Media dis&dat
A database of news and information about people with disabilities and disability issues...
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Updated: 11 hours 19 min ago
Australian research: Young people who get little sleep more likely to become mentally ill
From The Age in Australia:
Young people who get very little sleep are much more likely to become mentally ill, Australian research shows.
Lack of sleep might help explain the puzzling increase in mental illness among young people over the past decades, said research leader Nicholas Glozier. He said late-night Internet use might be one reason young people were sleeping less.
The study of nearly 20,000 people aged 17-24 found those who slept less than five hours a night were three times more likely than normal sleepers to become psychologically distressed in the next year. Each hour of sleep lost was linked to a 14 per cent higher risk of distress.
''Sleep disturbance and in particular insomnia is a predictor of later development of depression and possibly anxiety,'' said Professor Glozier.
Less sleep was also associated with longer-term mental health problems, he said.
Professor Glozier, of the University of Sydney, believes lack of sleep can contribute to increasing rates of depression.
Sleep problems and mental illness could exacerbate each other. ''What we are seeing is young adults who tend to start off with anxiety and body clock problems, move on to problems like bipolar or major depression.''
Along with researchers from the Woolcock Institute and the Brain and Mind Research Institute, Professor Glozier is pioneering methods to change the body clocks of sleep-deprived people.
Patients are treated with light therapy in the mornings as well as hormones such as melatonin to help them sleep earlier.
Young people who get very little sleep are much more likely to become mentally ill, Australian research shows.
Lack of sleep might help explain the puzzling increase in mental illness among young people over the past decades, said research leader Nicholas Glozier. He said late-night Internet use might be one reason young people were sleeping less.
The study of nearly 20,000 people aged 17-24 found those who slept less than five hours a night were three times more likely than normal sleepers to become psychologically distressed in the next year. Each hour of sleep lost was linked to a 14 per cent higher risk of distress.
''Sleep disturbance and in particular insomnia is a predictor of later development of depression and possibly anxiety,'' said Professor Glozier.
Less sleep was also associated with longer-term mental health problems, he said.
Professor Glozier, of the University of Sydney, believes lack of sleep can contribute to increasing rates of depression.
Sleep problems and mental illness could exacerbate each other. ''What we are seeing is young adults who tend to start off with anxiety and body clock problems, move on to problems like bipolar or major depression.''
Along with researchers from the Woolcock Institute and the Brain and Mind Research Institute, Professor Glozier is pioneering methods to change the body clocks of sleep-deprived people.
Patients are treated with light therapy in the mornings as well as hormones such as melatonin to help them sleep earlier.
British survey: Disabled people socially excluded
From BBC News:
Nine out of 10 people in Britain have never had a disabled person in their house for a social occasion, claims a survey from a disability charity.
Scope says the survey shows that disabled people are socially excluded.
While the survey found widespread backing for equal opportunities, in practice few people have any personal dealings with people with disabilities.
The charity's chief executive, Richard Hawkes, says disabled people are "invisible in day-to-day life".
The Scope survey, based on a sample of more than 2,000 adults across Britain, suggests public support for the rights of disabled people to be part of mainstream society is not matched by everyday experience.
It suggests people with physical and mental disabilities remain excluded from many people's social or work life.
According to the Scope survey, almost two in five people do not know anyone outside of their own family who is disabled.
And only a fifth of people in the survey have ever worked with a disabled person.
According to Scope, about one in 10 of the non-pensioner population is disabled.
The survey did not ask people why they had not invited disabled people to their social events, but a spokeswoman for the charity suggested that reasons could include worries about physical access and also an "embarrassment factor".
"It's not that people are nasty, but they might not know what to say. The less familiar they are with disabled people, the more the embarrassment. The unwillingness to offend can cause the exclusion," she said.
Mr Hawkes described the survey's findings as "shocking evidence" of the extent to which disabled people are pushed to the "fringes of society".
He warned that any government spending cuts could isolate disabled people even further.
"The government needs to carry out a full impact assessment before making any cuts to ensure they understand the full consequences of reductions in critical support such as Disability Living Allowance and Incapacity Benefit. These form a vital lifeline for many disabled people and their families."
Nine out of 10 people in Britain have never had a disabled person in their house for a social occasion, claims a survey from a disability charity.
Scope says the survey shows that disabled people are socially excluded.
While the survey found widespread backing for equal opportunities, in practice few people have any personal dealings with people with disabilities.
The charity's chief executive, Richard Hawkes, says disabled people are "invisible in day-to-day life".
The Scope survey, based on a sample of more than 2,000 adults across Britain, suggests public support for the rights of disabled people to be part of mainstream society is not matched by everyday experience.
It suggests people with physical and mental disabilities remain excluded from many people's social or work life.
According to the Scope survey, almost two in five people do not know anyone outside of their own family who is disabled.
And only a fifth of people in the survey have ever worked with a disabled person.
According to Scope, about one in 10 of the non-pensioner population is disabled.
The survey did not ask people why they had not invited disabled people to their social events, but a spokeswoman for the charity suggested that reasons could include worries about physical access and also an "embarrassment factor".
"It's not that people are nasty, but they might not know what to say. The less familiar they are with disabled people, the more the embarrassment. The unwillingness to offend can cause the exclusion," she said.
Mr Hawkes described the survey's findings as "shocking evidence" of the extent to which disabled people are pushed to the "fringes of society".
He warned that any government spending cuts could isolate disabled people even further.
"The government needs to carry out a full impact assessment before making any cuts to ensure they understand the full consequences of reductions in critical support such as Disability Living Allowance and Incapacity Benefit. These form a vital lifeline for many disabled people and their families."
NYC mental health program finds success using peer counselors
From NY1:
Diane Hatton-Gresham has drifted in and out of mental health services for years. She says she is finally on the road to recovery, with the help of a peer counseling program in Flatbush, Brooklyn that is run by the Health and Hospitals Corporation, the city's public hospital system.
"Everyone who is involved in it, they are kind, they are encouraging, they are inspiring. They take time to listen," she says.
HHC's peer counseling program has been recently revamped and expanded to put a fresh focus on patient-centered care. Once patients themselves, peer counselors work as mentors to those currently in treatment.
The program is playing an especially crucial role at Kings County Hospital's Behavioral Health Center, where two years ago a patient named Esmin Green died in a psychiatric waiting room after allegedly being ignored by staff for an entire day. Hospital surveillance video captured her
The peer counseling program is systemwide throughout the city's public hospitals, but doctors and counselors in Kings County say the fate of Esmin Green is a hugely motivating factor behind what they are trying to accomplish.
On the walls of the office of Dr. Joseph Merlino, the director of psychiatry and deputy executive director at Kings County, there is a photo of Esmin Green right above his desk, along with a snapshot of the surveillance footage capturing Green's neglect right beside it.
"The reason that I have a picture of Esmin Green over my desk is to remind me every day, and anybody who comes into my office to meet with me, that we have a commitment to all the Esmin Greens of the world, that what happened to her never happens again," says Merlino.
The peer counseling model has the praise of the New York branch of the National Alliance on Mental Illness.
"What the peer counselor adds is that they are living proof that treatment works," says NAMI NYC Metro program director Mary Lee Gupta.
"I tell my patients that I work with, that 'I'm just a bed away from being in the bed next to you,'" says peer counselor Beverly Carthens-Reed. "I still suffer with ailments that I have, but at least I know that if ever, God forbid, I become ill again, that I have a better chance now."
Diane Hatton-Gresham has drifted in and out of mental health services for years. She says she is finally on the road to recovery, with the help of a peer counseling program in Flatbush, Brooklyn that is run by the Health and Hospitals Corporation, the city's public hospital system.
"Everyone who is involved in it, they are kind, they are encouraging, they are inspiring. They take time to listen," she says.
HHC's peer counseling program has been recently revamped and expanded to put a fresh focus on patient-centered care. Once patients themselves, peer counselors work as mentors to those currently in treatment.
The program is playing an especially crucial role at Kings County Hospital's Behavioral Health Center, where two years ago a patient named Esmin Green died in a psychiatric waiting room after allegedly being ignored by staff for an entire day. Hospital surveillance video captured her
The peer counseling program is systemwide throughout the city's public hospitals, but doctors and counselors in Kings County say the fate of Esmin Green is a hugely motivating factor behind what they are trying to accomplish.
On the walls of the office of Dr. Joseph Merlino, the director of psychiatry and deputy executive director at Kings County, there is a photo of Esmin Green right above his desk, along with a snapshot of the surveillance footage capturing Green's neglect right beside it.
"The reason that I have a picture of Esmin Green over my desk is to remind me every day, and anybody who comes into my office to meet with me, that we have a commitment to all the Esmin Greens of the world, that what happened to her never happens again," says Merlino.
The peer counseling model has the praise of the New York branch of the National Alliance on Mental Illness.
"What the peer counselor adds is that they are living proof that treatment works," says NAMI NYC Metro program director Mary Lee Gupta.
"I tell my patients that I work with, that 'I'm just a bed away from being in the bed next to you,'" says peer counselor Beverly Carthens-Reed. "I still suffer with ailments that I have, but at least I know that if ever, God forbid, I become ill again, that I have a better chance now."
Speech-to-text glasses let deaf people read what is being spoken
From Dvice.com:
A lot of deaf people learn to read lips, but that's got to be a tough learning curve, with inexact results at best. Wouldn't if be great if you could simply give the hearing impaired a written transcript of what you're saying in real time?
That's the idea behind the Babel Fisk (fisk is Danish for fish) glasses concept from Danish designer Mads Hindhede. Microphones built into the frame pick up the voice of a person in your line of sight, then an embedded speech to text program creates text that is projected onto the inside of the lenses.
Another feature lets you record the text to a flash memory card for later use, which would be great if you're the type of person who tends to sleep through meetings or boring lectures.
A lot of deaf people learn to read lips, but that's got to be a tough learning curve, with inexact results at best. Wouldn't if be great if you could simply give the hearing impaired a written transcript of what you're saying in real time?
That's the idea behind the Babel Fisk (fisk is Danish for fish) glasses concept from Danish designer Mads Hindhede. Microphones built into the frame pick up the voice of a person in your line of sight, then an embedded speech to text program creates text that is projected onto the inside of the lenses.
Another feature lets you record the text to a flash memory card for later use, which would be great if you're the type of person who tends to sleep through meetings or boring lectures.
MS symptoms may vary with the season
From the Los Angeles Times:
Multiple sclerosis, a disease in which a person’s own immune system attacks the brain and spinal cord, is a lifelong problem -- but its effects can be highly seasonal, researchers say.
Between March and August, patients suffering from multiple sclerosis were two to three times more likely to develop brain lesions than during the rest of the year, according to the paper published in the Aug. 31 issue of the journal Neurology.
The scientists looked for new T2 lesions in 939 MRI exams of 44 patients, taken between 1991 and 1993. The study found that the disease’s intensity also rose in the summer months, and appeared to be linked to solar radiation (which includes sunlight), as well as temperature.
The research was unique and unlikely to be repeated, Anne Cross, a neurologist at Washington University School of Medicine in St. Louis, wrote in an editorial on the study. Because certain drugs currently taken by multiple sclerosis patients weren't readily available in the early 1990s, this data would not be complicated by the presence of those now-common medications.
Scientists trying to set up studies examining multiple sclerosis will now have to consider seasonal variability, Cross wrote.
Case in point: Say researchers conduct a study on a drug that could potentially help multiple sclerosis patients. If that study lasts just six months, from summer into winter, any positive effects may simply be due to cooling weather and less sunlight, not to the drug's effectiveness.
Cross added that the research could ultimately lead to “important clues regarding the mechanisms of disease progression in MS.”
Multiple sclerosis, a disease in which a person’s own immune system attacks the brain and spinal cord, is a lifelong problem -- but its effects can be highly seasonal, researchers say.
Between March and August, patients suffering from multiple sclerosis were two to three times more likely to develop brain lesions than during the rest of the year, according to the paper published in the Aug. 31 issue of the journal Neurology.
The scientists looked for new T2 lesions in 939 MRI exams of 44 patients, taken between 1991 and 1993. The study found that the disease’s intensity also rose in the summer months, and appeared to be linked to solar radiation (which includes sunlight), as well as temperature.
