Saturday, February 27, 2010

In Special Olympics event, 400 children rally against R-word

From The Southtown Star in Illinois. In the picture, T.J. Moore holds a sign with a pledge regarding the use of the word retard, during an assembly called "Spread the word to end the word retard", at Mt. Greenwood School in Chicago.

Addressing an auditorium of some 400 children at Mount Greenwood School on Feb. 26, Jennifer Marcello dropped the "R" word - retarded.

Not surprisingly in a room packed with first- through fourth-graders, an outbreak of giggling erupted.

Two rows of students who compete in the Special Olympics Young Athletes program did not laugh, and neither did the older children from the special needs class.

"It's not a funny word. It's what people say when they want to make fun of other people," said Marcello, who manages Illinois' young athletes program for children ages 2 to 7.

Special Olympics representatives and athletes are touring schools on behalf of a national campaign to stomp out use of the "R" word. A group of seventh-graders also took the Mount Greenwood stage Feb. 26, performing a series of one-minute skits highlighting why the word is hurtful.

Controversy surrounding use of the word made national headlines last month when it was reported that White House Chief of Staff Rahm Emanuel referred to a group of liberal activists as "(.......) retarded." Emanuel quickly apologized and agreed to sign a pledge to not use the word.

So far, more than 72,000 people have signed the pledge at The goal is to reach 100,000.

Thomas Strack, 38, of Palos Heights, said he frequently was taunted by the word as a junior high student. Friday was the first time that Strack, who is on the Special Olympics Illinois Board of Directors, publicly spoke out against use of the word.

"It's time for a change," said Strack, who has Down syndrome. "Spread the word to end the word. It would mean so much to so many people."

After discovering that their son Jack had Down syndrome, Special Olympics coach Brook Klawitter said she and her husband worried that he would be teased and wouldn't have friends, she told the schoolchildren. Now an outgoing 4-year-old, Jack has lots of friends, loves to play ball and can spell his own name, she said.

"Why is it so important to spread the word to end the word? It's because the 'R' word is hurtful to him. And it goes back to all (our) fears," Klawitter said.

The national campaign began in earnest last winter at the Special Olympics World Winter Games in Idaho, when a group of athletes asked the organization to remove the word "mentally retarded" from its literature.

Since then, legislators across the country have sponsored measures to purge the word from the law books. A Maryland congresswoman has sponsored a measure in the U.S. House, and similar efforts are under way at statehouses in West Virginia, Washington state and Idaho, according to The Associated Press.

Illinois still uses the terminology, said Tom Green, spokesman for the state human services department.

The American Psychiatric Association has also proposed changing the diagnostic term "mental retardation" to "intellectual disability."

Blind skier, who was set to be first person to compete in Winter Olympics, Paralympics, won't ski for Canada

From The Associated Press:

WHISTLER, British Columbia -- A legally blind Canadian cross-country skier who was poised to become the first winter sports athlete to compete in both the Paralympics and the Olympics will not ski Feb. 28, a team spokesman said.

Brian McKeever was supposed to compete in the 50-kilometer mass start classic race. The 30-year-old suffers from a degenerative eye condition knows as Stargardt's disease, and received international praise when he was named to the Canadian team.

A team spokesman said in an e-mail to the Canadian Press that McKeever would not start. Instead, the team will race Alex Harvey, Ivan Babikov, Devon Kershaw and George Grey. Under International Ski Federation rules, the team can only enter four skiers.

"No start for Brian," wrote spokesman Chris Dornan.

The team's coaches have said they would decide who raced based on ability. Coach Inge Braten said the other four competitors are faster.

"Normally all four are faster than Brian ... They can fight for a medal, all four of them," Braten said.

McKeever has explained his condition as permanent "flashbulb eye," similar to the blur that appears in a person's vision after posing for a picture. But he still has his peripheral vision, so he can see what he needs to by looking around it.

In Paralympic competitions, he relied on a guide on the course who went ahead of him and showed him the way. Without a guide at the Olympics, he had planned to find a skier of similar speed to follow.

Canadian research shows clowns may be a way to reach nonverbal children

From The Globe & Mail in Toronto:

Imagine never knowing how a loved one was feeling, what they wanted to say or if they could even hear you. For parents of children with severe disabilities, it’s an all too real scenario filled with frustrating questions and too few answers.

But some Toronto researchers hope science will one day shed light on those questions, and are taking small steps toward giving a voice to children who don’t have one.

A team of researchers at Bloorview Kids Rehab, the largest children’s rehabilitation hospital in the country, have discovered that children with severe disabilities, including some who can’t communicate physically or verbally, reacted physiologically when watching a performance by a clown.

They found that non-communicative and other disabled children had changes in heart and breathing rates, skin temperature and sweat levels during 10-minute visits with therapeutic clowns. The children didn’t have the same reaction when watching a children’s television program, which demonstrates an ability to perceive their environment and make different responses depending on the situation they’re in, according to the researchers.

It’s a discovery that could eventually help open communication channels with people who have trouble communicating physically or verbally. And it also provides some validation for families who have always been convinced their loved one is present mentally, but unable to show it.

“The parents just want to know that they’re there,” said Stefanie Blain, a PhD student at Bloorview Kids and one of the study’s authors. “Getting a…physiological response to something in the environment is an incredible sign because they’re not just bodies in the bed, they are perceiving their environment, they are responding to their environment.”

The findings were collected and published online earlier this month in the journal Evidence-based Complementary and Alternative Medicine.

Therapeutic clowns, a group of trained professionals who work at Bloorview and a handful of other hospitals across Canada, entertain children and also design performances to help provide patients with a sense of control while they’re in the hospital.

The study was actually launched after one of the therapeutic clowns at Bloorview approached researchers with the idea of trying to determine what type of effect they had on patients in order to improve and enhance their performances.

“It just really fascinated me and I thought it’s a great opportunity for this profession,” said Jamie Burnett, a therapeutic clown who has been at Bloorview for several years.

The number of children involved in the study is small. And it’s difficult, if not impossible, for researchers to determine at this point exactly what the physiological responses mean.

But the ability to demonstrate that profoundly disabled children who can’t communicate can react to physical stimuli around them holds major potential for future breakthroughs.

“What we hope is this gives us the key to unlock the thoughts of these children,” Ms. Blain said.

There were eight Bloorview patients involved in the study, ranging in age from four to 21 and living with conditions such as major brain injuries, neuromuscular disorders or severe cerebral palsy. While five of the patients could speak and use facial expressions, there were two patients who couldn’t speak and one who was unable to communicate in any way.

After studying the group for four days, the researchers found a marked physiological response from the patients, even among those who couldn’t speak, when they had 10-minute visits by the therapeutic clowns. In fact, researchers thought the non-communicative patient was asleep when the clown was present, but they could see through changes in heart rate, body temperature and other physiological markers that the child was responding to the clown.

Researchers also measured the response to a children’s television show and found patients didn’t have the same reaction.

“We’re a long way off, but the idea that you might be able to tap into and measure a person’s physiological responses and use that information to determine their preferences for them to be able to potentially control those responses to indicate yes and no has wide-reaching implications for how we might be able to just open the doors for everybody to communicate,” said Shauna Kingsnorth, post-doctoral fellow in the participation and inclusion research at the hospital’s Bloorview Research Institute.

Haiti's amputees languish without resources, support

From The St. Petersburg Times in Fla.:

FOND PARISIEN, Haiti — In this land of amputees, hope is a metal crutch.

You see them reflecting the sun by day and car headlights by night, as people hoist themselves along roads, thankful to be vertical. Gleaming Vs of aluminum poke out from rice bags and plastic jugs on tap-tap roofs. They lie in truck beds among bundles of cane and wood strips.

What you don't see are artificial limbs.

A little more than a month has passed since a catastrophic earthquake killed an estimated 230,000 people and made amputees of some 4,000 survivors. Those victims are discovering that a rehabilitative process that under less dire circumstances would have begun almost immediately after surgery has barely started for them. And some are discovering that process might never start at all.

Mackendy Francois uses his crutches to catapult himself down a dirt path in a refugee camp near the border of the Dominican Republic, which is home to over 250 patients, most of them amputees. Nearby, Mona Isma watches from a wheelchair.

Of the two, Francois, 22, is the lucky one because his below-the-knee amputation makes him a likely candidate for a prosthetic leg.

"I'm making myself strong for a prosthesis to get my job at the T-shirt factory back again," he said.

But Isma, 38, had a different view: "I know it is bad for my future that my amputation is high."

In this world of earthquake injuries, hierarchies form quickly. A crushed limb is enviable because the limb is still intact. A below-the-knee amputation is preferable to a mid-thigh because of the knee's ability to control a prosthesis. What was shame over a partial leg amputation only a month ago has turned into the promise of an artificial limb, if the leg cut isn't too high.

