Mind's Museum explores inside view of mental illness

From The New York Times Oct. 28:

ROME — The logo of the Mind’s Museum is an overturned funnel. It is a reference to a 15th-century painting by Hieronymus Bosch that depicts a doctor using a scalpel to extract an object (the supposed “stone of madness”) from the skull of a patient. The doctor is wearing a funnel as a hat.

“It’s one of the earliest icons of madness,” said Pompeo Martelli, the psychiatrist turned director of this unusual museum, which is in the former psychiatric hospital of Santa Maria della Pietà on the northwestern outskirts of Rome. (In its earlier days “there was an out of sight, out of mind mentality,” he said.) The painting, now in the Prado Museum in Madrid, invites the obvious question of who is more mad, the doctor or the hapless patient.

The Santa Maria hospital was closed in 1978 after the passage of an Italian law substituting community services for institutionalized care of many of the mentally ill.

Overturning preconceptions about mental illness is the leitmotif of the eight-year-old Mind’s Museum (museodellamente.it), which reopened this month after a high-tech overhaul by Studio Azzurro, a Milan-based art collective that works mostly with interactive and video environments.

“The idea was to make it extremely participatory, a museum that can register and note the impressions of the visitor,” said Paolo Rosa, who founded Studio Azzurro with two other artists in 1982. “It’s not a static but a dynamic project, in continuous flux.”

In one interactive installation, next to a painted sign that reads, “Up close, no one is normal,” visitors try to synchronize recorded and mirror images of themselves. “It’s about seeking a balance between what you are and what you see,” Dr. Martelli said.

In another, visitors sit for a photograph that is projected onto a board along with photos of past patients at the institution, who recount their life stories in sad, lilting taped monologues.

In yet another, visitors are invited to sit at a desk and hold their hands over their ears to hear the singsong whispers of unseen voices. “That’s one of the symptoms of madness, isn’t it?” Dr. Martelli said, smiling.

Explaining the concept, Mr. Rosa of Studio Azzurro said: “The spectator assumes madness and unconsciously adopts the guise of someone on the inside. We didn’t want to dramatize but to include drama, and to let loose the imaginative dimension that madness elicits, which can be fertile even for those who think themselves as sane.”

The Mind’s Museum is a more hands-on — and heads-on — experience than other European psychiatric museums like the Dr. Guislain Museum in Ghent, Belgium, or the Het Dolhuys Museum in Haarlem, the Netherlands.

Unlike some directors and curators in this museum field, Dr. Martelli was not interested in examining the role that art can play in treating mental illness. There is no collection of patient paintings like that of the Prinzhorn collection of the Psychiatric University Hospital in Heidelberg, Germany, for example. (Still, the artwork of two inmates and that of a doctor is included in two installations.)

“It’s nice — it’s a way of lightening everything that happened in here,” said Maria Morena, a former psychiatric nurse at the hospital who can remember a time when patients lived 60 to a pavilion, eating with spoons (nothing sharp) and sleeping on cotton sheets so stiff that “they scratched like sandpaper.”

The museum is on the main floor of Pavilion 6 of the former psychiatric complex, which today also houses national health system offices.

“Our mission is linked to public health, but we’re somewhat atypical,” said Dr. Martelli, whose mandate includes preserving more than 250,000 case histories of patients who were treated there since around 1850. “We are preserving and protecting that patrimony.”

It is the largest historical psychiatric archive in Italy, Dr. Martelli said. Using software developed by his staff, other Italian psychiatric archives have been following his lead, and a resulting network will provide researchers with a database that tracks past psychiatric trends and tendencies in Italy.

Yet the museum’s target audience is not scholars or specialists, but rather high school and middle school students, which explains its embrace of Studio Azzurro’s high-tech interactive approach. (At the end of the day, it takes museum workers about 10 minutes to go through the dozen rooms and shut down all the computers and instruments.)

“Today it’s not enough to go into a classroom and hand out pamphlets about schizophrenia or anorexia,” Dr. Martelli said. “Young people are on another wavelength.”

Originally, the museum, which opened in 2000, followed a more traditional line, with objects and panel explanations. “It wasn’t that useful to opening a discourse” on the stigma of mental illness, Dr. Martelli said. But it was set up by a group of psychiatrists rather than curators or museum experts.

On a recent day Chiara Preti, a high school teacher who grew up nearby, toured the refitted museum as part of a training course with other colleagues. She said she found the experience useful.

“The point the museum makes is that mental illness is a disease,” she said. “It doesn’t give a moral or a political judgment.”

She recalled that in her childhood, her father would give spare change to former patients who hung around the grounds even after the hospital had shut down.

“It was a part of the city,” she said. “And with the museum, it’s kind of nice having its history be part of your life.”