The research was unique and unlikely to be repeated, Anne Cross, a neurologist at Washington University School of Medicine in St. Louis, wrote in an editorial on the study. Because certain drugs currently taken by multiple sclerosis patients weren't readily available in the early 1990s, this data would not be complicated by the presence of those now-common medications.
Scientists trying to set up studies examining multiple sclerosis will now have to consider seasonal variability, Cross wrote.
Case in point: Say researchers conduct a study on a drug that could potentially help multiple sclerosis patients. If that study lasts just six months, from summer into winter, any positive effects may simply be due to cooling weather and less sunlight, not to the drug's effectiveness.
Cross added that the research could ultimately lead to “important clues regarding the mechanisms of disease progression in MS.”
German scientists succeed in analyzing all genes in human genome at once; new process used first on children with MR diagnosis
From ANI:
Scientists at the Max Planck Institute for Molecular Genetics and the Institute of Medical Genetics at the Charite Universitatsmedizin - Berlin have succeeded in using a new process with which all of the genes in the human genome can be analysed at the same time.
The process was used for the first time on three children in a family who suffer from a rare form of mental retardation (Mabry Syndrome).
The results reveal that the new genome sequencing processes are suitable for tracking down individual mutations in the genome and for the identification of these mutations as the cause of rare diseases.
"It was like the proverbial search for a needle in a haystack. We fished out solely the 22,000 genes from the entire genome, decoded their sequence and examined them for mutations. Using new bioinformatic analyses, we were able to limit the number of mutation candidates to two - one of which is ultimately responsible for Mabry Syndrome," Nature quoted Michal Ruth Schweiger as saying.
The available results will enable, for example, the identification of the genetic risk in affected couples that would like to have children.
Mabry Syndrome is a rare recessive genetic disorder that causes mental retardation, seizures and a characteristic mutation in the blood values of those affected. The raised level of the enzyme alkaline phosphatase, which usually plays a role in bone metabolism, can be measured in the blood.
The researchers succeeded in showing that in the case of Mabry Syndrome the PIGV gene is mutated, in such a way that the alkaline phosphatase is not adequately connected to the cell membrane.
The researchers assume that PIGV in the brain is responsible for the anchoring of many other proteins and that this malfunction is responsible for the mental retardation associated with Mabry Syndrome.
The methods of genome analysis developed here enable the identification of mutations even in the case of extremely rare diseases and represent an important step forward in the direction of individualised molecular medicine.
The study is published in Nature Genetics.
Scientists at the Max Planck Institute for Molecular Genetics and the Institute of Medical Genetics at the Charite Universitatsmedizin - Berlin have succeeded in using a new process with which all of the genes in the human genome can be analysed at the same time.
The process was used for the first time on three children in a family who suffer from a rare form of mental retardation (Mabry Syndrome).
The results reveal that the new genome sequencing processes are suitable for tracking down individual mutations in the genome and for the identification of these mutations as the cause of rare diseases.
"It was like the proverbial search for a needle in a haystack. We fished out solely the 22,000 genes from the entire genome, decoded their sequence and examined them for mutations. Using new bioinformatic analyses, we were able to limit the number of mutation candidates to two - one of which is ultimately responsible for Mabry Syndrome," Nature quoted Michal Ruth Schweiger as saying.
The available results will enable, for example, the identification of the genetic risk in affected couples that would like to have children.
Mabry Syndrome is a rare recessive genetic disorder that causes mental retardation, seizures and a characteristic mutation in the blood values of those affected. The raised level of the enzyme alkaline phosphatase, which usually plays a role in bone metabolism, can be measured in the blood.
The researchers succeeded in showing that in the case of Mabry Syndrome the PIGV gene is mutated, in such a way that the alkaline phosphatase is not adequately connected to the cell membrane.
The researchers assume that PIGV in the brain is responsible for the anchoring of many other proteins and that this malfunction is responsible for the mental retardation associated with Mabry Syndrome.
The methods of genome analysis developed here enable the identification of mutations even in the case of extremely rare diseases and represent an important step forward in the direction of individualised molecular medicine.
The study is published in Nature Genetics.
New Chicago program aids travelers with disabilities
From WLS-TV in Chicago:
CHICAGO -- Chicago strives to be the most accessible city in the world, and making a first impression on visitors often takes place at airports.
Recognizing some of the challenges travelers with disabilities deal with at airports, the Department of Aviation has created a program that aims to make traveling easy and enjoyable.
"For every traveler that travels through our airports, we want to make sure that their first impression and their last impression of our great city is one that says, 'Chicago knows how to do it right. Mayor Daley cares and Chicago cares,'" said Dept. of Aviation Commissioner Rosemarie Andolino.
It is not a easy task, especially when you have more than 83 million passengers traveling through Chicago airports every year.
Andolino says she wants to make sure there is something for everyone. That's why the city created the disability awareness and assistance program.
"We took into account all the services that we provide here at the city, including our traveler's aid service and working with the mayor's Office of People with Disabilities. We put together a program," said Andolino.
The program includes increasing accessible features, sensitivity training to all staff and the 'purple airplane.'
"What we have is a purple airplane sticker from the website and we put it on their person so that when they're traveling through the airport, our teams who have been trained in disability [education], awareness, will visualize that airplane and then provide them with that additional assistance," Andolino said.
Disability awareness training has been organized by the mayor's Office for People with Disabilities. Commissioner Karen Tamley explained how it was put together.
"We just really start with basic concepts around communication, courtesy, common sense. Those are kind of our three C's that we start with and really talk about that, don't assume. Don't assume someone needs help, don't assume how you should help somebody. You need to ask the individuals first how they need help," said Tamley said. "I'm a very frequent traveler myself, and often times people just start helping you without even asking how you need assistance."
There is a system set up for providing assistance.
"The airlines do contract with agencies that assist people on and off the planes. Then, obviously, the airport has staff that also provides customer assistance. But in many ways, we see it as one. The average traveler doesn't know the difference between who's a city employer and who's a contractor of the airlines. So, that's why we're doing training on two fronts," said Andolino.
The program started six months ago.
"The long-term plan is to continue to grow, to continue to raise awareness, and we're working with Traveler's Aid, which is a national organization that represents over 26 airports to make this a national program so that people-- whether they're coming, arriving from another airport-- have the same level of service and can expect that additional assistance," said Andolino.
CHICAGO -- Chicago strives to be the most accessible city in the world, and making a first impression on visitors often takes place at airports.
Recognizing some of the challenges travelers with disabilities deal with at airports, the Department of Aviation has created a program that aims to make traveling easy and enjoyable.
"For every traveler that travels through our airports, we want to make sure that their first impression and their last impression of our great city is one that says, 'Chicago knows how to do it right. Mayor Daley cares and Chicago cares,'" said Dept. of Aviation Commissioner Rosemarie Andolino.
It is not a easy task, especially when you have more than 83 million passengers traveling through Chicago airports every year.
Andolino says she wants to make sure there is something for everyone. That's why the city created the disability awareness and assistance program.
"We took into account all the services that we provide here at the city, including our traveler's aid service and working with the mayor's Office of People with Disabilities. We put together a program," said Andolino.
The program includes increasing accessible features, sensitivity training to all staff and the 'purple airplane.'
"What we have is a purple airplane sticker from the website and we put it on their person so that when they're traveling through the airport, our teams who have been trained in disability [education], awareness, will visualize that airplane and then provide them with that additional assistance," Andolino said.
Disability awareness training has been organized by the mayor's Office for People with Disabilities. Commissioner Karen Tamley explained how it was put together.
"We just really start with basic concepts around communication, courtesy, common sense. Those are kind of our three C's that we start with and really talk about that, don't assume. Don't assume someone needs help, don't assume how you should help somebody. You need to ask the individuals first how they need help," said Tamley said. "I'm a very frequent traveler myself, and often times people just start helping you without even asking how you need assistance."
There is a system set up for providing assistance.
"The airlines do contract with agencies that assist people on and off the planes. Then, obviously, the airport has staff that also provides customer assistance. But in many ways, we see it as one. The average traveler doesn't know the difference between who's a city employer and who's a contractor of the airlines. So, that's why we're doing training on two fronts," said Andolino.
The program started six months ago.
"The long-term plan is to continue to grow, to continue to raise awareness, and we're working with Traveler's Aid, which is a national organization that represents over 26 airports to make this a national program so that people-- whether they're coming, arriving from another airport-- have the same level of service and can expect that additional assistance," said Andolino.
New testing allows quick assessment of children with Down syndrome
From UPI:
TUCSON -- A new battery of tests taking only 2 hours can assess the best drug and behavioral help for children with Down syndrome, U.S. researchers say.
"In the past when we would assess cognition in Down syndrome it would be over the course of several days," Lynn Nadel and Jamie Edgin of the Down Syndrome Research Group at the University of Arizona, Tucson, said in a statement.
The tests use non-language dependent computer exercises to determine what the researchers call a "developmental trajectory" of those with Down syndrome. The tests have been validated in a study published in the Journal of Neurodevelopmental Disorders.
"The point is that these tasks in the test battery have been selected because they really hone in on the particular functions of the brain regions," Nadel said.
"What's equally important is that not only do they hone in on a particular brain region, but they also don't particularly depend on other brain regions. They're selective."
Also involved in the tests were researchers at Johns Hopkins University and Emory University.
In Down syndrome, the presence of an extra chromosome -- occurring once in about 800 to 1,000 live births -- can lead to health issues as well as mild to severe developmental disabilities.
TUCSON -- A new battery of tests taking only 2 hours can assess the best drug and behavioral help for children with Down syndrome, U.S. researchers say.
"In the past when we would assess cognition in Down syndrome it would be over the course of several days," Lynn Nadel and Jamie Edgin of the Down Syndrome Research Group at the University of Arizona, Tucson, said in a statement.
The tests use non-language dependent computer exercises to determine what the researchers call a "developmental trajectory" of those with Down syndrome. The tests have been validated in a study published in the Journal of Neurodevelopmental Disorders.
"The point is that these tasks in the test battery have been selected because they really hone in on the particular functions of the brain regions," Nadel said.
"What's equally important is that not only do they hone in on a particular brain region, but they also don't particularly depend on other brain regions. They're selective."
Also involved in the tests were researchers at Johns Hopkins University and Emory University.
In Down syndrome, the presence of an extra chromosome -- occurring once in about 800 to 1,000 live births -- can lead to health issues as well as mild to severe developmental disabilities.
JK Rowling donates $15.4 million to set up MS clinic in honor of her mother
From The AP:
Author J.K. Rowling has given $15.4 million to set up a clinic to treat and research multiple sclerosis, the disease that killed her mother in 1990.
The creator of Harry Potter said Tuesday that the Anne Rowling Regenerative Neurology Clinic will be based at the University of Edinburgh in Scotland, and that she hopes it will become "a world center for excellence in the field of regenerative neurology."
The university said Rowling's gift is the largest single donation it has received.
Author J.K. Rowling has given $15.4 million to set up a clinic to treat and research multiple sclerosis, the disease that killed her mother in 1990.
The creator of Harry Potter said Tuesday that the Anne Rowling Regenerative Neurology Clinic will be based at the University of Edinburgh in Scotland, and that she hopes it will become "a world center for excellence in the field of regenerative neurology."
The university said Rowling's gift is the largest single donation it has received.
Statue erected in Colorado to honor Paralympian skier
From the Snowmass Sun:
Cara Dunne and her seeing-eye dog Haley look as if they are ready to walk over to the Elk Camp Gondola and head up the mountain.
But this bronze likeness of a girl and her dog will forever be frozen in time at one end of the Base Village Plaza.
“Cara is the most amazing individual you would ever meet,” said Houston Cowan, co-founder of Challenge Aspen, who had been her skiing guide since the mid-1990s.
Partially blind from birth with retinal cancer, she had both eyes removed by the time the she was five, but she accomplished much in her short life that ended on October 20, 2004.
In 1984 when she was 12 years old, Cara won two bronze medals and one silver at the winter Paralympics in Innsbruck, Austria, and in 1988, she returned to win two more silver medals, one in the downhill and the other in giant slalom.
