Thursday, September 30, 2010

An interview with Brock Waidmann, who will star in new Paul Reiser show

Intro to interview with Brock Waidmann (pictured) at http://www.newdisability.com/brockwaidmann.htm. Visit that Website to read the entire interview.

Many in the disability community have been calling for Hollywood producers to cast real people with real disabilities in roles where the disability has little or nothing to do with the plot. The people behind the Paul Reiser Show, a series which will soon be broadcast on NBC, will apparently do just that. Twelve year old Brock Waidmann has been cast in the role of Zeke, one of Paul Reiser's two sons on the show. This interview with Brock Waidmann took place by email over a couple of weeks in June 2010. This is Brock's first ever interview:

Gene: Brock, tell us how you got the role of Zeke? Do you have an agent?

Brock: It's a funny story. Just like something out of a Hollywood script. My brother's manager, Cinda Snow, who is now also my manager, called my mom one day and told her that NBC was looking for a boy in a wheelchair my age and asked if she would let me audition for it. I have always wanted to be an actor! I love TV shows & movies, and thought it always looked like fun, but my parents were always worried about it. It's hard enough to make it in show business for someone who is able bodied. We had talked a lot about me going into directing and my parents let me use the video camera a lot with my brothers and friends to make our own videos. Cinda sent the character breakdown to my mom & dad, and after reading it over, they knew it was the perfect opportunity for me to give acting a shot. I didn't even have a headshot yet, so my mom sent one of me at the zoo. It's funny because I had two parrots on me and a trash can behind me. Definitely not your average headshot.

Lawmakers told care for disabled vets from Iraq, Afghanistan will cost $1.3 trillion

From The Washington Times:

The expense of caring for veterans of the Iraq and Afghanistan wars is an unfunded budget liability for U.S. taxpayers that in years to come will rival the cost of entitlement programs such as Social Security and Medicare, lawmakers were told Sept. 30.

The House Veterans' Affairs Committee heard new estimates of the cost of lifetime medical care and benefits for returning troops disabled by their service — a total of more than $1.3 trillion.

"It's somewhere between Medicare and Social Security in terms of its potential impact" on the budget, said Rep. Bob Filner, California Democrat and committee chairman.

"This is another entitlement that we have committed ourselves to that is going to break the bank unless we deal with these issues as soon as possible," he told reporters.

The committee heard testimony from two economists, Nobel laureate Joseph Stiglitz and Linda Bilmes of Harvard University, and Mr. Filner unveiled a plan to establish a trust fund to build up cash reserves to help meet the future costs of veterans' care.

Ms. Bilmes said Sept. 29 that, with more than a half-million claims for disability benefits already filed by veterans of Iraq and Afghanistan — and close to 600,000 being treated in Veterans Affairs medical facilities — the cost of lifetime care and benefits over the next 40 years would be between $589 billion and $934 billion, "depending on the duration and the intensity of the wars."

The broad range of the figures, she said, reflects uncertainty about the numbers of troops who would be deployed in years to come. The Congressional Budget Office estimates, which she and Mr. Stiglitz used, provide for the deployment of 30,000 to 65,000 U.S. troops in Iraq and Afghanistan until 2020.

Based on the historic experience of Vietnam and the Persian Gulf War, where increasing numbers of veterans have sought treatment or benefits for service-related ailments as years pass, "these costs are going to mount significantly over time," said Donald Overton, executive director of advocacy group Veterans of Modern Warfare.

He said the cost of disability benefits from the Gulf War, which lasted six weeks in 1991, is $4.5 billion a year and rising — and is unlikely to peak for many years. The peak years of the cost of benefits for World War II veterans, for instance, were in the 1980s.

In broader terms, Ms. Bilmes said, 2009 Treasury statements make allowance for an overall liability of $1.3 trillion for disability and burial benefits for all veterans — a sum that does not include the costs of medical care.

That figure "is quite possibility an underestimate," added Mr. Stiglitz.

He noted that the higher survival rates of wounded warriors and the larger proportion of veterans diagnosed with mental health disorders in the current conflicts likely would make the costs higher than in previous wars.

The Veterans Affairs press office did not return phone calls and an e-mail requesting comment.

Whatever the exact cost turns out to be, "there's no mechanism just now for meeting that liability," said Ms. Bilmes.

Mr. Filner said he is working on legislation that he hopes to introduce early next year to create a trust fund in which cash would be allowed to accrue annually to meet growing future costs.

He said he is concerned that funding for veterans' care would decline as the memory of the wars fade over time.

"The cost … keeps going up even when the war is way over, so you need to keep building up a trust fund to deal with those issues," he said.

Alabama teen with CP tackles Half Marathon run

From the Montgomery Advertiser in Alabama:

It is 4:15 a.m., and only empty benches and a lone security guard greet Claire Bridges (pictured) as she runs.

Claire has a condition that some would view as a setback, but for the determined runner, having cerebral palsy is only one more obstacle to face in completing the Montgomery Half-Marathon on Oct. 2.

She walks for several min­utes before her early-morning workout to loosen her legs, plac­ing her hands inside her dad's rolled-down car window to bal­ance so she can stretch her legs -- especially her left hip flexor, made sore because of the condi­tion that affects coordination and body movement.

Her dad, Gary Bridges, sits in the car with a stopwatch, hold­ing it up to a streetlight to make sure it is set to 00:00, and waits for her to start her four-mile run.

He estimates it will take her 45 minutes.

The 21-year-old Claire is training for the city's second an­nual half marathon -- her sec­ond race at the 13.1-mile dis­tance. Her three weekday training runs -- Mondays, Wednesdays and Thursdays -- are at The Shoppes at East­Chase, and start at Gold's Gym. Saturday long runs recently have been the Montgomery Half-Marathon course, winding her through Capitol Heights, Alaba­ma State University and Clo­verdale.

Gary Bridges follows the 4-foot-11-inch runner -- "just in case" she falls or cramps and is unable to get up.

He explains this as his daughter walks more to loosen her legs. A 3:30 a.m. wake-up call only allows her to dress, hydrate and get into the car. Every min­ute after her arrival at Gold's Gym is crucial: warm up, run, lift weights -- and then head home to shower before classes start at Huntingdon College, where she is a senior exercise science major.

Nothing is open when Claire starts her run at EastChase. Not even Starbucks. Claire's early schedule rivals the arrival time of the food delivery drivers at Bonefish Grill. On her second lap around EastChase, they fi­nally show up for work.

She runs, and the men watch her pass, and her dad keeps a watchful eye, never letting her out of his sight.

Claire pays the men no atten­tion. She looks straight ahead, and keeps running with her left heel never hitting the ground. She is working on a heel-to-toe foot strike -- her cerebral palsy affects only her left side. But she said what she does now is com­fortable.

"When I run, it makes me feel like I do not have a disabili­ty," she said. "I am just another runner out there getting her morning run in before I tackle another day."

The only sounds this early in the morning at EastChase are the outside sprinkler systems, Gary's radio playing classic rock, and Claire's breath when­ever her dad stops his car to let her pass him.
"Good job," he calls out after her first mile lap. "About 11 minutes that first mile.

"She's looking good. She finds out that the farther she runs, the faster she is. It just takes a while to warm up. She has never complained about her ... malady. It's more, 'These are the cards I've been dealt.'"

Hazard lights on, he is there every step of the way for Claire, for the three- to four-mile week­day runs and even for the "late" training runs downtown Satur­days at 6 a.m. -- the longer, eight- to-12-mile runs to famil­iarize her with the Montgomery Half-Marathon course.

Asked why he sacrifices his time, Gary Bridges quickly an­swers, "It's no sacrifice. It's my girl. She has dreams to do stuff, and I'm going to do it with her.

"She has always wanted to run; I don't know where that came from."
He drives past Dillard's, then Mimi's Café and Game Stop.

At two miles, he hands Claire a bottle of water. She stretches for less than 30 seconds, hands the water back and takes off. Never saying a word.
Claire maintains that she has her good and bad days like any other runner.
"I have days where I do not want to get out of bed to run, and days that I know I can go just one more mile further than I planned," she said.
Past races

The list is less than a dozen, but noteworthy.

Claire finished the 2010 Mer­cedes Half-Marathon in 3:09:13, finishing 154th out of 159 in her 20-24-year-old age group, and fin­ishing as the 1,530th woman -- beating about 200 women.

"There were times I thought I wasn't going to finish," she said of that race. She said she had been sick two weeks before the race and that had forced her to miss a couple of long training runs. "The longest I've run be­fore Mercedes was eight miles."

Claire started running with a running club at Huntingdon College last year. Every year, the club trains runners to com­plete either a half or full mara­thon.

"We usually have about 50 people show up the first day of training, and ... we only took 10 to Mercedes" half and full mara­thon in Birmingham, said Amy Hulsey, a faculty sponsor and an accounting professor at Hunt­ingdon.