New 21-year study to investigate children's health

From The New York Times:

After nearly a decade of planning, researchers will begin recruiting pregnant women in January for an ambitious nationwide study that will follow more than 100,000 children from before birth until age 21.

The goal of the federally financed project, the National Children’s Study, is to gain a better understanding of the effects of a wide array of factors on children’s health.

“What we are doing is bold and needs to be bold in order to answer some pressing questions,” said the study’s director, Dr. Peter C. Scheidt, a pediatrician on the staff of the child-health division of the National Institutes of Health.

Investigators hope to find explanations for the rising rates of premature births, childhood obesity, cancer, autism, endocrine disorders and behavioral problems. To that end, they will examine factors like genetics and child rearing, geography, exposure to chemicals, nutrition and pollution.

While few quarrel with the goal, some experts worry that the expansive project will take resources away from smaller and more focused perinatal and pediatric research, particularly when budgets are certain to be strained by the financial crisis. The total cost is estimated to be $2.7 billion.

Participating mothers and children (fathers will be encouraged but not required to take part) will be given periodic interviews and questionnaires. They will further be asked to submit samples of blood, urine and hair. Air, water and dust from their environments will also be sampled and tested.

“Something like this has never been done in this country,” said a principal investigator for the study, Dr. Philip J. Landrigan, professor and chairman of community and preventive medicine at Mount Sinai School of Medicine in Manhattan. “It’s past time for us to do this.”

Studies of comparable size and scope are under way in Britain, Denmark
and Norway. Conceived during the Clinton administration and authorized by the
Children’s Health Act of 2000, the National Children’s Study is being led by a group of federal agencies. Besides the health institutes, they are the Department
of Health and Human Services, the Centers for Disease Control and Prevention, the Environmental Protection Agency and the Department of Education.

Since 2000, more than 2,400 health care, environmental and technology professionals have met in panels for hundreds of hours to work out such details as sampling methodology, data collection and privacy protection.

Subjects will be chosen from 105 counties to achieve a representative mix of racial, ethnic, religious, social, cultural and geographic characteristics. Forty regional centers will administer the study — mostly well-known medical institutions like Mount Sinai, the University of North Carolina School of Medicine and the University of Texas Health Science Center-Houston.

Dr. Russ Hauser, a professor of environmental and occupational epidemiology at the Harvard School of Public Health who served on a National Academy of Sciences committee that reviewed the study’s design, said the study would be “worthy and feasible” as long as it was properly financed.

But other experts questioned whether it was worth the cost. “The question isn’t whether the goals can be accomplished,” said Dr. Arthur Reingold, professor of epidemiology at the School of Public Health at the University of California, Berkeley. “It’s more a question of is this the best use of almost $3 billion, particularly when it will inevitably take funding from other research, especially with the economy falling to pieces.”

Researchers involved in the study counter that it will more than pay for itself by leading researchers to the causes or contributing factors for so many childhood disorders. Dr. Landrigan said a “dress rehearsal” of the study, which began in 2001 with 1,500 subjects from New York and California, has already shown that pregnant women exposed to organophosphates in pesticides were more likely to have babies with small brains and impaired cognition.

Another concern is that the study’s advisory board — which is choosing the chemical exposures to be studied — includes scientists from 3M and Pfizer, who have apparent conflicts of interest.

But Richard Wiles, executive director of the nonprofit Environmental Working Group, said that since there were only 2 such scientists among the board’s 33 members, he hoped they would not have undue influence.

Adapted bar mitzvah gives disabled teen his ceremony

From The New York Times Long Island section:

CHAPPAQUA, N.Y. -- In the beginning, Brian and Jaclyn Rattner were focused on what their oldest child, Jarrett, could not do.

He could not talk, could not walk, did not play with toys, did not take to toilet training, missed most developmental milestones. Hoping for a diagnosis and cure, they took him to research centers at Harvard and Yale. Thinking it might be some rare genetic disorder like Tay-Sachs, which disproportionately affects Ashkenazi Jews, they had his blood shipped to Israel for analysis, and flew to England to meet with more specialists.

Ten years ago, at age 3, he was given a diagnosis of Angelman syndrome, which is characterized by mental delays, jerky body motions and a good deal of smiling and laughing — Jarrett has a sweet disposition. “But then they undiagnosed him,” Mr. Rattner said. “They didn’t know what it was, but it wasn’t that.”

And so the Rattners began focusing on who Jarrett was and what he could do. When he wanted a ball, he would pound his chest until he got it. “Sometimes, he wants to communicate so badly, you can hear him from the other room pounding his chest,” Mr. Rattner said. “There’s a lot of emotion there.”