"At least I have one leg. Some people lost both," said Isma, placing herself in the hierarchy.

The fate of people like Francois and Isma may rest in the hands of Handicap International, a French-based charity charged by the UN with bringing nonprofit agencies from around the world together to help people with limb injuries. By mid February, about 250 doctors, rehabilitation technicians and organizers connected to Handicap International fanned out across Haiti looking for amputees and treating them.

They check for infections and hand out crutches and walkers. They teach strengthening exercises and give pep talks. Temporary prosthetics, which just became available on a small scale in Port-au-Prince on Thursday, look like plastic cups connected to a metal pole with a rubber stopper for a foot.

"I hope to get one soon," said Francois.

• • •

On. Jan. 12, Francois was stitching necklines at the Palm Apparel T-shirt factory in Carrefour, the earthquake's epicenter, when the walls buckled. More than 300 people died in the factory, and hundreds were critically injured.

Twelve hours later, Francois' brother used a hacksaw to cut his left leg off at mid-shin to free him from the factory rubble. The brother then tied newly stitched T-shirts around the wound to stem the bleeding, and drove Francois to an overflowing hospital in Port-au-Prince. A few days later, he was trucked to the public hospital in Jimani, a border town in the Dominican Republic.

When Francois arrived at the Jimani hospital, Isma lay on a mattress on the floor in a hallway, her right leg amputated at mid-thigh. Wafting in and out of consciousness, she described herself to visitors as "ugly" and said she didn't want to live.

In Haiti, where life is even a struggle for the healthy, it is all but impossible for amputees, who are ostracized and often shut out of schools and jobs.

"To have a chance at life, I think I must leave Haiti," said Isma.

She was at home in Petionville when the earthquake hit, and a wall fell on her. At the Jimani hospital, doctors planned to amputate both legs to save her life. But Mike Wnek, an Auburndale developer volunteering in Haiti, arranged for her to get strong antibiotics that saved her remaining leg. Wnek also got her a wheelchair.

Weeks later when government officials in the Dominican Republic ordered Haitians who were no longer in critical condition back to hospitals and camps in Haiti, Isma and Francois were bused to the Fond Parisien refugee camp. The camp had sprouted up on the grounds of Love a Child Orphanage founded by Riverview couple Bobby and Sherry Burnett.

In the week after the earthquake, the orphanage was overwhelmed with hundreds of injured people and only a lone licensed practical nurse to treat them. But by late February, it has become a full-fledged medical compound called the Love a Child Disaster Relief Center run by the Harvard Humanitarian Initiative and staffed by surgeons, primary care doctors and emergency room doctors from all over the United States. Handicap International staff visit regularly.

"In those early days right after the earthquake, I'd see people and know they were going to die. Now, I see the same people getting around on crutches, waiting for prosthetics and doing fine," said Sherry Burnett.

• • •

Situated on a shady ridge east of Port-au-Prince, this amputee center has potable water, flushing toilets, electric lights and nightly soccer games for the families of the injured. There is even ice in the fruit punch.

Tim Budorick, an orthopedic surgeon from Virginia Beach, Va., operated on Francois here two weeks ago to clean up his stump and prepare him for a prosthetic.

"If someone loses a leg or part of a leg," said the surgeon, "you need to move quickly to walking before neurological adaptive behaviors and balance are lost, and that's what we're trying to do here."

On this Friday afternoon in late February, primary care physician Marye Lois McCroskey from Maryville, Tenn., walks around the camp showing patients how to wrap stumps to prepare them for fittings. Many ask when they'll get limbs.

"That's a good question, but we don't know yet," the doctor tells them. "There's a huge need to be filled."

Francois pauses under a cluster of trees where amputees sit on mattresses, doing leg exercises. He nods and smiles.

"We try to encourage and motivate each other to get to the next step," he said.

If Francois gets a prosthesis in the next few months, he plans to return to Carrefour, where the Palm Apparel factory was and where supervisors are taking applications for future work.

"You can bet we'll be waiting for him to give him a job," said Palm Apparel factory owner Alain Villard.

In the shade of a mango tree, Isma lifts her intact leg up and down to strengthen it — even though she is not a likely candidate for a prosthesis.

"If I can just get on crutches ..."

Texas singer-songwriter with autism releases debut album

From My Fox-TV in Houston:

HOUSTON - A musical perspective both unique and provocative. It is the gift of Richmond singer and songwriter Kyle Cousins (pictured).

Cousins' capacity to express with music what so many others living with autism keep locked up inside has offered a welcome window into an often mysterious world.

His debut album "Spectrum" drew devoted fans and now his song "Everybody Wants to be Heard" has been licensed by the national advocacy group Autism Speaks as a national campaign song.

"This isn't just about a few states or a few cities this issue is nationwide, so its the perfect campaign song for this cause, to stop autism once and for all," says the 20-year-old Cousins.

The song has been incorporated in soon to be distributed public service announcements.

For Cousins' proud parents, this thriving and inspiring is a worthy pay-off for years of struggle.

"To be offering this hope to other young families is a miracle to me," says Kyle's mom, Diane Cousins.

For Kyle Cousins, exposure to a new and growing national audience represents a real chance to make a meaningful mark with his music.

"Yes, I do have autism, but really I'm just a singer, that's all."

A self image that says as much about where he's headed, as where he's been.

NY mother and son indicted for abuse, death of disabled daughter


BUFFALO, N.Y. -- An Erie County Grand Jury returned a multi-count indictment against 51-year-old Eva Cummings (pictured) and her son, 31-year-old Luke Wright on Feb. 26.

The two are charged with the following crimes, all of which were allegedly perpetrated against 23-year-old Laura Cummings, the mentally disabled daughter of Eva Cummings and sister of Luke Wright.

WARNING: The following charges contain graphic material.

Eva Cummings is charged with Murder in the Second Degree, after allegedly suffocating her daughter to death. She is also charged with Sexual Assault, after allegedly assaulting her daughter with a broom stick; Assault in the First Degree, where she allegedly scalded her daughter; Unlawful Imprisonment as a Hate Crime, wherein it is alleged that she unlawfully restrained her daughter because of her daughter's disability.

Cummings is also charged with Endangering the Welfare of an Incompetent Person or Physically Disabled Person, where it is alleged that she knowingly acted in a manner likely to be injurious to her daughter's welfare by repeatedly beating her, repeatedly tying her to a chair, repeatedly placing a hood over her head, and repeatedly pushing her face into her own feces.
If convicted, Eva Cummings faces a sentence of 83 years to life in prison.

Luke Wright is charged with Predatory Sexual Assault, Unlawful Imprisonment in the First Degree as a Hate Crime and Endangering the Welfare of an Incompetent Person or Physically Disabled Person.

It is alleged that Wright perpetrated the same or similar acts as his mother, Eva Cummings, against his sister.

Wright is also charged with several sex offenses, including Rape, Criminal Sexual Act and Incest, where it is alleged that he forcibly engaged in sexual acts with his mentally disabled sister.

If convicted, Luke Wright faces a sentence of 133 years to life in prison.

The defendants are scheduled to be arraigned on March 1, 2010 at 2:00 p.m.

Maryland students send bikes to disabled children in Ghana

From WJZ-TV:

BALTIMORE ― For some disabled children, a bicycle can mean a new life. Students at one Baltimore County school plan to give the gift of two wheels to disabled people in Ghana. It's a class project inspired by one athlete's story.

This is Emmanuel Yeboah's second visit to McDonogh School in Owings Mills. The first time was back in October, when he shared his story as a disabled person living in his native Ghana.

"It's considered to be a punishment from a deity and when he was a kid, his father abandoned him because he was disabled," said Kyle Rice.

And other family members told Yeboah's mother to kill him.

His right leg is severely deformed, but his mother wanted Yeboah to go to school. She carried him until he was 12 years old.

"She said, `Emmanuel, you are heavy,'" Yeboah said.

So he hopped, until the three-mile trek became too much.

Shortly after, Yeboah decided to apply for a bicycle from an athletic foundation in California. When the bike arrived, it meant freedom.

"It's changed my life totally, 100%," he said.

So Yeboah pedaled 400 miles across Ghana, raising awareness for the disabled.

He has a prosthesis now, but Yeboah's story impressed four McDonogh students.

Brendan Fowl, Danny Bredar, Kyle Rice and Ben Love decided to ask other students to donate bikes. The teens will personally deliver them to disabled children in Ghana.

"I think we're going to discover that the kids there are going to change our lives more than we could have ever imagined," Fowl said.

So far, they've filled a trailer with more than 200 bicycles. They will be accepting bikes for another two weeks.

Washington state adults with autism find a place in workforce

From Nisqually Valley News in Wash.:
Being autistic, socializing was never easy for Patrick Pastor (pictured).

Even now, initiating conversation is outside the 28-year-old’s comfort zone.

In school, Pastor was incredibly shy. It was hard for him to watch the other kids interact with such ease.