"Claire was a steady 12-minute miler. She put in ev­ery single training time. If she couldn't meet with the group ... if she had a test to study for ... she'd hit the treadmill.

"She just loves to push her­self like anyone else. She just likes to push herself physically. She has that competitive spirit."

Claire started running races in 2008 -- her first was the Jubi­lee 8K. She could hardly walk the next day, but it didn't stop her from returning to run it the next year.

"I started running when I was young," she said. "I had to do the one-mile every Friday when I was in the seventh grade. My goal was to get under 10 min­utes. If you got under 10 min­utes, you didn't have to run the mile the next Friday."

It took her several times, but she made it. She and her dad ran after dinner almost every night to practice. Just a mile. Just to do it.
Now, she is finishing her third mile on her loop-route at EastChase, and her father knows he won't be able to follow his daughter during the Mont­gomery Half.

Will he be nervous?

"The whole time," he said. "What makes me worry is her breathing. She wouldn't let me follow her anyway; that would embarrass her."

Watch her from a distance, and Claire's cerebral palsy isn't even noticeable. Her parents -- her mom is Jane Bridges -- didn't even realize it until she was about 3 years old.

Claire stood for the first time at 13 months, and walked at 17 months -- just over the average start-time for children. Her par­ents noticed, though, that as Claire started walking, she kept falling.

They learned she is a left hemiplegic. And that her case is mild. Cerebral palsy doesn't get better or worse, although the stretching from all her running helps with stiff muscles and joints. Most importantly, though, Claire doesn't let it de­fine her.

"It's not who I am," she said. "I just wanted to be like every­one else. I always just wanted to keep up with my twin."

Her twin, Meggie, also is a senior at Huntingdon. They have a brother, Caleb, 23, and another sister, Hannah, 26.

There are five scars on Claire's left leg. She had major surgery when she was 7, part of which was done to lengthen her hamstring.

The 2007 Brewbaker Tech­nology Magnet High School graduate said having cerebral palsy is something that forces her to work harder for what she wants -- to learn to overcome obstacles she may face along the way.

One obstacle is learning how to ride a bike. A huge goal of hers is to compete in a triathlon. First, she has to learn how to balance on a bike.
"I have the swimming and running parts down for the tri­athlon," she said. "Just not the bike. Having CP, my balance and coordination are not very good."

At just 21 years old, Claire has had to overcome a lot of stares, a lot of questions, and a lot of providing the same an­swers to why she walks and runs differently.

"When I was younger, I was really shy and didn't have a lot of confidence in myself, mostly because of having CP," she said. "I was afraid of what everyone thought of me. Today, I have a lot more confidence in myself and things I do."

Her dad thinks somewhere, somebody must have said some­thing to her.
"Or, it could be her mama's and my fault," he said. "We were probably overprotective, but as a parent, what are you supposed to do?"

After Claire's third mile on her early morning training run, she quits talking to her dad.

"Yeah, she's 'in' now," he ex­plains of her focus.

He moves on, and soon drives past Five Guys Burgers and Fries.

Gary Bridges thinks his daughter has something to prove.
If anything, like any daugh­ter, she likes to prove him wrong, but usually comes back with a "You were right."

Like, not being triathlon ready because of the imbalance on the bike. Needing new run­ning shoes -- she was content wearing her old ones until after the Montgomery Half. Dad con­vinced her otherwise, and she shaved four minutes off a train­ing run.

Her training this morning at EastChase is complete. She ran four miles, and followed it up with an hour workout at Gold's Gym -- where she focused on her shoulders, and for fun, her abs.

It is now 6:15 a.m. The sun is just starting to rise. Claire has already finished her two-hour workout as more people begin to show up at the gym.
Claire hopes to finish Satur­day's half marathon in less than three hours, but won't be both­ered if she finishes between 2:30 or 2:45. Her training has been on pace to meet that goal.

She has run parts of the training course about 10 times, so she knows it well. Still, there are internal doubts.

"It's not the pain, because I know I can cover the distance," she said. "It is a confidence is­sue.

"There are some days I can do the four miles in 40 minutes, but sometimes, I do 11-minute miles. I beat myself up if I don't run what I wanted to, or if I missed a run, or a workout."

It is what a runner says. If her goal is to fit in, she's there.

California mother advocates for special education for her imprisoned son

From the Los Angeles Times:

Yamileth Fuentes constantly worried about her son Michael's education.

As the mother of a child with learning disabilities, she made sure he didn't get overlooked in school. She fretted when his math worksheets weren't challenging enough, or when his spelling slipped.

The energetic 42-year-old Metro bus driver wasn't afraid to fight on her son's behalf. She enlisted the help of clergymen, bureaucrats and an army of lawyers in the battle to get Michael (pictured) a proper education. Once, she even stopped her bus to confront the mayor when she spotted him giving a news conference on a downtown street corner.

She believed, as countless other parents do, that her child should be given every opportunity to succeed.

Even if he was sitting behind bars, accused of murder.

Yamileth was 21 when she gave birth to Michael Garcia, her third child. He was a boy who loved to dance, was scared of thunder and didn't like being alone.

When he was still very young, Yamileth began noticing oddities in the way Michael spoke. He had trouble finding the right words and sounds, and his sentences were a jumble. Kids teased him about it. In elementary school, he was diagnosed with a speech and language impairment and an auditory processing disorder.

Michael never liked the special education label. It's just that you have a different way of learning, Yamileth told him. But the attention seemed to make him feel inadequate. He grew frustrated and started cutting class.

As adolescence kicked in, Michael slipped more and more out of control, becoming obsessed with girls and hanging out with friends Yamileth didn't know. But with her, he remained a devoted son.

He waited at bus stops after school, carrying Chinese takeout so that Yamileth, who worked 10-hour shifts without meal breaks, could get a bite to eat at the end of her route. He would quietly sit in the back of the bus for hours as streams of people got on and off, his shoulders swaying along with the bumps on the road. When they got home, he would take off her shoes and rub her feet, telling her every detail about his day.

In early 2006, Yamileth got a call from a detective looking for Michael.

He wanted to interview Michael about an incident the teen had witnessed, the detective told her. She didn't think much of it. Michael was picked up that afternoon.

Around 10 that night, her phone rang again. This time, the detective told her Michael was under arrest.

Authorities charged him with murder and attempted murder for two shootings in South Los Angeles.

In the first, a car-to-car shooting left a man dead and a woman wounded. Michael was accused of being in the gunman's car.

Six days later, gunshots were again ringing out in the streets when a frightened-looking teenager ran into a couple's backyard. A woman in the yard with her baby started screaming when she saw him. Her husband came running out.

"Let me in, they shot me," pleaded the teen, whom the husband and wife later identified as Michael.

When the husband tried to shove him out of the yard, Michael yelled at another teenager to shoot and kill the man, the couple testified. The other teen fired twice, grazing the man's buttocks, leading to the attempted murder charge.

Casings indicated the same gun was used in both incidents. Authorities believed the shootings were related to the Barrio Mojados gang. Michael, they said, was a member.

Yamileth quickly became a regular at Barry J. Nidorf Juvenile Hall in Sylmar, where she visited her son every weekend. She often still wore her blue bus driver's uniform and carried a lawn chair for the lengthy wait in the sun.

Michael was housed in the high security "compound," with an extra set of fences. Facing transfer to adult court, the teens in the compound were deemed too dangerous to come into contact with other juveniles, much less go to school with them.

Michael told his mother that classes inside the compound consisted of a couple of hours a day at the steel picnic tables where a teacher would pass out worksheets. She asked him to fold away one of the sheets to show her what he was learning. She was appalled to see single-digit addition for her 15-year-old son, who was in ninth grade before his arrest.

Yamileth started talking to other mothers in the visiting line, and with them formed a parent-teacher association for the compound. Probation officers took to calling Yamileth and two others who were always speaking up the "three amigas."

The parents, with chaplain Javier Stauring, met with attorneys at the Youth Law Center who demanded changes in the educational conditions at the compound. The county built modular classrooms and a secured path from the compound to the school facility to allow the youths to receive full days of instruction.

Michael started attending special education classes staffed by a teacher and an aide. Yamileth saw the changes in the longer, more coherent sentences he was writing in his letters.

That victory was short-lived. When Michael turned 18 in June 2008, a judge ordered him transferred to an adult lockup.

Meanwhile, the wait for his criminal trial stretched on as court dates were postponed month after month.

At one point after his transfer, Michael was attacked by other inmates who slung a rope around his neck and stuck a needle full of heroin in his arm. They suspected he was a snitch.

On their first visit after the attack, mother and son spent the hour crying. Michael tried to hide the wounds by pulling up his shirt, but Yamileth could see the bruises marring his neck, and his bloodshot eyes.

