen and Papa John’s Pizza outlets in China, hires many of his employees from a special training school in the city, called Ji Xun. It’s a school for the intellectually disabled.

Around 80 employees who have learning disabilities have been selling pizzas at 22 of Mr. Li’s Papa John’s stores or are crafting ice cream cakes at one of the Dairy Queen factories in Shanghai. They wear pins that say, “Please help me serve you better.” It encourages customers to give feedback on the service, which may be a little slower than at other stores, Mr. Li said.

Most of the workers have been on staff for three years now, some since 2007, when Mr. Li first started hiring the disabled for several Papa Johns outlets. The average turnover rate for other employees is a year or less, Mr. Li said.

The retention rate has been an unexpected reward for Mr. Li’s hiring decision, which he first made five years ago after meeting Special Olympics Chairman Timothy Shriver on a China visit. “I decided that I wanted to change the culture through enterprise, through action,” Mr. Li said.

The culture Mr. Li is referring to is the one in which the mentally disabled have been shunned and shuttered from Chinese society. When Mr. Li was young, he discovered that one of his neighbors had an intellectual disability and was “treated like a prisoner,” he said. Parents of the disabled boy physically locked him up.

Disabilities within China, as with many other countries of the world, are largely seen as social stigmas. Instances in which intellectually disabled children live in isolation or do not have proper care can still be found here, said Mr. Shriver recently in an interview with China Real Time.

But China has come a very long way in recognizing the rights of the disabled, Mr. Shriver said. “A decade ago, leaders were still discussing euthanizing this subset of the population, and now there are examples of integration and inclusion into society,” he said.

In some ways, China has surpassed the U.S. in its recognition of the intellectually disabled, Mr. Shriver said, recalling a recent conversation he had with the mayor of Shanghai, Han Zheng. Mr. Han mentioned that he’d consider creating a separate civil servants exam to enable government hiring of disabled persons.

“You don’t see this kind of progress in the U.S.,” Mr. Shriver said, adding that it’s also scarce to see an entire retail outlet run by intellectually disabled staff.

Over the past decade, the creation of wealth has catapulted the quality of life for most people in China, including those with disabilities, Mr. Shriver said. The government has allocated more funding toward special education, building more schools and opening community centers across the country.

Leaders have also been eager to demonstrate that their attitudes toward the disabled are modernizing. Shanghai hosted the Special Olympics World Summer Games in 2007. The nation’s largest television network, China Central Television, broadcast the events.

Government funding has helped the movement grow from having no participants a decade ago to more than 625,000 today.

There are two Papa John’s outlets in Shanghai that are fully operated by disabled employees.

Mr. Li said he’ll continue to hire more stores like this. He hopes to encourage other businesses to do the same.

In Minnesota, deaf man settles suit against Ramsey County jail for $230K

From The St. Paul Pioneer-Press:

A deaf St. Paul man agreed Tuesday to a $230,000 settlement with Ramsey County over his jailing after a 2006 traffic stop.

Douglas Bahl (pictured), who claimed his rights were violated in the incident, and the county reached the agreement in federal court in St. Paul.

Under the deal, the county also agreed to change its jail procedures.

Bahl, a longtime sign-language trainer at St. Paul College, said police pepper-sprayed and beat him after refusing communication with him during the traffic stop. He was then jailed for three days.

In a lawsuit filed against the county in 2008, he said he was denied an interpreter to explain the charges against him, jail procedures and how he could be released.

According to the suit, Bahl also was given no special aids or devices to help him communicate with his family or attorney. His wife, who also is deaf, was in the hospital recovering from surgery at the time.

Police contended Bahl would not speak with the officers during the stop, grabbed an officer's jacket and punched and bit him.

Bahl was convicted in 2007 of misdemeanor obstructing legal process but acquitted of the more serious charge of obstructing legal process with force.

Jail officials said they offered Bahl use of a text-telephone device for the hearing-impaired, but he declined.

Tuesday's settlement stated that jail officials continued to deny Bahl's allegations.

Bahl's attorney, Roderick Macpherson III, could not be reached for comment Tuesday.

The settlement requires Ramsey County to ensure that deaf and hard-of-hearing inmates have means of communication that is "equally as effective as that provided for arrestees who are not deaf or hard-of-hearing" and provide such "auxiliary aids and services...without charge."

The settlement also requires the county to contract with or hire qualified sign-language interpreters and guarantee their availability at all times - within an hour of the county's taking custody of an arrestee.

But the lawsuit adds that the jail's "Deaf and Hard-of-Hearing Coordinator" - a new position - could determine "in writing that there is an equally effective means of communication or that the individual's request poses an undue financial or administrative burden." Such a statement would "include...the reason(s) for not providing the auxiliary aid the deaf or hard-of-hearing person requests."

The settlement also requires the jail to have a videophone, text-only cell phone and teletypewriter for inmates.

The Ramsey County Board of Commissioners signed off on the settlement Tuesday.

Randy Gustafson, Ramsey County sheriff's spokesman, said he would meet with jail officials today to determine what services the jail already offers and what changes need to be made.

Since the suit was filed, Gustafson said, changes have been made at the jail relating to talks with advocates for the hearing-impaired.

As for the new coordinator position, "It could be an existing staff member....We're trying to sort that one out," Gustafson said.

In 2008, then-Ramsey County sheriff Bob Fletcher said changes already had been made at the jail, including video conferencing for those with sign-language skills, email and text messaging services for deaf inmates. Fletcher said his department had secured contracts to make sure sign-language interpreters are available within four hours of the time someone is taken into custody.

The settlement gives Bahl and his wife, Susan Kovacs-Bahl, who joined him in the lawsuit, $57,500. Their attorneys, the Minnesota Disability Law Center, will receive $172,000.

The Bahls also have sued the St. Paul police department for officers' actions during the traffic stop; that suit is ongoing.

Deafness shaped Beethoven's music

from AFP:

PARIS — Progressive deafness profoundly influenced Beethoven's compositions, prompting him to choose lower-frequency notes as his condition worsened, scientists said on Tuesday.

Beethoven first mentioned his hearing loss in 1801 at the age of 30, complaining that he was having problems hearing the high notes of instruments and voices.

By 1812, people had to shout to make themselves understood and in 1818, he started to communicate through notebooks. In his last few years before his death in 1827, his deafness was apparently total.

Writing in the latest issue of the British Medical Journal (BMJ), a trio of scientists in the Netherlands dissected Beethoven's string quartets.

They grouped these works into four ages, ranging from early (1798-1800) to late (1824-26).

The experts looked at the first violin part in the first movement of each quartet, counting the number of notes above G6, which corresponds to 1,568 Hertz.

Use of higher notes decreased as the deafness progressed, they found.

To compensate, Beethoven used more middle- and low-frequency notes, which he could hear better when music was performed.

But in the late quartets -- written by the time he was totally deaf -- the higher notes returned.

"When he came to rely completely on his inner ear, he was no longer compelled to produce music he could actually hear when performed, and slowly returned to his inner musical world and early composing experiences," says the paper.