Elementary and middle school were the toughest, though Pastor admits it got better in high school. His peers matured and were more accepting.

And his social skills improved.

In elementary school, Pastor was in a self-contained special education class. In middle school, he spent half the day in general education classrooms. By high school, he was fully integrated into general ed.

Pastor maintained a high grade point average and graduated in 1999 from high school in Lakewood. He earned his bachelor’s degree from Pacific Lutheran University and attended graduate school at Washington State University, where he completed his masters degree in chemistry.

Now he works full-time at Joint Base Lewis-McChord in the Central Issue Facility (CIF), where soldiers receive and return equipment before and after deployment or transfer.

Pastor is employed through Skookum, a nonprofit organization based in Western Washington that is dedicated to creating living-wage jobs for people with disabilities.

Pastor is diagnosed with Asperger’s — commonly defined as a milder form of classic autistic disorder within the autism spectrum. Those with Asperger’s often have impairments in two-sided social interaction and non-verbal communication.

Pastor doesn’t make regular eye contact. He will for moments, then he will turn his head to the side during a conversation.

Like many people with Asperger’s and other levels of autism, Pastor speaks slower than the average person, and it sometimes takes more effort to formulate what he wishes to say.

But he is very articulate.

There was talk recently among medical professionals about his disorder, Pastor said. “They are not really sure whether to keep Asperger’s as a distinct diagnosis, he said.”

“The traditional criteria for Asperger’s is normal language and intelligence, but that is not always the case. It’s kind of hard to define.”

For Pastor, everything is black and white, according to Becky Jackson, logisitics tech at CIF and Pastor’s supervisor.

If there is a glitch in a computer, Pastor may say something like, “it is not supposed to operate this way,” said Jackson, who has an autistic son.

“It’s black and white. There is no grey matter there. But his intelligence is off the charts.”

It’s that intelligence that helped land him his current position as a clerk in Jackson’s department.

Pastor started working for Skookum in July 2009. He began in the warehouse for the deployment section.

“Basically I counted items — issued and received items — from soldiers who were deploying or returning,” Pastor said. “I was doing a little bit of bookkeeping tasks to help prepare for inventory.”

He would put like items into a box, count them, and check if they were serviceable and clean.

Jackson admits she observed Pastor’s work for awhile.

“He was always so meticulous about how he did things,” Jackson said. “I wanted him to try working in my section. I figured he would like the computers.”

In December 2009, Jackson “stole” him, in a sense, she said.

Now he is “abstracting issue turn-ins and demobilizations,” Pastor said. Duties include compiling a list of a soldier’s items on the computer database, and having the soldier check the list to make sure it’s correct before he or she signs and dates it.

The job is rewarding, Pastor said.

“Basically I am helping soldiers,” Pastor said. “The military needs people to do the tasks I’m doing. It’s important to keep track of military property — stuff that the military has issued.”

“I think that a lot of the tasks are things I’m good at,” he said. “The job requires a lot of attention to detail. I think that’s a strength of mine.”

Despite the social aspect of his job being a bit of a challenge at times, Pastor said that the people he works with are one of the things he likes best about his job.

“They are very nice people,” Pastor said. “They’re patient and helpful when I am new to something. They’re just good people to be around. The people here help each other out when we’re busy.”

Of the 38 people who work full-time at CIF, and 16 who are on call, 86 percent of the people have some disability, said Michor Gentemann, general manager for Skookum’s Joint Base Lewis-McChord operations.

Skookum’s Joint Base Lewis-McChord contracts include CIF, wheeled vehicle maintenance supply operations, facilities/ground maintenance and sanitation services.

More than 400 people are employed on base through Skookum and the vast majority have a disability — whether physical or mental, Gentemann said.

Pastor’s coworkers appreciate him, not only for his intelligence and ability to learn quickly, but for his personality and his overall work attitude.

“He is a really great guy,” Jackson said. “If I could have a ton of Patricks, I would. You can never have a bad day with him. If you do, then something is wrong with you.”

However, not all days are easygoing for Pastor.

Jackson and his other coworkers recognize that he can get easily overwhelmed, particularly when the environment gets loud at CIF. Pastor also recognizes it and knows his limits.

“He doesn’t do it that often, but when he gets overwhelmed he’ll step away,” Jackson said.

“And he knows it too. He’ll say ‘excuse me’ and find a room or a quiet area, and he’ll walk in circles for awhile.”

“That’s how he copes.”

Pastor is no stranger to the workforce. He has held “several jobs,” he said.

He performed administrative and clerical tasks for the Pierce County Department of Emergency Management.

“I did data entry,” Pastor said. “I helped maintain the database of resources available in an emergency. I helped run project impact — a program that helped the community prepare for natural disasters.”

During grad school, Pastor was a teaching assistant and primarily graded papers.

He plans to eventually get a job in the chemistry field.

“The job market for that field isn’t very good right now, especially at the entry level,” he said.

Pastor said he believes he is very fortunate.

On the autistic spectrum, there are some people who are on one end who can’t communicate at all and may never have the means to function well in society, Pastor said. On the other end, there are people who are very well educated and can function as well as the average person.

Pastor doesn’t place himself at the highest end of the spectrum, but said he is closer to the top than the middle.

Some of his progress can be attributed to his schooling, which he said was good for the most part, especially while he was in Lakewood. Some can be attributed to family support.

“I have been really blessed in that regard,” Pastor said.

He also recognizes that he was diagnosed with a less severe form of autism compared to what other families experience.

Life has its challenges, nonetheless. It’s also been full of accomplishments.

He just had to work harder to get there.

Photography classes for blind people in India continue

From DNA India. The photo is by Satvir Yogi, a participant in the program.

DELHI, India -- A camera in the hands of visually challenged sounds like a paradox but a group of such people have been found to practice the art of photography which challenges prevailing definitions of art and vision.

"I used to wonder how people could take pictures. Now, I am happy that I too can do it. My camera captures my imagination," says Nikhil Mundhe, born with visual disability. Mudhe, alongwith 15 others, is part of the "Blind with Camera" project, which aims to integrate visually impaired into mainstream society through photography.

Partho Bhowmick, the brain behind the Mumbai-based project conducted the first photography workshop for the blind in 2006 which saw participation increasing over the years.

"Photography by the visually impaired reveals that a photograph can be made successfully in the mind as much as by the eyes, free from techniques and rules followed by sighted photographers. It illuminates a new line of thought distinct
from the way we look at this art," says Bhowmick.

"Using various tactile, audio clues, visual memories of sight, the warmth of light and other cognitive skills they create a mental image before deciding to click a picture. The camera is used as an extension of their self to explore the visual world," he adds.

Bhowmick, who is an IT professional, chanced upon a book by a French author detailing the process whereby even a blind person can click pictures.

Bhowmick researched the subject and enlisted the support of friends to start the "Blind with Camera" series. The almost impossible project, however had to face some real roadblocks before taking off.

"Convincing the blind that they can take pictures was very tough. It took me six months to get the first student to attend my first workshop which was conducted free of cost.

"It was only after two years of intensive research on blindness and visual art, and consultations with over 50 blind visual artists across the world, I was able to define the approach and get things moving,"says Bhowmick.

Participants say the unique effort has instilled a feeling of pride among them and created a source of new income opportunity for them.

"I have a feeling of belonging and pride accomplishing this seemingly impossible task. I also enjoy my newfound financial independence,"says Bhavesh Patel who was born blind.

The photos are usually sold in exhibitions at fixed prices ranging between Rs 5,000 to Rs 9,000. Bhowmick, has organised so far seven exhibitions and distributed Rs 40,000 accumulated from the sale among the artists.

"Our main buyers are artists, art lovers and those who support the cause. Most of them are driven by emotions since part of the proceed goes to the artist directly," he says.

During the workshop, visually impaired participants with a sighted companion share experiences with disability and how challenges of life are handled.

Intense "visual talking" and deep "inward" interaction helps the participants to conceptualise what they want to communicate through photos, says Bhowmick.

The visually impaired are asked to spend time feeling the space, sensing the layout of objects in the space, touching them (if within reach) or using their judgement.

This process triggers a visual thinking for them and the first version of the mental image is abstractly created. By seeking more clues they create a refined version of the mental image.

Then by touch and judgement, they measure the distance from the object and the space around it, place the camera in
relation to the object, space and light, and finally 'click' a photograph.

"Participants with low and partial sight can some what see the photographs taken by them by bringing the photo print close to their eyes or under magnifying glass," says Bhowmik.

Completely blind participants depend on a sighted companion to describe the photography. Discussions on photos focus more on the conceptual and emotional aspect that helps visually impaired photographer to recollect a mental picture and relate it to physical prints.

"Surprisingly sometime they could point almost correctly the position of the objects in the prints," he says.