He was immediately transferred to protective custody at Men's Central Jail in downtown Los Angeles. Michael seemed to have gone through a profound change, his mother said.

"I'm not going to give up on myself," he told her. "God gave me a chance and it was for a reason."

But in the Central Jail, Michael's education stopped. Yamileth sent him novels, dictionaries and workbooks, and geared up for another battle. Attorneys from the Disability Rights Legal Center told her that as a special education student, Michael was entitled to public education until his 22nd birthday.

The second legal fight for Michael's education played out like a game of hot potato, with agency after agency claiming he wasn't their responsibility.

In a hearing before an administrative judge, the Los Angeles Unified School District argued it shouldn't have to provide education for inmates.

"The way they see it, it seemed, was 'He's facing so many years, what does he need an education for?' " Yamileth said. "But he wasn't even convicted. You don't know … if he's going to walk out the next day."

A few months later, Yamileth was at work when her phone rang.

It was Carly Munson, Michael's attorney with the Disability Rights Legal Center, with news of the judge's ruling. Her son was going to get an education.

Tears streamed down her face. A confused passenger who walked onto her bus told her he didn't have exact change for the fare. She waved him on. She couldn't care less.

The judge found that Michael had a desire to learn and work for a high school degree, and that he was being deprived of his right to free public education. L.A. Unified was ordered to provide classes and therapy to make up for lost time.

In the meantime, the prosecutor on his criminal case was telling another judge he "no longer [had] confidence" that Michael was at the scene of the murder, saying a witness was "trying to put the murder off on" Michael. The murder charge was dropped. Michael agreed to serve 12 years for a count of attempted murder and two counts of vandalism.

With time served, he could be released when he is 25.

The following month, Michael became the lead plaintiff in a class action lawsuit to establish access rights for all special education students in county jail.

On the Sunday after Christmas, Yamileth went to visit her son.

She scanned his face through the thick glass in the visiting room. Michael smiled widely. He asked if she had gotten the Christmas card he'd sent. He asked about his brothers and mentioned how cold it had gotten in the cells.

Michael's court-ordered education hadn't yet started. He had been poring through novels, going through a book in two or three days and begging his mother for more. Trying to teach himself math had been challenging, he said. Once he is released, he wants to be able to provide for his 5-year-old son and 3-year-old daughter, he said.

"It's hard by myself," he said. "I like to ask questions."

Earlier this year, Michael started attending classes in an attorney's room at the county jail. At the end of the semester, he mailed Yamileth his report card with a sprinkling of B's and C's. Even better was an A in reading, the first he'd ever received. He asked his mother to take good care of the report card. She joked that she would have it framed.

Michael was transferred this month to the California Institution for Men in Chino, where he will serve the remainder of his term.

Now, the possibility looms that Yamileth might have to fight yet again. A different set of laws applies to education in state prison, said Andrea Oxman, one of Michael's attorneys. It is unclear if Michael, now 20, will have access to special education.

Yamileth is undeterred. If it takes another round, so be it.

"I want my son to come out of there a better man than when he walked in," she said. "I know I have to work hard to accomplish this, and he's going to have to work hard."

University at Buffalo, Toronto Rehabilitation Institute partner for $4.75 million universal design initiative

From the University of Buffalo News Center:

BUFFALO, N.Y. -- The University at Buffalo and Toronto Rehabilitation Institute are partnering on a $4.75 million initiative to make housing, public buildings and outdoor spaces more accessible for people with disabilities and people of all ages.

The five-year effort, which launches Oct. 1, encompasses multiple research and development projects on topics including home modifications and the design of public rights-of-way such as sidewalks and street crossings.

The U.S. Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR) is funding the work with a grant that establishes UB and the Toronto Rehabilitation Institute as partners in a Rehabilitation Engineering Research Center (RERC) on Universal Design in the Built Environment.

Edward Steinfeld, UB professor of architecture and director of UB's Center for Inclusive Design and Environmental Access (IDeA Center), is principal investigator. James Lenker, UB assistant professor of rehabilitation science, is co-principal investigator. Steinfeld and Lenker are co-directing the new RERC, along with Jordana Maisel, the IDeA Center's director of outreach and policy studies, and Geoff Fernie, the Toronto Rehabilitation Institute's vice president for research.

The support from NIDRR recognizes UB's record of success: The current award is the third consecutive five-year RERC grant for universal design that IDeA Center researchers have received. Universal design refers to the creation of products and environments that are usable for people of diverse abilities.

"Our new grant will continue funding for the only major center of excellence in the field of universal design of the built environment," Steinfeld said. "It represents a continuing commitment by NIDRR to our research program and recognition that the IDeA Center is the leading research and development center in this field.

"The resources provided from this grant will help us initiate new research and development activities," Steinfeld added. "Through a series of partnerships with industry, we will develop several innovative products and bring others, already in the pipeline, to commercialization."

Major goals of the initiative include clarifying and improving the definition of universal design, and improving the evidence base for practice in the field. The effort will help increase the pool of professionals who practice universal design, with some research dollars supporting advanced graduate assistantships and continuing education.

"It's important research on a societal level because we're striving to improve the usability of home and community environments, particularly for older adults and people with disabilities. At the university level, it's exciting because we have a highly productive and cohesive team that includes faculty and staff with backgrounds in architecture, urban planning, human factors engineering and occupational therapy," said Lenker, who is in UB's School of Public Health and Health Professions. "It's a very stimulating opportunity for our students to work with faculty and students from disciplines outside their own."

The many projects that UB and the Toronto Rehabilitation Institute will complete over the five-year grant cycle include the following:

- An evaluation of the effectiveness of programs that help the elderly and people with disabilities modify their homes to improve accessibility. Danise Levine, architect and assistant director of UB's Center for Inclusive Design and Environmental Access (IDeA Center), has designed nearly 450 home modifications in Western New York since 1996. As part of the NIDRR-funded initiative, UB researchers will interview Levine's past clients and other home modification clients across the country to identify best practices and find out what worked. (Examples of home modifications include removing bathtubs and installing roll-in showers, or installing a ramp or lift to improve usability.)

- A study of the effectiveness of current standards for universal design. UB's William R. Greiner Hall, a residence hall under construction, incorporates universal design principles. To gauge the strength of the design, a UB research team will invite people with disabilities to compare their experiences navigating Greiner Hall to their experiences navigating a building that does not incorporate universal design.

- An examination of the use of universal design in public rights-of-way. Researchers from the Toronto Rehabilitation Institute will study the use of walking and wheeling surfaces in a cold-weather simulation chamber, analyzing how well people with disabilities are able to navigate stairs, sidewalks and curb cuts. UB researchers will assess the impact of "complete streets" policies by conducting field research and surveying officials of municipalities that have implemented such policies. (Complete streets policies are designed to make streets safe for all users, including drivers, bicyclists and pedestrians of all ages.)

In addition to its work on the RERC grant for universal design, the IDeA Center, part of the School of Architecture and Planning, is also collaborating with colleagues at Carnegie Mellon University on a five-year RERC project to advance public transportation for people with disabilities. (Steinfeld's son, Aaron Steinfeld, a systems scientist at Carnegie Mellon's Robotics Institute, is principal investigator on that initiative, and the two Steinfelds, father and son, are co-directing the project.)

The University at Buffalo is a premier research-intensive public university, a flagship institution in the State University of New York system and its largest and most comprehensive campus. UB's more than 28,000 students pursue their academic interests through more than 300 undergraduate, graduate and professional degree programs. Founded in 1846, the University at Buffalo is a member of the Association of American Universities.

Blind woman in Sri Lanka mentors struggling women

From The Sunday Times in Sri Lanka:

In a world moulded to suit the needs of people who can see, Violet Yakandawela (pictured) is determined make room for the blind. President of the National Women’s Forum of the Sri Lanka Federation of the Visually Handicapped (SLFVH), Mrs. Yankadawela and her team currently work with about 75 women between the ages of 20 to 45. Their concerns range from the financial to the emotional, and the institution does what it can to help them cope.

The forum dedicates sessions to teaching daily skills and has a modest fund that offers business loans and medical stipends to their members – but sometimes the scale of their challenges can seem daunting. Here Mrs. Yankadawela seems to lead by example.

The first visually handicapped woman in Sri Lanka to actually attend university and graduate, she’s worked as a teacher, is married and has a raised a son and now hopes to help others like her take their place in the world.

Trained at the School for the Deaf and Blind in Ratmalana, Chitra Gunesekera can type in Braille, and is an accomplished singer. Today, she is working with a trainee, helping him get used to managing the phones in their reception. Chitra is one of the many blind people employed at SLFVH’s office in Colombo -7.