The study is authored by Edoardo Saccenti, Age Smilde and Wim Saris of the Netherlands Metabolomics Centre in Leiden.

A video of the research can be seen on (

Saturday, December 24, 2011

Blind music pioneer fires up Nigeria's modern sound

From CNN:
LAGOS, Nigeria -- Like his long-time hero Stevie Wonder, Nigerian music pioneer Cobhams Asuquo (pictured) was born visually-impaired. And again, like the American R&B legend, the lack of sight was never enough to stop Asuquo from realizing his ambitions.

Instead, it only fueled his optimism and desire to achieve success.

"Being blind has played an integral role in forming who I am and I think to some extent is responsible for my optimism," says Asuquo, an award-winning music producer, song-writer and musician.

"When you feel there's nothing more to lose -- if you want to work towards anything, you probably will want to work towards gaining and I think that's what being blind has done for me."

A versatile musical talent, Asuquo has been pushing the boundaries of Nigeria's contemporary sound. His fresh mixture of different styles and beats has helped the west African country become one the continent's modern music hotspots.
Listening for Nigeria's next music star

"I fuse a lot of stuff to create my music" he says. "It varies -- it's jazz, it's classical, it's Afro, it's whatever, it depends on what best interprets the music."

'Ghana's Bob Marley' spreads message of brotherhood

Possessed of natural talent, the self-taught musician started honing his skills from an early age while growing up in a barracks.

As a young boy, he used to organize concerts in his neighborhood, drumming on his mother's barrels of water.

"All the kids from the neighboring block would come and we'd hang out and we'd make so much noise. I didn't realize at the time that I was preparing myself for what would be my life, my career path, my destiny," Asuquo remembers.

His musical journey, however, seemed to come to a halt a few years later when he entered university to pursue studies in law.

But Asuquo soon realized that he had to follow his musical passion, leaving university to embark on a path that, for a young blind musician in Nigeria, was far from easy to tread.

"(I had to) sleep on studio floors all across Lagos, worked at different studios, worked without pay, I've been out on the road, out on the streets, doing my thing," Asuquo recalls.

I feel there is a lot I've learned in my journey as far as music is concerned and I'm in a position to share that knowledge.
Cobhams Asuquo, music producer

"I had to convince people that I could do it -- I had sessions that were canceled because they weren't sure I could deliver either because they thought I was too young or maybe as a blind person, 'how do we trust our music which is our future and investment?'" he adds.

But it didn't take long for Asuquo to prove himself as his musical talent soon began to shine. Over the next few years he went on to work closely with internationally-renowned artists such as pop sensation Asa and R&B star Darey and today he is a much-in demand producer operating from his own studio.

Meet Asa, African pop legend in the making

He is also a judge on Nigeria's "Project Fame," a television musical talent show where he helps young singers achieve their dreams.

"It's important for me to mentor and inspire fresh talent, to work with fresh talent," he says.

But Asuquo is not only interested in helping out fledgling music stars. He also sees himself as an ambassador for blind young Nigerians who still face many challenges in their daily lives.

"I think it would be meaningless if I can achieve as much as I can achieve and as much as I hope to achieve and I'm not able to affect other blind people," he says.

"It is time to bring to the fore the needs of people with special needs and just how much they can contribute to growing Nigeria as a nation and the world."

Director Stephen Daldry talks Asperger's, depicting 9/11 in 'Extremely Loud and Incredibly Close,' and the Oscars

From The Playlist on Indie Wire:

At present, up to the imminent release of “Extremely Loud And Incredibly Close,” Stephen Daldry is three-for-three in terms of films to Best Director Oscar nominations; there’s clearly something about the stories he tells hitting a nerve among Academy voters, no matter how challenging (“The Hours”) or even controversial (“The Reader”) his subject matter. 'Extremely Loud' suggests that he’s as interested as ever in posing hard questions and finding powerful answers, as he brings to life Jonathan Safran Foer’s novel about a child with Asperger’s who takes an extraordinary journey to come to terms with the death of his father during 9/11. The Playlist spoke to Daldry in New York last week, where the acclaimed filmmaker shrewdly posed a few queries of his own as he revealed the personal and professional motivations for taking on tough stories.

To get started, talk about your approach to this adaptation, since it’s material that’s weighted with a lot of emotional substance, in order to make sure that it isn’t maudlin or exploitative?
Well, the first question is, when did you see the movie?
I saw it Friday.

How was it?
Um, I liked it. Many of my questions for this interview are based on viewing the film, especially about the kid, but I really liked Max Von Sydow, and the scene with Jeffrey Wright in his office is just phenomenal.
Do you think we made any mistakes in our portrayal of 9/11?

I was a little skeptical about the imagery of [REDACTED], but it obviously feeds into what this child’s nightmare is about what happened to his father. It made perfect sense, but I wasn’t sure how I personally felt about seeing that.
I’m with you on it. I think that’s right. And there was a whole discussion in my own head about what was appropriate to show and what was not appropriate to show, and that particular image that you’re talking about was one that caused me the greatest discussion – should we show this, should we not show it, and I just thought that the reason it’s in is because I thought it was in the entry for what the kid was imagining how his father might have died. And that’s why I left it in, but it was a big debate.

This child seems to be a representation of people’s understandably mixed reactions to 9/11 – confusion, anger, and a search for answers and resolution. How much did having a child who has Asperger’s, who may not have focused reactions to things, enable you to articulate a lot of feelings that are maybe less politically correct, and at the same time explore them honestly?
What a complicated question. I mean the first thing, the honest answer to that is, telling the story through the eyes of a boy was not my choice, it was the choice of Jonathan Safran Foer, who wrote the book. That comes as a given, so the question should really go to Jonathan: why did Jonathan want to tell it [that way]? I mean, that is a great question for Jonathan, and I’m sure he would be the right person to answer it. But my responsibility is to Jonathan, to tell the story that Jonathan wrote, and to make that into a movie, knowing that the two mediums are entirely different. And I have a responsibility to my own emotional responses to 9/11 to make sure that I’m doing what I think is truthful and what I think is appropriate – and to steer it away from things that I don’t think is appropriate. For example, I had to make the choice about whether I wanted to see Tom Hanks in the North Tower, and I just felt I really couldn’t go there; it was just really a step too far for me. And even images, like, do I really want to see the Twin Towers? Do I really want to look at the Twin Towers burning, and in the end, the only reason you do see the Twin Towers burning is because the office, the location we were looking for Sandy [Bullock] to work in had a direct view downtown of the Twin Towers, but through this really sort of refracted old New York glass, and I thought, I can possibly bear looking at it if it’s through this refracted glass. And it was a real view from that office. So I thought, well, I’ll do it – not just that she’ll take the phone call, but walk up to the windows so that she can actually see where her husband is, even though it’s through this refracted glass. So all of those choices were made in getting ready for the movie. But it’s a movie about catastrophic loss, and a special child who is somewhere on the autistic spectrum, trying to find his own logic – trying to make sense of something that literally doesn’t make sense to him. And then, I think the story is about a family in catastrophic grief who start to re-form -- and I don’t think I’m talking about healing, I’m talking about a family that’s beginning to come together after that terrible loss. I think everyone will have their reaction to what is true to this story, and that is entirely appropriate – everybody’s got their own 9/11 stories. And everybody has their own way of looking at it, as you quite rightly said. It will be too much for some people, and other people might find it difficult, but it has to be a personal response.