He is good at making eye contact, and his mother noticed that if she asked what he wanted for lunch — turkey? tuna? chicken? — he would say yes by blinking his eyes and then holding them closed an extra second. “Figuring out his signs, it’s like watching a third-base coach,” said Mr. Rattner, who’s a lawyer.

“When you’re dealing with Jarrett, you’re dealing in current time,” he said. “You can’t say, ‘This is what we’re doing three days from now.’ You can’t discuss what you did a week ago. It’s an interesting way to live. We just dwell on each day right now. There’s a lot of pressure to make each day a great day.”

Jarrett has his passions. “He treats every meal like his last,” said Mr. Rattner. “He doesn’t understand more food is coming. He eats with gusto. If I’m eating something he wants, he’ll bang his chest. He always seems to want what I’m eating.”

He won’t allow anything on his head — no hats, no headphones, no iPod earphones — but he loves music, and if he sees a musician, insists on touching the instrument to feel the vibration.

Living in the now, he doesn’t hold grudges. As most children become teenagers, they distance themselves from their parents; Jarrett continues to love his unconditionally. “He’s thrilled to see me every morning,” Mr. Rattner said. “I turn on his light, he wakes up, he’s smiling. He reaches up to grab me around the neck with his left hand, pulls my face to him, and with his right hand, he sucks his thumb.”

After Jarrett, the Rattners said they took every genetic screening test available and have had three more children, making for an incredibly full life. But they’ve always tried to hold to a vow they made to Jarrett. “We promised our son at a young age, whatever it takes for him to have a happy and satisfied life, we will do,” Mr. Rattner said.

As Jarrett approached 13, they wondered, could he be bar mitzvahed? Should he be bar mitzvahed? Jarrett could not do the traditional haphtara reading; he couldn’t even place the cover back over the Torah on his own.

“We wanted to have some bar mitzvah — he deserved it,” said Mrs. Rattner, who stays home to care for the children. “We just wanted to be sure it was meaningful to Jarrett.”

The Rattners belonged to a Reform temple and consulted two Reform rabbis. “They were very nice,” said Mr. Rattner. “ ‘Whatever you want, you dream it, you do it, sky’s the limit.’ ”

“It’s not what we wanted to hear,” said Mr. Rattner. “We wanted to hear, ‘This is what we did before and what I can offer spiritually to Jarrett and those around him.’ We were trying to translate Jarrett to our family and friends.”

In 2006, the Chabad Lubavitch, Orthodox Hasidim, opened an education and mission center in nearby Armonk. Mr. Rattner consulted the rabbi there, Yosef Butman. “He explained that kids so handicapped are actually on a higher plane than you or I,” Mr. Rattner said. “We’re put on earth to perfect ourselves, and most of us have so much to do. But there’s not much they can do, they’re nearly complete. A couple of little tweaks and they’re ready to meet God.”

The Rattners are not religious. Two years ago, when Mr. Rattner was 42, he had open-heart surgery. “I spent two hours on a lung-heart machine. You do a lot of thinking.” An afterlife? “My feeling was you pass away and you’re gone,” Mr. Rattner said.

Still, he said, “it’s fascinating that someone as imperfect mentally as my son is, that he is considered to be way up there. That touched us. No one had ever said that about my son. You occasionally like to hear good things about your son.”

Living in this wealthy suburb, the Rattners have seen their share of $100,000 bar mitzvahs. “Vodka flowing from fountains, ice sculptures, caviar tables, crazy Broadway show themes,” Mr. Rattner said. “Our only theme was going to be Jarrett.”

Last Sunday, they squeezed 60 chairs onto their patio. Rabbi Butman explained that for the 10 minutes the Torah was opened, as is the Orthodox custom, men and women had to sit separately. But instead of putting a wall or curtain between them, he’d brought along a half dozen tasteful potted plants that he placed down the center aisle. Except for prayers, everything was in English. A Hasidic student read Jarrett’s haphtara. Eli Lipsker, a legendary Hasidic musician, played traditional Jewish songs on the electric organ.

Jarrett, the hater of hats, kept pulling off his prayer cap, but family and friends kept putting it back on. Jarrett’s two younger brothers, Jacob, 9, and Jordan, 7, spent most of the time running around the yard with their cousins, but Jarrett’s little sister, Julia, 3, sat in a baby carriage, attended by an aide; despite genetic screening, her parents say, she appears to have whatever Jarrett has.

The service was quick. Jarrett was wheeled to the Torah, helped by family to touch the Torah and, at the end, to cover the Torah. Rabbi Butman spoke of “a bar mitzvah where we get a chance to look at the big picture,” and Mr. Rattner mentioned “learning to accept Jarrett exactly as he is.”