In some ways, she’s fortunate to be so independent; many visually handicapped people rarely leave their homes, imprisoned either by well meaning relatives or the challenges of navigating the hustle and bustle of unfamiliar streets. Even though SLFVH tries to cover transportation costs, many members still need a guide to get them to the offices, says Mrs. Yankadawela. Still, this year seven women made it from the Northern province. “We have to depend on others,” she says, adding that as many as 80% of their members have no fixed income.

They do what they can to help themselves. Some women make wicks, while others make small ornaments and candles, reveals the Federation’s Assistant Administrative Secretary Rienzi Benedict. Small loans issued in collaboration with Handicap International are used to support some of these entrepreneurs, and they are encouraged in turn to save some amount, however small, every month.

The organisation then deposits the money into savings accounts under the women’s names. Especially for aging women, health bills are difficult to meet and many want for medicines as simple as panadol. An emergency health fund, courtesy Technique International provides a small safety net, and the organization continues to look for ways in which to nurture it. At the annual meeting of the women’s forum, held to coincide with International Women’s Day, Mrs. Yankadawela and her team try to address issues that the women face. Some of these are extremely serious and include domestic violence and sexual abuse.

For others, over protective parents will not consider allowing their children to study or marry. Mrs. Yankadawela, who is herself married to a visually handicapped man, says encouraging a handicapped person to gain some measure of independence and to begin their own families is often the best for everyone.

Should they choose to keep a home, these women need to learn essential skills, but these can be mastered, says Mrs. Yankadawela. At workshops where daily living skills are imparted, members of the women’s forum have been taught some basic cookery alongside child care and household skills such as sweeping and cleaning. Essentials of personal hygiene and manners and posture are also taught. Having mastered how to drape her own saree, Mrs. Yankadawela says she encourages her protégés to take pride in their appearance. Many of these women are also fluent in Braille, yet are forced to use a fingerprint in place of a signature on official documents.

Equating the thumb print with illiteracy, Mrs. Yankadawela shows me a little card that when placed on a paper allows the user to sign in a straight line. “We try to teach them how to write at least their names,” she says, as Mr. Benedict demonstrates.

But the most valuable lesson is not one that’s easily taught. Determination is the quality that makes the biggest difference, says Mrs. Yankadawela. Having lost her eyesight to nerve damage as a four-year-old, Mrs. Yankadawela says that it takes willpower for a visually handicapped person to make his or her way in the modern world, but she herself is proof that it is far from impossible.

With lack of some services in Nevada, young people with disabilities must seek treatment out of state

From the Las Vega Review-Journal:

LAS VEGAS -- Sandy Waide's grandson was having a difficult time in preschool. He ignored his teacher's instructions and refused to sit still. One morning he took a fish out of the classroom aquarium. That ended up being his last day there.

The school told Waide her grandson had a real behavior problem. But she suspected it was more than just that.

She took "Nicholas," whose name has been changed in this story to protect his identity, to doctors who explained that his outbursts and impulsive behavior were attributable to autistic spectrum disorder, Asperger's syndrome, and fetal alcohol and drug exposure.

Getting the diagnoses was the easy part.

The greater long-term challenge became locating effective treatment and schools equipped to help Nicholas develop. Nicholas ultimately ran out of options in Southern Nevada.

Earlier this summer, after a conviction in juvenile court for lewd behavior, the 16-year-old boarded a plane for Texas. He will spend the next year at the San Marcos Treatment Center, which treats children with multiple psychological disorders.

A few days after Nicholas left Las Vegas, Waide's voice quivered as she talked about her grandson, whom she has raised since birth: "He's 1,300 miles from me. That's hard, really hard. He should have been able to stay here where he grew up."

But Nicholas is just one of many children currently in other states because Nevada lacks the mental health resources to treat them within the state.

As of July, more than 100 children with mental health and cognitive disorders were in out-of-state treatment centers. It costs about $75,000 a year, on average, to house Medicaid-eligible children in out-of-state facilities.

The number of Southern Nevada youths placed out of state has more than doubled in the past two years, according to the Clark County Children's Mental Health Consortium, a group of advocates, government officials, and mental health professionals that earlier this year released a report about the lack of mental health resources in Southern Nevada.

Mental health officials agree that out-of-state placements, while often necessary in the absence of adequate in-state resources, are undesirable because they limit contact between children and their families.

"Families need to be involved in the treatment aspect of kids," said Diane Comeaux, administrator of the state Division of Child and Family Services.
If a child is out of state, and away from a support network, Comeaux said, it creates a challenging situation once the child returns home. Her agency is currently trying to reduce the number of youths sent out of state by patching together services in the community.

Out-of-state placements are symptomatic of a larger problem, said Fritz Reese, director of Clark County's Juvenile Justice Services.

"We've never been able to develop an infrastructure that would allow us to keep our kids in state," Reese said. "Let's face it, Las Vegas is not a traditional community where you've had resources in place for decades and things have gotten better and more polished over time."

Recent studies have shown that Nevada, which spends about $125 million annually on children's mental health services, has fewer public psychiatric beds per capita than nearly all other states. Partly as a result, the percentage of Nevada children diagnosed with mental health conditions who are actually getting treatment for those conditions (53 percent) is among the lowest in the country, according to statehealthfacts.org, a website run by the Henry J. Kaiser Family Foundation. Only six states have a lower percentage.

In the absence of public mental health resources, the state has relied heavily on the private sector to fill the void.

The Nevada Commission on Mental Health & Developmental Services recently released a long-term proposal to reform the state's current system for delivering mental health services. It includes putting a greater emphasis on front-end services that treat children's problems early in life.
Existing funds could be used more effectively, the report said.

Nicholas' time in school and with county social workers was bookended by visits to Desert Willow and Montevista, local psychiatric hospitals that handle emergency cases.

His impulsive behavior, which included overturning desks and disrobing on the school bus, led to the same question by exasperated teachers: Is he doing these things because he wants to or because there is a problem?
Waide knew the answer. And the problem was getting worse.

By high school, Nicholas was reading at a college level, yet doing math at a second-grade level. He had also developed an addiction to pornography.
"As you go through puberty, other parts of your brain light up," said Waide, who also raised Nicholas' older brother. "Because he did not have his needs addressed earlier, he started adding new layers on top of what he already had."

Nicholas was staying in a local group home earlier this year when he committed a sexual offense that led to four months in juvenile detention and to a court order sending him to the residential treatment facility in San Marcos, Texas.

Family Court Judge William Voy, who presides over juvenile delinquency cases in Clark County, said he has few options in such cases given the state's shortage of adolescent psychiatric programs.

"I don't want to send kids out of state, but sometimes I have no choice," said Voy, who was not the judge in Nicholas's case. "We've not made any progress whatsoever in providing residential treatment for kids in Nevada."
As it stands, state agencies are required to do annual site visits at out-of-state treatment centers.

Many families seeking children's mental health services wind up in local emergency rooms, which have become the gateway for crisis intervention. The county mental health consortium found the number of youths entering emergency rooms for behavioral health problems has nearly doubled in the last four years from about 700 to about 1,400.

In 2007, the Nevada Legislature approved a plan to fund a mobile crisis intervention program, with the goal of reducing the number of emergency room admissions and creating an enhanced system for families to get long-term help once a crisis situation is over. But because of state budget cuts, the program was never launched.

Waide hopes her grandson's time in Texas will help him develop into a successful and productive adult.

"I know in my heart he's a good boy," Waide said. "I'm not saying that because I'm a parent. I'm saying that because people who meet him see that he wants to please. But when you don't have the resources in place to steer that and develop that from a very early age, then it will impact kids for the rest of their lives."

Republican legislators in Massacusetts block spending $400 million, some of which is for home services for people with disabilities

From The Republican in Massachusetts:

BOSTON – Republican state legislators on Sept. 27 blocked a $400 million bill to spend federal aid, at least temporarily halting money to pay for services such as home care for the disabled, shelter for the homeless, prisons and state police.

The bill, unveiled by Democratic leaders in the state House of Representatives, seeks to spend $400 million, part of the state’s share of a $26 billion aid package approved last month by Congress and President Barack Obama.

Rep. Charles A. Murphy, chairman of the House Ways and Means Committee, said that unless the bill is approved, the state would need to close a couple of prisons and cut human services. Murphy said money in the bill would also stop possible layoffs of state police.

“We’re not free-wheeling, tax and spend Democrats,” said Murphy, a Burlington Democrat. “We have money the feds provided us and we came up with a fiscally prudent plan.”

Republicans cried foul after Democrats attempted to move the bill in the state House of Representatives. During informal sessions that started Aug. 1, a bill can be blocked by only one legislator.

Rep. Karyn E. Polito, a Shrewsbury Republican and candidate for state treasurer, objected and brought the session to an abrupt end. Polito said she stopped the bill on the House floor because the state is in a fiscal crisis and needs to be careful.