"The geometry of direction is common to vision and touch and where a sighted person looks out, a blind person reaches out, and they will discover the same things,"says Prof John Kennedy, Toronto University.

Meanwhile, Bhowmick says this art is still in its infancy in India. "Judging the work of blind needs a different sensitivity. Their work is not comparable with the sighted. I plan to start a photo competition for the blind in India very soon," he says.

Tai chi aids emotional, physical well-being of disabled participants

From the San Jose Mercury News:

Knees apart and shoulders back, wheelchairs steady, a circle of students hovers their palms above their laps like yogis.
In tandem, their wrists draw slow, elegant hoops in the air before returning to their laps.

"You're just floating in a sea of chi," reminds the instructor. "Imagine you're kelp in the Monterey Bay, moving effortlessly."
Once practiced in secret by Chinese martial arts masters, tai chi has found a new, unlikely batch of disciples: paraplegics.

Every Monday afternoon, a handful of people roll, hobble and shuffle to Santa Clara Valley Medical Center to learn an ancient art that students say reduces pain, steadies their balance and makes them feel happy.

"You're not going to be able to kung fu people with this class," says instructor Darlene Karasik, a nurse who discovered tai chi helped ease her arthritis pain. "Your best self-defense might be putting people to sleep."

Tai chi, known for its meditative qualities and slow, gentle movements, can improve health, doctors say. It increases upper body strength, improves flexibility and balance, reduces pain from arthritis and lowers blood pressure, according to a number of studies.

Valley Medical Center had already offered regular tai chi classes, but altered some moves last fall so patients can do it sitting down, hoping the seated version might provide the same benefits, said rehabilitation physician Dr. Kazuko Shem. She's enrolled six participants

in a study tracking pain, emotional well-being and mental focus over the course of 12 weeks.

For patients with spinal cord injuries—about 475 at Valley Medical alone—exercise options are slim, and most are done alone. Patients with spinal cord injuries are more likely to be depressed, and Shem hopes that tai chi, which is often done in a group, will help them feel more "emotionally connected."

"There aren't that many group activities," said Shem, "but a tai chi class is almost like going to the gym."
Indeed, there are more smiles every week, says instructor Karasik. She watched camaraderie grow within a tai chi class of three quadriplegics last fall.

"When they come to class, I watch them relax, get more peaceful," said Karasik.

Charles Hanks, 69, lives in Campbell and takes public paratransit to tai chi. He's not paralyzed, but he can't walk more than 75 yards before sharp pain shoots up his calves because of an artery disease he attributes to smoking four packs of Pall Malls a day. Before a friend harangued him into attending his first tai chi class at a senior center eight years ago, he was physically drained and mentally blue.

"My balance had gone to hell. I was depressed, getting more depressed," says Hanks, who now attends both seated and standing tai chi classes at Valley Medical. "But now it's all coming back."

His disease has not progressed, which he attributes to tai chi.

Others are new to the practice.

Lawrence Viariseo (pictured) has been wheelchair-bound since a skiing accident in the early 1980s paralyzed him from the knees down, but he still considers himself a jock. He does push-ups, sit-ups, pull-ups and yoga. And now, tai chi?

"I rolled my eyes, I have to admit," says Viariseo. "It's just not something I would do, so holistic. But I'm always pleased. I like it."

VA to investigate thousands of Gulf War syndrome cases

From the St. Petersburg Times in Fla.:

Wally Heath — once a Hillsborough sheriff's deputy, once a Navy reserve sailor who hauled heavy equipment in the Middle East — now sits at home in pain.

He takes 19 prescriptions. He has memory loss, chronic fatigue, stomach and sinus problems, muscle aches, vision loss, headaches and infections. Years ago, a doctor told him to prepare to die.

But when it came time for the government to pay, he was told his pain was imaginary. He felt used.

"Like a diaper," said Heath, 62. "They just toss you to the side."

Heath (pictured) is one of about 200,000 American Gulf War veterans who claim to suffer from mysterious "Gulf War syndrome." Feb. 26, the Veterans Affairs Department vowed to review what could be thousands of those disability claims, opening the door for compensation that many say is two decades late.

"It's about time," Heath said.

The VA will review regulations to ensure veterans get what they were owed under the law. Rejected veterans could then be considered again. Out of almost 700,000 men and women who served in the war, 300,000 have submitted claims, according to the VA.

Gulf War syndrome is a collection of symptoms — rashes, joint and muscle pain, sleep issues and gastrointestinal problems. Hundreds of millions of dollars have gone toward research, but the cause still isn't clear. Scientists and service people have pointed to pesticides, chemical drops, oil well fires and pyridostigmine bromide pills, which soldiers took to safeguard from nerve gas.

"I took them once," said William Carpenter from Frostproof, a former staff sergeant with the 325th Maintenance Company. "They made me sick. Being a staff sergeant, I was supposed to take them. I didn't. I used a little common sense."

Carpenter, who once trained by running three miles on the sand carrying a backpack of rocks, left the war with muscle pain, breathing problems and memory loss. The VA declared him 60 percent disabled, he said.

"When I got home, I couldn't climb a flight of stairs," he said. "I'll never get well.

He and others testified about their illnesses before a Presidential Advisory Committee in 1996.

"We had people in there with shopping carts full of medicine and bottles and stuff," said Carpenter, 69. "They had a couple guys in there with bags of pills."

With questions lingering, VA Secretary Eric Shinseki appointed a task force. Last week, Shinseki and Sen. Jay Rockefeller, D-W.Va., met with several veterans. After the meeting, Rockefeller said a reluctant military or poor record keeping made it hard for veterans to prove they needed help.

Glenn Hertel of Hudson is sure something from the war caused his bipolar disorder, memory loss and pain. He was a truck driver for the 546th Transport Company and spent a year in Saudi Arabia and Iraq. He took the pills and slept near Iraqi ammunition dumps.

The VA has rated his disability at 40 percent. Hertel, 43, hopes the new review might help him win a 50 percent rating, which would entitle him to more medical coverage. At the least, he said, it might fully identify his illness in his medical records.

"Right now, the records just say I was a Gulf War veteran."

"Every so often they say ,'We're going to look into this, look into that. We'll do a study,' " said Heath, who lives in Tampa. "I don't put much hope in my government."

His condition forced an end to his job as a detention deputy in 1994. He got by on $1,000 a month nonservice-related disability, church, and help from family. In 2007, he said, the VA granted him full coverage for some of his ailments.

Twelve years after he applied.

Friday, February 26, 2010

Nudging schools to aid students with learning disabilities

From The New York Times Health section:

WHEN it comes to special education, Becky McGee and her 19-year-old son, Kyle, feel as if they’ve seen it all. (Both are pictured.)

And Ms. McGee hopes her hard-won lessons might benefit other parents.

Kyle was born with orthopedic and neurological problems. In elementary school he was found to have several learning disabilities that included severe dyslexia and attention-deficit disorder. Ms. McGee sought for years for her son to get the kinds of therapy and intervention that would help him succeed in his public school system in Yorktown, Va.

Throughout Kyle’s elementary, middle and high school years, Ms. McGee had to fight for the special services, particularly for a reading program for dyslexia that worked well for her son. She even enlisted the help of a lawyer who specializes in learning disability cases.

At one point, Ms. McGee and her husband, Chuck, decided to put Kyle in private school for two years before he went to public high school. They often paid out-of-pocket for reading therapies that schools could not or would not provide.

The roller-coaster ride ended well. Kyle is now enrolled at ECPI College of Technology, studying computer networking.

“Kyle is an amazing kid, and he’s doing great,” Ms. McGee said. “All I can say now is I’m glad public school is behind us.”

The McGees’ travails are hardly unique. More than 6 percent of school-age children — almost three million students — are receiving special education services because of learning disabilities, according to the Learning Disabilities Association of America.

The cost of such special services can easily total thousands of dollars a year per child. But the Learning Disabilities Association suggests that when learning disabilities are left untreated, the overall cost to society may be far higher.

That’s where federal special education law comes in. The Individuals With Disabilities Education Act, passed in 1990 as a successor to a similar law from 1975, is meant to give all children with learning disabilities an appropriate education in the least restrictive environment possible. Under the law, known by its acronym IDEA, parents are supposed to be active partners in coming up with the education plan that best fits their child.

Last week my colleague Lesley Alderman gave advice on how to get a proper diagnosis if you suspect your child has a learning disability. This week I’ll delve into ways to make sure your child is getting the educational help he or she needs.

KNOW YOUR RIGHTS “It’s really important for every parent with a learning-disabled child to understand the law thoroughly, so you know what your rights are and what services your child may be eligible for,” said Peter Wright, the education lawyer and advocate who assisted Ms. McGee.

Parents have extensive rights under IDEA, including the right to ask for an evaluation or a re-evaluation of their child at any time. Most important, however, is the parents’ right to be part of the team that decides what special education services and therapies the child will receive.

