Monday, February 28, 2011

Deaf actress Marlee Matlin cast in ABC Family’s "Switched at Birth"

From The Hollywood Reporter:

Oscar winner Marlee Matlin (pictured) has been cast in ABC Family’s Switched at Birth.

In addition, Sean Berdy has been upped to series regular status. Berdy, a deaf actor, plays Emmett, Daphne’s (Katie Leclerc) best friend from school.

Matlin, who has appeared on The West Wing and The L Word, will guest star as Melody, the mother to Emmett (Berdy) and best friend to Regina.

“I’m so proud to be a part of this show,” Matlin said “It’s incredibly inspiring to see a television drama embrace a storyline that portrays diverse families from both the hearing and the deaf and hard of hearing worlds.”

Switched at Birth centers on two teenage girls who find out they were switched at birth as newborns in the hospital. Vanessa Marano, Lea Thompson, D.W. Moffett, Lucas Grabeel and Constance Marie also star.

Saucy ad about hiring blind people from Norwegian Association for the Blind a hit on YouTube

From Here's the link to the ad on YouTube.

A saucy video showing a boss romping with his secretary in front of a blind office worker has become an Internet hit after it was uploaded on YouTube.

The clip shows the boss praising the blind clerk for his work while he silently strips off for a sex session with his PA in the computer print room.

And when the worker finally leaves the room, the pair fall on the floor to begin frantically making love with their groans of passion drowned out by the noise of the printers.

The ad - produced by the Norwegian Association for the Blind - closes with the line: "If you want to avoid gossip at work then hire a blind person. It's a funny advert but the point is to make people think positively about blind employees.

"The blind man in the advert knows his job inside out and you're never quite sure if he knows what's really happening or if he's just being discreet," explained a charity spokesman.

All state funding for Special Olympics in North Carolina may be cut

From WRAL-TV. Pictured are teammates Karen DeHart and Courtney Bell (L-R) from Watauga County, N.C., during the Summer Games aquatics portion of the North Carolina Special Olympics.

RALEIGH, N.C. — Special Olympics North Carolina President Keith Fishburne said he has received state funds regularly since 2004. At one time, the group was getting $200,000 a year.

Now all state funding for the group might be lost.

Gov. Beverly Perdue introduced a budget on Feb. 24 for the upcoming fiscal year that eliminates money for some nonprofits, including Special Olympics.

“As far as the governor is concerned, we have been taken out of her budget,” Fishburne said Thursday. “We are very disappointed.”

State funds make up around 2 percent of the Special Olympics budget. The nonprofit has also seen a decrease in donations. Revenue for the organization is down $400,000 over the past 18 months.

Already, events have been scaled back, and Fishburne said he is worried about what will happen next.

“We are going to do our best not to completely cut events,” he said.

Regenia Sanders, mother of Special Olympics athlete Theara Sanders, said she fears losing the group that has helped her daughter’s self-esteem and independence.

Theara Sanders, 26, has been a Special Olympics athlete since she was 10. She plays tennis.

“If I win, I feel really, really great about myself,” Theara Sanders said.

Fishburne said he is not giving up. He will make a case to the General Assembly to get Special Olympics back in the budget.

Other nonprofits who were cut from the budget are Kids Voting and Communities in Schools.

Other groups could see less funding as state agencies which they are under make mandated cuts.

New research shows that infants, toddlers can have serious mental health disorders, but get little treatment

From ANI:

A new research has shown that infants and toddlers can suffer serious mental health disorders, yet they are unlikely to receive treatment that could prevent lasting developmental problems.

One barrier to mental health care for young children is "the pervasive, but mistaken, impression that young children do not develop mental health problems and are immune to the effects of early adversity and trauma because they are inherently resilient and 'grow out of' behavioral problems and emotional difficulties," according to researchers Joy D. Osofsky, of Louisiana State University, and Alicia F. Lieberman, of the University of California, San Francisco.

Contrary to traditional beliefs that infants cannot have mental health problems "because they lack mental life," even young infants can react to the meaning of others' intentions and emotions because they have their own rudimentary intentions and motivating emotions, according to an article by Ed Tronick, of the University of Massachusetts, Boston, and Marjorie Beeghly, of Wayne State University.

While trauma can be a significant factor in developing mental health issues, the authors encourage more study of the impact of everyday life and continual interactions between infants and parents or other caregivers.

"Infants make meaning about themselves and their relation to the world of people and things," Tronick and Beeghly stated, and when that "meaning-making" goes wrong, it can lead to development of mental health problems.