Mostly, it was music and dancing. The men danced in a circle around Jarrett. At one point, Mr. Rattner hoisted his son from the wheelchair, held him up from behind, and the two swayed together to the Hasidic classics.

Afterward, they drove down the street to the Kittle House restaurant. There was no vodka from fountains, but there was a single-layer chocolate cake — Jarrett’s favorite — and lots of good food. The bar mitzvah boy tasted his first hot apple cider and drank with gusto.

Guests kept saying they’d never seen a bar mitzvah like it.

“When everyone started dancing around Jarrett, that’s when I felt a little emotional,” Mrs. Rattner said.

I saw you crying, Mom, you were crying!” yelled 7-year-old Jordan, and, laughing, he ran off to tell his cousins.

Oklahoma lacks needed specialists to help children with autism there

From NewsOK.com:

Oklahoma lacks enough therapists and behavioral specialists to take care of the state’s autistic children, according to the preliminary findings of a pilot program.

Thirty families selected to take part in the autism two-year pilot project each could spend up to $12,360 a year on services for their autistic child.

"What we discovered was there are so few providers of those services to these families that the spending on the behavior therapies was pretty small,” said Jim Nicholson, director of the developmental disabilities division of the state Department of Human Services. "There’s a lack of service providers that had that kind of specialty training.

"There aren’t enough, particularly, skilled behavioral practitioners,” he said.

Each family on average spent about $4,500 a year on services for their autistic child, he said. The pilot program is to expire at the end of next month, sooner than expected because DHS officials "learned what we had hoped from the pilot,” Nicholson said. "The pilot did its job, and two years was enough.”

It’s unknown how many autistic children are in the state. According to the national Centers for Disease Control and Prevention, one in every 150 children in the U.S. is diagnosed with autism. It is considered the fastest-growing developmental disability. Research indicates early intervention can help.

Deborah Decker of Norman, a parent whose family was chosen to take part in the study, said she is disappointed the program is ending.

"It just opened up a lot of avenues that we wouldn’t have had otherwise because it’s just so expensive,” said Decker, who developed a plan for her 6-year-old autistic son. "It was nice just to have that money to really do some intensive treatment with him.”
Parents in the program were told how the money could be spent and what services might be best for their child, Decker said. Each family drew up a budget on how the money would be spent.

Decker said her family spent about $7,000 a year and would have spent more had more services been available.

Most of the money her family spent was on applied behavioral analysis, which most insurance companies don’t cover, she said. Other expenses were for therapy for her son and occasional baby-sitting expenses.

She said she spent more than the program’s average because her family was able to hire applied behavioral analysis tutors from their public school district. Because of the applied behavior treatment, her son now can answer "yes” and "no” questions, she said.

Nicholson said the pilot program also looked at ways families with autistic children could support each other. But results showed parents were so exhausted from taking care of their own children they were too weary to take on the task of helping others, he said.

Of the 30 families selected to take part in the program, 15 were from the Oklahoma City area and 15 were from the Tulsa area.

Several parents who came to the state Capitol earlier this year to speak in favor of autism legislation said they pay thousands of dollars each month for treatment for their children, with some traveling out of state for help. In most cases insurance won’t cover all the fees.

Woman with disabilities at higher risk of abusive relationships

From Reuters Oct. 27:

NEW YORK -- A new study shows that women with a disability are far more likely to experience a physical assault by a spouse or other intimate partner than those without a disability.

Intimate partner violence is "an understudied issue in much need of attention," Dr. Brian Armor, who led the study, told Reuters Health. "We need to ensure that prevention initiatives designed to reduce intimate partner violence explicitly include the needs of adults with disabilities (e.g. ensuring shelters are accessible).

To estimate disability prevalence and differences in intimate partner abuse among women with and without a disability, Armor and his colleagues from the Centers for Disease Control and Prevention, Atlanta, analyzed data from the CDC's 2006 Behavioral Risk Factor Surveillance System -- a large annual telephone survey of Americans designed to monitor the prevalence of key health behaviors.

They found that women with a disability were significantly more likely than women without a disability to report experiencing some from of intimate partner violence in their lifetime (37.3 percent versus 20.6 percent).

Women with a disability were more likely to report ever being threatened with violence (28.5 percent vs 15.4 percent) and hit, slapped, pushed, kicked or physically hurt (30.6 percent vs. 15.7 percent) by an intimate partner.

Women with a disability were also much more apt to report a history of unwanted sex by an intimate partner (19.7 percent vs 8.2 percent).

"Future work is needed to get at why" this is so, said Armor, who reported the findings today at the American Public Health Association's annual meeting in San Diego.

"Perhaps, women with disabilities are vulnerable to intimate partner violence because their disability might limit mobility and prevent escape; shelters might not be available or accessible to women with disabilities; the disability might adversely affect communication and thus the ability to alert others or the perpetrator might control or restrict the victim's ability to alert others to the problem."