“I’m not going to be a rubber stamp for more spending we can’t afford,” Polito said.

According to Murphy, the bill calls for spending $230 million. An additional $195 million would be deposited in the state’s rainy day fund, he said.

The bill includes $5.4 million to reduce a waiting list of low-income elderly people seeking basic home care, $22 million for shelter for homeless families, $18 million for the state Department of Corrections, and $6 million to prevent layoffs of state police.

The bill also includes $11.6 million to pay for contracts for unions of certain public employees around the state.

Most of the money in the bill would go to programs operated by MassHealth, the state’s Medicaid program for the poor and disabled.

Gov. Deval L. Patrick criticized the move by Republicans.

“We have prisons at risk of closing, we have people with developmental disabilities who are in halfway houses that will close, we have children who are developmentally delayed whose services are in jeopardy,” Patrick said. “We’ve been working on this for six weeks and until now, the Republicans have been working with the legislative leadership on the House side, and I just wish they’d get back to business.”

Albert H. Norman, executive director of Mass Home Care in Montague, said the money is critical for cutting in half a 3,000-person waiting list for home care for the elderly. The $5.4 million in the bill would provide home care services for about 1,500 low-income elderly people, Norman said.

“It’s a travesty to sit on money Congress meant to be delivered to low-income people,” Norman said.

A total of $22 million would be for shelters, transitional housing and short-term housing for homeless families across the state. Contracts with private agencies under this program expire at the end of December.

“If that doesn’t get passed, there’s no money to provide shelter,” said Jane Banks, assistant program director for the private, nonprofit Center for Human Development in Springfield.

Rep. George N. Peterson, a House Republican leader from Grafton, said Republicans may allow the bill to proceed by Thursday.

“We’re not adverse to the spending,” Peterson said. “We want some time to be able to look at that kind of spending and see if it makes sense.”

Murphy, the House Ways and Means chairman, said the bill was released on Friday night, providing Republicans plenty of time over the weekend to review the legislation.

“We’ve got real needs we are trying to address,” Murphy said. “If Karyn Polito wants to play politics, God love her. I’m trying to get some work done.”

Texas high school honors disabled students as Homecoming king, queen

From KXAN-TV in Austin:

GEORGETOWN, Texas -- The Georgetown High School football team will take the field in a few hours in their game against Leander. With the bleachers empty, Jared Friemel, 18, and Gracie Kiltz, 18, make their way into the silent stadium. (Both are pictured.)

Jared pushes Gracie's wheelchair down the field to the fifty yard line. The seniors, both born with down syndrome, were in the same spot one week ago. Their fairy tale began days before when their classmates nominated them for homecoming king and queen.

"He started out at home wearing a bowl on his head," said Charlotte Friemel, Jared's mother. "And then from there the school made him a crown."

Jared and Gracie were each up against 45 other students, so Jared launched a campaign to make it to the next round.

"He walked around with a sign that said 'Vote for Jared' with a crown," said senior Shelby Phillips.

Gracie, who cannot speak, won votes with her contagious smile.

"Her smile is not just a gift, it is a total miracle," said Erin Kiltz, Gracie's mom.

At age two Gracie was diagnosed with the most aggressive form of leukemia. After ten rounds of chemotherapy her heart stopped beating for 20 minutes due to bacterial infection. Doctors thought she would not survive the night. She suffered brain damage that took away her ability to eat and smile. Doctors said she would never be able to do either one again.

Last Friday night, Jared's parents escorted him down the field after his name was announced on the loud speaker. The crowd went wild. Gracie and her father were close behind. You can probably guess what happened next. Both were crowned king and queen. The stadium rose to their feet clapping and crying.

"Friday night was just such an 'ah ha' kind of moment," said Erin. "Like yes, these kids get it. They really do see the contribution these special students have to give and to make in our world."

Jared has been wearing his crown ever since. Part of the glory goes to a program at GHS called Peer Buddies where typical kids interact with special needs students on a regular basis. Shelby Phillips and Lesli Dockal are involved, and helped spread the word about why Jared and Gracie needed to win.

"Instead of voting for a cheerleader we vote for someone who really deserves it and who really appreciates it," said Shelby.

They are finding out the fame can be tiring, but when it fades away, the feeling will have lasting effects.

"As a parent you always look at 'what is my kid going to add?' so I think at this point he's added as much value to their lives as they've added to his," said Charlotte.

Students upset with cuts to disability services at University of Winnipeg

From CBC News in Canada:


Disabled students say they're appalled that the University of Winnipeg is apparently cutting services they count on.

Officials claim they have experienced a 20 per cent increase in the number of disabled students enrolled and cannot afford to provide some services.

The cuts include assistance with note-taking and providing additional time for writing exams.

"Outrage, if I can be blunt," was the reaction of student Danielle Otto.

Otto, who has cerebral palsy, has maintained an A average in her courses. She said without the services, she would likely be failing.

"The university puts a front of being very accommodating," Otto said, "when in reality, there's service cuts."

News about the cuts surfaced Friday in an internal memo.

John Corlett, the vice-president of academics at the university, told CBC News Friday that the cuts were temporary.

"That memo is not necessarily portraying this university's position particularly well to be perfectly honest," Corlett said.

Wednesday, September 29, 2010

New I AM PWD study reveals lack of characters with disabilities on television

From I AM PWD:

LOS ANGELES — October is National Disability Employment Awareness Month and a new report released today on minority representation on broadcast television shows that scripted characters with disabilities will represent only one percent of all scripted series regular characters — six characters out of 587 — on the five broadcast networks: ABC, CBS, The CW, Fox, and NBC. Not only is this invisibility in the media misrepresentative of people with disabilities, it also means few opportunities for actors with disabilities to be cast.

The annual Where We Are On TV report issued by the Gay & Lesbian Alliance Against Defamation (GLAAD) examined all series regular characters expected to appear on the 84 announced scripted series airing during the 2010/11 broadcast network television season. The group analyzed the characters’ gender, sexual orientation, race and ethnicity. This is the first year, however, the study has examined characters with disabilities. Download the report here .

“Among people with disabilities, where we are on TV has always been a mystery, and as this report clearly shows, mostly invisible,” said Anita Hollander, chair of the Tri-Union Inclusion in the Arts & Media of People With Disabilities (I AM PWD) Campaign of Actors’ Equity Association, the American Federation of Television and Radio Artists (AFTRA) and Screen Actors Guild. “A major issue regarding the visibility of characters with disabilities in television is the fact that characters with disabilities are simply not counted in this industry. We thank GLAAD for taking the initiative to begin to count, identify and include characters with disabilities in their annual report.”

While people with disabilities are largely absent from the television scene, they are very present in the American Scene. According to the U.S. Census Bureau’s 2008 American Community Survey, the percentage of U.S. citizens reporting an apparent disability is slightly more than 12% (or 36.2 million people). The inclusion of people with non-apparent, ADA-covered disabilities, such as cancer or HIV, greatly increase this census number. Yet, even the original figure is nowhere nearly reflected by the broadcast networks.

As of this count, three of the six series regular characters with disabilities scheduled to appear in the upcoming season are on the Fox network: the title character on House (pictured), who uses a cane, Dr. Remy “Thirteen” Hadley on House who has Huntington’s Disease, and Artie Abrams on Glee, who uses a wheelchair. On three other networks, Saul on Brothers & Sisters (ABC) is living with HIV, young Max Braverman on Parenthood (NBC) has Asperger syndrome, and Dr. Albert Robbins on CSI: Crime Scene Investigation (CBS) has a prosthetic leg.

These characters, however, represent a disproportionate view of reality. All six are Caucasian and five are male. People with disabilities cross all diversity lines, be they ethnicity, sexual orientation, gender identity or expression, age, or gender. According to the U.S. Census figures, 51% of all people with disabilities are female, while only 18.3% of all people with disabilities identified as White non-Hispanic/Latino.

In addition, only one of the six actors has a known disability: Robert David Hall, who portrays Dr. Robbins on CSI: Crime Scene Investigation.

“This analysis shows there’s a lot of work to be done on the broadcast networks,” said Hollander. “Actors with disabilities are rarely cast or considered for series regular roles, but authenticity is a clear advantage for accuracy in scripted programming, and creates a dimension that provides opportunities for further exploration in storylines.”

RECURRING CHARACTERS ON THE BROADCAST NETWORKS
When it comes to actors cast to play recurring guest star characters with disabilities, it’s a different story. At least six recurring characters are expected to appear on network series this season, two of which have Down syndrome and are female (on Fox’s Glee), three of which have mobility disabilities and are male (on NBC’s The Paul Reiser Show, Fox’s animated Family Guy and ABC’s Private Practice), and one of which is deaf and female (on Fox’s Lie to Me). The five actors cast for the live-action roles are all actors with disabilities. “Compared to series regulars, there is definitely more gender variety and more authenticity in casting recurring characters,” said Hollander. “This suggests that producers and writers are showing a guarded interest in being inclusive of characters with disabilities being portrayed by actors with disabilities.”