She gave up competing for a while in order to attend Harvard University where she graduated magna cum laude in 1992 as class president. This was followed by a law degree from UCLA in 1997.
In 1995, she decided to return to competitive skiing and heard about Houston Cowan, who had been a guide for the B.O.L.D program in Aspen, which was then under the directorship of Peter Maines. At the time, Cowan and Amanda Boxtel were beginning to build Challenge Aspen and Dunne helped to develop their programs for the visually impaired.
“I became her skiing guide and helped her train to be on the U.S. Disabled Ski Team. We immediately became good friends,” he said.
The two trained on the slopes of Snowmass ski area and during the summer at Mount Hood.
“She was the top totally blind skier in America and one of the top in the world,” said Cowan.
Cara Dunne was invited to try out for the 1996 U.S. Paralympic Tandem Cycling Team and competed in the sport at that summer's Paralympics in Atlanta, winning a silver medal in tandem kilo and a bronze medal in the 200 meter sprint.
She not only became the only competitor to have won medals in the summer and winter Paralympics, but she also fell in love and got married to another cyclist.
With a new life and then two children, she gave up the dream to compete in skiing again, but she didn't give up her love of the sport.
Once her youngest daughter was three–and–a–half years old, Dunne brought her back to Snowmass Village and taught her to ski with the help of Cowan.
“I guided her while she snowplowed with Elise between her legs on Fanny Hill. She is probably the only blind mother to teach her child to ski. It was something to see. I cried on many occasions,” he said.
The creation of a statue to honor this incredible person was the idea of her father, Mike Dunne of Boulder, who works in promotions for winter sports including with the U.S. Ski Team.
After her death, he had been reading an article about her in the Boston Globe, which talked about her being “influential in increasing the opportunities for people with disabilities in sports both in this country and internationally,”
“At that moment I conceptualized the statue all in one piece. I felt that Cara was guiding me. I wanted it to be more than a tribute, it was also a way to promote disabled sports and Challenge Aspen. I hope people read her story on the plaques at the base of the statue and get motivated,” he said.
There was never a doubt in his mind where the statue should go. It was to make its home at the base of the ski area that Cara loved and near Challenge Aspen.
Created by sculptor Jerry Snodgrass of Boise, from donations by Cara's friends, family, her graduating class, Related WestPac, Aspen Skiing Co. and many more, it is a tribute from so many who knew her and those who were inspired by her life story.
Some notables who felt the need to give were Lance Armstrong, Vince Gill, Amy Grant and Scott Turow. The list is too long to mention here, but one of the plaques on the base of the 750–pound statue includes all of the donors.
More than five years after Mike Dunne had the inspiration to immortalize his daughter, the statue has arrived in Snowmass Village with only the landscaping to be finished.
It's been a long road for him to bring his initial idea to fruition, and that road has ended near the Elk Camp Gondola.
“Now I will let Cara do the work,” said Mike Dunne.
Cara Dunne and her seeing-eye dog Haley look as if they are ready to walk over to the Elk Camp Gondola and head up the mountain.
But this bronze likeness of a girl and her dog will forever be frozen in time at one end of the Base Village Plaza.
“Cara is the most amazing individual you would ever meet,” said Houston Cowan, co-founder of Challenge Aspen, who had been her skiing guide since the mid-1990s.
Partially blind from birth with retinal cancer, she had both eyes removed by the time the she was five, but she accomplished much in her short life that ended on October 20, 2004.
In 1984 when she was 12 years old, Cara won two bronze medals and one silver at the winter Paralympics in Innsbruck, Austria, and in 1988, she returned to win two more silver medals, one in the downhill and the other in giant slalom.
She gave up competing for a while in order to attend Harvard University where she graduated magna cum laude in 1992 as class president. This was followed by a law degree from UCLA in 1997.
In 1995, she decided to return to competitive skiing and heard about Houston Cowan, who had been a guide for the B.O.L.D program in Aspen, which was then under the directorship of Peter Maines. At the time, Cowan and Amanda Boxtel were beginning to build Challenge Aspen and Dunne helped to develop their programs for the visually impaired.
“I became her skiing guide and helped her train to be on the U.S. Disabled Ski Team. We immediately became good friends,” he said.
The two trained on the slopes of Snowmass ski area and during the summer at Mount Hood.
“She was the top totally blind skier in America and one of the top in the world,” said Cowan.
Cara Dunne was invited to try out for the 1996 U.S. Paralympic Tandem Cycling Team and competed in the sport at that summer's Paralympics in Atlanta, winning a silver medal in tandem kilo and a bronze medal in the 200 meter sprint.
She not only became the only competitor to have won medals in the summer and winter Paralympics, but she also fell in love and got married to another cyclist.
With a new life and then two children, she gave up the dream to compete in skiing again, but she didn't give up her love of the sport.
Once her youngest daughter was three–and–a–half years old, Dunne brought her back to Snowmass Village and taught her to ski with the help of Cowan.
“I guided her while she snowplowed with Elise between her legs on Fanny Hill. She is probably the only blind mother to teach her child to ski. It was something to see. I cried on many occasions,” he said.
The creation of a statue to honor this incredible person was the idea of her father, Mike Dunne of Boulder, who works in promotions for winter sports including with the U.S. Ski Team.
After her death, he had been reading an article about her in the Boston Globe, which talked about her being “influential in increasing the opportunities for people with disabilities in sports both in this country and internationally,”
“At that moment I conceptualized the statue all in one piece. I felt that Cara was guiding me. I wanted it to be more than a tribute, it was also a way to promote disabled sports and Challenge Aspen. I hope people read her story on the plaques at the base of the statue and get motivated,” he said.
There was never a doubt in his mind where the statue should go. It was to make its home at the base of the ski area that Cara loved and near Challenge Aspen.
Created by sculptor Jerry Snodgrass of Boise, from donations by Cara's friends, family, her graduating class, Related WestPac, Aspen Skiing Co. and many more, it is a tribute from so many who knew her and those who were inspired by her life story.
Some notables who felt the need to give were Lance Armstrong, Vince Gill, Amy Grant and Scott Turow. The list is too long to mention here, but one of the plaques on the base of the 750–pound statue includes all of the donors.
More than five years after Mike Dunne had the inspiration to immortalize his daughter, the statue has arrived in Snowmass Village with only the landscaping to be finished.
It's been a long road for him to bring his initial idea to fruition, and that road has ended near the Elk Camp Gondola.
“Now I will let Cara do the work,” said Mike Dunne.
Houston couple says people with disabilities should live independently so they can direct their own lives
From Houston Public Radio, KUHF, by health, science and technology reporter Carrie Feibel:
Kathleen DeSilva (pictured) and her husband live in a small bungalow in the Heights – and they relish every freedom that comes with it.
“You can’t have pets in a nursing home, and we love to have our dogs. We’ve had dogs for years now.”
DeSilva cannot breathe without a ventilator. She has been paralyzed from the neck down since a high school gymnastics accident 42 years ago. Her husband Peter Simmons broke his neck in a motorcycle crash when he was 28. While many people with disabilities must live in a nursing home, this couple has fought for decades to live on their own terms.
“We did have to renovate the bathroom to make it wheelchair accessible, we had to add ramps front and back. And we built a garage at the back of our house that has apartments in it, and in those apartments is where our caregivers live.”
It helps that DeSilva worked for 22 years as an attorney for Memorial Hermann Hospital. She’s retired now, and the couple budgets carefully so they can pay their three caregivers. Peter Simmons enjoys photography, and he leads the dogs on daily wheelchair walks. Kathleen DeSilva directs the cooking, instructing the caregiver exactly how to prepare and spice the food.
“A big part of independent living is that you direct your own care. And you tell people what to do for you, in the way that you want it done. So that they don’t come in with preconceived notions about how your care should be done.”
Other people with disabilities are less fortunate. The Texas government has identified tens of thousands of people who live in nursing homes — but have expressed a wish to get out. They are waiting for special waivers that would allow them to spend their Medicaid money outside of the nursing home. For example, if they could apply the money to visiting nurses or adaptive equipment, they could live independently.
“I mean, I don’t know anybody who would voluntarily move into a nursing home.”
Lex Frieden directs an independent living research program affiliated with Memorial Hermann.
“The only reason people have to move into nursing homes now, by and large, is that they don’t have access to assistance in the community.”
In 1999, the U.S. Supreme Court weighed in. It ruled that people with disabilities have a right to live in the least restrictive setting possible. State governments scrambled to comply. Texas has at least eight different programs to promote independent living, but it can’t keep up with all the demand.
“I would love to move everyone out of a nursing home if that were feasible.”
That’s Aileen McCormick, the regional CEO for Amerigroup, a managed-care company. Amerigroup has a contract with Texas to – in McCormick’s words — “liberate” patients from nursing homes. Since 2007, Amerigroup has moved almost 400 people out of nursing homes, and prevented close to a thousand people from having to move into one.
“The stories we get from folks who feel like they’ve been given their life back and the beauty for taxpayers in Texas is, it’s a less costly option.”
State officials say they are still gathering data on exactly how much money is saved, per person. It’s difficult because every medical case is unique. But they agree that at-home care is cheaper, on average, than nursing homes.
“It really is true and it works. And so I think there is a real movement that says ‘Hey if this is good for Texans in all of these urban markets, why is it not good for Texans in other markets where we don’t do it yet?’”
This type of program is not yet available statewide. Amerigroup plans to lobby the Texas Legislature for permission to expand into the Rio Grande Valley and elsewhere.
Kathleen DeSilva (pictured) and her husband live in a small bungalow in the Heights – and they relish every freedom that comes with it.
“You can’t have pets in a nursing home, and we love to have our dogs. We’ve had dogs for years now.”
DeSilva cannot breathe without a ventilator. She has been paralyzed from the neck down since a high school gymnastics accident 42 years ago. Her husband Peter Simmons broke his neck in a motorcycle crash when he was 28. While many people with disabilities must live in a nursing home, this couple has fought for decades to live on their own terms.
“We did have to renovate the bathroom to make it wheelchair accessible, we had to add ramps front and back. And we built a garage at the back of our house that has apartments in it, and in those apartments is where our caregivers live.”
It helps that DeSilva worked for 22 years as an attorney for Memorial Hermann Hospital. She’s retired now, and the couple budgets carefully so they can pay their three caregivers. Peter Simmons enjoys photography, and he leads the dogs on daily wheelchair walks. Kathleen DeSilva directs the cooking, instructing the caregiver exactly how to prepare and spice the food.
“A big part of independent living is that you direct your own care. And you tell people what to do for you, in the way that you want it done. So that they don’t come in with preconceived notions about how your care should be done.”
Other people with disabilities are less fortunate. The Texas government has identified tens of thousands of people who live in nursing homes — but have expressed a wish to get out. They are waiting for special waivers that would allow them to spend their Medicaid money outside of the nursing home. For example, if they could apply the money to visiting nurses or adaptive equipment, they could live independently.
“I mean, I don’t know anybody who would voluntarily move into a nursing home.”
Lex Frieden directs an independent living research program affiliated with Memorial Hermann.
“The only reason people have to move into nursing homes now, by and large, is that they don’t have access to assistance in the community.”
In 1999, the U.S. Supreme Court weighed in. It ruled that people with disabilities have a right to live in the least restrictive setting possible. State governments scrambled to comply. Texas has at least eight different programs to promote independent living, but it can’t keep up with all the demand.
“I would love to move everyone out of a nursing home if that were feasible.”
That’s Aileen McCormick, the regional CEO for Amerigroup, a managed-care company. Amerigroup has a contract with Texas to – in McCormick’s words — “liberate” patients from nursing homes. Since 2007, Amerigroup has moved almost 400 people out of nursing homes, and prevented close to a thousand people from having to move into one.
“The stories we get from folks who feel like they’ve been given their life back and the beauty for taxpayers in Texas is, it’s a less costly option.”
State officials say they are still gathering data on exactly how much money is saved, per person. It’s difficult because every medical case is unique. But they agree that at-home care is cheaper, on average, than nursing homes.
“It really is true and it works. And so I think there is a real movement that says ‘Hey if this is good for Texans in all of these urban markets, why is it not good for Texans in other markets where we don’t do it yet?’”