Fear is another possibility, Armor said. "That is, a catch-22, stemming from reliance on the perpetrator for caregiving needs that might go unmet or lead to some form of undesirable placement if they tell authorities."

He concluded, "Since intimate partner violence is a public help problem, we need to ensure that prevention strategies for people with disabilities are widely adopted."

Blind announcer gives Tampa Bay Rays' fans color commentary in Spanish

From The Associated Press Oct. 27:

Enrique Oliu (pictured) breathes baseball. The crack of the bat and the cheers of the crowd run through his veins.

He's also a human baseball encyclopedia, with an uncanny ability to make his listeners get a full feel for the game.

Oh, one other thing about the color analyst for the Tampa Bay Rays' Spanish radio broadcasts: He's blind.

"I always run into skeptical people, but I've never had any problem doing my job," Oliu said during the World Series between the Rays and Philadelphia. "I'm a smart guy, and I've always wanted to be a leader, to be an example."

"As my father used to tell me when I was a kid, 'You've got to decide if you want the band to play your music, or if you want to play someone else's music,'" the 45-year-old native of Nicaragua said.

Born blind, he was 10 when his parents sent him to the United States to attend the Florida School for the Deaf and the Blind in St. Augustine. Oliu quickly showed interest in sports and later majored in communications at the University of South Florida.

"I started knocking doors everywhere, trying to get a break. I covered for free a lot of stuff just to get into radio," he said.

His first job doing professional commentary was with a minor league affiliate of the Montreal Expos in 1989 in Jacksonville, Fla.

All his perseverance paid off in 1998 when Tampa Bay Devil Rays, about to make their debut in the major leagues, asked him to become the color analyst of the team.

Several hours before each game at Tropicana Field, Oliu starts his routine of interviewing players, coaches and colleagues to gather every possible piece of information and detail to help him in his broadcasts.

Oliu also fashions a mohawk haircut, the style of choice for these Rays.

At the booth of the radio station, Genesis 680 AM, he works alongside his wife, Debbie. She whispers to him statistical data and descriptions about the game.

"The rest is just intuition and instincts," he said. "You know I played this sport and bunch of others, adapted, but I played. Blind or not blind, I have an opinion and I just state mine. That's what people want."

Oliu and broadcast partner Ricardo Taveras do all 81 home games. When the Rays are on the road, as they were in Philadelphia this week, Oliu and Taveras do their broadcast from a studio at Tropicana Field off a television feed.

The one person who never stops marveling at Oliu's gift is Taveras, who has done play-by-play with him since 1999.

"You never stop learning with him. He has such an amazing memory. He hates being called blind," Taveras said.

"I mean, you could tell him something and he will remember it in a thousand years," he said. "That's his biggest virtue. That's has made him successful".

But what Taveras really considers remarkable is Oliu's "sixth sense" to guess plays ahead of time.

"I will never forget when there was a roller toward second base and he goes to make the description, 'roller to second, the second baseman fields it, throw to first and he's out," Taveras said. "I was shocked. I didn't know what to say. I told him, 'Hey Enrique, how do you know that?' Nobody was telling him anything.

"He just said that, 'I just heard the crack of the bat and I knew it that the ball was headed to second base.'"

No doubt that Oliu's crowning achievement is getting to work the World Series with the Rays. He mentions spring training trips to Mexico and Venezuela as his most rewarding experiences.

"As a blind person, it was something that gave me a lot of pride, to work in countries in which there are now laws to protect the rights of the handicapped," he said. "I was so proud of showing people that you can do it."

African countries face mental health crisis

The Daily Triumph in Nigeria reports that more than 75 percent of people with mental health problems in Nigeria do not have access to treatment or care. And The Independent in South Africa reports that country is facing "a mental illness 'nightmare.'"

The Independent story says:

South Africa is facing a mental illness "nightmare" that could have disastrous consequences if funds are not made available and drastic action taken, warn researchers and medical authorities.

The University of Cape Town's Mental Health and Poverty Project has just released a report on the state of mental health policy and service provision in South Africa, the first of its kind.

Solly Mokgata, director of the SA Federation for Mental Health, said: "It's one of the country's biggest nightmares. An increase in crime, an embattled economy, poverty and a high prevalence of HIV/Aids are contributing factors."

He said a major problem was a lack of services, as well as the fact that many conditions which could easily be treated were not.

"A recent Lancet study showed that it would cost only $2 (about R22) a person a year to treat people suffering from mental illness."

The Medical Research Council says neuropsychiatric conditions rank third in the burden of disease facing the country. But the report said there was growing recognition that mental health was a crucial public health and development issue in the country.