How much research did you do or feel was necessary to portray someone with Asperger’s accurately, without testing the audience’s sympathies when he’s saying some hurtful things to the people around him?
We did a lot of research. I mean, as the kid says in the movie, the diagnosis was inconclusive whether he has Asperger’s or not, but I spent a lot of time with different experts of Asperger’s and talked to them. Every child is different on the autistic spectrum, so we created our own version of a child that was in some way – not heavily, but somewhere on that spectrum in terms of the fears and the phobias. And that’s even down to color and fabric and touch and smell and noise and focus, where the depth of field and focus was, and where it could be, and all of those things. We spent a long time getting into them, and that’s why in the film sound and focus is so important, not just to the movie but in the creation of the character and how he moves and exists in the world – I viewed it as an emotional landscape. And obviously, the last thing I wanted to do was portray a Disney kid; this is a kid who’s in trouble, and the last thing I wanted to do with that kid was have a cutesy kid that’s demanding of the audience’s sympathy. He may earn the audience’s sympathy, but not demand it – I think that would have been terrible.

Having directed three other films which were nominated for Academy Awards, do you think consciously about the fact that the material you choose may attract that kind of attention?
I don’t. I don’t think about it.

This is a film which, because of its performances and how powerful the material is, may earn that kind of attention. How does it feel to be catapulted into that context, with or without trying to?
We’re not in that context. You know, I think we’re all a way off from that, and the Academy will have to make up their minds about what they deem [worthy], or how they want to hand out their medals. And I think that’s absolutely fine. Right now, I finished the movie less than a week ago, so it’s not really on my radar at all at the moment.

“The Reader” and “The Hours” have a tableau-like storytelling that’s similar to this one, even though the subject matter is very different. Is there anything that consciously draws you to these sorts of projects, as opposed to something like an action movie or a romantic comedy?
I never know. That’s the honest truth, and you never know what material speaks to you, and what material doesn’t speak to you until it lands. And this one landed and I read it straightaway, and straightaway, I rang back to my old friend Scott [Rudin] and said, count me in. I can’t say there’s any pattern or logic or any thought into a career in that sense, although obviously I would really like to make the next “Batman,” after Chris Nolan.

What’s the general nature of your collaboration with Rudin, in terms of him bringing you material or vice versa?
Scott is one of the greatest people in cinema today to find material that speaks to him, and I’m glad that he sends it to me. And, he’s one of my best friends, so we work very closely together, and he’s a great person and a great friend.

How much thought have you given to that Richard Curtis project, “Trash,” as a follow-up to this? And how much can you think about what’s next while you’re finishing the project you’re on?
None. My next project is the 2012 Olympic Games in London, so I’ll be doing the Olympics for the next year.

Is “Trash” something you’ll definitely be doing in the future?
You know, who knows? That’s the honest answer to that. But I’d love to work with Richard, because he’s a great guy.

Is there any book or property that you do have a strong emotional connection to?

I’m competing with Chris Nolan to make the next “Batman.” I want to make “Batman.”

Why is that?
Because it’s a great story! And you get lots of toys.

If you made a “Batman” movie, is the machinery of that kind of film something you think you would be comfortable with?
I was joking. I wouldn’t know where to begin, and there’s lots of people that do that really well, and they should get on with it and I can enjoy it when I see it in the cinemas. But no, I don’t think I would very good at it.

In treating disabled people in New York, potent drugs and few rules

From The NY Times:

Something was happening to Katie Strignano (pictured).

After she was moved into a state-run group home, the 26-year-old woman, who is severely mentally retarded, started gaining weight, drooling, breaking out in pimples and pulling out her hair, leaving a bald spot the size of a softball on her head.

Her mother, Debra Strignano, suspected that someone had increased her daughter’s medication without her family’s consent.

When she asked for a copy of a consent form she had once signed for her daughter, she discovered it had been altered, tripling the daily dosage of Clonidine, which is used to control attention deficit disorder. The drug, and four others her daughter was taking, have myriad potential side effects, including rapid weight gain, skin rashes and drowsiness.

In response to questions from The New York Times, state officials said they would investigate how the consent form was changed and whether Katie Strignano was receiving the appropriate dose of medication.

“Everything with them is, let’s sedate the kid instead of trying to solve the problem,” Ms. Strignano said. “They want to dope her up; they want her to sit there like she doesn’t exist.”

Tens of thousands of powerful pills created to treat serious mental illnesses like schizophrenia are given to developmentally disabled people in the care of New York State every day.

But a review by The Times of previously unreleased records, as well as interviews with state employees, clinicians, family members and outside experts, reveals that the psychotropic medications, which alter the brain’s chemistry, are often dispensed sloppily, without rigorous or regular review, by general practitioners with little expertise in the area.

And low-level workers at state group homes are frequently given discretion to increase the medication “as needed,” despite their lack of significant training.

Psychologists who have worked inside the system describe a culture in which the drugs are used to control the disruptive behavior of the developmentally disabled — people with conditions like autism, Down syndrome and cerebral palsy — an approach increasingly discredited in the field.

The problem is that people with mental retardation, because of their condition and diminished intellectual capacity, commonly exhibit symptoms similar to those seen among people who have impulse control, anxiety or attention deficit disorders.

Psychiatrists and psychologists interviewed by The Times said those symptoms were best treated through therapy and one-on-one guidance of the developmentally disabled. But state records indicate that the doctors are often instead treating them with the psychotropic drugs, which do not address their underlying problems and can be harmful.

“It’s a mistake,” said Dr. Andrew Levitas, an associate professor of psychiatry at the University of Medicine and Dentistry of New Jersey who specializes in developmental disabilities. “Using antipsychotics to suppress behavior is an old practice used by people who aren’t acquainted with the advances in the field.”

The Times review found that 4 of the top 10 medications or supplements given to the developmentally disabled in the state are psychotropic, according to Medicaid records. In fact, developmentally disabled residents of group homes in New York are more likely to be given Ativan, an anti-anxiety drug that has a tranquilizing effect, than multivitamins, the records show.

Concern about drug use was one of the most frequently raised issues in inspection records reviewed by The Times; in the last five years, all nine state residential institutions for the developmentally disabled have been repeatedly cited by Health Department inspectors for failing to provide proper oversight of psychotropic drugs.

The drugs can have serious consequences. Risperdal, the second most frequently prescribed, was developed to treat psychotic disorders and has been approved for controlling aggression among people with autism. But its side effects can be extreme, including breast growth in adolescent boys, which in a small number of cases require mastectomies.

And even the use of the drugs to control behavior is questionable. A 2008 study published in the medical journal The Lancet found that psychotropic drugs like Risperdal were less effective at treating behavioral outbursts than placebos.

Dr. Roy Q. Sanders, who is the medical director of the Marcus Autism Center in Atlanta and has worked in New York, said, “I tell people all the time that the medications are really blunt tools when it comes to making substantial differences in behavior in developmentally disabled individuals.”