“The law was written with the idea that parents are equal participants in developing the child’s education plan,” says Ron Hager, senior staff lawyer at the National Disability Rights Network.

IDEA requires each child with a learning disability to have an individualized education plan tailored specifically to his or her needs. This could include services like speech and occupational therapy, reading intervention and a full-time aide in the classroom.

Exactly what services your child receives is supposed to be decided each year at your child’s individualized education plan meeting, which usually includes your child’s classroom teachers, a special education instructor, a school administrator and someone representing the school district.

Before attending such a meeting, you want to be as well informed as possible about your child’s specific disability and what services are provided in your state, says Pat Lillie, president of the Learning Disabilities Association of America.

“I can’t tell you how many times I’ve been the one to tell the school what’s exactly in the law,” Ms. McGee said. “After all, these are teachers and administrators, not lawyers. I always take a copy of the law with me.”

Ms. McGee suggests that when you meet with the school’s staff members about the individualized education plan, you take along a spouse or a good friend who knows your child well. Even in the best cases, these meetings can be extremely emotional, Ms. McGee said.

“The specialists and administrators are on the other side of the table telling me my son is behind on this, he can’t do that, he’s not up to speed on such and such,” she said. “It’s all helpful information, but it’s still difficult.”

GETTING MORE What if you’ve successfully secured an individualized education plan but are convinced your child needs more intervention?

Let’s say the child has fine-motor problems but isn’t receiving occupational therapy. Or perhaps the child goes to occupational therapy once a week but you think three times a week is more appropriate.

If your child is not making progress, you do have the right to question the plan. You may request an individualized education plan meeting at any time. (This request is best done in writing, by certified mail.) At the meeting, you can make your case for more services.

“Anytime you’re asking for more, that’s when you’re going to get into an argument,” Ms. McGee said.

In part, schools might be resistant because the extra services cut into already tight budgets. Aside from the cost, each side at these meetings can be territorial.

“There can definitely be tension between the parent and the school,” said Ron Hager, senior staff lawyer at the National Disability Rights Network. “You as the parent know your child best, but the teachers and administrators see themselves as the experts.”

Your best defense? First, listen to the educators; they might know what they’re talking about. But parents should also become experts themselves. You’ll need to learn about your child’s specific disabilities and the treatments and therapies that work for his or her issues, Mr. Hager advised. Then you need to make a compelling case to your child’s individualized education plan team.

If you find that the school is not acknowledging problems that you know are interfering with his or her learning, you may have to ask to have your child re-evaluated. To expedite this process, parents often pay for a private evaluation themselves, costing $500 to $5,000, depending on the tests.

Finally, said Ms. McGee, “you have to think creatively.”

When Kyle was in elementary school, for example, he had been turned down for occupational therapy. The school argued that it was a medical need, which is not covered by IDEA, rather than an educational need.

“But the law says the child should be provided the support needed to get through the academic day,” argued Ms. McGee. “Lunch is part of the day, and Kyle needed to be able to hold his lunch tray.” McGee succeeded in her argument, and Kyle received occupational therapy.

HITTING AN IMPASSE If you cannot reach an agreement with your child’s school, you have the right to a due process hearing, after which an administrative officer or judge makes a ruling on the dispute. This is when you want a lawyer or professional advocate by your side.

“If you’ve taken your fight this far, you want to make sure you’re getting the best chance for success,” said Olga Pribyl, managing lawyer for the special education office at Equip for Equality, an advocacy center in Illinois.

Dartmouth University students with disabilities discuss their experiences

From The Dartmouth:

Six Dartmouth students personally affected by disabilities told their stories to an audience of students and faculty during a panel discussion held on Thursday, “Managing Disabilities and Health Issues at Dartmouth.” The panelists urged community members to begin constructive dialogue about physical and mental disabilities to achieve wider understanding and combat the stigma that prevents students from seeking accommodations for their disabilities.

Access By Leadership in Equity, a new student organization that works to raise awareness about students with disabilities, led the event, which was moderated by Student Body President Frances Vernon ’10.

Students feel insecure about seeking help from on-campus resources, panelists said, citing a nationwide and school-wide “culture of intensity” that discourages students from asking for help.

Students should take advantage of the support services at Dartmouth, panelists said.

“We are a smaller college and for that reason we have such a sense of community,” Vernon said. “We’re meant to be a support system for each other. No one will get through this life alone, and no one should.”

Panelists encouraged students to go out of their way to reach out to students with disabilities.

“I thought I had to be 100 percent self-sufficient,” said Stewart Gray ’11, who was diagnosed with the autoimmune disorder reactive arthritis last spring. “This led me to withdraw from friends because I refused to show any signs of weakness, but I had really great friends who where there to tell me exactly what I needed to hear. Sometimes you just need someone there to understand what you’re going through.”

Gray suffered extreme pain and physical limitations when he first started experiencing symptoms, at times skipping meals and trying to disguise his limp, he said.

“It was the most difficult and challenging thing I’ve ever faced in my life,” Gray said. “It changed my outlook on Dartmouth’s accessibility and handling life’s problems.”

Although Gray has not experienced difficulties receiving academic accommodations from professors, he said that after talking with fellow students his experience appears to be “largely the exception, not the rule.”

Many students perceive accommodations for students with disabilities as an “unfair leg-up” and a social stigma becomes associated with having a disability, Gray said. He said he had often personally felt students with disabilities received special treatment before he developed reactive arthritis.

Panelist Rebecca Gotlieb ’12, who organized the panel and co-founded ABLE, lives with five different learning disabilities, including reading and writing issues.

Frustration drove Gotlieb to hide her disability until two years ago, when she sought testing and received a diagnosis for her learning disabilities, she said.

“A sense of secrecy [drove me to hide my disability] in order to get the results I wanted and were expected of me,” Gotlieb said. “I was frustrated because of that disconnect between what I had learned and what I could show I had learned.”

After her diagnosis, she received learning accommodations that helped her bridge this gap, she said.

“When I received the accommodations I needed, it was an incredible weight off my shoulder,” Gotlieb said.

Panelist Jon Greig ’12 joked about his personal experience with stuttering, drawing laughter from the audience.

Greig has used Shakespearian theater as a way to cope with his disability since his participation in a third-grade play.

A fear of being judged and made fun of held Greig back during high school until he joined the Our Time Theater Company, an organization that works with people who stutter, he said.

“I found out everyone from James Earl Jones to Joe Biden had a stutter,” Greig said. “That’s pretty cool, now I’m in the same category as them.”

Greig eventually found a group of friends at Dartmouth who appreciate him and “looked past [his] stutter.”

“Just because of my stutter, my words aren’t any less valuable than yours,” Greig said. “I’m not saying anything less important, so I deserve the same attention and respect.”

Greig advised community members to actively listen to others despite speech disabilities.

“I try to live my life by never not doing something because of my stutter, and to always live like I didn’t have one,” Greig said. “Like I was just like you.”

Joe Tracy ’12 described growing up with an autistic younger brother.

One in every 110 American children is currently diagnosed with autism, a statistic that increases every year as autism is better understood, Tracy said.

Since middle school, Tracy’s brother has suffered from bullying, Tracy said. Many people do not understand how individuals have different symptoms caused by their disabilities, he said.

“You never know what someone’s going through,” Tracy said.

Students with learning disabilities too often hear and use the word “but” as a qualifier when discussing what they can and cannot do, Gotlieb said, referencing a speaker at a conference she attended for college students with learning disabilities. In order to progress, we must start to use the word ‘and’ when discussing ability, she said.

“We as a community need to begin to look at learning disabilities in a holistic way,” Gotlieb said. “I may not read or spell well, and I have a wonderful visual memory. There’s a combination of many things that make the compilation of the student I am.”

Experiencing recurrent bouts of depression was both a “blessing and curse” for Daniel Leopold ’10, he said.

“I’ve realized I need to use my family and close friends and take advantage of the resources we have [at Dartmouth],” Leopold said of his experience.

After a rough freshman year, Leopold handled his depression by using resources at Dick’s House and beginning sessions with a behavioral therapist, he said.

Although his symptoms diminished for a year, his depression resurfaced after sophomore year, Leopold said. Withdrawing for a term, Leopold cited an experience living with close friends as a turning point in his life.

“I switched [my major] from pre-med to psychology,” Leopold said. “I began to embrace who I was... it was the best thing I’d ever done for myself.”

Individuals have the choice to control how happy they are and how they approach things, Leopold said.

“We need people. You can’t shut individuals out,” he said.

Initiating conversation about learning accommodations on campus helps raise awareness about disabilities at the College, panelist and ABLE co-founder Emily Broas ’11 said.

“It levels the playing field on multiple fronts, allowing us to pursue the same goals and accomplishments,” Broas said. “By facilitating accommodations, we ensure students aren’t excluded from [the learning experience of] Dartmouth College.”