The SA Stress and Health survey found that 16,5 percent of South Africans had suffered from common mental disorders such as depression, anxiety and substance abuse disorders in the past year.

There were no differences between racial or ethnic groups in the prevalence of mental illness, although it was more likely among poor people and those suffering from social deprivation: poor people tended to have more mental health problems and people living with mental disorders tended to have lower levels of education, employment and income.

The Mental Health and Poverty Project report warned mental health was not at the forefront of policy development and implementation in the health, education, employment, social development or other key sectors, and there is little co-ordination of mental health across these sectors.

Furthermore, there was generally poor implementation of existing mental health policy and legislation at provincial and district level.

Professor Dan Stein, head of UCT's psychiatry and mental health department, said it as important to note that mental disorders were more disabling than most physical disorders because they were long-lasting and severe, but were less likely to be treated than physical disorders.

But he said: "It is much cheaper to treat mental disorders than not to."

According to the SA Depression and Anxiety Group, one in every five people will suffer from a mental illness at some point in their lives.

Spokesperson Cassey Amoore said every 24 hours in South Africa, 22 people commit suicide and 220 people attempt suicide; 9,5 percent of teen deaths are due to suicide. Yet there are only 284 psychiatrists to care for South Africa's 46 million people, and nearly half work in the private sector.

She said: "South Africa is a crime-riddled country - up to six million people may be suffering from post-traumatic stress disorder."

Compared with 14 other countries (including Germany, France, Nigeria and Mexico), South Africa has the second highest prevalence of substance abuse and the seventh highest of depression. Why does South Africa spend such a low percentage of its health budget on mental health?

Amoore said: "We know how difficult it is for patients with psychiatric illnesses to get the appropriate help."We are trying to raise awareness in government that mental health should get more attention - and more money."

The chief executive of the group, Elizabeth Matare, said that the Aids pandemic "is a huge issue".

Much funding was pumped into research and prevention programmes, but mental problems were largely forgotten.

"We forget that with a diagnosis of HIV and Aids comes depression, anxiety and trauma. People with HIV are 36 times more likely to commit suicide."

The Mental Health and Poverty Project report said mental health needs to be prioritised and there should be an improvement in the implementation of mental
health policy and legislation.

There should be adequate funds for mental health services in the provinces, particularly for community-based care.

A few consultants, doctors at center of numerous LIRR disability claims

From the intro to a story in The New York Times Oct. 27:

In the years before the investigators arrived, the Long Island office of the Railroad Retirement Board had been a beacon to employees of the Long Island Rail Road, offering the prospect of a comfortable retirement, complete with a pension and disability payments — all at an age when people in other industries were still working.

As word spread that disability payments were easy to get, L.I.R.R. workers trooped up to the office, hundreds at first and eventually thousands, all filing papers to begin the process of securing early retirement on disability.

Now, the retirement board’s Long Island office, in Westbury, is attracting attention for another reason: It is the epicenter of major state and federal investigations into the legitimacy of many of those disability awards.

Of particular interest to investigators is a small group of disability consultants and physicians who have helped the L.I.R.R. attain the dubious distinction of having the nation’s highest rate of disabled retirees even while it was earning awards for employee safety. The New York Times reported in September that nearly all of the railroad’s career employees retire early and file for disability.

One consultant, Marie T. Baran, ran the board’s Long Island office until she quit two years ago and began selling advice to rail workers on how to navigate the system of which she had been a part. Other disability advisers are prominent former union leaders, including one who once represented labor on the board of the L.I.R.R.’s parent agency, the Metropolitan Transportation Authority.

Government investigators are particularly interested in learning why L.I.R.R. retirees tend to use the same physicians, while citing the same ailments in numbers far out of line with other railroads. Investigators have issued dozens of subpoenas to consultants, doctors and retirees, among others.

None of the investigating agencies have accused the consultants or doctors of any wrongdoing. There are other explanations for the Long Island Rail Road’s high number of disability cases, including an unusual labor contract that allows many longtime workers to retire with a company pension as early as age 50. By combining that pension with tens of thousands of dollars in federal disability payments, retirees can draw about as much money as they did when they were working.

The federal retirement board, based in Chicago, also encourages disability applications by approving virtually every one it gets, regardless of where it comes from.

Even so, the L.I.R.R. stands apart.

For example, from 2001 through 2007, Metro-North Railroad, which serves commuters north of New York City, had 32 cases of disabling arthritis or rheumatism, compared with 753 at the L.I.R.R, which has a work force of similar size and composition.

British Paralympian to provide voice for wheelchair-using character in animated children's series

From the South Wales Echo:

Wales' most successful Paralympian is to make her animated TV debut – playing a wheelchair-bound cheetah who helps a rabbit left out of school sport.