"Some infants may come to make meaning of themselves as helpless and hopeless, and they may become apathetic, depressed and withdrawn. Others seem to feel threatened by the world and may become hyper-vigilant and anxious." Apparent sadness, anger, withdrawal and disengagement can occur "when infants have difficulty gaining meaning in the context of relationships," they write.

Because early childhood mental health has very few practitioners, it is often difficult for parents or children's programs to find help when they think it is needed, according to Osofsky and Lieberman.

If they do find such help, "the cost of preventive services or treatments for children under the age of three years may not be covered by insurance or other resources," notes another paper, by Florence Nelson, of the national nonprofit ZERO TO THREE and Tammy Mann, of the Frederick D. Patterson Research Institute.

Mental health risks to infants are magnified by the fact that "the youngest children, from birth to age 5, suffer disproportionately high rates of maltreatment with long-term consequences for mental and physical health, pediatric health, and child care providers seldom identify or refer children under 5 years old to mental health services," according to Osofsky and Lieberman.

Their study cites U.S. Department of Health and Human Services statistics from 2008 and 2010 showing that 79.8 percent of the children who died from abuse and neglect were younger than 4 years old, and that the first year of life is the most dangerous. The paper also examines the impact of poverty and points out that previous studies have revealed that "one in five children in poverty has a diagnosable mental health disorder."

The study has been published in the American Psychologist.

Canadian program tries to support aging adults with developmental disabilities

From The Waterloo Record in Canada:

KITCHENER, Canada — Tom and David Schultz worried when their developmentally disabled brother, Matthew (pictured), needed to move out of his supported residence into a long-term care facility.

Matthew, who has Down syndrome, lived there for many years and was accustomed to the home and people.

“We were very concerned,” David said. “This would be a completely new environment.”

But Matthew, 57, needed more supervision and security because he was wandering away from the David Fischer Residence in Waterloo and beginning to show signs of Alzheimer’s disease.

A little over a year ago, Matthew’s family moved him into the A. R. Goudie Eventide Home, just across Frederick Street from Tom and his wife Lois Schultz.

“Our fears were somewhat justified the day he moved in,” David said.

Matthew did not want to be left behind in his new room.

“He wanted to go home,” Tom said.

Matthew’s transition into his new life has been eased by Linda Walton (pictured), who’s the long-term care liaison for K-W Habilitation Services. The agency provides support services to people with developmental disabilities, including residential services, job development and community links, and has long been involved in Matthew’s life.

The position started about a year ago, responding to changing demographics of the people supported by K-W Habilitation Services. Life expectancy for people with developmental disabilities used to be 40 or 50. Community-based services and group homes means they’re living longer.

“Their quality of life is definitely drastically improved,” said executive director Ann Bilodeau.

The agency began seeing their aging clients needing to move out of a group home and into long-term care as their health needs increased and began suffering from chronic disease such as cancer and Alzheimer’s disease. And there are safety concerns when a person becomes less mobile and could suffer a fall or other injury.

“We don’t have the resources to do nursing care in group living,” Bilodeau said.

As clients moved into long-term care, many staff visited on their own time. Recognizing the value of that continued connection, the agency started the liaison position.

“So when that transition occurs, they’ve got a familiar face to follow them,” said Chris Gefucia, director of residential services.

Now Walton gets to know the clients who are aging and likely soon to move into long-term care. Then when the time comes, she’ll continue to visit and look after their needs, such as pursuing government support or arranging specialized transportation.

It’s an extension of the service that’s always been provided to ensure a client’s best interests.

“I think it’s very important that there’s some kind of oversight,” Walton said.

Walton met Matthew when she started the job and now meets with him regularly at the Eventide home and Kinsmen Centre in Kitchener. (K-W Habilitation Services was started in the 1970s by families and the Kinsmen service group.)

Matthew has been going since he was a teenager to the Kinsmen Centre, where he has a job in the sheltered workshop and socializes.

He continues going there three times a week, which his family knew would make his move easier because he’d still be around his long-time friends.

“They’ve all grown up together,” Tom said.

Matthew is content in his new home, enjoying regular visits with his siblings but now happy to go back to his place.

“I like it here,” Matthew said.

Bilodeau said the liaison position will make a huge difference to people like Matthew and their families to ease their worries around a move. Also long-term care homes will benefit from their expertise in supporting people with disabilities.