CHARACTERS ON CABLE
While the annual GLAAD report looked at the finite number of series regular characters on the broadcast networks, there is some notable advancement in visibility happening on scripted cable programming. The Big C on Showtime, for example, revolves around a suburban mom finding humor in her cancer diagnosis. On Showtime’s United States of Tara, the title character has multiple personality disorder.

Notably, at least four cable characters with disabilities are portrayed by actors with disabilities: Character Walter White Jr. on AMC’s Breaking Bad has cerebral palsy, as does actor RJ Mitte; ABC Family’s Secret Life of the American Teenager features the character Tom Bowman, played by Luke Zimmerman an actor with Down syndrome, and Tom’s girlfriend Tammy, played by Michelle Marks, an actress with a developmental disability; character Thor Lundgren on Showtime’s Nurse Jackie has diabetes and a prosthetic eye, a storyline inspired by Thor’s portrayer, actor Stephen Wallem.

“I did want to explore that because there are so few diabetic characters on TV and in film,” Wallem told The Advocate earlier this year. “It’s very frustrating when you have the disease because most people don’t understand the severity of it, so this felt like an amazing opportunity to help expose people to diabetes and how serious it is without being preachy. If I can make any other diabetic feel a little less alone, it’s worth it.”

SUMMARY
In other professions and industries, employees are hired for specific skill sets. Historically, people with disabilities have most often been portrayed on stage and screen by actors who do not have disabilities. “Popular programming on cable is leading the way when it comes to developing complex, multi-layered characters with disabilities, as well as the casting of actors with disabilities,” said Hollander, “something the broadcast networks should take a lesson from.”

What the most popular programs have in common is diversity in series regulars and stories. “We know that diversity makes those shows more interesting to watch, but the lack of representation on the broadcast networks indicates a failure to reflect the audience watching television,” said Hollander. “We encourage more inclusion of producers, writers, directors, casting directors, and performers with disabilities in the process of creating television that represents the vast range of people that make up the American Scene.

“I AM PWD applauds producers who embrace diversity and create characters with disabilities in their shows,” said Hollander, “and applaud even louder those producers who make the effort to search as hard for actors with disabilities to portray those roles.”

NOTES ON METHOD
GLAAD compiled as best as possible complete character data for all scripted broadcast network shows at press time. This I AM PWD analysis of characters with disabilities is presented with the disclaimer that some character information may change before or during the programming season.

ABOUT I AM PWD
I AM PWD is a global civil rights campaign seeking equal employment opportunities for people with disabilities throughout the entertainment and news media. I AM PWD was founded by members of Screen Actors Guild, AFTRA and Actors’ Equity Association to bring media and public attention to the issues of media access, inclusion and accuracy for people with disabilities. You can visit I AM PWD online at IAMPWD.org .

Press Contacts:
Pamela Greenwalt
Screen Actors Guild
(323) 440-2892
pgreenwalt@sag.org

Christopher de Haan
AFTRA
(323) 634-8203
cdehaan@aftra.com

David Lotz
AEA
(212) 869-8530
dlotz@actorsequity.org

Wheelchair rowing design wins $20,000 grand prize in global design contest

From PRNewswire:

NEW YORK -- A new invention could help millions of manual wheelchair users increase their mobility while decreasing upper body, repetitive stress injuries. Many who suffer from muscle pain, torn rotator cuffs, joint degeneration, and carpal tunnel syndrome due to muscle overuse will benefit from the Rowheel Wheelchair Propulsion System. This innovative design uses a pulling/rowing motion as opposed to the standard pushing motion.

Developed by Salim Nasser of Merritt Island, Fla., the Rowheel System design involves adapting a planetary gear system at the center of the wheel, which reverses the pulling motion of the user into a forward motion of the chair. The unique change from pushing to pulling along with the mechanical advantage created by the use of the gear system provides an overall increase in user endurance and range.

Mr. Nasser, who is himself wheelchair-bound, originally designed the system as his senior design project while attending Florida International University (FIU). The original design took 4-1/2 months from concept to prototype. Mr. Nasser said, "I thought it was a great design and that someone would be able to use for their own health." Mr. Nasser is currently an engineer at NASA's Kennedy Space Center where he performs structural and dynamic analysis for flight hardware and ground support equipment.

After hearing the news that he was the grand prize winner of the "Create the Future" Design Contest, Mr. Nasser replied, "It would be the ultimate satisfaction to see your design come to life and be used by other people."

The Create the Future Design Contest is sponsored by PTC (www.ptc.com), COMSOL (www.comsol.com), and Tech Briefs Media Group (www.techbriefsmedia.com). The Rowheel Wheelchair Propulsion System was among the new product ideas submitted in the eighth design contest, which attracted a record number of qualified entries.

Disabled equestrians compete in Los Angeles

From the Los Angeles Times. In the picture, Jessica Griffin, 6 , pulls in the reins during an equestrian competition, with the help of Elsa Caplan and Peter Ruffner.



Cathy Sulsona lives in a world where everyone looks down on her in her electric wheelchair. Sometimes passersby look right past her, or have trouble decoding her slurred voice. They see only the cerebral palsy.

But when she climbs on her quarter horse, she rises above them.

"I feel normal," Sulsona, 43, of Riverside said as she sat next to her horse at Hansen Dam equestrian center. "I'm not looked down on."

Sulsona was among about 115 riders at Sunday's daylong Kiwanis Equestrian Competition for Special Athletes. Children as young as 4 competed for ribbons, some in wheelchairs or with prosthetic limbs, others with autism, Down syndrome and learning disabilities.

Most of the competitors, including Sulsona, started riding through therapeutic programs that pair disabled riders with coaches and aides, called leaders and side walkers, who help guide both horse and rider.

Riders and their families talked Sunday about their struggles to become independent, on horseback and in life.

Ivania Lujan's 11-year-old daughter Jessica started riding in August, and already she has noticed a difference.

"It's something between the horse and the child," said Lujan, 41, of Whittier. "I see that my daughter is getting more independent."

Jessica rides a Welsh pony called Topper with the help of two aides, including volunteer Cheryl Hoffman, who said she has noticed the change in Jessica as well.

"It makes a tremendous difference in terms of self-esteem, balance and coordination," Hoffman said.

Coaches talked about disabled students whose experience riding horses inspired them to learn to walk, about riders with cleft palates who got the confidence to start talking, and those with learning disabilities who started lifting their heads and hands in class.

Sulsona started riding a decade ago at Quantum Leap Farm, a nonprofit therapeutic riding organization in Norco. Her mother, Cathy Sulsona, 63, who works with the disabled and as a foster parent, feared her daughter would fall off, even with four aides standing at her side.

"That's what scared me the most — she's so spastic," Sulsona's mother said. "I was worried once she got on the horse, what's going to happen?"

Sulsona fell. Then she got back on the horse. Through cold days, when her muscles stiffened, she persevered and progressed. Eventually, she shed her side walkers, then her leader, until she finally was riding solo. That was five years ago.

Now Sulsona lives on her own with her Chihuahua service dog Hercules, volunteers at a school for the profoundly disabled three times a week and has her own horse, a mild-mannered quarter horse named Chico who wears a rhinestone-studded harness. She has also dabbled in kung fu, but she still prefers riding.

On Sunday, Chico nuzzled Sulsona's neck as she prepared to compete in her third event. Her advice to prospective riders?

"You can do anything if you put your mind to it," she said. "If you have the determination, you can do it."

Congress passes the 21st Century Communications and Video Accessibility Act

From The Hill in D.C.:

The House approved a bill late Sept. 28 that would make it easier for the deaf and blind to have access to television, the Internet, smartphones and other communications technologies.

The 21st Century Communications and Video Accessibility Act would update the accessibility requirements of the Communications Act to take into account new Web-based technologies. The Senate passed the bill in August behind the leadership of Sen. Mark Pryor (D-Ark.). President Obama is expected to sign it into law.

“Passage of this bill is a landmark achievement in the fight for equal access to technology for all Americans," said Rep. Edward Markey (D-Mass.), the bill's author. “Two decades ago, Americans with disabilities couldn’t get around if buildings weren’t wheelchair-accessible; today it’s about being Web-accessible.”

The bill would implement a number of requirements aimed at making it easier for people with disabilities to use televisions and smartphones, particularly to access the Web. For example, the bill would enable audible descriptions of action on-screen for the visually impaired and require Internet telephone equipment to be compatible with hearing aids.

Industry groups representing the wireless and cable industries hailed passage of the bill and pledged to work with the government to implement its provisions.