To be sure, the issue is a complicated one: developmentally disabled people are more likely than the general population to suffer from mental illness.

But the records examined by The Times show that some developmentally disabled residents received psychotropic drugs without ever getting a clear diagnosis of mental illness. Even among those who have a mental illness, the records indicate that the state’s use of the drugs can be overly aggressive.

During the last few months, as The Times has sought information about the state’s use of medications, the Office for People With Developmental Disabilities has acknowledged that there are problems, and began to develop sweeping guidelines for the use of medication. The new rules say medications “shall not be used for disciplinary purposes” or “as a substitute for supervision.”

“We know that less intrusive techniques work,” said Courtney Burke, commissioner of the Office for People With Developmental Disabilities, which oversees thousands of group homes and larger state facilities.

Ms. Burke said her agency was developing software to track the use of psychotropic drugs better and was creating a position, a chief of pharmacy, to oversee how drugs are used. New regulations, she added, would “help move the system to one that does not rely on medication or physical intervention.”

The Clinician’s View

Diana Valitutto, a former state psychologist, said she resigned from the Office for People With Developmental Disabilities in 2004 after concerns she raised about the use of psychotropic medications were ignored.

State law says that “no medication shall be used for the convenience of staff” and that “special attention shall be given to those individuals receiving psychotropic medication.”

But oversight is limited. Although psychotropic drug use is supposed to be regularly reviewed, records show those reviews are seldom rigorous. The bar is higher in Massachusetts, for example, where state officials must have the approval of a judge to use drugs classified as antipsychotic.

“It’s worked well to protect people with mental health and cognitive impairments over the years,” said Marianne Meacham, general counsel at the Department of Developmental Services in Massachusetts. “It’s somewhat burdensome, but it’s definitely an important protection.”

In New York, Ms. Valitutto grew so worried about the overuse of drugs that she went to the Commission on Quality of Care and Advocacy for Persons With Disabilities, a state oversight agency, with examples of residents on what she believed were overly aggressive regimens of psychotropic medications.

“I saw people being medicated to control behavior to such a degree that to me it was obviously and clearly affecting their health, their safety, their quality of life, their ability to participate in the daily activities of living, and in some cases threatened their lives,” Ms. Valitutto said.

Ms. Valitutto said there was little consistency in how drugs were used: In central New York, she said, they were dispensed carefully and ethically. But that was not the case in the Albany area. A retired state psychologist who was approached independently by The Times vouched for Ms. Valitutto’s professionalism and offered a similar account, saying the residents in that region were often treated with multiple medications from the same class, a practice discouraged by the medical establishment.

“We would always go to drugs,” the psychologist said. “Once you get a client on a lot of medications, it’s hard to know what’s working and what’s not, and it’s hard to get them off.”

The commission, which declined to comment, never took any action on the concerns brought forward by Ms. Valitutto, and she resigned.

A Chronic Problem

Every year, the State Health Department inspects New York’s nine large residential facilities for the developmentally disabled. A review of 2,000 pages of inspection records found repeated violations of basic protocol for drug treatment at all of them.

A resident at Bernard Fineson, a state institution in Queens that is perennially cited for violating drug administration policies, was on a drug diet of Risperdal, Ativan and the antiseizure medication Depakote, but inspectors wrote that “there is no evidence of a team review regarding justification for the current medication regime.” A resident at a Hudson Valley institution was on seven psychotropic drugs, along with Benadryl; inspectors worried that “there was no process evident that evaluated the risks of the untreated behaviors against the risks of the medication.”

At an institution in Broome County, inspectors reviewing the records of several patients could not even figure out what behavioral problems were being treated with drugs like Depakote, lithium, Thorazine and Zoloft.

The nonprofit facilities overseen by the state are not much better.

During a recent six-year period, Living Resources, a nonprofit organization in Albany that cares for about 300 people, was cited for 11 violations related to misusing drugs to control inappropriate behavior. That is the most of any nonprofit provider in the state in that period of time, according to inspection data analyzed by The Times.

“We have a lot of people that we care about and care for,” said Fredrick W. Erlich, the Living Resources chief executive officer, adding, “We are going to make mistakes.”

In search of alternative approaches, state officials are now studying the practices of the ARC of Delaware County, a small nonprofit group serving the developmentally disabled in the Catskills. The group has a policy banning what they call “pharmacological restraints,” or the use of drugs for reasons beyond treating medical problems.

“We’re not antimedication, but we believe people need the least amount to take the edge off so they can be available for teaching, and ultimately as they learn, those medications get reduced and eliminated,” said George Suess, chief executive of the ARC of Delaware County. He added that his residents “are functioning, they are learning, they are not zombied out, sitting in a corner like vegetables.”

A Sister’s Keeper

Taraneh Vargha’s sister was on so many psychotropic medications at her group home in the Finger Lakes region that her hands would shake, her body temperature fluctuated, her heart raced and her chest ached. She had tardive dyskinesia, a disorder characterized by involuntary repetitive movements that is common among people on high dosages of antipsychotic medications.

The sisters are both Iranian-born American citizens and members of the Bahai faith, whose members have been persecuted in Iran since the Islamic Revolution in 1979. Ms. Vargha’s sister received a number of shifting diagnoses over the years, including autism-related disorders, mild mental retardation, post-traumatic stress, bipolar disorder and schizophrenia.

At the same time, state officials conceded in records obtained by The Times that they did not really know what her diagnosis was; assessing her has been complicated by the fact that Ms. Vargha’s sister is far more fluent in Persian than English.

Despite confusion about her diagnoses, there has been clear concern expressed in state records about the volume of drugs she was being given. None was more prevalent than Geodon, an antipsychotic made by Pfizer. Ms. Vargha protested after her sister, 47, was given as much as 360 milligrams per day; the maximum dosage recommended by the Food and Drug Administration is 160 milligrams.

In a statement, Easter Seals, which operates a clinic that prescribed the medication to Ms. Vargha’s sister, said the choice to provide such a high amount of Geodon was “not uncommon” and done “with close monitoring.” It added, “We do not believe the dosage prescribed was a mistake, but that it was done consistent with appropriate protocols.”

The Times asked Dr. Levitas about such a dosage.

“It is not only not accepted, it is dangerous,” he said, adding, “I’ve never seen Geodon used at that dose before.”

The Office for People With Developmental Disabilities reviewed the case after being approached by The Times and is referring it to the Commission on Quality of Care. “What we have found,” the office said, “is sufficiently concerning that we have determined an independent, external review is necessary.”

Records obtained by The Times show state officials expressing alarm, even if they took little action.

“The Geodon is well above (i.e. 3x above) the typical upper level for this med. This is of great concern,” says a report in August 2008, drafted by an oversight committee in the Finger Lakes division of the Office for People With Developmental Disabilities. “This is a very large dose of Geodon,” said another report from September of that year. And yet it continued. A review by the Health Department said the Geodon dosage in 2009 was “excessive and much above the F.D.A.’s limits.”