The demand for a liaison will only grow as the population ages and more people helped by K-W Habilitation move into nursing care and cope with serious illness. Bilodeau would like to see a place where their clients can go as they need more support, but don’t yet require the intense care of a long-term facility.

The liaison is a first step to meet the changing needs, Bilodeau said.

“That’s what we’re gearing up for. We’re getting prepared.”

California amputee makes a name as a snowboarder

From The Union in Nevada City:

“Because I can.” That's why Evan Strong (pictured), a Maui kid with one and a half legs, wanted to learn to snowboard just more than four years ago.

The statement rings of George Mallory, the British climber who, more than 90 years ago, told a New York Times reporter he wanted to climb Mt. Everest “because it's there.”

But Strong utters the phrase with a sense of wonder, rather than of defiance.

The 24-year-old, who now makes his home in Nevada City, wants to do everything he can because he's blessed just to be here, much less able to ride a board of any type.

A horrific motorcycle accident took the lower half of his left leg more than six years ago, and kicked off a period of rehabilitation and discovery that led him close to the pinnacle of snowboarding success: A recent X-Games boardercross victory.

“A couple years into my recovery, I was skateboarding and was like, ‘Wow, I'm able,'” Strong said. “I had the

perspective like, what I had was so valuable. I'm so blessed to even go out and roll around on my skateboard, and I have to snowboard just because I can.”

“I'm not OK.”

That's what Strong thought in November, 2004, after a driver crashed into his motorcycle on his home island of Maui in Hawaii.

Strong, then 17, said he was on his way home from work when a woman driving while lighting a cigarette ducked behind her dashboard to do so.

She drifted out of her lane on a curve into Strong's oncoming lane and crashed head-on into his bike, flinging him alongside a guardrail on the road.

Strong, a sponsored, professional skateboarder at the time, felt his helmet bounce off of the road on his way down. He glanced down at his body — noticing the accident bent his left leg over the top of his chest. The leg was fractured in multiple places, including the femur.

“That's when the pain and shock started to hit me,” Strong said.

A practitioner of meditation, Strong receded into his mind to block out the pain, until a passerby shook him conscious.

“Somebody hit me because I was laying there with my eyes shut, looking like I was dead,” Strong said. “That's when I pulled back into my body and screamed at her. ‘Why did you do that? You just pulled me back into this broken body.' But they wanted to make sure I wasn't going to fall asleep.”

Thanks to a good Samaritan — a woman returning from a Laundromat who packed Strong's wounds with her freshly done laundry — he was driven via ambulance to a Maui hospital and flown to Oahu for intensive treatment.

There, Dr. Patrick Murray, a veteran of trauma medicine during the Vietnam War, amputated Strong's leg below the knee. At that point, Strong went into recovery and rehabilitation mode, a long, arduous process where he had to relearn how to do everything.

Early in his recovery, while still at the hospital in Oahu, a male physical therapist asked Strong to try to stand on one leg. Weary from drugs and surgery, he declined. His mother then chimed in on the encouragement.

“Because of the drugs and fatigue, I had a bad attitude and kind of snapped at her,” Strong said. “My physical therapist didn't yell at me, but said ‘Don't you ever talk to your parents like that again.' As soon as he gave me that tough love, I knew I couldn't regress to that place.”

Strong harnessed a positive attitude from that point forward — and hopped on a skateboard as soon as he was home in Maui a month later.

“The first time I got on a skateboard was the day I got back from Oahu,” Strong said. “I went to see a friend at the skatepark and asked him to use his board. I stood on it with one leg and used my crutches to push me along.”

Intensive rehab ensued once Strong returned to Maui. He spent the first year or so on crutches before being fitted for a prosthetic.

“You get strong arms,” Strong said. “I could walk around on my crutches without even using my leg. You adapt. The greatest quality in a species is adaptability.”

It was a painful time for Strong, though. Blood would pool in his stump, causing severe pain that required him to lay on his back to even it out.

“I always had a very clear vision of where I wanted to go, but I didn't know how to get there,” he said. “Of course there were times of frustration, when I thought, ‘If I have to lay here for another day, I'm going to freak out.'”

But, aided by a new attitude and a new diet, Strong put the pieces back together.

“Heat destroys vitamins, minerals and enzymes, so I didn't want to eat cooked food,” Strong said. “I had a goal to be able to do things with a prosthetic that would take a lot of strength, so I was going to eat as many raw foods as possible.