This type of program is not yet available statewide. Amerigroup plans to lobby the Texas Legislature for permission to expand into the Rio Grande Valley and elsewhere.
British government report says business could be boosted by better disability access in readying for Paralympics 2012
From BBC News:
Companies could boost business by improving disabled access ahead of the London 2012 Paralympics, a government report has said.
More than one million disabled visitors are expected in London for the games.
The report, commissioned by the Business Department and Office for Disability Issues, found the disabled market is worth up to £80bn a year.
Disabled People Minister Maria Miller called the games an "opportunity to reach out to disabled customers".
The report found disabled customers may account for up to 20% of a firm's customers - but 32% of disabled people have difficulty getting goods and services they want to use.
The report claimed this meant small companies could be losing one in five of their customers.
Companies could boost business by improving disabled access ahead of the London 2012 Paralympics, a government report has said.
More than one million disabled visitors are expected in London for the games.
The report, commissioned by the Business Department and Office for Disability Issues, found the disabled market is worth up to £80bn a year.
Disabled People Minister Maria Miller called the games an "opportunity to reach out to disabled customers".
The report found disabled customers may account for up to 20% of a firm's customers - but 32% of disabled people have difficulty getting goods and services they want to use.
The report claimed this meant small companies could be losing one in five of their customers.
Surf lessons open new vistas for disabled kids
From The AP:
LONG BEACH, N.Y. — The lesson begins on the beach with a youngster lying on a surfboard more than twice her size. After some brief orientation, the child, joined by a world-class surfing coach, is soon paddling about 30 yards into the ocean.
As a modest 2-foot wave appears, the coach and his student begin paddling furiously toward shore. In an instant, the coach eases away from the board and implores his charge to "pop up," and stand on the board. A shriek explodes from excited parents on the beach who scream with glee as the newcomer stands and rides her first wave to shore.
"I knew what I was doing! exclaims 14-year-old Meghan Fink of Seaford, N.Y, who is vision-impaired. "I was able to stand up on that board and I felt the wind through my hair and the water came over my head a few times. It was just amazing."
Learning to surf is a rite of passage for teens in seaside communities around the world. But in recent years in communities from Long Beach, N.Y., to San Diego and Hawaii, children with disabilities ranging from near-blindness to autism have been joining the fun, amazing their parents, their counselors and themselves by hopping up on surfboards and riding the waves.
Such programs have been around for about a decade. No one suggests there are therapeutic cures amid the waves, but the surge in self-confidence is easily evident.
"It's a thrill of feeling yourself in a situation where you have control and you are working with nature to get some pleasure and enjoyment, and that's what surfing is all about," says Harvey Weisenberg, 50-year veteran lifeguard in Long Beach, who has a 52-year-old developmentally disabled son. Weisenberg, also a state lawmaker, is one of the local founders of a program now called "Surf for All," which allows those who never dreamed of surfing the opportunity to "hang 10."
The group recently entertained participants in the Wounded Warriors program, which assists veterans injured in the wars in Iraq and Afghanistan.
"The feeling of riding a wave is nothing like anything else," says Cliff Skudin, who like his brother, Will, is a professional world-class surfer; both are stars of the surfing magazines. "You feel weightless; it's an amazing feeling to be rising above the waves."
Cliff Skudin, who has a master's degree in physical education, is another Surf for All founder. The program started with five autistic surfers in 2002, but now boasts more than 1,800 alumni.
"Smiles on the kids' faces and cheers from the parents is all I need," Cliff Skudin said when asked to explain why he became involved. "It's a different feeling that they've never had."
He recalls working with an autistic child several years ago who had never spoken. After riding a wave with Skudin, the child arrived back on the beach. "He said, `More, more, I want more.' And the family was just completely shocked."
"To see that was awesome."
The surfers and their coaches aren't the only ones benefiting.
"The adults that come just to see are moved, they have a different insight as to kids with disabilities immediately," says Mary Tatem, director of Pupil Personnel Services in the Long Beach school system. Special needs children from the school system have participated in a summer surfing program for several years, she said.
And the students? "They feel empowered because they're doing something what feels to them to be on their own."
Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at the Steven & Alexandra Cohen Children's Medical Center, notes there have been other types of novel approaches in dealing with children with autism, such as swimming with dolphins, but he warns surfing "is not a breakthrough in therapy."
He also sees few pitfalls.
"I don't see any worries about safety; there appears to be adequate one-on-one supervision," he said. "This is certainly something that parents can encourage and support. Anything you can do to show kids a good time, that's wonderful."
Another Surf for All founder, Jim Mulvaney, explains the concept began about a decade ago in California, where noted surf champ and instructor Izzy Paskowitz began putting autistic children on surfboards in a program called "Surfer's Healing."
Now surf schools in many locations include instruction for disabled children and adults.
"It's just taken off," Mulvaney said. "People with disabilities often don't have enough fun. And they're left out of things and they're often seen as being disabled rather than being abled."
Lisa Innella, director of Camp Abilities Long Island, said she is barred by privacy laws from describing the level of blindness of the students. Most ambled across the beach with little trouble, although some used canes.
"I just want these kids to be able to go out there and try for the first time and enjoy themselves," she said.
Michael Taylor, 11, of East Meadow, whose mother said he has "not much useable vision," fell into the water twice before triumphing on his board.
"I thought it was pretty cool," he exclaimed. "The best part was the third time I stood up on a surfboard."
And what did he learn from his coach, Skudin?
"He told me to pop up. Yep, that's what I did."
John Gilroy, a 14-year-old vision-impaired teen from West Islip, is awaiting hip replacement surgery, but that didn't stop him from commanding the waves.
"It was really cool. It was my first time surfing and even though I can't walk right, I can still go on the surfboard and take the wave," he said. "It was really cool, a really big rush, I guess."
LONG BEACH, N.Y. — The lesson begins on the beach with a youngster lying on a surfboard more than twice her size. After some brief orientation, the child, joined by a world-class surfing coach, is soon paddling about 30 yards into the ocean.
As a modest 2-foot wave appears, the coach and his student begin paddling furiously toward shore. In an instant, the coach eases away from the board and implores his charge to "pop up," and stand on the board. A shriek explodes from excited parents on the beach who scream with glee as the newcomer stands and rides her first wave to shore.
"I knew what I was doing! exclaims 14-year-old Meghan Fink of Seaford, N.Y, who is vision-impaired. "I was able to stand up on that board and I felt the wind through my hair and the water came over my head a few times. It was just amazing."
Learning to surf is a rite of passage for teens in seaside communities around the world. But in recent years in communities from Long Beach, N.Y., to San Diego and Hawaii, children with disabilities ranging from near-blindness to autism have been joining the fun, amazing their parents, their counselors and themselves by hopping up on surfboards and riding the waves.
Such programs have been around for about a decade. No one suggests there are therapeutic cures amid the waves, but the surge in self-confidence is easily evident.
"It's a thrill of feeling yourself in a situation where you have control and you are working with nature to get some pleasure and enjoyment, and that's what surfing is all about," says Harvey Weisenberg, 50-year veteran lifeguard in Long Beach, who has a 52-year-old developmentally disabled son. Weisenberg, also a state lawmaker, is one of the local founders of a program now called "Surf for All," which allows those who never dreamed of surfing the opportunity to "hang 10."
The group recently entertained participants in the Wounded Warriors program, which assists veterans injured in the wars in Iraq and Afghanistan.
"The feeling of riding a wave is nothing like anything else," says Cliff Skudin, who like his brother, Will, is a professional world-class surfer; both are stars of the surfing magazines. "You feel weightless; it's an amazing feeling to be rising above the waves."
Cliff Skudin, who has a master's degree in physical education, is another Surf for All founder. The program started with five autistic surfers in 2002, but now boasts more than 1,800 alumni.
"Smiles on the kids' faces and cheers from the parents is all I need," Cliff Skudin said when asked to explain why he became involved. "It's a different feeling that they've never had."
He recalls working with an autistic child several years ago who had never spoken. After riding a wave with Skudin, the child arrived back on the beach. "He said, `More, more, I want more.' And the family was just completely shocked."
"To see that was awesome."
The surfers and their coaches aren't the only ones benefiting.
"The adults that come just to see are moved, they have a different insight as to kids with disabilities immediately," says Mary Tatem, director of Pupil Personnel Services in the Long Beach school system. Special needs children from the school system have participated in a summer surfing program for several years, she said.
And the students? "They feel empowered because they're doing something what feels to them to be on their own."
Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at the Steven & Alexandra Cohen Children's Medical Center, notes there have been other types of novel approaches in dealing with children with autism, such as swimming with dolphins, but he warns surfing "is not a breakthrough in therapy."
He also sees few pitfalls.
"I don't see any worries about safety; there appears to be adequate one-on-one supervision," he said. "This is certainly something that parents can encourage and support. Anything you can do to show kids a good time, that's wonderful."
Another Surf for All founder, Jim Mulvaney, explains the concept began about a decade ago in California, where noted surf champ and instructor Izzy Paskowitz began putting autistic children on surfboards in a program called "Surfer's Healing."
Now surf schools in many locations include instruction for disabled children and adults.
"It's just taken off," Mulvaney said. "People with disabilities often don't have enough fun. And they're left out of things and they're often seen as being disabled rather than being abled."
Lisa Innella, director of Camp Abilities Long Island, said she is barred by privacy laws from describing the level of blindness of the students. Most ambled across the beach with little trouble, although some used canes.
"I just want these kids to be able to go out there and try for the first time and enjoy themselves," she said.
Michael Taylor, 11, of East Meadow, whose mother said he has "not much useable vision," fell into the water twice before triumphing on his board.
"I thought it was pretty cool," he exclaimed. "The best part was the third time I stood up on a surfboard."
And what did he learn from his coach, Skudin?
"He told me to pop up. Yep, that's what I did."
John Gilroy, a 14-year-old vision-impaired teen from West Islip, is awaiting hip replacement surgery, but that didn't stop him from commanding the waves.
"It was really cool. It was my first time surfing and even though I can't walk right, I can still go on the surfboard and take the wave," he said. "It was really cool, a really big rush, I guess."
British theatre troupe of people with intellectual disabilities presents musicals about their experiences
From Community Newswire in the UK:
Eight actors with learning disabilities will perform two musicals based on the experiences and challenges faced by others living with learning disabilities.
The Twisting Ducks Theatre Company has developed two musicals called Duck and What's Up Doc, using personal accounts gathered from interviews and workshops involving people with disabilities.
Both shows will be performed at a launch night on September 7 at the People's Theatre in Jesmond, from 7pm to 9.30pm.
Hundreds of adults with learning disabilities living in the North-east will be given the chance to watch the performances and see the life experiences and challenges they have faced transformed into two original musicals.
Both musicals aim to dispel misconceptions about adults with learning disabilities, and promote the need for dignity and respect.
Alison Cane, a member of The Twisting Ducks Theatre Company, said: "I am a lot more confident now because of all the work I have done for the Twisting Ducks Theatre Company.
"I know people want to listen to what I have to say and we want to get our voices and others with a learning disability heard.
"I am dead excited about the launch and feel very proud of the work we have all done."
Fellow member Kylie Wightman said: "Working with the Twisting Ducks has made me more confident.
"Sometimes I say I can't do things and maybe give up too easily, but with the Twisting Ducks I find that I just can't do that because we are a team and we all need to work together.
"Some people might think that people with learning disabilities can't do the things that we can do. We make people aware of the challenges that people with learning disabilities can face.
"Our plays make real changes to the way people with learning disabilities are treated within health care, housing and other services.
"The launch is going to be great, so we can show everyone the work we've done and how far we've come since we started as a theatre company."
Sameena Varris, another member, added: "I think our work is really good I'm proud of that. I am so excited about our launch.
"I can't think of anything I would rather do that be an actor in the Twisting Ducks."
Speaking about Twisting Ducks, Bill Norman, Valuing People co-ordinator for Newcastle Upon Tyne, said: "Their shows put the message of disability equality better than a thousand reports ever could."
The Twisting Ducks Theatre Company has been a registered charity since 2009. The company makes entertaining, accessible and informative drama about issues that are important to people with learning disabilities. It aims to raise awareness about the rights of people with learning disabilities and the challenges they face in a bid to inspire others and change society's attitude towards learning disabilities.