Geodon dosages were drawing scrutiny from federal prosecutors at the same time. In 2009, Pfizer paid $301 million to settle allegations by the Justice Department that company representatives marketed the drug for unapproved uses and encouraged doctors “to prescribe the drug at substantially higher than approved dosages.”

Like all psychotropic medications, Geodon has potential side effects, like anxiety and weight gain, and far more serious risks, including vision problems. And Ms. Vargha’s sister was also taking four other psychotropic drugs, each with its own potentially damaging consequences.

Ms. Vargha fought for years before her sister’s dosages were reduced. “Why on earth would we give psychotropic medications to a population that is already vulnerable and struggling to use their brain?” she wrote in a letter to the state this year. “Why do we want to numb and dumb them more?”

Three months ago, increasingly desperate, Ms. Vargha, 56, removed her sister from the group home, and took her to her house.

When a reporter visited Ms. Vargha’s home recently, her sister was disoriented and briefly mistook the reporter for an Iranian policeman. At night, she walks the hallways, speaking Persian.

“She’s getting better, she’s eating now a bit, but she doesn’t sleep,” Ms. Vargha said. She hopes to get her sister back on her feet soon and move her into a group apartment in Rochester — where she hopes her sister can regain some sense of herself.

“My sister came with so much hope to this country, America, the land of freedom,” she said. “When she became a citizen, she put both arms up and said, ‘I love this country.’ ”

She added, “I want her to experience what she believed in.”

Friday, December 23, 2011

Autism-friendly Santas a hit at malls, parties

From USA Today. This photo provided by Darlene Borre, shows her son, Ben Borre, 10, of West Hartford, Conn., with an autism-friendly Santa Claus, Ray Lepak of Manchester, Conn.

HARTFORD, Connecticut – Visiting a shopping mall to share Christmas wishes with Santa had always been too much for 10-year-old Ben Borre, due to the autism that makes the noise, lights and crowds an unbearable torment.

But now a growing number of "sensitive" Santas in shopping centers, at community parties and elsewhere are giving Ben and others a chance to meet the big guy in autism-friendly settings — allowing their families to capture Christmas memories that other families may take for granted.

Ohio-based Glimcher Realty Trust recently started offering sensitive Santa sessions in its two dozen malls nationwide, and service organizations and autism family groups have recruited low-key Kris Kringles who adjust their demeanor to the special needs of their young guests.

"Every parent dreads the noise and chaos of the mall Santa scene, but this isn't even dreading. It's just literally un-doable for us," said Darlene Borre of West Hartford, Ben's mother.

Ben, a nonverbal fourth-grader, is among the up to 1.5 million Americans living with autism spectrum disorders that can include delays or disabilities in communication, behavior and socialization. They can range from mild difficulties to significant impairments that make it difficult for those children to interact with others.

Many children with autism are especially sensitive to loud noises, jangling music, crowds and unpredictable situations, and could not wait patiently in a long line to see Santa.

The Borres tried without success a few times over the years to grab quick snapshots if Ben walked close enough to any Santa, but with mixed results.

Now, he visits an autism-friendly Santa each December at a local playground. The sensitive Santa happens to be Ben's grandfather, Ray Lepak, who was compelled after seeing what his daughter's family was experiencing.

"Just because a family has a child with special needs doesn't mean they don't want all the same memories that everyone else does," Borre said. "We all want those same holiday joyful moments; it just has to be approached differently."

Ben's sister, 4-year-old Lila, who does not have autism, and is getting wise to the fact that Santa and Grandpa bear a suspicious resemblance. But she's not letting on to Ben.

Lepak, 69, of Manchester recently donned his Santa suit — plus a brand-new beard and snow-white wig — and met with several Hartford-area children and their parents. He's learned over the years how to pep it up for siblings who don't have autism, and how to tone it down for children who seem overwhelmed.

He starts with a few mellow "Ho, Ho, Ho" greetings, watches for those who are intrigued, and smiles or beckons to them to come closer. Many steer clear but watch him, either curiously or warily, while others remain disinterested.

"You'll see them watch Santa out of the corner of their eye, then little by little they'll come closer, then walk away as if you're not there, and come back in a bit," Lepak said. "It's really about following their lead and communicating on their terms."

Some will give him a high five; the braver ones might sit on his lap. At the recent gathering, one child had no interest at all in Santa until he realized that the big guy in the bright red suit was willing to push him on a swing — and those fleeting moments were enough for the boy's family to snap pictures.

A growing number of malls also are setting aside special times for sensitive Santa visits when the shopping centers would otherwise be closed.

A recent autism-friendly Santa visit at its Northtown Mall in Blaine, Minnesota, just outside of Minneapolis, drew 55 children despite poor weather, and last year drew more than 100.

Linda Sell, Northtown's marketing director, said the two-hour window on a recent Sunday morning was devoid of lines and the bustle of a regular Santa visit. Instead, children could play and color nearby until their number was called.

Sell said they also turned off the Christmas music, dimmed the lights, sent maintenance workers and other potential distractions away, and asked parents to fill out a form to give Santa the heads up on the boys' and girls' wish lists.

"Some kids will sit next to Santa. Some will want to stand a little farther away and look at him, or sit in the chair next to him, or have mom or dad next to him," Sell said.

For a child on the autism spectrum, sometimes the smallest item or gesture can spark a connection — such as the Northtown Mall Santa's gold watch or the tiny Christmas train that rotates inside of it.

"It's so hard on some of these families trying to take some of the kids out," Lepak said. "What a feeling that is, when I'm inside the Santa suit and I see those little innocent faces. They love it and it warms my heart."

Wednesday, December 21, 2011

Way to go, Gov. Cuomo!! Compromise reached - NY City cabs to be wheelchair accessible

from WNYC:

Governor Andrew Cuomo has agreed to sign Mayor Michael Bloomberg’s controversial taxi legislation with some big tweaks.

The major change is accessibility.

Cuomo announced on Tuesday a compromise was reached expanding taxi service in Upper Manhattan and the outer boroughs, by allowing livery cabs to pick up street hails, and finally meeting his concerns about ensuring wheelchair accessibility.

Under the new agreement, 2,000 yellow medallions will be auctioned and all must be wheelchair accessible.

The bill that passed earlier this year would have made available 1,500 medallions available with only 500 set aside as accessible.

"No one thought we'd get this home," the mayor at the press conference via telephone. "We never gave up and we never stopped making the case."

The legislation authorizing the sale of the medallions, which will generate $1 billion in revenue for the city, has been held up for weeks by Cuomo, who said the bill did not provide enough accessible cabs, and would be shot down in court.

The city is currently awaiting a federal court decision that alleges the Taxi and Limousine Commission discriminates against people in wheelchairs, violating the Americans with Disabilities Act. Currently, only about 2 percent out of the city’s fleet of more than 13,000 yellow cabs are accessible.

To address this, Tuesday’s agreement requires the city to propose a long range accessibility plan. The TLC must consult with disability groups and other stakeholders before submitting a Disabled Accessibility Plan. The proposal will then be open for public comment and be sent to the City Council, as well as the State Department of Transportation for approval.

