From John O'Neil of The New York Times Locals' Blog
Last spring, I invaded these columns to tell about a local autism awareness music project, SingSOS!, that had been invited to perform at the United Nations. That was a high point on a long and winding road that has now led — at last! — to the release of the “Songs of the Spectrum” album in time for the holidays.
The album features original songs about autism, featuring performances by artists like Jackson Browne, Dar Williams, Marshall Crenshaw and other top names. The music is packaged with a shelf’s worth of handpicked autism resources, including excerpts from books by leaders in the field, all in electronic form.
Wednesday, November 25, 2009
Learning His Body, Learning to Dance
NEW YORK -- Gregg Mozgala, a 31-year-old actor with cerebral palsy, had 12 years of physical therapy while he was growing up. But in the last eight months, a determined choreographer with an unconventional résumé has done what all those therapists could not: She has dramatically changed the way Mr. Mozgala walks.
Mr. Mozgala and the choreographer, Tamar Rogoff, have been working since last winter on a dance piece called “Diagnosis of a Faun.” It is to have its premiere on Dec. 3 at La MaMa Annex in the East Village, but the more important work of art may be what Ms. Rogoff has done to transform Mr. Mozgala’s body.
Tuesday, November 24, 2009
New Yorkers Protest Proposed Cuts
ALBANY, N.Y. -- Dozens of New Yorkers with developmental disabilities and their advocates gathered outside of Gov. David A. Paterson's office last week to protest proposed cuts to the Office of Mental Retardation and Developmental Disabilities funding.
Attending the protest was Assemblyman Greg Ball, R–Patterson, who has publicly opposed the governor's deficit reduction plan, which would cut funding to OMRDD programs by 10 percent.
"We all know things are tighter than ever, and the state should step up and do its part. However, pick-pocketing the disabled to fill a budget gap is not the answer," said Ball. "This measure, if accepted, would endanger the health and safety of our extremely vulnerable population and destroy the quality of care for the neediest among us."
The assemblyman said a cut in state OMRDD funding would result in the loss of matching federal Medicaid funds as well.
Runaway Spends 11 Days in NYC Subways
When will the police realize that when a person with a developmental disability is missing, it can't be treated as just another missing person.
Day after day, night after night, Francisco Hernandez Jr. rode the subway. He had a MetroCard, $10 in his pocket and a book bag on his lap. As the human tide flowed and ebbed around him, he sat impassively, a gangly 13-year-old boy in glasses and a red hoodie, speaking to no one.
After getting in trouble in class in Bensonhurst, Brooklyn, and fearing another scolding at home, he had sought refuge in the subway system. He removed the battery from his cellphone. “I didn’t want anyone to scream at me,” he said.
All told, Francisco disappeared for 11 days last month. Since Oct. 26, when a transit police officer found him in a Coney Island subway station, no one has been able to fully explain how a boy could vanish for so long in a busy train system dotted with surveillance cameras and fliers bearing his photograph.
But this was not a typical missing-person search. Francisco has Asperger’s syndrome, a form of autism that often causes difficulty with social interaction, and can lead to seemingly eccentric behavior and isolation. His parents are Mexican immigrants, who say they felt the police were slow to make the case a priority.
Day after day, night after night, Francisco Hernandez Jr. rode the subway. He had a MetroCard, $10 in his pocket and a book bag on his lap. As the human tide flowed and ebbed around him, he sat impassively, a gangly 13-year-old boy in glasses and a red hoodie, speaking to no one.
After getting in trouble in class in Bensonhurst, Brooklyn, and fearing another scolding at home, he had sought refuge in the subway system. He removed the battery from his cellphone. “I didn’t want anyone to scream at me,” he said.
All told, Francisco disappeared for 11 days last month. Since Oct. 26, when a transit police officer found him in a Coney Island subway station, no one has been able to fully explain how a boy could vanish for so long in a busy train system dotted with surveillance cameras and fliers bearing his photograph.
But this was not a typical missing-person search. Francisco has Asperger’s syndrome, a form of autism that often causes difficulty with social interaction, and can lead to seemingly eccentric behavior and isolation. His parents are Mexican immigrants, who say they felt the police were slow to make the case a priority.
Monday, November 23, 2009
Researchers Warn Against Misusing Report
Dr. Carlos Pardo was trying to head off trouble.
The Johns Hopkins neurologist and his colleagues had autopsied the brains of people with autism who died in accidents and found evidence of neuroinflammation. This rare look inside the autistic brain had the potential to increase understanding of the mysterious disorder.
It also, he knew, could inspire doctors aiming to help children recover from autism to develop new experimental treatments -- even though the research was so preliminary the scientists did not know whether the inflammation was good or bad, or even how it might relate to autism.
So when Pardo and his colleagues published their paper in the Annals of Neurology in 2005, they added an online primer that clearly explained their findings in layman's terms and sternly warned doctors not to use them to develop treatments.
Over and over, doctors in the autism recovery movement have used the paper to justify experimental treatments aimed at reducing neuroinflammation.
The Johns Hopkins neurologist and his colleagues had autopsied the brains of people with autism who died in accidents and found evidence of neuroinflammation. This rare look inside the autistic brain had the potential to increase understanding of the mysterious disorder.
It also, he knew, could inspire doctors aiming to help children recover from autism to develop new experimental treatments -- even though the research was so preliminary the scientists did not know whether the inflammation was good or bad, or even how it might relate to autism.
So when Pardo and his colleagues published their paper in the Annals of Neurology in 2005, they added an online primer that clearly explained their findings in layman's terms and sternly warned doctors not to use them to develop treatments.
Over and over, doctors in the autism recovery movement have used the paper to justify experimental treatments aimed at reducing neuroinflammation.
Supported Employments Makes Gains in Missouri
It may take a blend of public and private support, a dash or two of creativity, courage, and a little extra training to overcome obstacles, but supported employment for people with disabilities is beginning to gain ground in Missouri. According to the 2008 Missouri State Rehabilitation Council Report, the annual income of persons with disabilities who were assisted in obtaining community-based competitive employment increased by $46 million in 2008. And it's good for the economy as well -- every dollar spent in Missouri on supported employment returns $1.03 to taxpayers.
Friday, November 20, 2009
What's In a Name?
From The Los Angeles Times' health blog Booster Shots.
We health bloggers and reporters think about words a lot and care about using the right ones. So we were interested when we heard that a legislative proposal offered in the U.S. Senate recently would outlaw further use of the terms "mentally retarded" or "mental retardation" from federal statutes and policy papers in the area of health, education and labor.
We health bloggers and reporters think about words a lot and care about using the right ones. So we were interested when we heard that a legislative proposal offered in the U.S. Senate recently would outlaw further use of the terms "mentally retarded" or "mental retardation" from federal statutes and policy papers in the area of health, education and labor.
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