In her first episode on children’s series Hana’s Helpline, Cardiff-born athlete Dame Tanni Grey-Thompson plays the part of Rita Cheetah, a champion wheelchair athlete who comes to the assistance of a disabled rabbit called Rhian.

The show, made by Butetown-based Calon TV, is based around an agony aunt duck called Hana. The episode, Record Breaking Rhian, will be broadcast on Five Milkshake at 6.30am on Friday. S4C is also screening the Welsh version Holi Hana.

Tanni, who retired from competitive sport last year after winning 11 Olympic gold medals and six London Marathons, said: “The way the programme handles the issue is perfect. The message is positive and it doesn’t patronise. And Ernie the eagle’s attitude that Rhian can’t do PE because she’s in a wheelchair is also common.”

Since it was first launched in April 2007, Hana’s Helpline has been watched by more than 3.4 million viewers and has won two major animation awards.

Renee Zellweger plays wheelchair user in new film

The Daily Mail in the UK reports that Renee Zellweger and Forrest Whitaker (pictured) are currently filming "My Own Love Song," in which she plays a former singer who is a wheelchair user.

The Movie Planet blog reports that the Oscar-winning Zellweger joined the cast in September after Sharon Stone left the project.

The Daily Mail says:

Renee plays Jane, a wheelchair bound singer, in new film My Own Love Song, who befriends character Joey (Whitaker).

The independent drama is being filmed by writer/director Oliver Dahan of La Vie En Rose fame. The story centres on a road trip to Memphis undertaken by a wheelchair-bound former singer, Renee, and her friend Joey, played by Whitaker.

Both have faced tragedy in their lives, and during their journey their friendship grows with each becoming the other's main source of support.

Filming is taking place in Kansas and New Orleans.

Kentucky courthouse has wheelchair access problems

From the Lexington, Ky., Herald-Leader on the WKYT-TV Web site:

CYNTHIANA, Ky. — People with disabilities find it more difficult to enter the Harrison County courthouse and need the assistance of a guard to enter, reports the Lexington Herald-Leader in its Sunday edition.

Sandy Sageser moved into her new home a year ago, but she didn't update the address on her driver's license because she couldn't get to the circuit court clerk's office in the Harrison County Justice Center. Severe back and kidney problems force Sageser to use a wheelchair or walker to get around, the Herald Leader reports.

Unfortunately for her, the $6 million Justice Center, which opened in 2002 as part of Kentucky's ambitious courts expansion, has just one public door. There are 11 steps in front of it and no wheelchair ramp.

Instead of a ramp, the Kentucky Administrative Office of the Courts installed a mechanical wheelchair lift. But the lift frequently is broken. When it does work, it's operated by a guard who must be summoned by a buzzer, reports the Herald-Leader.

Sometimes there is only one guard on duty at the entrance. If so, he either needs to call for another guard to come and help the disabled person, or he has to lock down the entrance while he operates the lift.

As the minutes pass, Sageser said, disabled people are expected to wait patiently outside on the sidewalk, exposed to the weather, the newspaper reports.

"How are they getting away with this? Isn't there a law?" Sageser asked. "Prisoners get treated better at this courthouse than we do. At least the prisoners can get in."

There is a law — the Americans with Disabilities Act, or ADA — that says disabled people should be able to enter public facilities under their own power, reports the newspaper.

But as Harrison County shows, the law is not always followed in Kentucky courthouses, even as the AOC has allocated $880 million to build 65 justice centers around the state. Nobody seems to know how widespread accessibility problems are.

AOC spokeswoman Jamie Ball said the courts agency can only document and
address accessibility problems that citizens bring to its attention. This year, that has included complaints about inoperable automatic doors in the Jefferson and Lee county courthouses, Ball told the Herald-Leader.

The AOC did not know about the Harrison County Justice Center until the Herald-Leader inquired about it, she told the Lexington Herald-Leader.

Several people with disabilities running for elected office in NJ

The Jewish Times reports that Dennis Shulman, (pictured) a blind rabbi, is running for the House of Representatives in New Jersey's 5th Congressional District. The Jewish Times reports that if Shulman wins he will not only be "the first blind person in nearly 70 years to serve in the U.S. Congress, but also the first rabbi."

And The Star-Ledger reports that wheelchair user Cynthia DeSouza is one of six female candidates running for Newark City Council. The women are running to replace the first woman on the Newark City Council, Dana Rone, whose district covers the Central Ward. The Star-Ledger says it "is considered one of the most critical sections of the city because of the myriad of social problems that continue to plague it and the neighborhoods that are in the process of redevelopment. "

If DeSouza wins, she would be the first wheelchair user to be elected to the council. DeSouza is also the 2008 Ms. Wheelchair New Jersey.