"Americans are more reliant than ever on communications devices and networks in their daily lives, but Americans with disabilities can derive particular benefits from these technologies," said Walter McCormick Jr., president of the broadband trade group USTelecom. "Broadband is an essential building block of every modern American community, and we believe this legislation makes many opportunities accessible to all Americans."

The bill will also mandate that remote controls have a button that turns on closed captioning and require captions on new television shows broadcast online. Similar allowances are made to allow the visually impaired to use TV menus and access the Web via smartphones.

NYC mother says school's broken elevator means her disabled daughter, other disabled children can't attend classes

From the NY Daily News:

The broken elevator at a Manhattan middle school prevented two wheelchair-bound students from attending their first two and a half weeks of classes.

Intermediate School 143's elevator - which officials acknowledge has been broken since July - should have been fixed in time for school, one of the outraged parents charged.

"They don't understand the elevator is a symbol of pretty much everything for her," said Rosalyn Sanchez, 32, mother of Ashley Santiago (pictured), 13, an eighth-grader. "Her life is upstairs. Her class is upstairs."

Ashley spent at least one day in the first-floor teachers' lounge before being moved to a classroom.

But Ashley's mom says the girl wasn't getting the same instruction she would have in her regular classes.

"They're just giving her a pamphlet of stuff. ... She's not being taught the way she's supposed to," said Sanchez, who wants her daughter transferred to another school.

"They know there are kids in wheelchairs. Why aren't they doing it faster? Why aren't they working on it 24 hours a day?"

Buildings Department records show inspectors rated the elevator "unsatisfactory" in two consecutive annual inspections.

But the city Education Department yesterday insisted the elevator will be back in service as soon as Monday.

"Repairs on the elevator are complete. Department of Buildings has to inspect it on Monday and then it will be put back into operation," said agency spokeswoman Margie Feinberg, noting the Education Department officials had helped the school prepare for the elevator being out of service through the end of the month.

"We worked with the school and the network prior to school opening to make adequate arrangements for the students until construction was done," she said. "We understand how truly difficult this has been."


Facility for children with Down syndrome in Trinidad in financial trouble, teachers unpaid

From Newsday in Trinidad-Tobago:

A play fort promised to the children of the National Association for Down’s Syndrome (NADS) by Fluor Daniel South America Limited has been put on hold as the international engineering, procurement and construction company has discovered more urgent issues to be addressed first.

Fluor had promised to construct a special play fort for the 16 children who attend NADS at Sydenham Avenue in St Ann’s, but general manager at Fluor, Jim Wilkins, said the facility was in financial trouble.

“We came out here for a visit to do some final logistics and planning for the play fort and what we found was that they had needs that were more urgent.

“They owed money on their telephone and electricity bills, Internet, TTEC,” Wilkins told Sunday Newsday.

“They haven’t been able to pay their teachers and so we decided to take some of those things on.

“The fence is damaged and some folks tend to come in here and when they come in here the staff is worried they might take part of the fort or break it or something,” Wilkins explained as Fluor employees set to work scrubbing, painting and power washing the one-storey structure.

“We helped them with some of their bills, paid their teachers and we’ve gien the place a general cleaning for the new school year.

“Then we’ll look and see what can be done to address some of their concerns they’ve got and then put the play fort in,” he said.

Wilkins said they have already bought everything that is needed for the fort, but felt helping with the bills was priority number one.

Volunteer Tara Mootoo is begging Education Minister Dr Tim Gopeesingh to step in an assist them.

“We haven’t paid teachers for July, August and this is September. We don’t have a cash flow to address anything in the school, working material, nothing like that. Our bathroom is hardly functioning. Our water tank is not even connected to give a supply of water to the school.

“These are children with disabilities and we need to address it. There are children who cannot afford to come out to school.

“Let us get those children out and get them in school, the parents could get a reprieve and the children could be in a nice atmosphere,” she said.

Mootoo added that they had no security on the compound. She said most of the people at the school were volunteers who were willing to try to keep the institution running, but they needed help.

“Imagine teachers haven’t been paid yet and they only receive $2,500 a month and yet we can’t pay them, but they are still here. We have been trying for the longest while to get the school registered under the Ministry of Education and for some reason or the other we haven’t been successful so far.

“We would at least like the ministry and the minister to step in to help us get this school functioning, for the community and for all the children with disabilities who cannot afford it. Sponsor the children so they could have transportation, or play a sport.

“We have been neglected because a lot of people don’t even know this place exists or that there are children here,” Mootoo said.

She added that she has been at the school since 2006 and the place had never been cleaned the way it was now, and praised Wilkins and his staff.

“It’s the first time we have had a company with its manager and staff coming out to help us put it together,” she said.

Cambodian woman's mental illness, family members' murders in Seattle linked to trauma of the past

From the Seattle Times:

Like thousands of her countrymen, Saroeun Phan (pictured) fled Cambodia's genocide in the late 1970s, hiking through the jungle for days before reaching Thailand.

She left behind the horror of Pol Pot's Khmer Rouge, which exterminated as many as 3 million people through execution, torture and starvation, forcing many into labor camps.

Local mental-health providers, citing privacy laws, could not talk about Phan, who killed three family members and wounded her daughter on Sept. 23 in her West Seattle home before committing suicide.

But they say the events Phan and thousands of other refugees experienced in Cambodia still haunt them and can exacerbate underlying mental-health problems. And because of a stigma many feel toward mental illness, refugees like Phan often have difficulties seeking help or sticking with treatment.

Family members said Phan, 60, had struggled with depression and schizophrenia for years. They were unsure whether she'd been taking her medication in the past few months.

"I don't think anybody can really appreciate the horror that was Cambodia," said Dr. Carey Jackson, medical director of the international clinic at Harborview Medical Center. Studies showed the average Cambodian refugee family experienced seven traumatic events — more than twice as many as other Southeast Asian refugees — including torture, rape, watching the torture or rape of a loved one, imprisonment and warfare, he said.

"They frequently don't talk about it," said Jackson, an internist. "There's nothing there they're particularly proud of, so they don't pass it on to their kids. They sublimate it; they push it down ...

"They are literally haunted people."

Phan's family members recalled how she would become agitated and fearful, reacting to the sound of gunfire in a video game, thinking someone was trying to kill her.

She was mugged recently on Beacon Hill and became fearful of going out alone, said her husband, Chhoey Sok. She took a self-defense class and learned to shoot a gun, he said.

Researchers say Cambodian women in particular are at greater risk for developing serious mental-health problems.

"It is reality for many of our community members who have to relive that traumatic situation," said Yoon Joo Han, director of the behavioral health program at Asian Counseling and Referral Service.

For some Cambodians, the Asian counseling center may use nontraditional techniques such as acupuncture or enlisting a shaman, she said. The challenge is made more difficult by the stigma many Southeast Asian refugees feel about mental illness. That, coupled with schizophrenia's very nature, "makes it very hard for our clients to take medication," Han said.

Some of that reluctance is based on history, she said. Many have come from cultures where, in the past, "if you have mental illness, you were taken involuntarily and locked up forever, with no treatment and no rights."

It's more difficult for people from Southeast Asian cultures, she said, to see mental illness in the same way they see physical illness — as something that, if treated, can get better.

"That understanding of mental health needs to happen in our community," she said. "Unless people gain insight to their status and need for the medication, it's always hard to convince people to take medication."

For older people, there's also a certain amount of pride, said Sopha Danh at the White Center Community Development Association. "They think they should be wiser than to have such problems," she said.

Phan had received some type of care at Harborview Medical Center, but she hadn't been seen there for about seven years. The family last week was unable to share any details about her recent treatment.

Mental-health providers also said modern life is difficult for Cambodian elders, even without diagnosed mental illness. While older people are respected in traditional Cambodian culture for their wisdom, older refugees who resettle often find themselves lost in their new life.

The farming skills they once mastered — reading the wind and weather — aren't helpful in a new and foreign urban environment.

"All the things that they knew were useless here," Han said. "The family is broken down. It is very, very difficult."

Here, many refugees also face financial hardships that make it difficult to get treatment or medication. Mental-health providers said all services are squeezed by budget cuts and the many people seeking treatment.

When an illness causes a patient to begin skipping medication and other help, intensive follow-up is needed, said Jackson, of Harborview Medical Center.

"Those services are eroding," he said. "It's harder in the community to get both primary care and mental-health services for the chronically mentally ill. There are a limited number of providers and limited numbers of resources for managing issues of language and culture."

Two Washington state girls raise funds to build therapeutic playground

From KOMO-TV:

BREMERTON, Wash. -- Two girls in Bremerton have accomplished something that adults didn't even try to tackle.

Best friends Paris Harrison and Alanna Nixon (pictured) dreamed of tackling a project bigger than planning another sleepover. The girls asked Kitsap Mental Health Services for community service suggestions.