Eight actors with learning disabilities will perform two musicals based on the experiences and challenges faced by others living with learning disabilities.
The Twisting Ducks Theatre Company has developed two musicals called Duck and What's Up Doc, using personal accounts gathered from interviews and workshops involving people with disabilities.
Both shows will be performed at a launch night on September 7 at the People's Theatre in Jesmond, from 7pm to 9.30pm.
Hundreds of adults with learning disabilities living in the North-east will be given the chance to watch the performances and see the life experiences and challenges they have faced transformed into two original musicals.
Both musicals aim to dispel misconceptions about adults with learning disabilities, and promote the need for dignity and respect.
Alison Cane, a member of The Twisting Ducks Theatre Company, said: "I am a lot more confident now because of all the work I have done for the Twisting Ducks Theatre Company.
"I know people want to listen to what I have to say and we want to get our voices and others with a learning disability heard.
"I am dead excited about the launch and feel very proud of the work we have all done."
Fellow member Kylie Wightman said: "Working with the Twisting Ducks has made me more confident.
"Sometimes I say I can't do things and maybe give up too easily, but with the Twisting Ducks I find that I just can't do that because we are a team and we all need to work together.
"Some people might think that people with learning disabilities can't do the things that we can do. We make people aware of the challenges that people with learning disabilities can face.
"Our plays make real changes to the way people with learning disabilities are treated within health care, housing and other services.
"The launch is going to be great, so we can show everyone the work we've done and how far we've come since we started as a theatre company."
Sameena Varris, another member, added: "I think our work is really good I'm proud of that. I am so excited about our launch.
"I can't think of anything I would rather do that be an actor in the Twisting Ducks."
Speaking about Twisting Ducks, Bill Norman, Valuing People co-ordinator for Newcastle Upon Tyne, said: "Their shows put the message of disability equality better than a thousand reports ever could."
The Twisting Ducks Theatre Company has been a registered charity since 2009. The company makes entertaining, accessible and informative drama about issues that are important to people with learning disabilities. It aims to raise awareness about the rights of people with learning disabilities and the challenges they face in a bid to inspire others and change society's attitude towards learning disabilities.
VA changes will make it easier for Vietnam vets exposed to Agent Orange to apply for benefits
From The Federal Eye in The Washington Post:
More than 150,000 Vietnam War veterans may apply for benefits from the Department of Veterans Affairs in the next 18 months thanks to new regulations making it easier to compensate for health problems caused by exposure to the Vietnam-era defoliant Agent Orange.
The changes could result in payouts of about $42 billion in the next decade. But they could still face resistance from lawmakers concerned about the VA paying out claims for ailments that are common in elderly Americans anyway, despite military service.
Under the new regulations set for publication in Tuesday's Federal Register, VA will presume that veterans who served in Vietnam between Jan. 9, 1962, and May 7, 1975 were exposed to Agent Orange and will add three medical conditions -- hairy cell leukemia, Parkinson’s disease and ischemic heart disease -- to its list of disabilities presumed to have a connection to exposure to the herbicide.
VA also plans to review about 90,000 previously denied claims from veterans who previously sought benefits for Agent Orange-related health problems.
The changes could result in about $13 billion in benefits payments in the next year, VA Acting Undersecretary for Benefits Michael Walcoff said Saturday.
“There will be articles out there written by writers -- we’re working with a writer right now who’s very negative about this -- very negative about the fact it’s going to cost so much money,” Walcoff told attendees at the American Legion National Convention. “Very negative about the fact that anybody who was in country in Vietnam qualifies for this. That’s the kind of thinking that’s out there."
“The fact is we’re obeying the law," Walcoff told attendees. "The law says that anybody who was in country is entitled to the presumptions. Besides that, I believe that what we’re doing is the right thing to do. It’s what [VA Secretary Eric K. Shinseki] wants to do.”
Rick Weidman, director of government relations for Vietnam Veterans of America, also defended the high costs, saying they should be considered in the same context of the ongoing wars in Afghanistan and Iraq.
"We would make the point that many, many times the number of troops originally estimated have [traumatic brain injury] coming out of Iraq and Afghanistan," Weidman said. "Should we not then award it because it’s too many people.? It’s the same argument – an environmental wound is the same as a blast wound."
Congress included $13.4 billion for Agent Orange-related benefits in this year's $58 billion supplemental spending bill, but Sen. James Webb (D-Va.), a Vietnam veteran, has said that adding ischemic heart disease to VA's list of approved diseases could result in the department paying veterans for a disease they might have contracted anyway as they aged.
“I take a back seat to no one in my concern for our veterans. I have spent my entire adult life one way or the other involved in veterans law," Webb said in May. "But I do think we need to have practical, proper procedures and I do believe that the executive branch…needs to be held to an accountable standard.”
Webb sits on the Senate Veterans Affairs Committee, which is scheduled to hold a hearing on the new regulations on Sept. 23.
More than 150,000 Vietnam War veterans may apply for benefits from the Department of Veterans Affairs in the next 18 months thanks to new regulations making it easier to compensate for health problems caused by exposure to the Vietnam-era defoliant Agent Orange.
The changes could result in payouts of about $42 billion in the next decade. But they could still face resistance from lawmakers concerned about the VA paying out claims for ailments that are common in elderly Americans anyway, despite military service.
Under the new regulations set for publication in Tuesday's Federal Register, VA will presume that veterans who served in Vietnam between Jan. 9, 1962, and May 7, 1975 were exposed to Agent Orange and will add three medical conditions -- hairy cell leukemia, Parkinson’s disease and ischemic heart disease -- to its list of disabilities presumed to have a connection to exposure to the herbicide.
VA also plans to review about 90,000 previously denied claims from veterans who previously sought benefits for Agent Orange-related health problems.
The changes could result in about $13 billion in benefits payments in the next year, VA Acting Undersecretary for Benefits Michael Walcoff said Saturday.
“There will be articles out there written by writers -- we’re working with a writer right now who’s very negative about this -- very negative about the fact it’s going to cost so much money,” Walcoff told attendees at the American Legion National Convention. “Very negative about the fact that anybody who was in country in Vietnam qualifies for this. That’s the kind of thinking that’s out there."
“The fact is we’re obeying the law," Walcoff told attendees. "The law says that anybody who was in country is entitled to the presumptions. Besides that, I believe that what we’re doing is the right thing to do. It’s what [VA Secretary Eric K. Shinseki] wants to do.”
Rick Weidman, director of government relations for Vietnam Veterans of America, also defended the high costs, saying they should be considered in the same context of the ongoing wars in Afghanistan and Iraq.
"We would make the point that many, many times the number of troops originally estimated have [traumatic brain injury] coming out of Iraq and Afghanistan," Weidman said. "Should we not then award it because it’s too many people.? It’s the same argument – an environmental wound is the same as a blast wound."
Congress included $13.4 billion for Agent Orange-related benefits in this year's $58 billion supplemental spending bill, but Sen. James Webb (D-Va.), a Vietnam veteran, has said that adding ischemic heart disease to VA's list of approved diseases could result in the department paying veterans for a disease they might have contracted anyway as they aged.
“I take a back seat to no one in my concern for our veterans. I have spent my entire adult life one way or the other involved in veterans law," Webb said in May. "But I do think we need to have practical, proper procedures and I do believe that the executive branch…needs to be held to an accountable standard.”
Webb sits on the Senate Veterans Affairs Committee, which is scheduled to hold a hearing on the new regulations on Sept. 23.
Virginia says schools must provide behaviorial aides
From WSLS- TV in Va.
Dianne Jackson’s son Ronnie (pictured) just started eighth grade at Dan River Middle School — a tough time of transition for many students, but Ronnie also suffers from a form of autism.
Because of his Asperger’s, Ronnie needs a one-on-one behavioral aide to focus and perform well in school.
“The aides have been wonderful,” Jackson said. “It’s been a lifesaver for my son. He made honor roll and got into Junior Beta Club last year. My son is highly intelligent, it’s just keeping him focused on what he needs to do.”
But this spring, Jackson found out Ronnie was at risk of losing his aide because of changes in funding for that service.
Danville and Pittsylvania County schools learned this spring the local Community Policy and Management Board, which administered the state funding for behavioral aides to work in the schools, would no longer be funding those positions. Parents, worried about losing the needed help, showed up angry at school board meetings blaming the school systems for laying off those employees.
However, those aides were not employees of Danville and Pittsylvania County schools — they were contracted through local vendors, a service the community board paid for.
What changed this year is in January the state Department of Education clarified to school systems in a memo “all services and supports that are necessary to provide (a free and appropriate public education) … must be provided regardless of cost” and that school divisions maintain that responsibility.
“If a student needs a behavioral aide to remain in public school,” said Sherry Flanagan, director of the Pittsylvania County Department of Social Services and chairwoman of local board, “according to the Department of Education, it is the public school’s responsibility to provide that.”
However, the memo did not specifically address behavioral aides, leading to a delayed reaction from the schools in figuring out who should pay.
Jeff Early, assistant superintendent for support services and special education, said until this year, county schools were under the impression that funding for aides fell under the community board.
“At that time,” Early said, “it was understood that it was a local decision (how to fund the aides).”
To address the change for this year, county schools — which recently endured $8 million in budget cuts — used $455,000 in carryover money from 2009-10 to pay for 24 of the 60 previously filled aide positions, reducing the number through shifting staff and combining services.
Aides who were averaging $25,000 to $30,000 per year, according to Flanagan, had to apply for new positions with the schools at a minimum wage, or little more than $15,000 a year.
“We’ve hired the staff that we’ve needed and students are receiving the help that they need,” Early said. “… Before we did anything, we talked with all the parents that were involved and worked it out. It’s our responsibility and we are providing them.”
Bringing on the aides this year as hourly staff was a temporary solution, Early said, and the county would address future funding for aides on a case-by-case basis.
In Danville, Andy Thacker, director of exceptional children, said they too would hire their own personnel at an hourly rate to fill those needs. Last year the division had 33 aides, but Thacker said the city would hire about 20 part-time aides.
“We have to fund whatever is needed,” he said. “… We contacted all of our families at the end of last year that were affected as soon as we were made aware of how that transition was going to take place.”
Flanagan said in 2009-10 the community board spent $9 million on services in the county — $8.7 million on behavioral aides alone, second in the state only to Fairfax County. In Danville, the board spent more than $2 million on services. Comparatively, Flanagan said, Henry County spent about $500,000.
Those numbers led the state to clarify the use of CSA funds.
“We were never saying that the services were not needed,” she said. “We just determine whether or not we’re the appropriate place for the funds to come from. We take all our direction from Richmond.”
Flanagan said the schools would determine how many aides they needed and the localities would pay an 11 percent match of the cost, with the state paying the remaining 89 percent.
But with the clarification on whose responsibility those aides are, the schools will now have to pay all of the cost for those aides — potentially adding millions in required services to the already cash-strapped school divisions.
“We just want to do it right,” Flanagan said. “Ultimately the state has told us, if we spend money in a way we are not supposed to, ultimately the county could have to pay back all that money.”
Jackson is thrilled to have Ronnie’s aide, Steven Waller, back working with him — but it wasn’t without a fight, she said. As the district evaluated its aides on a case-by-case basis, Jackson said she was told that Ronnie did not need Waller anymore because he had been performing well in his evaluations and tests. But Ronnie needs continued support to continue to do well, she said.
“Nothing changed with my son,” Jackson said. “The only thing that changed was who was gonna pay for it … We did win that battle.
“I don’t care if Mr. Waller walks down the aisle with Ronnie getting his diploma,” she said, “as long as he graduates.”
Dianne Jackson’s son Ronnie (pictured) just started eighth grade at Dan River Middle School — a tough time of transition for many students, but Ronnie also suffers from a form of autism.
Because of his Asperger’s, Ronnie needs a one-on-one behavioral aide to focus and perform well in school.
“The aides have been wonderful,” Jackson said. “It’s been a lifesaver for my son. He made honor roll and got into Junior Beta Club last year. My son is highly intelligent, it’s just keeping him focused on what he needs to do.”
But this spring, Jackson found out Ronnie was at risk of losing his aide because of changes in funding for that service.