AAPD presses Florida to allow federal inspection of voter accessibility

From an AAPD press release:

WASHINGTON, DC – Oct. 21, 2008 – The American Association of People with Disabilities (AAPD), the largest cross-disability membership organization in the U.S., is calling upon Florida Secretary of State Kurt Browning and Gov. Charlie Crist to allow federal inspectors into polling places in four counties to survey voting accessibility on Election Day.

Florida is the only state - of 30 in the country picked to participate in the survey - that refuses to let the federal inspectors into polling places on Election Day. Miami-Dade, Broward, Hillsborough and Pinellas counties are the four counties selected by the U.S. Government Accountability Office, which is conducting the survey, but Browning has said inspectors would not be allowed in to check equipment and document polling place accessibility.

“In a state with such a high senior citizen population and high population of people with disabilities, it’s outrageous that the Secretary of State refuses to let people in to measure accessibility. What’s he got to hide?” said Jim Dickson, Vice President for Government Affairs at AAPD.

AAPD, which helped organize the effort to initiate the survey as part of a broad coalition, sees the survey as necessary to collect data that will in turn help the nation come up with good voting practices, Dickson said.

The survey has three objectives: to measure the wheelchair accessibility of polling places and compare those results to a similar survey done in 2000; to get objective data on voting machine accessibility and the training of poll workers on those machines; and to make sure proper procedures are in place for assisting senior citizens and people with intellectual disabilities if they need assistance voting.

AAPD also commends Sen. Dianne Feinstein (D-CA); Sen. Bob Bennett (R-UT); Sen. Gordon Smith (R-OR) and Sen. Herb Kohl (D-WI) )for initiating the survey, as well as Sen. Bill Nelson (D-FL), who called on Gov. Charlie Crist in an Oct. 17 letter to allow inspectors into polling places.

Vietnam villagers wonder why their children have high incidence of disability

From Thanh Nien Daily in Ho Chi Minh City, Vietnam:

Parents in Ho Do Commune say their children are born normal, but soon show signs of developmental disabilities.

Thirty-eight of the small commune’s children are said to be mentally challenged or physically disabled. Some can’t memorize the alphabet, others exhibit behavioral problems, according to local residents.

“I can’t understand. My two grandsons are growing in physical size but not in intelligence,” said Thi, an elderly woman in the commune of 6,000.

“The boys, 13 and 11 years old, know nothing and can’t spell a single word, even though they’re supposed to be in 6th grade.”

The woman said her two younger daughters are growing normally. “I hope God will not maltreat the little girls,” Thi said.

Ho Do is in the central province of Ha Tinh, an area sprayed heavily with Agent Orange, a dioxin-heavy defoliant used by the US military during the Vietnam War.

Nearby Thi’s house is the small house of Nguyen Thi Luong, whose two sons suffer from similar conditions (pictured).

She had the boys with two different husbands but they shared the same fate, she said.

“My son rushes to class with his schoolbag everyday but he can only sit still for a few minutes, then he leaves,” Luong said of her older boy.

“He catches crabs and snakes and releases them in class to scare his classmates.

“Now I’m healthy and can work and take care of them. I don’t know what will happen when I pass away and they are left alone.”

Besides mental defects, some children have disfigured hands and legs. Others are have large heads and crooked limbs. Many can’t walk. Such symptoms are often linked to dioxin-poisoning.

So far, only one of the 38 mentally-challenged and disabled children has been officially acknowledged as a victim of Agent Orange.

Nguyen Thi Xuan Hoa, vice administrator of the commune’s primary school, said she was worried about the abnormal situation.

“This commune has 38 disabled children but only 14 of them can go to school. They go only for fun and to socialize,” she said.

She added that the mentally-challenged children cannot study alongside their peers who are quicker to learn. But she said the commune had no money to build a special school.

Baseball player wins award for work with young adults with Down syndrome

From The Houston Chronicle's World Series Notes:

Albert Pujols of the St. Louis Cardinals received the 2008 Roberto Clemente Award, given annually to the player that excels on the field and in community service.

“It doesn’t matter what you do on the field, it’s what you do off the field and the lives you touch,” he said. “It takes a lot of hard work, but it comes from the heart.”

Each major league team nominates one player. The winner is chosen from a committee that includes Vera Clemente, Roberto’s widow.

The Pujols Family Foundation assists young adults with Down syndrome. His interest began with the birth of a daughter with Down syndrome. He also works with the Boys & Girls Club of America and the Ronald McDonald House.

Previous Clemente Award winners include Hall of Famers Ozzie Smith, Cal Ripken and Tony Gwynn. Craig Biggio won the award last year.