As for permits for outer borough livery cabs, 18,000 permits will be made available over the next three years, and 20 percent of those cabs must be accessible. The city's original plan had called for 30,000 permits.

The city will be required to provide grants as an incentive, of up to $15,000, to help pay for the retrofitting of livery vehicles or to purchase new accessible cars.

The livery permits will cost $1500 to start, but then immediately become transferable medallions, something many livery drivers had pushed for.

Yellow medallion fleet owners have led industry opposition.

They’ve argued that allowing outer borough street hails will devalue their medallions. “[The plan] would also threaten the short and long term viability of the medallion asset that has provided economic opportunities for thousands.” Ron Sherman, president of T=the Metropolitan Taxicab Board of Trade, said in a statement. “We hope this new bill has the teeth to protect our industry and we will cooperate with the Governor to achieve this goal.”

TLC Commissioner David Yassky said the agreement "will bring first rate, legal taxi service to all five boroughs." He also attempted to avoid some questions that doubted the mayor’s record on promoting accessible taxi service

Disabled groups, including the Taxis for All Campaign applauded the announcement, happy to be the focus of the deal hammered out by the various political camps.

Chair Edith Prentiss said “This deal will mean that people who are disabled will have the same option as every other New Yorker: the ability to travel spontaneously, quickly and easily when they are going to their jobs, to school or just out for a night on the town.”

The agreement will be introduced as a chapter amendment in the next session legislature in 2012.

California parents say Riverside School District pressured them to waive special education rights

from California Watch:

By the time Krista McGhee pulled her son from school in the Riverside Unified School District (pictured), she said the fourth-grader had taken to hiding under his desk, been bitten by his classmates and been bruised by a teacher's aide trying to restrain him. McGhee's son, who has Asperger's syndrome, had been in a special day class for emotionally disturbed children since second grade – a setting she said had devolved into "a nightmare."

Fearing for her son's safety, McGhee asked the district to hold an emergency meeting to discuss his individualized education program, a federally mandated document that guides the goals and services for each public school student who receives special education.

A program meeting requires the participation of a specific group of people, including special and general education teachers. Instead, two district officials presented McGhee and her son's father, Mark McGhee, with what the parents said was a "take it or leave it" settlement: Their son would be placed at the school they wanted, but they would waive several rights under state and federal law, including the right to request changes to his individualized program for the next 16 months and the right to file claims against the district during that time.

"I was just at my wit's end," Krista McGhee said. "I felt like a soldier with battle fatigue. … I felt backed into a corner." The McGhees signed the agreement within an hour.

The McGhees and another parent, Mojdeh Ghadiri-Asli, claim in lawsuits that Riverside Unified pressured and duped them into signing agreements that violate state and federal special education laws.

"They're sort of blindsided," said Heather McGunigle, the Inland Empire director at the Disability Rights Legal Center and an attorney for the families. "Even though they got something out of the contract, what they lost was something significantly greater, which was the right to participate, which they were not aware was going to happen."

The lawsuits – the McGhees' was filed in October, Ghadiri-Asli's last year – are pending in U.S. District Court in Riverside. Jack Clarke, an attorney for Riverside Unified, said the school district is "actively trying to resolve these matters through negotiation and discussion with the families through their legal counsel."

It is not illegal or even unusual for school districts and families to enter into settlements regarding special education placement and services. But the practice needs parameters to protect parents' procedural safeguards, McGunigle said.

McGunigle said she believes there are other parents at Riverside Unified with experiences similar to those of her clients. The district serves about 4,500 special education students.

"They (Riverside Unified) engage in this sort of method of administration, and they have a practice of doing this," she said.

The practice is one the district's director of special education, Tim Walker, has been criticized for in the past. In 2008, under a settlement with the Santa Monica-Malibu Unified School District, Walker resigned as the district's deputy superintendent after coming under fire for using confidential settlements in special education disputes.

Prior to Walker's resignation, the district commissioned an independent evaluation of its special education program. The report, conducted by Lou Barber and Associates and released in March 2008, found Santa Monica-Malibu, which served about 1,400 special education students annually, used settlement agreements "to a much greater extent than school districts in the region" – more than 140 over three years.

While most districts declined to disclose the number of settlements they signed, all said the agreements were used "on a very limited basis," the report said. Several districts said they'd signed no settlements for several years; others estimated using fewer than 10 to 15 during the school year. The Southwest Special Education Local Plan Area, which includes 12 Southern California districts and about 12,500 special education students, reported about 20 settlements through March of the school year.

Walker is not named as a defendant in the Riverside Unified lawsuits and did not return requests for comment. At a 2006 Santa Monica-Malibu school board meeting, he defended the practice of resolving disputes as "the least contentious level," according to The LookOut News in Santa Monica.

Rick Miller, superintendent of Riverside Unified, said he could not speak to the district's use of settlements. Miller, who joined the district in 2009, after Walker was hired, said he was not aware of the district's special education practices being different from others in the state. He added that in any kind of settlement, not just in special education, "nobody is compelled to sign anything."

In court documents, Riverside Unified said that the McGhees and Ghadiri-Asli had "considered its (the agreement's) effect" and that the settlements were "fair and enforceable."

The parents say they did not know what they were getting into when they signed.

Although the McGhees were allowed a week to review the settlement's terms, Krista McGhee said they could not afford an attorney. In the meantime, if they kept their son home, he could be considered truant and they could face steep fines, she said. If they did not sign, their son would have to return to a classroom they believed was unsafe.

Ghadiri-Asli said she was offered just a few hours to review her two-page settlement. She wanted the district to retain her daughter, who has severe language, visual and social behavior impairments, in sixth grade; the district disagreed. Officials gave her until 5 p.m. that day to sign a settlement that would keep her daughter in sixth grade but required she waive several rights for the remainder of the school year, she said.

"You don't have anybody to talk with, and you have this paper that says 'sixth grade' – and that's what I want," Ghadiri-Asli

Ghadiri-Asli, whose native language is Farsi, said the document was difficult for her to understand. Before changes are made to a child's special education plan, districts are required by the federal Individuals with Disabilities Education Act, or IDEA, to provide prior notice and other information to parents in their native language. But Riverside Unified did not do so, Ghadiri-Asli said.

The lawsuits ask the court to award the parents' children compensatory education and services, damages, legal fees, and costs.

McGunigle also wants the lawsuits to bring about a policy change at Riverside Unified, so that parents know when they are entering into a settlement negotiation and that the terms of such agreements are clear and explicit.

Making sure parents are informed when they sign special education settlements is "just common sense," said S. James Rosenfeld, director of the Academy for IDEA Administrative Law Judges and Hearing Officers and of the Seattle University School of Law's education law programs.

"The question is, what do you have to do to assure they have to know? That raises questions about the right to legal assistance," he said. "Most families with special education problems do not have the resources to hire an attorney."

The trend toward settling special education disputes began several years ago, after two U.S. Supreme Court rulings, Rosenfeld said.