Panelists pointed to the perception of a “two-tiered system” at the College that divides students with disabilities from those without disabilities.

To combat this, members of the Dartmouth community must begin to genuinely work together in a culture of mutual respect, panelists said.

“We are all human and struggle in different ways,” Vernon said. “Be mindful and aware that you might never be aware of what someone is experiencing. On the outside, we may all look the same, but on the inside, there’s different things going on inside all of us.”

Blind Vietnam vet introduces sailing, outdoor activities to disabled people, other veterans

From San Diego News Network in California:
Urban Miyares (pictured) is blind, but that doesn’t mean he can’t see the world.

He can see that there are thousands of disabled people who just want a chance — a chance at normalcy, a chance at independence, a chance at life. Having been there himself, Miyares has made it his life’s goal to help the disabled find their way, when most merely cast them aside.

Miyares is the president and co-founder of Challenged America, a nonprofit organization introducing sailing and other outdoor activities to the disabled and military veterans and their families as a means of therapy and rehabilitation.

“I made a vow that if I could figure out how to do it, I would help others,” said Miyares of his organization’s work to try to provide the disabled a sense of normalcy.

But to know more about that vow, you need to know more about the man. Ironic, given that Miyares’ life has been anything but normal.

It was 1968, and Urban Miyares was serving his country as a member of the U.S. Army fighting in Vietnam.

(For weeks, he had been physically ill, encountering bouts with vomiting, exhaustion, dizziness, and desperately needing sleep. When checked out by Army doctor’s Miyares, a commanding officer in the 9th Infantry, was diagnosed with “battle fatigue” and peptic ulcers.)

One fateful day, Miyares and his squadron flew into a small village in the southern part of the country. He remembers walking through a giant, marshy field of rice paddies when he heard the distinctive “thump” of mortars being launched. At that point, he said he remembers falling face-first into a rice paddy.

“I woke up in a hospital in Saigon,” he recalled. “I had to look under the bed sheet to make sure I still had my legs. I remember one of my commanding officers walking up to the bed and telling me, ‘You’re one lucky grunt.’”

Miyares had apparently been counted among the soldiers killed in combat that day, and was placed in a body bag. When an Army medic opened the bags to tag the deceased, he found Miyares was a different color from the other bodies — barely alive, with only a faint heartbeat.

He returned to the U.S. and spent six months in a V.A. hospital in Valley Forge, Pa., with doctors performing countless tests on him to determine his mental and physical makeup. Weighing only 119 pounds, he developed Type 1 diabetes and had nerve damage caused by peripheral neuropathy.

In addition, the neuropathy limited the blood going to his optic nerves, which caused his eyesight to start to fail, and made it very difficult for Miyares to move around.

“I was diagnosed as being bipolar, but I was really suffering from PTSD (post traumatic stress disorder),” he said. “Back then, you never told anyone you were a veteran. You didn’t know what benefits you were entitled to. Where medical science was at the time, I was told I had no longer than 20 years to live.”

Upon being released from the hospital, Miyares set out to live — live the way he had always intended to, promising himself that his blindness and disabilities were not going to keep him down.

More than 40 years, 23 owned companies, and one unique world record later, Miyares is still standing. He has run companies in many different industries, including retail, restaurant, publishing, public relations, and import/export product distribution.

Some of Miyares truly amazing accomplishments are his performances on the slope. Yes, that slope. Skiing. Totally blind skiing. In 1988, he was invited to the Disabled American Veterans & Department of Veterans Affair winter sports clinic in Grand Junction, Colorado, and was asked to try his hand at skiing.

“It took a while to get adjusted,” he admits. “I didn’t like skiing. It was cold. I got angry with myself when I wasn’t very good.”

Like everything else, Miyares decided he was going to put his mind to something and got it done. He started training to become a better skier. Two years later, he became the world’s fastest total blind skier, clocked 63 miles per hour on a downhill course in Vermont, in the B-1 total blind category (which means the goggles are taped).

“There is a fear factor. You have to make sure you have an experienced guide,” said Miyares. “The guide tells you where to go. You definitely get the sensation of speed. If you don’t really know and trust your guide, there’s definite insecurity. It can be scary. You have no sense of slope, and you can hit a jump and all of a sudden you’re airborne.”

Off of the mountain, Miyares is one of the nation’s foremost leaders on entrepreneurship for disabled persons, founding the Disabled Businesspersons Association (DBA) in 1985. The organization’s mission: to assist enterprising individuals with disabilities maximize their potential in the business world. In addition, the group aims to work with vocational rehabilitation, government and business to encourage the participation and enhance the performance of the disabled in the workforce.

He is a prominent speaker and author on the subject. He’s received dozens of awards from both entrepreneurial and disability-based organizations. He’s met presidents. He’s written books, and founded after-school entrepreneurial programs for disabled school children. A documentary on Challenged America was featured on A&E and nominated for an Emmy.

But amid an already-full life of accomplishments and accolades, there is one place where Miyares feels most at home: on the open sea.

“I like to say that I melted the snow and started sailing on it,” he said. “(Challenged America) has really helped me rekindle a passion in my life. I was introduced to sailing when I was a boy and always loved it.”

Aside from the sentimental aspects, Miyares says that sailing is very therapeutic for his PTSD.

“People with PTSD look at the world differently. They are always taking corners wider, always looking over their shoulders,” he said. “I find the sea very relaxing. There’s no corners, no alleyways, everything is flat. No one waiting around a corner to get you.”

It’s that same freedom that Miyares offers to others through Challenged America. The organization that started as the brainchild of two disabled Vietnam vets who sat on the Mission Bay shore and watched the boats pass in 1978 — yearning for the opportunity to do it themselves — has grown into a full-blown 501(c)(3) that serves hundreds of disabled and veterans and has a fleet of 12 boats, all of which are donated.

“I was talking with those two vets and they had a boat and asked if I wanted to come sail with them,” Miyares remembers. “They asked, ‘can you pull a line?’ and I said, ‘I think so.’ It all started from there. They were trying to form a racing team, and I became a member.”

A Vietnam vet who overcomes his disability to own his own businesses, meets Presidents, and becomes a championship athlete who loves being on boats? Are we sure the screenwriters of “Forrest Gump” didn’t have Miyares in mind when they penned the script?

The Challenged America racing team often competes in the historic Transpac Yacht Race, a 2,225-nautical-mile endeavor that first began in 1906. Some of the Challenged America members, including Miyares himself, have even served as part of the crew on America’s Cup yachts. (Miyares is a long-time friend of legendary America’s Cup skipper Dennis Connor.)

Most importantly, aside from giving disabled veterans back a part of their freedom and stoking their competitive fires, Miyares — who said he misses reading and driving the most by being sightless — wants Challenged America to be a safe haven for even the most downtrodden.

“They are our priority. We want to invest the time and energy into the most badly disabled,” he said. “We want to work with those where there’s a real therapeutic value [in sailing], where sailing advances their rehabilitation or ability to give back to society either through work or volunteering or something like that.”

In addition, as president of DBA, he hopes that the therapy that the disabled can get through sailing will instill in them the confidence to be productive in society — possibly even being their own bosses as business owners. Miyares said that the disabled are the largest self-employed population in America.

Cliché as it is, such a successful businessperson usually has good people behind him or her.

“It’s about understanding business. The key is to have people who want to work for you, not to try and do it yourself,” he said. “Find people who can strengthen your own weaknesses. Then put ego in the back seat and just downplay your disability. Live below your means. Your banker is the only person you need to impress.”

That’s no truer than for Miyares, whose wife JoAnn has been by his side for 42 years, officially, and even longer as Miyares said they knew each other growing up in Manhattan. JoAnn does a lot of the administrative work for Miyares’ companies and organizations, including booking him on 40-60 speaking engagements throughout the year. The fees from those help fund the majority of the work that Miyares does throughout the year.

“What can I say? I sleep with the boss.”

Sam Sullivan, former Vancouver mayor, will serve as Canada's ambassador to Paralympics, which begins March 12

From The New York Times:

WEST VANCOUVER, British Columbia — Sam Sullivan, the former mayor of Vancouver, who twirled and waved the Olympic flag from his wheelchair at the 2006 Turin Games (pictured), will serve as Canada’s ambassador for the Paralympics.

“I know he will be a great inspiration to our athletes,” James Moore, the minister of Canadian heritage and official languages, said in a Feb. 25 news release announcing the appointment.

Sullivan broke his neck in a skiing accident at age 19, yet he later served 12 years as a Vancouver city councilor and one term as mayor, starting in 2005. I visited Sullivan in early January and wrote about the indelible image he gave the world in Turin, Italy.

Sullivan participated in the Vancouver Games torch relay, then faded into the background. His experience is suited to helping raise awareness for the Paralympics. He has founded six nonprofit organizations that have worked to provide those living with disabilities opportunities to hike and sail and make music. For this work, Sullivan received the Order of Canada honor.