Danville and Pittsylvania County schools learned this spring the local Community Policy and Management Board, which administered the state funding for behavioral aides to work in the schools, would no longer be funding those positions. Parents, worried about losing the needed help, showed up angry at school board meetings blaming the school systems for laying off those employees.
However, those aides were not employees of Danville and Pittsylvania County schools — they were contracted through local vendors, a service the community board paid for.
What changed this year is in January the state Department of Education clarified to school systems in a memo “all services and supports that are necessary to provide (a free and appropriate public education) … must be provided regardless of cost” and that school divisions maintain that responsibility.
“If a student needs a behavioral aide to remain in public school,” said Sherry Flanagan, director of the Pittsylvania County Department of Social Services and chairwoman of local board, “according to the Department of Education, it is the public school’s responsibility to provide that.”
However, the memo did not specifically address behavioral aides, leading to a delayed reaction from the schools in figuring out who should pay.
Jeff Early, assistant superintendent for support services and special education, said until this year, county schools were under the impression that funding for aides fell under the community board.
“At that time,” Early said, “it was understood that it was a local decision (how to fund the aides).”
To address the change for this year, county schools — which recently endured $8 million in budget cuts — used $455,000 in carryover money from 2009-10 to pay for 24 of the 60 previously filled aide positions, reducing the number through shifting staff and combining services.
Aides who were averaging $25,000 to $30,000 per year, according to Flanagan, had to apply for new positions with the schools at a minimum wage, or little more than $15,000 a year.
“We’ve hired the staff that we’ve needed and students are receiving the help that they need,” Early said. “… Before we did anything, we talked with all the parents that were involved and worked it out. It’s our responsibility and we are providing them.”
Bringing on the aides this year as hourly staff was a temporary solution, Early said, and the county would address future funding for aides on a case-by-case basis.
In Danville, Andy Thacker, director of exceptional children, said they too would hire their own personnel at an hourly rate to fill those needs. Last year the division had 33 aides, but Thacker said the city would hire about 20 part-time aides.
“We have to fund whatever is needed,” he said. “… We contacted all of our families at the end of last year that were affected as soon as we were made aware of how that transition was going to take place.”
Flanagan said in 2009-10 the community board spent $9 million on services in the county — $8.7 million on behavioral aides alone, second in the state only to Fairfax County. In Danville, the board spent more than $2 million on services. Comparatively, Flanagan said, Henry County spent about $500,000.
Those numbers led the state to clarify the use of CSA funds.
“We were never saying that the services were not needed,” she said. “We just determine whether or not we’re the appropriate place for the funds to come from. We take all our direction from Richmond.”
Flanagan said the schools would determine how many aides they needed and the localities would pay an 11 percent match of the cost, with the state paying the remaining 89 percent.
But with the clarification on whose responsibility those aides are, the schools will now have to pay all of the cost for those aides — potentially adding millions in required services to the already cash-strapped school divisions.
“We just want to do it right,” Flanagan said. “Ultimately the state has told us, if we spend money in a way we are not supposed to, ultimately the county could have to pay back all that money.”
Jackson is thrilled to have Ronnie’s aide, Steven Waller, back working with him — but it wasn’t without a fight, she said. As the district evaluated its aides on a case-by-case basis, Jackson said she was told that Ronnie did not need Waller anymore because he had been performing well in his evaluations and tests. But Ronnie needs continued support to continue to do well, she said.
“Nothing changed with my son,” Jackson said. “The only thing that changed was who was gonna pay for it … We did win that battle.
“I don’t care if Mr. Waller walks down the aisle with Ronnie getting his diploma,” she said, “as long as he graduates.”
First tests of stem cell therapy nearing
From The Washington Post. In the picture, experimental stem cell treatments offered in China are luring American patients such as 9-year-old Kara Anderson, whose parents took her around the world to help treat her cerebral palsy.
Even as supporters of human embryonic stem cell research are reeling from last week's sudden cutoff of federal funding, another portentous landmark is quietly approaching: the world's first attempt to carefully test the cells in people.
Scientists are poised to inject cells created from embryonic stem cells into some patients with a progressive form of blindness and others with devastating spinal cord injuries. That's a welcome step for researchers eager to move from the laboratory to the clinic and for patients hoping for cures. But beyond being loathsome to those with moral objections to any research using cells from human embryos, the tests are worrying many proponents: Some argue that the experiments are premature, others question whether they are ethical, and many fear that the trials risk disaster for the field if anything goes awry.
"We desperately need to know how these cells are going to perform in the human setting," said John Gearhart, a stem cell pioneer at the University of Pennsylvania. "But are we transplanting cells that are going to cause tumors? Will they will stay where you put them and do what you want them to do?"
Supporters of these privately funded, government-sanctioned tests, including patients' advocates, bioethicists and officials at the companies sponsoring them, are confident that research has been exhaustively vetted. The Food and Drug Administration has demanded extensive experiments in the laboratory and on animals to provide evidence that the cells are safe enough to test in people and hold great promise.
"We're very optimistic," said Thomas B. Okarma, president and chief executive of Geron Corp. of Menlo Park, Calif., which after years of delay received a green light in July from the FDA to study patients partially paralyzed by spinal cord injuries. "If we're right, we'll revolutionize the treatment of many chronic diseases."
But some researchers fear that the stakes jumped even higher with the federal judge's decision blocking federal funding. If patients are hurt by the cells - or even if there's no hint the cells help - that could be a devastating blow just as scientists are scrambling for funding from private foundations and benefactors. They cite the case of Jesse Gelsinger, whose 1999 death from a gene therapy experiment set that once highly touted field back years.
"There's a lot of angst around these trials," said Evan Y. Snyder, director of the stem cell program at the Sanford-Burnham Medical Research Institute in San Diego. "There's going to be this perception that if the cells do not perform well, the entire field will be illegitimate."
Most of the apprehension focuses on the Geron trial. Safety worries - most prominently fears that the cells could cause tumors - prompted the FDA to repeatedly demand additional data from Geron, including most recently assurance cysts that developed in mice injected with the cells posed no threat.
"We jumped through a lot of hoops to convince a lot of audiences," Okarma said. No one wants another Jesse Gelsinger."
While Geron eventually hopes to test the cells on many patients the first trial will involve 10 partially paralyzed by a spinal cord injury in the previous one to two weeks. Surgeons will inject the first patient with about 2 million "oligodendrocyte progenitor cells," created from embryonic stem cells, in the hopes the cells will form a restorative coating around the damaged spinal cord. In tests in hundreds of rats, partially paralyzed animals walked.
The trial is designed primarily to ensure the cells are safe. But researchers will look for signs that the therapy restores sensation or enables patients to regain movement.
"If we were able to do that, it would be a phenomenally positive result," Okarma said.
Spinal cord injuries, however, are highly unpredictable and in many ways mysterious. Patients can often improve on their own, for example, which will make it difficult to evaluate whether the cells had any effect. Some wonder whether trauma victims who have so recently suffered a life-altering injury will agree to the experiments out of desperation without fully grasping the risks.
"Think of it this way: You are a healthy young person, you have had a terrible accident, you wake up in the hospital and are told that you will never walk again, that you will paralyzed for the rest of your life," Stanford University bioethicist David Magnus wrote in an e-mail. "Then you are told that there is a Phase I stem cell clinical trial that you are eligible for, but a decision needs to be made quickly. It would be hard to imagine that would be the optimal scenario from the point of view of informed consent."
In the meantime, officials at Advanced Cell Technology of Menlo Park, Calif., are hoping for the FDA's go-ahead to start possibly even sooner injecting 50,000 to 200,000 cells into the eyes of 12 patients suffering from Stargardt's macular dystrophy. Retinal pigmented epithelial cells, also made from human embryonic stem cells, should replace those ravaged by the progressive loss of eyesight, usually beginning in childhood. Studies in rats found the cells helped prevent further vision loss and even restored some sight. The company hopes the approach will work for many conditions, including the leading cause of blindness among the elderly.
"These diseases are devastating," said Robert Lanza, Advanced Cell Technology's chief scientific officer. "If we could make difference, it would be profoundly important."
Christopher Goodrich, 55, of Portland, Ore., whose eyes started failing at age 7 and now sees the world as if looking through a dense fog, hopes he might be one of the first patients.
"The thought of being able to regain some of my vision - to be able to go back to work, to ride a bike, to even be able to see the moon - would just be so awesome," Goodrich said.
But safety worries linger for both studies. Patients risk making their conditions worse - perhaps becoming fully paralyzed or losing whatever vision they have left.
"It's one thing if you are doing a treatment for a disease where the patient is going to die without treatment," Magnus said. "It's another if they could have a relatively good functioning life."
Okarma and Lanza said they are confident the therapies are safe. Only patients 18 or older will be initially considered for the eye study, and the treatment will only be administered to one eye to ensure the patients retain at least some vision in a worst-case scenario, Lanza said. Even if there are problems with the spinal cord damage victims, Geron's research shows the cells do not leave the site of the injury, indicating patients would not suffer any ill effects, Okarma said. Extra precautions, including assigning each subject an independent advocate, will guarantee that volunteers fully understand their decisions, he said.
"If human embryonic stem cells are going to be useful in treating humans, someone has to be the first one to try it," said Hank Greely, a Stanford lawyer and bioethicist. "They need to have their fingers crossed and hold their lucky rabbit's foot and be really careful in their preparations, because before you try something in humans you never know what's going to happen."
Even as supporters of human embryonic stem cell research are reeling from last week's sudden cutoff of federal funding, another portentous landmark is quietly approaching: the world's first attempt to carefully test the cells in people.
Scientists are poised to inject cells created from embryonic stem cells into some patients with a progressive form of blindness and others with devastating spinal cord injuries. That's a welcome step for researchers eager to move from the laboratory to the clinic and for patients hoping for cures. But beyond being loathsome to those with moral objections to any research using cells from human embryos, the tests are worrying many proponents: Some argue that the experiments are premature, others question whether they are ethical, and many fear that the trials risk disaster for the field if anything goes awry.
"We desperately need to know how these cells are going to perform in the human setting," said John Gearhart, a stem cell pioneer at the University of Pennsylvania. "But are we transplanting cells that are going to cause tumors? Will they will stay where you put them and do what you want them to do?"
Supporters of these privately funded, government-sanctioned tests, including patients' advocates, bioethicists and officials at the companies sponsoring them, are confident that research has been exhaustively vetted. The Food and Drug Administration has demanded extensive experiments in the laboratory and on animals to provide evidence that the cells are safe enough to test in people and hold great promise.
"We're very optimistic," said Thomas B. Okarma, president and chief executive of Geron Corp. of Menlo Park, Calif., which after years of delay received a green light in July from the FDA to study patients partially paralyzed by spinal cord injuries. "If we're right, we'll revolutionize the treatment of many chronic diseases."
But some researchers fear that the stakes jumped even higher with the federal judge's decision blocking federal funding. If patients are hurt by the cells - or even if there's no hint the cells help - that could be a devastating blow just as scientists are scrambling for funding from private foundations and benefactors. They cite the case of Jesse Gelsinger, whose 1999 death from a gene therapy experiment set that once highly touted field back years.
"There's a lot of angst around these trials," said Evan Y. Snyder, director of the stem cell program at the Sanford-Burnham Medical Research Institute in San Diego. "There's going to be this perception that if the cells do not perform well, the entire field will be illegitimate."
Most of the apprehension focuses on the Geron trial. Safety worries - most prominently fears that the cells could cause tumors - prompted the FDA to repeatedly demand additional data from Geron, including most recently assurance cysts that developed in mice injected with the cells posed no threat.
"We jumped through a lot of hoops to convince a lot of audiences," Okarma said. No one wants another Jesse Gelsinger."
While Geron eventually hopes to test the cells on many patients the first trial will involve 10 partially paralyzed by a spinal cord injury in the previous one to two weeks. Surgeons will inject the first patient with about 2 million "oligodendrocyte progenitor cells," created from embryonic stem cells, in the hopes the cells will form a restorative coating around the damaged spinal cord. In tests in hundreds of rats, partially paralyzed animals walked.
The trial is designed primarily to ensure the cells are safe. But researchers will look for signs that the therapy restores sensation or enables patients to regain movement.