In 2005, the court ruled that the onus is on parents who disagree with a district's special education plan for their child to prove that the plan would not provide the "appropriate" education guaranteed by federal law. A year later, the court said parents who prevail in special education disputes cannot recover fees paid for expert witnesses, whom Rosenfeld said "you simply cannot win these cases without."

A formal negotiated settlement typically comes after an administrative hearing has been requested or held, or possibly as the result of mediation, Rosenfeld said. To regularly employ formal settlements at an early stage of a dispute "sounds pretty fishy," he said.

While settlements often state that prior claims are resolved, requiring parents to waive future claims against a school district, as Riverside Unified did, is concerning, said Julie Waterstone, director of the Children's Rights Clinic and an associate clinical professor of law at Southwestern Law School.

"Kids change, their needs could change, so if you're saying, 'I'm never going to raise an issue again,' you're essentially precluding them from participating in the team process," she said.

That process, Waterstone said, tends to work best "for the more sophisticated and savvy parents who are very familiar with the education system. It works for parents who have the ability to hire lawyers. It works less well for monolingual Spanish speakers and parents with limited resources."

Rosenfeld is now developing an arbitration system for special education disputes that he said would "eliminate the advantage schools have of having an attorney and parents don't." He said it would also be cheaper and faster than due process or mediation. He'd like the outcome of arbitration – which could include waiving certain rights – to be binding for the remainder of a school year.

"Assuming for the parents this is a knowledgeable waiver, fully informed," Rosenfeld said, "why shouldn't they be able to do it for a year?"

Sunday, December 18, 2011

British Paralympian superstar Tanni Grey-Thompson says Paralympics would "disappear off the face of the earth" if merger with Olympic Games takes place

From BBC Sport:

Baroness Tanni Grey-Thompson (pictured) says the Paralympics would "disappear off the face of the earth" if a merger with the Olympic Games took place.

A recent survey suggested only 18% of those asked plan to watch all or most events at the 2012 London Paralympics.

Grey-Thompson said if the Games were merged "a few Paralympic events would be picked up and put in the Olympics".

She added: "That way we wouldn't have an opportunity to showcase the vast majority of sports like we do now."

The survey questioned 386 disabled people in Britain and 111 parents and eight carers of disabled people. It was released two weeks ago by the charity Scope and also found less than a third plan to watch all or most of the Paralympics.

Grey-Thompson, Britain's most successful Paralympian with 11 gold medals, added: "There is not a city in the world that could host a Games the size of the two combined.

"I'd rather invest time and effort in making sure that the Paralympics can be as parallel to the Olympics as possible."

The survey revealed that 61% of those polled saw the Games as an opportunity for disabled people, just 23% said they were excited, while one in five thought the Games made disabled people seem second class.

Despite the results of the survey, 16 of the 20 sports for the 2012 Paralympics, have already sold out.

The British Paralympic Association said that showed a big public appetite for Paralympic sport.

The Paralympics run from 29 August to 9 September next year in London and feature around 4,200 athletes in 20 sports, including South Africa's Oscar Pistorius and Britain's David Weir.

'Rock Band'-style game developed for blind people

From msnbc:

The rhythm game revolution has largely ignored a significant segment of the population — blind people. If you have vision problems, you are unable to follow the titles' on-screen prompts. The creators of "Rock Vibe" (pictured) are trying to fix that by developing a "Rock Band"-style game that can be played by blind and sighted people alike.

In addition to an on-screen stream of notes, "Rock Vibe" tells players which guitar buttons or drum panels to hit by sending timed vibrations to specially designed, wearable equipment. The game is built on top of a free PC rhythm game called "Frets on Fire," and is not affiliated with the official, Harmonix-developed "Rock Band" available on consoles.

First created by three University of California, Santa Cruz researchers in 2008, "Rock Vibe" has since been featured in a number of computer accessibility conferences and journals. But now the developers are looking to raise money through Kickstarter to help develop a more professional, commercial version of the game.

That effort has already drawn over $12,000 in donations, though the developers are looking for at least $20,000 more by Jan. 20 to help fund research and development, testing and promotional travel, as well as to provide free games to schools and centers for the blind. Those who contribute can receive copies of the finished game and even personalized features, depending on how much they donate.

"Rock Vibe" isn't the first game designed for sightless play — there's a long tradition of audio games meant to be played without any visual input, and coders have made blind-accessible conversions of traditional games ranging from pinball to first-person shooters.

But the earlier titles have largely failed to keep up with the latest advances in gaming, the "Rock Vibe" creators say, and are often too simple to keep the interest of sighted players who may want to play, too.

Saturday, December 17, 2011

Warner Bros. buys film rights to Indiana mother's memoir about her autistic son's journey to become math genius, 12-year-old university student

From Variety. (Here's a story about Jacob Barnett from March 2011).

Warner Bros. has acquired feature film rights to Kristine Barnett's upcoming memoir, tentatively titled "Scattered Skills," in a pre-emptive deal.

Book will tell the story of a mother and her 12-year-old son, Jacob, (pictured) and his journey from autism to genius.

The son's first few years were spent in silence but then he took a liking to math and was able to recite the mathematical constant pi out to 70 digits at age 3. He began attending university classes in Indiana at age 8 and has a math IQ that has been measured at 170.

Deals for the book and film were based on a 74-page proposal.

Courtenay Valenti will oversee the project for the studio.

The book deal was negotiated by Susan Kamil, senior VP, publisher and editor in chief of Random House. The memoir is set to be one of the publishing house's major titles for 2013 and foreign rights have already been sold in 18 territories.

UTA negotiated on behalf of Barnett and her publishing agent Laurie Bernstein of Side by Side Literary Prods.

As Greece slashes costs, deaf people, disabled people left unaided

From The AP:

ATHENS, Greece — Evanthia Plakoura’s life recently became a lot more complicated.

Conversations with her boss switched to email only. Visits to the doctor require additional planning. She feels helpless in Greece’s bureaucratic labyrinth.

“It’s like someone flicked a switch and turned off your voice,” said Plakoura, a deaf woman who works at the Education Ministry.

Plakoura joined some 2,000 disabled demonstrators at a rally in central Athens this week to protest sweeping benefit cuts imposed in Greece’s economic crisis that have deprived her of sign-language translation.

In August, a five-year-old program providing deaf people with interpreters was suspended after the government abruptly cut its funding to less than half. Overnight, 15,000 deaf people around Greece were left without help to report a crime to the police, rent a house or go to a job interview.

Funding cuts have opened up gaps across welfare services, with slashed services and longer waiting times for vulnerable groups including the blind, recovering organ-transplant patients, autistic children, and paraplegics in need of physiotherapy.

“This program is very important to us. It’s our bridge to the outside world and it’s vital for our education,” Plakoura said in sign language, her speech relayed by one of the very translators whose help is being cut off.

“People have gone back to writing things down, or taking a relative, but it’s not the same thing,” she said. “It makes things very difficult for us, and especially for elderly deaf people.”

The axed program is the latest casualty of Greece’s draconian austerity measures that have battered social services as demand for help by the recession-hit public increases.

Independent welfare programs that rely on grants from the state offer a tempting target to a government fighting the threat of bankruptcy. Unlike state-run programs, which enjoy strong legal protections, the government can simply turn off the money taps.