The release described Sullivan’s ambassadorship like this: “Mr. Sullivan will bring a greater visibility to the Paralympic movement while showcasing Canadian leadership and athletic excellence.”

He will also participate in the Paralympic torch relay.

The Canadian government also announced an additional $12 million in financing for the Paralympic Games, for a total of $32 million. The Vancouver Paralympics, which will take place March 12-21, will bring together 1,350 athletes from 44 countries.

Service dog gives Maryland teen a safer school experience

From The Gazette in Md.:
Michelle Brown (pictured) was apprehensive when her parents talked to her about getting a canine assistant to help her in school. But Sylvia, a golden retriever and Labrador retriever mix, has changed her life, the 13-year-old said.

"She has changed my life because it makes it easier for me to go to school — and know that everybody likes me a lot more and they don't pay attention to my disability as much," said Michelle, who has cerebral palsy and suffers seizures. "She'll never judge me. She'll always want to help me and she will do whatever she can to make me happy."

Dana Tofig, spokesman for Montgomery County Public Schools, said he is not aware of any other service dogs being used one-on-one in the school system.

Service dogs provide guide, hearing, service, seizure response and emotional support.

Sylvia is known among teachers and students at John T. Baker Middle School in Damascus, where Michelle is an eighth-grader. The Gaithersburg girl has not attended Baker this school year because of a hip injury.

"We welcome anything that will assist our students to access the curriculum," said Principal Louise Worthington, who said she could not speak about individual students.

Cerebral palsy is a term that applies to neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination, according to the National Institute of Neurological Disorders and Stroke at the National Institutes of Health in Bethesda.

Michelle wears braces on her legs and suffers seizures. Sylvia ensures Michelle remains safe and has a friend by her side.

Michelle was born premature and doctors said she could develop seizures, said Dani Boyd-Brown, who adopted Michelle in 1996 when she was a newborn. When Michelle was in elementary school, teachers said she might need one-on-one assistance moving around. The family believed a canine assistant could help and began researching how to obtain one.

Boyd-Brown and her husband, David Brown, "applied all over" for help getting a service dog for Michelle, she said. In October 2005, Canine Assistants, a nonprofit based in Georgia, brought them Sylvia. Milk-Bone Dog Biscuits, a N.Y.-based company, paid for everything, including the dog's training, said Boyd-Brown, who has five adopted children with varying health conditions. Although Boyd-Brown expected a five- to seven-year wait, the family received the dog within two months.

Sylvia is trained as a seizure response dog, said Meghan Hopkins, a trainer with Canine Assistants, who trained Sylvia.

Michelle began having seizures in 2007, when she was in sixth grade.

A seizure response dog is trained to lie next to a person during a seizure, retrieve a cordless phone, alert another person if one is available, or press a medic alert button after a seizure.

About 87 percent of such dogs — including Sylvia — also can predict or react in advance of a seizure, usually with behavior such as whining, pawing, pacing, jumping or barking.

The dog's reaction "may happen a few to several minutes before a seizure, which can be quite helpful for individuals who do not experience an aura or feeling that the seizure is coming on," Hopkins said.

Michelle's seizures can come in sequence, though sometimes they do not happen for months, said Boyd-Brown, who now trusts Sylvia will detect the scent or "aura" Michelle's body gives off before a seizure and alert her.

"She is so in tune to Michelle," she said.

Children used to tease Michelle at school, mother and daughter said. But once Sylvia appeared on the scene, the students stopped focusing on Michelle.

"One day she came home and said, ‘Mom, I'm not the yucky girl with the braces on her legs anymore. I'm the cool kid,'" Boyd-Brown said. "And to me that was worth just mountains. There was nothing I could have done to give her that confidence in life, no matter what. Sylvia just gave her a new level of confidence whatever she did."

NC man with CP sues Raleigh police for assault

From NBC 17:

RALEIGH, N.C. - A man named has filed a lawsuit against the Raleigh Police Department and several officers after he claims he was assaulted by an off-duty cop.

Charles Payne, who has cerebral palsy, claims he was assaulted by an off duty cop and bouncer at a pair of bars called The Pourch and The Bassment on Glenwood Avenue on Aug. 8, 2009.

The complaint was filed Feb. 26 in federal court.

In it, Payne claims he entered the lower bar, The Bassment, to find his friend. When he did not find him, Payne exited, planning to go upstairs to The Pourch. Payne says the bouncer told him he had to leave because he'd had too much to drink.

According to the report, Payne explained he has cerebral palsy, but the bouncer then turned to an off-duty officer P.T. Morrison for help. Payne claims he explained the situation again, and tried to go upstairs, when the officer "grabbed the Plaintiff from behind and threw him to the ground."

Payne claims the bouncer and Officer Morrison repeatedly kicked him to gain control of his arms so he could be handcuffed. He also said officers tied his legs together and took him to jail.

Raleigh Police spokesman Jim Sugrue says 36-year-old Officer P.T. Morrison has been with the department since Jan. 3, 2000. He is currently assigned to the special operations division as a senior officer.

NBC17 is contacting Raleigh city attorney for comment.

Maryland disability advocates protest state budget cuts

From News Channel 8 in Maryland:
ANNAPOLIS, Md. - Hundreds of disabled people marched to the statehouse in Annapolis Thursday demanding more help as state budget cuts threaten to hurt their quality of life.

Anissa Brown was among the hundreds of people with developmental disabilities and their supporters. She says the marchers are trying "to get them not to cut the budget anymore."

Brian Saal was also present during the march. "More money. We need more money," Saal said.

Among the participants were parents who say they are burned out and stressed out from caring for their children without any help.

Beth Monroe's daughter has been waiting 11 years to get services.

"Right now, I can't die. There is no one to take care of her. She is not part of a system," Monroe said.

State funding cuts coupled with increased need have left programs and people struggling. More than 19,000 people now on the waiting list for assistance.

We've had to shrink programs, we've had to consolidate group homes, we've had to do many, many things to keep our budget balanced, and every time we turn around, there's another cut," said Frank Zappala with Arc of Montgomery County (web | news) .

Mike Knox, 35, has Spina Bifida and Hydrocephalus and the Arc of Montgomery County, which provides support and services for people with developmental disabilities and their families, has had to cut back on helping him find a job.

"Even though I am in a wheelchair...I am still thirsty for work and I am still like everyone else. I deserve that chance," Knox said.

Advocates for the disabled are lobbying for a 10 cent tax on alcoholic drinks and other cost-sharing measures, and are taking the message directly to lawmakers.

The protesters say Maryland is among the nation's richest states, but ranks 43rd in the amount of money spent on services for people with developmental disabilities.

Boston disability group works to make sure people with disabilities counted by U.S. Census

From The MetroWest Daily News in Framingham, Mass.:

Whether connecting blind people with Braille questionnaires or seeing that mentally ill residents fill out the form, a Boston group is working with the U.S. Census statewide to make sure people with disabilities are counted.

While it's estimated one of out every five people has a disability, it's a population that has been undercounted in the past, said Robyn Powell, assistant director of the Disability Policy Consortium.

"We're really just trying to break down that barrier for people with disabilities," she said yesterday.

It's a mission local advocates applaud, noting the Census count decides how more than $400 billion in federal funding is distributed among the states, including money for services on which some disabled people rely.

"In the abstract, people don't understand how important it is," said Paul Spooner, executive director of the MetroWest Center for Independent Living.

The Census begins next month.

Powell's group has landed funding from the Massachusetts Census Equity Fund, which was set up by the private Access Strategies Fund in Cambridge to increase responses from hard-to-count or underrepresented communities.

Powell said the coalition will use the funding to make outreach coordinators available in Boston, Worcester, Cambridge, Springfield and Holyoke.

In MetroWest, Powell said the consortium will reach out to organizations that serve people with disabilities, like Spooner's center.

"We're available to come in and talk to community groups about why people with disabilities should participate and how to do it," Powell said.

For people with developmental disabilities or mental illnesses who may have limited assistance in going about their daily lives, they may not otherwise see completing the Census as a top necessity, Powell said.

Michael Nicholson, Milford's Disability Commission chairman, echoed that concern.

"When a person is facing disabilities and they have priorities of getting through the day ... and they may have limited assistance, it may not be something they get to," he said.

Sometimes it's just a matter of getting access to the right accommodation, such as finding out how to get a Braille form or talking with a Census worker who can communicate with the hearing-impaired, Powell said.

Spooner said in some cases, people who live at state institutions or nursing homes have not gotten a Census form at all in the past.

"I do think it's been a problem. ... I clearly see that things have gotten much better," he said.

Families or health care aides who work with people with disabilities should check to make sure they complete the form or see if they need assistance, said Patricia Winske, co-chairwoman of the Marlborough Disabilities Commission.