"If we were able to do that, it would be a phenomenally positive result," Okarma said.
Spinal cord injuries, however, are highly unpredictable and in many ways mysterious. Patients can often improve on their own, for example, which will make it difficult to evaluate whether the cells had any effect. Some wonder whether trauma victims who have so recently suffered a life-altering injury will agree to the experiments out of desperation without fully grasping the risks.
"Think of it this way: You are a healthy young person, you have had a terrible accident, you wake up in the hospital and are told that you will never walk again, that you will paralyzed for the rest of your life," Stanford University bioethicist David Magnus wrote in an e-mail. "Then you are told that there is a Phase I stem cell clinical trial that you are eligible for, but a decision needs to be made quickly. It would be hard to imagine that would be the optimal scenario from the point of view of informed consent."
In the meantime, officials at Advanced Cell Technology of Menlo Park, Calif., are hoping for the FDA's go-ahead to start possibly even sooner injecting 50,000 to 200,000 cells into the eyes of 12 patients suffering from Stargardt's macular dystrophy. Retinal pigmented epithelial cells, also made from human embryonic stem cells, should replace those ravaged by the progressive loss of eyesight, usually beginning in childhood. Studies in rats found the cells helped prevent further vision loss and even restored some sight. The company hopes the approach will work for many conditions, including the leading cause of blindness among the elderly.
"These diseases are devastating," said Robert Lanza, Advanced Cell Technology's chief scientific officer. "If we could make difference, it would be profoundly important."
Christopher Goodrich, 55, of Portland, Ore., whose eyes started failing at age 7 and now sees the world as if looking through a dense fog, hopes he might be one of the first patients.
"The thought of being able to regain some of my vision - to be able to go back to work, to ride a bike, to even be able to see the moon - would just be so awesome," Goodrich said.
But safety worries linger for both studies. Patients risk making their conditions worse - perhaps becoming fully paralyzed or losing whatever vision they have left.
"It's one thing if you are doing a treatment for a disease where the patient is going to die without treatment," Magnus said. "It's another if they could have a relatively good functioning life."
Okarma and Lanza said they are confident the therapies are safe. Only patients 18 or older will be initially considered for the eye study, and the treatment will only be administered to one eye to ensure the patients retain at least some vision in a worst-case scenario, Lanza said. Even if there are problems with the spinal cord damage victims, Geron's research shows the cells do not leave the site of the injury, indicating patients would not suffer any ill effects, Okarma said. Extra precautions, including assigning each subject an independent advocate, will guarantee that volunteers fully understand their decisions, he said.
"If human embryonic stem cells are going to be useful in treating humans, someone has to be the first one to try it," said Hank Greely, a Stanford lawyer and bioethicist. "They need to have their fingers crossed and hold their lucky rabbit's foot and be really careful in their preparations, because before you try something in humans you never know what's going to happen."
In Mississippi, Medicaid drops children with Down syndrome from state assistance
From The Clarion Ledger in Miss.:
Medicaid officials have begun to remove children with Down syndrome from the state rolls, leaving parents to find ways to pay for expensive physical, speech and occupational therapy.
Some parents say their children had been in Medicaid's Disabled Child Living at Home program almost since birth before being removed.
Other parents say their children should have been approved for coverage but were rejected.
Medicaid officials insist their rules haven't changed. The form they use today is the same one they used in 1993.
They defend their work in assessing children, pointing to an overall error rate as less than 1 percent - among the best in the nation.
"We want to ensure that those who are on the program are those who really need the assistance," said Francis Rullan, director of communications for Medicaid in Mississippi. "If there are individuals on the program who shouldn't be, the state could be required to repay the federal government for expenditures made on their behalf."
Mississippi's Disabled Child program, which has no income-eligibility requirement, rose from 939 in January 2007 to 1,251 in December. It was at 1,176 in July.
The decline comes at a time when Medicaid officials are scrambling to save money, facing an estimated $34 million shortfall.
Deborah Edmondson of Jackson and her husband, Stephen, whose daughter was born a year ago with Down syndrome, described their experience with Medicaid as frustrating. "We have provided tons of paperwork," she said. "We went to every single doctor and got paperwork and hand-delivered it to Medicaid."
She was denied coverage.
"My daughter is in therapy three times a week," Edmondson said. "And I live at UMC (University of Mississippi Medical Center)."
Stephen Edmondson said the hearing officer told him she was going to recommend his daughter be approved.
A month later, the couple received a rejection letter. They now are suing.
"The Edmondsons' recollection of statements made at the hearing is inaccurate, and we will prove that," Rullan said. "We look forward to defending our position in court if necessary, but we are also open to more amicable alternatives."
Medicaid officials acknowledge the language in their documents is confusing.
According to federal regulations, a child with Down syndrome must require the same level of care provided in a hospital or nursing home to qualify.
"Who does qualify for that unless the child has a feeding tube?" asked Bill Pittman of Hattiesburg, whose 4-year-old daughter was removed from the rolls. She had been on the rolls since she was 3 months old.
In a June 28 letter, Medicaid official Pam Commander wrote, "There is no evidence this child requires extensive medical care in the home."
Pittman said the interpretation of regulations lead parents to a Catch-22. If therapists and parents work hard and children with Down syndrome improve, "they no longer meet the standard of care required," he said. "If they're not getting better, then Medicaid won't pay because they're showing no sign of improvement."
Mary Troupe, executive director for the Mississippi Coalition for Citizens With Disabilities, which has been working with families, said Medicaid officials need to do a better job of explaining to doctors what is required.
"Here these parents are doing what they've always done, they're reupping, and all of a sudden they get a letter saying your child doesn't qualify," she said. "You haven't told the doctors, and you haven't told the parents."
Many parents give up rather than fight, she said.
Tye Burnham of Brandon said her daughter, Isabella, who turns 7 next month, was kicked off the rolls because she had to be getting "the kind of care like she would get in a nursing home."
"It didn't seem age appropriate to me," Burnham said.
Her daughter since has been reinstated, something she's grateful for because physical and speech therapy bills alone run more than $500 a month. "We really couldn't afford it," she said.
Jackie Wansley of Jackson still hopes to get her 6-year-old daughter back on the rolls.
She said she doesn't blame Medicaid. She never received the reapplication form because she moved.
Medicaid officials have asked her for a psychological exam - something she said they never requested before this year.
She said she's unable to afford that exam, already having to pay her child's doctor $300 to treat strep and an ear infection.
She said her daughter needs additional speech and occupational therapy and is unable to get it in school.
Rosemary Moody of Philadelphia said her son, Andrew, first qualified for the Disabled Child program when he was 3 months old. Now he's 10.
She said she didn't know her son had been removed from the rolls until she went to get him new glasses. He has crossed eyes, and one eye shakes, she said. "I never received a letter saying he was kicked off," she said.
She has talked with Medicaid officials, who have told her a psychologist must examine her son and do an IQ test.
She said she can't afford the bill for the psychologist, much less more doctors, because her son has a history of pneumonia and dental issues.
"I don't know what we're going to do," she said. "We're going to have to leave it in the Lord's hands."
Medicaid officials have begun to remove children with Down syndrome from the state rolls, leaving parents to find ways to pay for expensive physical, speech and occupational therapy.
Some parents say their children had been in Medicaid's Disabled Child Living at Home program almost since birth before being removed.
Other parents say their children should have been approved for coverage but were rejected.
Medicaid officials insist their rules haven't changed. The form they use today is the same one they used in 1993.
They defend their work in assessing children, pointing to an overall error rate as less than 1 percent - among the best in the nation.
"We want to ensure that those who are on the program are those who really need the assistance," said Francis Rullan, director of communications for Medicaid in Mississippi. "If there are individuals on the program who shouldn't be, the state could be required to repay the federal government for expenditures made on their behalf."
Mississippi's Disabled Child program, which has no income-eligibility requirement, rose from 939 in January 2007 to 1,251 in December. It was at 1,176 in July.
The decline comes at a time when Medicaid officials are scrambling to save money, facing an estimated $34 million shortfall.
Deborah Edmondson of Jackson and her husband, Stephen, whose daughter was born a year ago with Down syndrome, described their experience with Medicaid as frustrating. "We have provided tons of paperwork," she said. "We went to every single doctor and got paperwork and hand-delivered it to Medicaid."
She was denied coverage.
"My daughter is in therapy three times a week," Edmondson said. "And I live at UMC (University of Mississippi Medical Center)."
Stephen Edmondson said the hearing officer told him she was going to recommend his daughter be approved.
A month later, the couple received a rejection letter. They now are suing.
"The Edmondsons' recollection of statements made at the hearing is inaccurate, and we will prove that," Rullan said. "We look forward to defending our position in court if necessary, but we are also open to more amicable alternatives."
Medicaid officials acknowledge the language in their documents is confusing.
According to federal regulations, a child with Down syndrome must require the same level of care provided in a hospital or nursing home to qualify.
"Who does qualify for that unless the child has a feeding tube?" asked Bill Pittman of Hattiesburg, whose 4-year-old daughter was removed from the rolls. She had been on the rolls since she was 3 months old.
In a June 28 letter, Medicaid official Pam Commander wrote, "There is no evidence this child requires extensive medical care in the home."
Pittman said the interpretation of regulations lead parents to a Catch-22. If therapists and parents work hard and children with Down syndrome improve, "they no longer meet the standard of care required," he said. "If they're not getting better, then Medicaid won't pay because they're showing no sign of improvement."
Mary Troupe, executive director for the Mississippi Coalition for Citizens With Disabilities, which has been working with families, said Medicaid officials need to do a better job of explaining to doctors what is required.
"Here these parents are doing what they've always done, they're reupping, and all of a sudden they get a letter saying your child doesn't qualify," she said. "You haven't told the doctors, and you haven't told the parents."
Many parents give up rather than fight, she said.
Tye Burnham of Brandon said her daughter, Isabella, who turns 7 next month, was kicked off the rolls because she had to be getting "the kind of care like she would get in a nursing home."
"It didn't seem age appropriate to me," Burnham said.
Her daughter since has been reinstated, something she's grateful for because physical and speech therapy bills alone run more than $500 a month. "We really couldn't afford it," she said.
Jackie Wansley of Jackson still hopes to get her 6-year-old daughter back on the rolls.
She said she doesn't blame Medicaid. She never received the reapplication form because she moved.
Medicaid officials have asked her for a psychological exam - something she said they never requested before this year.
She said she's unable to afford that exam, already having to pay her child's doctor $300 to treat strep and an ear infection.
She said her daughter needs additional speech and occupational therapy and is unable to get it in school.
Rosemary Moody of Philadelphia said her son, Andrew, first qualified for the Disabled Child program when he was 3 months old. Now he's 10.
She said she didn't know her son had been removed from the rolls until she went to get him new glasses. He has crossed eyes, and one eye shakes, she said. "I never received a letter saying he was kicked off," she said.
She has talked with Medicaid officials, who have told her a psychologist must examine her son and do an IQ test.
She said she can't afford the bill for the psychologist, much less more doctors, because her son has a history of pneumonia and dental issues.
"I don't know what we're going to do," she said. "We're going to have to leave it in the Lord's hands."
UK Disability Studies conference to webcast keynote speakers Sept. 7-9
From the Disability Studies conference website. (Thanks to the 32 Days Remaining blog for the tip.)
The fifth international disability studies conference will be taking place at Lancaster University, UK, on Tuesday 7th - Thursday 9th September 2010.
Confirmed plenary speakers are Liz Crow, Caroline Gooding, Ruth Gould, Alana Officer and Adolf Ratzka.
Over 140 paper and 20 poster presentations have been accepted.
The conference will provide a live webcast of the plenary sessions. This can be viewed at http://www.lancs.ac.uk/iss/digital/disability/.
Here are bios of the plenary speakers:
Liz Crow: Writer, director and producer of various Roaring Girl productions
Liz is a writer-director working with film, audio and text. Interested in drama, life stories and experimental work, she is drawn to the potential of storytelling to trigger change. Described as “a director of real visual flair”, her work has been praised for its ability “to get under the skin of a subject”. Liz’s work has shown at Tate Modern and the British Film Institute, as well as on television and at festivals internationally. Through a four-year NESTA (National Endowment for Science, Technology and the Arts) fellowship, she explored ways to combine her creative practice and political activism. Liz is a graduate of the Skillset Guiding Lights scheme where she was mentored by Peter Cattaneo (The Full Monty).