"And none of them really we grabbed on to," Harrison said.

The initial ideas were too simple and small.

"Then I thought, 'Do I dare mention the playground?' This is really big," Nixon said.

The project? A $30,000 therapeutic playground for kids suffering autism, fetal alcohol syndrome or deep depression at Madrona Day School.

"We were 11, had no idea what we were doing," Harrison said.

Somehow the girls mustered the muscle and money -- 94 yards of chipped wood, a donation of $10,000 -- to build the playground.

The home-schooled eighth and ninth graders put on presentations for the Elks and Rotarians.

"It was really hard (but) got easier 'cause we were shy," Nixon said.

And now their heads are spinning with happiness as this week they'll finally see the students they've helped.

"It's amazing to know helping someone who can't help themselves," Harrison said.

The kids raised $8,000 more than they needed, so they used that to buy more equipment for the playground, including a climbing wall.

And now, the friends are already talking another dream, building a bigger school to go with the playground.

"Anything's possible if you put your heart and mind into it," Harrison said.

Arthur Penn, director of original "Miracle Worker," dies

From Playbill:

Arthur Penn (pictured), a serious-minded director who, rare among his colleagues and despite a sporadic output, left a significant mark in both film and theatre, died Sept. 28, the day after his 88th birthday, according to friends in the industry. Mr. Penn had been in ill health over the past year.

By the time Mr. Penn directed the 1967 movie "Bonnie and Clyde," an iconic film that ushered in an era of counterculture-inflected excellence in Hollywood, he had long established himself in the live television and stage worlds of New York City. In the late 1950s and early '60s, he staged back-to-back hit productions of two plays by William Gibson, Two for the Seesaw and The Miracle Worker, and the Pulitzer Prize-winning dramatic adaptation of James Agee's "A Death in the Family," All the Way Home. Mr. Penn was nominated for a Tony Award for all three plays. He also directed, in 1960, the highly influential and sophisticated comedy performance, An Evening With Mike Nichols and Elaine May, which made stars of its two featured players.

"Over the past five years," observed the New York Times at the time, "the emergence of Arthur Penn as a New York director has probably been the quietest assumption of authority ever to take place in show business."

These successes earned him a ticket to filmmaking. His first assignment was the well-received western, "The Left Handed Gun," an early Paul Newman vehicle that he gave a Freudian spin. He found the experience disagreeable, however. "I finished shooting, they said 'Goodbye!,'" he recalled. He didn't see the finished film until it hit the movie houses.

Parents in California hold vigil for autistic teen police say was tied up, stabbed by mother

From KCRA-TV:

MODESTO, Calif. -- A group of parents with autistic children organized a candlelight vigil Monday night for the autistic teen Modesto police say was tied up and stabbed by his mother.

Several dozen people gathered outside the apartments where Miles Hankins lives with his mother, Anitra Hankins.

Many took time to write prayers for Miles on a message board set up in his honor. Others left behind stuffed animals and other mementos.

Miles is in a Modesto area hospital in critical but stable condition. Police said Anitra is in jail on suicide watch.

People at the vigil prayed for both Miles and Anitra.

They said they can’t understand why Anitra may have assaulted her son, but they said they knew she was struggling to care for him.

“It’s emotionally draining. It’s emotionally taxing on families, and if you are talking a single parent, I don’t know how a single parent does it,” said Gia McElroy, who also has a child with autism.

“I’m just hoping he is going to be OK. And you know, I am concerned for him. I am concerned for his mom as well. I don’t think that anybody can really say what went on behind closed doors,” said Deborah Daugherty, Miles and Anitra’s neighbor.

The group who planned the vigil, Families for Effective Autism Treatment, hope what happened will increase awareness about the need for better services and support for families with an autistic child.

No divorce for the Roloffs of "Little People, Big World," Matt says

From Radar Online:

As one of television’s favorite families prepares to say farewell, the star and patriarch of TLC’s Little People, Big World is setting the record straight from rumors of his reported death to claims that his marriage is headed for divorce. In an exclusive interview with RadarOnline.com, Roloff says that despite six great seasons on the air, he’s “ready” for his reality television time to end.

“I think the word is relieved. It’s been six long years with cameras in my house,” he said. “TLC is by far the best company to do a reality show with, but the process itself is grueling. It’s stressful. I’m ready for it to be over.”

Critics claim the end of the show coincides with a breakdown in Roloff’s marriage to wife Amy -- something he laughs off. (Both are pictured.)

“Amy and I are still sleeping in the same room, in the same bed,” Roloff joked, adding, “With all the goodies that come with that!”

Roloff also explained what really happened at the end of season 5, which left audiences wondering about the fate of the 49-year-old father of four after cameras caught him falling to the floor in an apparent heart attack. Internet reports soon announced he had died.

“I’m not dead, as you can clearly see!” Roloff told RadarOnline.com. “I saw the screening when the episode was complete and I saw that they showed me fainting and falling to the ground. I suffer from vertigo and I had a dizzy spell that day. I don’t even remember it happening, but I hit the floor.

“It’s not the first time I’ve fainted, it was just the first time they caught it on camera.”

Roloff, who suffers from a bad left shoulder, admits he can see now how the combination of grabbing his left arm and falling to the ground sparked speculation that he’d had a heart attack.

“Grabbing your left arm and falling down is a bad thing, I guess,” he laughed.

While he was abundant with praise for TLC and the way it treated his family over the last six seasons, Roloff was candid about the stress a reality show can put on a marriage.

Jon and Kate Gosselin battled a painfully public divorce after five seasons of letting cameras into their home on their reality show Jon & Kate Plus 8. The couple had been married ten years.

“The reality business is not for the faint at heart. Amy and I both met Jon and Kate when they were together, we broke bread with them,” Roloff revealed.

“Jon and Kate were a little younger than Amy and I and we could see then the fragility [that was developing]. Amy and I have been through the exact same thing but I think we had just enough maturity to realize what it was that we had signed up for and we decided to muscle through it.”

The final season of Little People, Big World is currently airing Mondays on TLC.

Louisville, Ky., breaks ground on planned inclusive playground

From The Courier-Journal:

Work is expected to get under way Sept. 27 on a $650,000 project that will include a large playground catering to disabled children and a companion sprayground next to the Big Pavilion at Shawnee Park in western Louisville.

The playground designed to allow disabled youngsters and other children to play side by side should be open next spring, said Margaret Brosko, spokeswoman for Louisville Metro Parks. Metro Parks is sponsoring the project along with the Olmsted Parks Conservancy and the DREAM Foundation.

This will be the third local “inclusive playground” in which the DREAM Foundation and the Olmsted Parks Conservancy have had a hand. A small, demonstration project opened at Des Pres Park off Lowe Road in 2004 and a large facility after which the Shawnee site will be modeled opened at Iroquois Park in 2007.

The DREAM Foundation was created by Mitch and Meredith Barnes of Louisville, after doctors diagnosed their son, Mitchell, with Duchenne muscular dystrophy, a crippling form of muscular dystrophy, in 1998 The foundation stands for Duchenne Research Education and Miracle Foundation. Their son is now a sophomore at Male High School and is expected to attend a 10:30 a.m. ground breaking at Shawnee Park.

An existing five-year-old small playground just off the one-way loop road at Shawnee Park will be moved about 100 feet and be incorporated into the new play area, which will feature a large play structure with swings, slides and other equipment. It will have four decks on four levels and a series of ramps with handrails leading from one level to another that will allow wheelchair access. There also will be “transfer stations” where a child can move or be moved from a wheelchair to a piece of play equipment.

There will be a separate jungle gym-like structure called a child fitness circuit and elements that can be rocked back and forth by groups of children to promote teamwork, said Paul Adams, a sales agent with Countryside Play Structures of Parker City, Ind., which built the equipment.

The other main feature of the project will be Metro Parks’ 13th
sprayground. It will have about 15 nozzles shooting water jets. The main part of the sprayground will be built to resemble a paddle boat, with two “smokestacks” from which water will be emitted. The surface will be a blue rubberized material intended to represent water.

Mitch Barnes said it means a lot to his family to “see all these groups working together for one common goal: to enhance the quality of life for all children, disabled and not.”

Mayor Jerry Abramson called the effort of the Barnes family and the foundation “truly inspiring. Their hard work is resulting in another great playground, where children can play together, regardless of their level of ability.”

The funding for the projected included $300,000 from Metro Parks, $200,000 from the DREAM agency and $150,000 from the Olmsted group.

Officials said the DREAM Foundation continues to raise money for playground projects.

Metro Parks has numerous play areas with at least some equipment that is accessible to the disabled, Brosko said.

Jack Will, the foundation’s development director, said plans are afoot to develop “play together playgrounds” at local schools, including one that will be announced next week planned at Cane Run Elementary Community School.