"It's very important to get the numbers correctly so services continue," she said.

Bruce Kaminski, deputy regional director for the Census, said his office has assigned someone to work with the Disability Policy Consortium.

"Certainly there's challenges with that population and we have worked to overcome those," he said.

In addition to Braille questionnaires, forms are available in large print. A video relay service also will be available to hearing-impaired people who need assistance, he said.

The Census also will be opening questionnaire assistance centers, starting at the end of the week, Kaminski said. Spooner said his organization will help anyone with a disability who needs assistance.

The form going out next month will have 10 questions - the shortest in Census history.

It will not include questions about whether people have disabilities - that information is now collected through the American Community Survey, an ongoing arm of the Census that gathers data year to year, Kaminski said.

Still, the data collected through the decennial Census could shape funding and initiatives that directly affect people with disabilities, he said.

'Some of the benefits could be planning and construction of facilities for people with disabilities," Kaminski said. "It might mean that additional social services are needed or established for seniors, or child care centers developed, or hospitals or maybe job training centers."

Thursday, February 25, 2010

Affordable housing for independent living often out of reach for people with disabilities

From Medill News Reports in Chicago. In the picture, Lynn Grosso, of the Department of Housing and Urban Development, encouraged Michael Grace and Mike Sentino to participate in future discussions with HUD.

After the unveiling of a 500 page national report on housing opportunities for disabled Americans Feb. 23, Harvey Raben stood, leaning on his walker to fight the effects of Multiple Sclerosis, and asked a pointed question.

“The heart of the housing question for disabled people is: Will there be more vouchers open so more people can get into decent housing?”

Lynn Grosso, of the U.S. Department of Housing and Urban Development, answered: “The need far outweighs the availability.”

HUD is due to announce funding for additional vouchers next month, which would allow 4,000 non-elderly people with disabilities nationwide to rent in the private market. But according to the panel from the National Council on Disability, the University of Illinois at Chicago and Access Living, the relief may be too little too late.

Raben, who has lived with Multiple Sclerosis for 35 years, said his life changed when he acquired a voucher six years ago after a six-year wait. He now lives in an accessible high-rise apartment on Sheridan Road where his children can visit him. He has more money left after rent to spend on food, transportation and other facets of his newly independent life.

According to the report, Raben’s home amongst non-disabled neighbors is optimal overinstitutions like nursing homes, where residents are isolated and lose their independence. But affordability often stands in the way.

“While not a substitute for permanently affordable, universally designed and integrated housing, vouchers have the most potential for helping people with disabilities find accessible housing in a livable community,” said Janet Smith, from the Vorhees Center for Neighborhood and Community Improvement at UIC that contracted the report. “Congress must increase housing choice voucher funding targeted at people with disabilities.”

HUD originally proposed the additional 4,000 vouchers in June 2009, but the revision and feedback process has lasted 10 months. Once released, individual housing authorities throughout the country must apply for the vouchers. Waiting for more funding, the Chicago Housing Authority closed its lottery for a spot on the voucher waiting list nearly two years ago.

One thousand of the proposed vouchers are specified for disabled people who want to move out of nursing homes and may require at-home care.

Joy Hammel, a professor in the disability studies program at UIC, said that to optimize a disabled person’s independence, housing vouchers should be combined with Medicaid, which fundsinstitutional health costs.

“You could create your own plan and the money would follow you. Instead of spending $40,000 on a nursing home a year, you would get a $40,000 package,” said Hammel. “The two need to happen together for most people with disabilities. Right now they are two completely different policies.”

Following the presentation, Grosso encouraged the audience – half in wheel chairs, half in seats – to attend upcoming public hearings with HUD representatives to voice their concerns and bridge the gap between people and policy.

“Segregated housing can no longer be tolerated,” said Grosso.

Disability organizations plan events for 20th anniversary of ADA

From AAPD. In the picture, left to right: Tony Coelho, House Majority Leader Steny Hoyer (MD-5), Representative Cathy McMorris Rodgers (WA-5), Melanie Brunson (speaking), Interpreter, Senator Tom Harkin (D-IA), and Kelly Buckland.

WASHINGTON, D.C. — At a press event at the Capitol Building on Feb. 23, 2010, Senator Tom Harkin (D-IA), House Majority Leader Steny Hoyer (MD-5) and Representative Cathy McMorris Rodgers (WA-5) joined the leadership of the Justice For All Action Network (JFAAN) in kicking off the celebration of the 20th Anniversary of the Americans with Disabilities Act.

The legislators each reflected on the progress of the last 20 years while recognizing the tremendous amount of work we, as a nation, have yet to do in fulfilling the promise of the ADA—equality of opportunity, full participation, independent living, and economic self-sufficiency for all people with disabilities. Toward this end, the JFAAN steering committee announced its legislative agenda for the 2010 Congressional Session in the Spirit of the ADA Campaign.

Tony Coelho, primary author and sponsor of the ADA and chair of AAPD’s board, introduced the event and its speakers. He began by thanking those present and honoring the legislators and the ongoing leadership of the JFAAN steering committee organizations: ADAPT, the American Association of People with Disabilities (AAPD), the American Council of the Blind (ACB), the Autistic Self Advocacy Network (ASAN), the Hearing Loss Association of America (HLAA), Little People of America (LPA), the National Association of the Deaf (NAD), the National Coalition of Mental Health Consumer Survivor Organizations (NCMHCSO), the National Council on Independent Living (NCIL), the National Federation of the Blind (NFB), Not Dead Yet (NDY), Self Advocates Becoming Empowered (SABE), and the United Spinal Association (USA).

Next to speak was Congressman Hoyer who reflected on the original intent of the ADA to open doors for people with disabilities who, up to that point had been shut out: shut out as consumers, as employees, as passengers, as students and as citizens. Recognizing, “we don't mark anniversaries like this to pat ourselves on the back. We mark them to remind ourselves of the work that remains to be done,” he announced that he and Representative McMorris Rodgers were sending letters to all committee chairs and ranking members requesting ADA and ADAAA implementation oversight hearings to evaluate “how are [these laws] working, how well are they working, what are still the challenges that confront us, and what still needs to be done.” He concluded his remarks by honoring the presence of Yoshiko Dart, wife of disability rights giant Justin Dart and renowned advocate in her own right.

Senator Harkin, longtime disability champion in the Senate, followed by recapping the legislative progress over the last 20 years. From the ADA, to the ADAAA and the various iterations of legislation to address the institutional bias of Medicaid, he affirmed his commitment to the work ahead. Recognizing the passage of national health care reform and an end to the institutional bias in Medicaid as two of the 13 agenda items in the Spirit of the ADA Campaign, Senator Harkin reiterated his commitment to those issues and promised to continue to do what he could to secure the inclusion of the Community First Choice Option in health reform. He concluded by congratulating JFAAN for their work so far and thanking them for their message saying, “this Justice For All Action Network picks up on NCIL’s motto: Nothing about us, without us… It’s about people with disabilities saying what ought to be done, and to me that’s the most powerful message of all.”

Congresswoman McMorris Rodgers gave her comments a personal tone by thanking legislators and advocates for guaranteeing her son more rights today than ever before. She voiced a particular interest in addressing education, youth transition post-high school, the institutional bias, un- and under- employment and cultural stereotypes that people with disabilities continue to face despite the tremendous progress made since the passage of the ADA. Many of these priorities are featured in JFAAN’s Spirit of the ADA Campaign. Like Senator Harkin, she concluded by addressing the JFAAN leadership, saying, “I am honored to stand with you today and be a part of [this effort] moving forward.”

Kelly Buckland, Executive Director of the NCIL, proceeded to outline the structure of JFAAN and thank Steering Committee representatives present: Bruce Darling, representing the ADAPT leadership; Andy Imparato, President and CEO of AAPD; Lauren Spiro representing NCMHCSO; Nancy Bloch, CEO of NAD; Ari Ne’eman, Founder and President of ASAN; Lise Hamlin, Director of Public Policy at HLAA; Dan Kessler, President of the NCIL board and the next speaker, Melanie Brunson, Executive Director of ACB. The boards of both NCIL and ACB were highly represented in the audience. Ms. Brunson highlighted several of the 20th Anniversary Agenda items. The Spirit of the ADA Campaign is organized into items that safeguard human rights and respect human dignity, enhance self-determination and make technology work for everyone. She specifically addressed the technological challenges that are concerning the disability community and legislation that address those challenges.

The afternoon concluded as it began, with the wise remarks of Tony Coelho:
“We are here today to say to that we are ready to join together again to build on the progress of the past two decades and continue to knock down barriers to the civil rights and human rights of all children and adults with disabilities. Our joint agenda is grounded in the philosophy that disabled people and disabled people’s organizations know best how to realize the vision of the ADA, and that it is by listening to the disability community directly that policy makers will be able to craft laws and policies that will achieve their intended results on that ground.”