Caroline Gooding: Equality Consultant and Special Adviser to RADAR
Caroline Gooding, is an Equality Consultant and Special Adviser to RADAR. Formerly Director of Diversity Works for London, and Special Advisor to the Disability Rights Commission where she led on the Disability Equality Duty, Goods and Services and Legislative Change. She is qualified and has practiced as a solicitor. Caroline is a long term disability rights activist and for more than ten years was Chair of the Trade Union Disability Alliance.
Her publications include Disability Rights in Europe, from theory to practice Essays in European Law (2005); Blackstone’s Guide to the Disability Discrimination Act (1995); Enabling Acts Disabling Laws, Disability Rights in Britain and the United States (1994); Lesbian and Gay Legal Handbook (1992). She has also published articles on disability and equality issues in Tolleys and Equal Opportunities Review.
Ruth Gould: Chief Executive Officer DaDa
"Deaf and Disability Arts are important because they allow us to make others think in a different way, breaking through perceptions and stereotypes in order to affirm our place in society."
Ruth trained in performance arts, speech & drama, dance and mime at Liverpool Theatre School. Ruth has led workshops in Mime, Movement and Drama, and developed full-scale theatre productions. From 1992 Ruth has worked in arts administration and management including; business development for artists in the Creative Industries sector, managing start-up funds for artists, developing Disability Arts projects, and now, CEO of DaDa.
Ruth is passionate about Disability and Deaf arts being celebrated as cultural diversities in their own right. Ruth is also a board member of Liverpool 2008 Culture Company, Vice Chair of The Bluecoat Arts Centre, a council member with Arts Council England North West and co-opted Member of National Liverpool Museums Public Services Committee.
Alana Officer: Coordinator for Disability and Rehabilitation, WHO
Alana Officer is a native of New Zealand. She holds a diploma in Applied Science (Podiatric Medicine) from the Institute of Technology in Sydney, Australia; a Master's degree in Applied Science (research) from the University of Sydney, Australia; and a Masters degree in Public Health from the London School of Hygiene and Tropical Medicine (LSHTM). Prior to joining WHO in July 2006, Ms Officer held a number of technical and managerial positions working on disability, rehabilitation and development in West and Central Africa, Europe, South Asia and the Western Pacific. Ms Officer was the Country Director for Handicap International (HI) in India.
Alana Officer joined WHO in July 2006, and is now Coordinator for the Disability and Rehabilitation Team. She oversees WHO's work on disability and rehabilitation related to policies, medical care and rehabilitation, community-based rehabilitation, assistive devices and technologies, and capacity building. She is the executive editor of the World report on disability and rehabilitation due for release in 2009
Adolf Ratzka: Activist for Independent Living
Adolf Ratzka is an internationally renowned activist for independent living. He is known for leading the Swedish Independent Living movement. He set up the pilot project on personal assistance, which was to become the model for the Swedish Personal Assistance Act of 1994. The then Minister of Social Affairs, Bengt Westerberg, invited Adolf to Parliament when the Act made into law. Adolf was the founding chair of ENIL, the European Network on Independent Living, which works for disabled citizens’ personal and political power, for self-determination and against discrimination.
In 1999 he was recognized by TIME magazine as European visionary for the new millennium, mainly for his pioneering work for cash payments replacing services in kind thereby promoting disabled people’s right to self-determination and freedom of choice. Adolf received the European Citizen Award from the European Anti-Discrimination Council in 2008. Also in November 2008 he led an international conference to celebrate twenty-five years of independent living in Sweden.
The fifth international disability studies conference will be taking place at Lancaster University, UK, on Tuesday 7th - Thursday 9th September 2010.
Confirmed plenary speakers are Liz Crow, Caroline Gooding, Ruth Gould, Alana Officer and Adolf Ratzka.
Over 140 paper and 20 poster presentations have been accepted.
The conference will provide a live webcast of the plenary sessions. This can be viewed at http://www.lancs.ac.uk/iss/digital/disability/.
Here are bios of the plenary speakers:
Liz Crow: Writer, director and producer of various Roaring Girl productions
Liz is a writer-director working with film, audio and text. Interested in drama, life stories and experimental work, she is drawn to the potential of storytelling to trigger change. Described as “a director of real visual flair”, her work has been praised for its ability “to get under the skin of a subject”. Liz’s work has shown at Tate Modern and the British Film Institute, as well as on television and at festivals internationally. Through a four-year NESTA (National Endowment for Science, Technology and the Arts) fellowship, she explored ways to combine her creative practice and political activism. Liz is a graduate of the Skillset Guiding Lights scheme where she was mentored by Peter Cattaneo (The Full Monty).
Caroline Gooding: Equality Consultant and Special Adviser to RADAR
Caroline Gooding, is an Equality Consultant and Special Adviser to RADAR. Formerly Director of Diversity Works for London, and Special Advisor to the Disability Rights Commission where she led on the Disability Equality Duty, Goods and Services and Legislative Change. She is qualified and has practiced as a solicitor. Caroline is a long term disability rights activist and for more than ten years was Chair of the Trade Union Disability Alliance.
Her publications include Disability Rights in Europe, from theory to practice Essays in European Law (2005); Blackstone’s Guide to the Disability Discrimination Act (1995); Enabling Acts Disabling Laws, Disability Rights in Britain and the United States (1994); Lesbian and Gay Legal Handbook (1992). She has also published articles on disability and equality issues in Tolleys and Equal Opportunities Review.
Ruth Gould: Chief Executive Officer DaDa
"Deaf and Disability Arts are important because they allow us to make others think in a different way, breaking through perceptions and stereotypes in order to affirm our place in society."
Ruth trained in performance arts, speech & drama, dance and mime at Liverpool Theatre School. Ruth has led workshops in Mime, Movement and Drama, and developed full-scale theatre productions. From 1992 Ruth has worked in arts administration and management including; business development for artists in the Creative Industries sector, managing start-up funds for artists, developing Disability Arts projects, and now, CEO of DaDa.
Ruth is passionate about Disability and Deaf arts being celebrated as cultural diversities in their own right. Ruth is also a board member of Liverpool 2008 Culture Company, Vice Chair of The Bluecoat Arts Centre, a council member with Arts Council England North West and co-opted Member of National Liverpool Museums Public Services Committee.
Alana Officer: Coordinator for Disability and Rehabilitation, WHO
Alana Officer is a native of New Zealand. She holds a diploma in Applied Science (Podiatric Medicine) from the Institute of Technology in Sydney, Australia; a Master's degree in Applied Science (research) from the University of Sydney, Australia; and a Masters degree in Public Health from the London School of Hygiene and Tropical Medicine (LSHTM). Prior to joining WHO in July 2006, Ms Officer held a number of technical and managerial positions working on disability, rehabilitation and development in West and Central Africa, Europe, South Asia and the Western Pacific. Ms Officer was the Country Director for Handicap International (HI) in India.
Alana Officer joined WHO in July 2006, and is now Coordinator for the Disability and Rehabilitation Team. She oversees WHO's work on disability and rehabilitation related to policies, medical care and rehabilitation, community-based rehabilitation, assistive devices and technologies, and capacity building. She is the executive editor of the World report on disability and rehabilitation due for release in 2009
Adolf Ratzka: Activist for Independent Living
Adolf Ratzka is an internationally renowned activist for independent living. He is known for leading the Swedish Independent Living movement. He set up the pilot project on personal assistance, which was to become the model for the Swedish Personal Assistance Act of 1994. The then Minister of Social Affairs, Bengt Westerberg, invited Adolf to Parliament when the Act made into law. Adolf was the founding chair of ENIL, the European Network on Independent Living, which works for disabled citizens’ personal and political power, for self-determination and against discrimination.
In 1999 he was recognized by TIME magazine as European visionary for the new millennium, mainly for his pioneering work for cash payments replacing services in kind thereby promoting disabled people’s right to self-determination and freedom of choice. Adolf received the European Citizen Award from the European Anti-Discrimination Council in 2008. Also in November 2008 he led an international conference to celebrate twenty-five years of independent living in Sweden.
Disabled workers at Social Security Admin. move forward with class-action lawsuit
From The Baltimore Sun:
A group of disabled workers is moving forward with a class-action lawsuit against the Social Security Administration alleging the federal agency discriminates against employees with disabilities by denying or limiting promotions.
An office of the U.S. Equal Employment Opportunity Commission on Aug. 25 affirmed a 2008 decision by an EEOC administrative judge that certified the case as a class action, attorneys for the plaintiffs said Monday. The lawsuit seeks compensatory and other damages as well as changes in policies and procedures that will improve career opportunities for disabled employees, according attorneys for the plaintiffs.
The federal agency could not be reached August 30 for comment.
The plaintiffs, roughly 2,000 current and former Social Security employees with disabilities, include those who applied for promotions on or after Aug. 22, 2005, and appeared on a government "best qualified" list but were denied promotions. Their disabilities include deafness, blindness, missing extremities, partial or complete paralysis, convulsive disorders, mental retardation, mental illness and conditions affecting limbs or spine.
Ronald Jantz, a deaf Social Security employee who initially filed the lawsuit, has worked for the agency for more than 20 years and repeatedly made the "best qualified" list when applying numerous times for promotions.
"Nonetheless, he has never been promoted during his entire, 20-year career," said Dan Goldstein, a partner with Brown Goldstein & Levy LLP in Baltimore, one of the firms representing the plaintiffs. "Unhappily, what I am describing … is not peculiar to Mr. Jantz but is an experience that many Social Security employees with disabilities have experienced."
Jantz, a management analyst from Woodlawn, said in a statement he hopes the case brings a change in policies.
"I brought this lawsuit to bring about change necessary to ensure that employees with targeted disabilities receive the same promotions and career advancement opportunities as non-disabled employees," he said.
An administrative judge with the EEOC certified the case as a class action on Oct. 8, 2008. Social Security appealed that decision in December 2008. Last week, the EEOC's Office of Federal Operations, the commission's appellate unit, affirmed the administrative judge's decision. The case will now be remanded to an administrative judge for trial.
A group of disabled workers is moving forward with a class-action lawsuit against the Social Security Administration alleging the federal agency discriminates against employees with disabilities by denying or limiting promotions.
An office of the U.S. Equal Employment Opportunity Commission on Aug. 25 affirmed a 2008 decision by an EEOC administrative judge that certified the case as a class action, attorneys for the plaintiffs said Monday. The lawsuit seeks compensatory and other damages as well as changes in policies and procedures that will improve career opportunities for disabled employees, according attorneys for the plaintiffs.
The federal agency could not be reached August 30 for comment.
The plaintiffs, roughly 2,000 current and former Social Security employees with disabilities, include those who applied for promotions on or after Aug. 22, 2005, and appeared on a government "best qualified" list but were denied promotions. Their disabilities include deafness, blindness, missing extremities, partial or complete paralysis, convulsive disorders, mental retardation, mental illness and conditions affecting limbs or spine.
Ronald Jantz, a deaf Social Security employee who initially filed the lawsuit, has worked for the agency for more than 20 years and repeatedly made the "best qualified" list when applying numerous times for promotions.
"Nonetheless, he has never been promoted during his entire, 20-year career," said Dan Goldstein, a partner with Brown Goldstein & Levy LLP in Baltimore, one of the firms representing the plaintiffs. "Unhappily, what I am describing … is not peculiar to Mr. Jantz but is an experience that many Social Security employees with disabilities have experienced."
Jantz, a management analyst from Woodlawn, said in a statement he hopes the case brings a change in policies.
"I brought this lawsuit to bring about change necessary to ensure that employees with targeted disabilities receive the same promotions and career advancement opportunities as non-disabled employees," he said.
An administrative judge with the EEOC certified the case as a class action on Oct. 8, 2008. Social Security appealed that decision in December 2008. Last week, the EEOC's Office of Federal Operations, the commission's appellate unit, affirmed the administrative judge's decision. The case will now be remanded to an administrative judge for trial.
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