As a result, independent programs to assist the disabled, the elderly, psychiatric patients and recovering drug users have all suffered steep cuts, occasionally with dramatic consequences.

An alarming rise in HIV infections in 2011 has been blamed in part on problems with needle exchange programs for drug users. Between January and October this year, 190 new infections of the deadly virus were reported among intravenous drug users, compared with 14 in the first 10 months in 2010, according to the Health Ministry.

Groups representing the disabled and other vulnerable Greeks have held several demonstrations outside the Finance Ministry, on Athens’ main Syntagma Square, but getting attention is difficult in a city where between four and five protests are held every day.

At his suburban headquarters, Costas Gargalis, who heads the National Association of the Deaf in Greece, is struggling to keep his 60-member network of interpreters together, hoping to restart the program sometime next year.

“Since the program was suspended, it’s been really chaotic,” he said. “Some people can pay for interpreters on occasion, but others have simply postponed their tasks forever.”

Gargalis, who is deaf, spends his working day in hectic silence: swiftly thumbing text messages on his cell phone, poring over fax requests from around Greece, and making video calls over the Internet.

His interpreters program started with an annual state grant of euro250,000 ($333,200) in 2006; that was steadily reduced to euro180,000 ($240,000) this year, before being suddenly slashed to euro80,000 ($106,600) in August.

"We were immediately over-budget and had to suspend the program. And even then, interpreters were left unpaid for two months of work," said Gargalis.

At previous funding levels, deaf people were offered 25 hours a year with interpreters. If the program is restarted next year, they will receive no more than 10 hours, Gargalis said.

"The amount of money we are asking for is laughable," he said, speaking through an interpreter. "This is a matter of survival for us."

Interpreters for the deaf need six years of training to get their license, and are paid below-minimum wage to crisscross Greek cities daily and provide help communicating.

"People generally become interpreters because they are interested in the subject," registered interpreter Costas Christodoulakos said.

"Now they are obliged to look for other work and take on other commitments, often unrelated to their interpreting jobs," he said. "What else can they do?"

Greece's debt-shackled economy has been kept alive by international rescue loans for the past 19 months, and creditors are pressing for more aggressive spending cuts, as the Socialist government continues to miss deficit-cutting targets and heads into a fourth year of recession in 2012.

Finance Minister Evangelos Venizelos promised this week to submit protesters' demands to the country's new prime minister, and invite disabled groups to join negotiations on a major new tax code due to take effect next year.

Health care is facing major cuts this year -- down from euro7 billion originally planned to euro5.6 billion ($9.4 billion to $7.5 billion), excluding state insurance subsidies.

Since the debt crisis started in late 2009, store closures have exceeded 20 percent in some commercial parts of Athens, while more than 275,000 people have lost their jobs nationwide, the vast majority in the private sector, pushing the unemployment rate to more than 16 percent.

"The unemployment rate among disabled people is normally more than double the national average ... so there is an urgent need for disabled people to be protected (from the cuts)," Yiannis Vardakastanis, leader of the National Confederation of Disabled People, said in an interview.

"The effects of the initial (government spending) cuts were not immediately obvious. But the cuts being made now have brought parts of the care system to a state of near-collapse."

Friday, December 16, 2011

Disabled Western Michigan University student DJ's, paints murals, finishes college using mouth stick

From The Kalamazoo Gazette:

KALAMAZOO, Mich. — Rynita McGuire (pictured) puts a new spin on the word “mouthy” as she mixes turntables and paints murals.

The 34-year-old, Kalamazoo-native completed a college degree entirely with her lips and teeth. She will receive her bachelor’s degree in painting from Western Michigan University on Saturday and every piece of art she’s created — whether it be on canvas, in headphones or on a computer screen — was made with her mouth.

McGuire was born with arthrogryposis, a condition that affects the tendons resulting in underdeveloped muscles, and has used a wheelchair for essentially her entire life. She orders straw-like devices called mouth sticks online for about $70 a pop and uses them to DJ and make graphic designs.

“I’m not paralyzed. I can use my hands but I have much more control with my mouth,” she said. “I lived my life like this. It’s not hard. If you push yourself all the time, things become natural.”

She said she has been using her mouth to do most things since she was a kid, so it was a no-brainer for her to grab a wooden spoon the first time she encountered DJ-mixing tables about a decade ago. Six months later, she was invited to perform at the Detroit Electronic Music Festival in 2002 and would continue to tour the country under the name DJ Short-e. She was one of three female artists asked to perform at the electronic music event, which is a male-dominated field, according to McGuire.

McGuire fell in love with art when she picked up a crayon, but didn’t seriously pursue it until college. She attended classes for graphic design and painting on and off at Kalamazoo Valley Community College but she wanted to get her bachelor’s degree. In 2009, she chose to focus on school at WMU because being a student and a traveling DJ was hard to multi-task.

“I think painting with my mouth was harder than learning to DJ,” she said. “Finishing school on my own was really intense. I didn’t think I was going make it a few times. Western can be a big scary place, even for me, and I’m not intimidated by a lot. I’m really proud I made it.”

McGuire’s independence is innate, according to her mother, Elizabeth Schmidt, of Kalamazoo.

“She doesn’t feel like she is handicapped. It’s the people who are doing nothing and have use of their arms who are handicapped,” Schmidt said. “She is able to pick herself up and keep going despite some really hard obstacles and it’s not like anything has been given to her. She’s done it on her own, even school.”

McGuire receives some state funding for her disability and was eligible for student services, but said it was more efficient to do her homework alone. She’s a project manager, has worked for WMU’s RSO Designs throughout college and lives on her own with two dogs.

McGuire suspects being older than her peers and in a wheelchair kept many of her classmates from getting to know her, but the fight to be acknowledged for her talents rather than disabilities is not a new one.

“Getting people to understand that I can do anything they can do and not to treat me like a kid is the challenge,” she said. “A lot of people treated me like I was a project. New people sometimes talk to me with high-pitch, slow voices or they ask my friends questions about me, but I don’t sit around and feel sorry for myself.”

She said she refused to DJ live until she spent thousands of hours practicing.

“I didn’t want people to think I was good for a girl in a wheelchair, I wanted people to think I was good.”

Even though she started drawing pictures and mixing cassettes for friends at 6 years old, she ignored encouragement to pursue art as a career until she attended college.

“I started out as a psychology major at WMU because I wanted people to take me seriously intellectually,” McGuire said. “I was dismissing a talent I had because I wanted to prove something.”

She’s since realized she can be taken seriously as a painter and musician because she is both of those.

After her educational sabbatical, DJ Short-E returned to the stage at Old Dog Tavern last month. It was the first time any of her peers heard her perform. Within minutes, the dance floor was filled as DJ Short-e pumped her neck to spit out beats.

McGuire is working to gather local painters and DJs in February for a graduation thesis paint show and is already booking shows in Michigan.

She hopes to either find a job teaching art or start her own graphic design firm in Kalamazoo.

“She’s inspired a lot of people and she has a long way to go; she’s young,” said Schmidt.