“I was doing big juices every day and eating all these whole foods, and I started to feel more energized. I was more willing to go to physical therapy, work harder and feel good, and enjoy the process of recovery.”

Strapping in
Four years ago, Strong visited an uncle in Sun Valley, Idaho, and announced his intent to learn to snowboard.

“He put me on the bunny hill, and by my second day, I was doing black diamond runs,” Strong said. “I was thinking that this is the most amputee-friendly sport out there. I turn my body, and my board turns. Plus it was huge to have that edge control.”

Strong parlayed that instant attraction to the sport into seasons spent living, working, and riding at Truckee's Northstar-at-Tahoe resort. He started competing three years ago, and in January won X-Games gold at Aspen, Colo. in boardercross, a downhill free-for-all where four to six riders drop in on a course full of jumps and obstacles.

The first one to the bottom wins. Shortly after winning in the Rockies, Strong traveled to France and won two World Cup races.

This weekend, Strong plans to race at South Lake Tahoe's Sierra-at-Tahoe resort, taking on able-bodied athletes in boardercross, an event he won last year.

“Evan is one of the most motivated athletes I know to achieve for himself, but he's equally motivated to succeed for others,” said Daniel Gale, the founder of Adaptive Action Sports, a South Lake Tahoe non-profit that organizes action sports events for disabled athletes.

Strong rides for AAS, and helps runs camps teaching disabled war veterans and disabled children how to snowboard.

“It's been a very filling blessing in my life that I get to pay it forward,” Strong said. “From the worst thing that ever happened to me, came the best thing that ever happened to me.”

Teaching disabled people how to strap into a snowboard and drop down on an exposed slope is secondary to Strong's goal, he said.

“I'm more helping people to change their belief system,” Strong said. “It's possible to be what you want to be, to have a new vision and a new goal.”

Working with military veterans gives Strong a special pleasure, he added.

“They eat this stuff up. They view it as another challenge,” Strong said. “They are tough as nails, and you give them this new challenge of battling it out on snowboards. It's what they're made for. It fills my cup.”

Strong spreads his message through his riding, too. Gale is working to get the adaptive boardercross race televised at next year's X-Games, as well as getting it added to the 2014 Winter Paraylmpics roster in Sochi, Russia.

“We can change the landscape for the general adaptive community,” Gale said. “It's going to be part of the sports landscape, whether people like it or not.”

Strong's athletic goal is a berth at Sochi, to show the world what disabled athletes can do.

“I want to show that it can be done,” Strong said. “If there's a disabled kid out there, if they want to be the next (pro snowboarder) Nate Holland or Shaun White, in this day and age, that's a possibility.”

Texas researchers find serotonin may play a role in autism

From KENS5-TV:

SAN ANTONIO -- Autism is a developmental psychiatric disorder that remains a mystery. Now, some San Antonio scientists are conducting studies that show the brain chemical serotonin may play a role in many cases of autism.

In a lab at the University of Texas Health Science Center, mice are the important animal models serving as tools for trolling the mysteries of the human mind.

“These mice are inbred strains of mice,” explained Georgianna Gould, Ph.D., a UTHSC neuroscience researcher. “And the behavior that they have is reminiscent of autism. But we can’t say that the mouse has autism.”

The mouse model mimics some important autism traits. For example, control mice might groom once an hour. The inbred mice show repetitive tendencies, performing the ritual six times as often. In an experiment, the animals with autistic tendencies will bury more shiny marbles in the cage. And when placed in a social interaction chamber, will tend to ignore other mice.

“The mouse will spend less time in the chamber that has a stranger mouse confined in a little cage, and more time grooming itself and exploring the rest of the chamber,” Gould observed.

Gould and her colleagues are studying the role the brain chemical serotonin plays in autism.

Images from the mouse brains show differences in receptors for this important “feel good” brain messenger.

“In about 20% to 40% of autism cases, people have signs that the serotonin system is dysfunctional,” Gould said.

In a recent paper in the Journal of Neurochemistry, Gould showed an anti-anxiety and antidepressant medication improved social behavior in mice.

While helping children with autism may not be as simple of boosting serotonin, this new information may be a starting point for future interventions.

“There’s got to be some better way to treat people pharmacologically that may improve their chances of having a normal job, a normal life,” stated Gould.

Autism impacts an estimated one in 100 children in the U.S. to varying degrees. Scientists think it’s a combination of genetic predisposition and environmental factors that creates the problem.

Texas budget cuts threaten health of disabled children, parents say

From The San Antonio Express-News:

Estella Longoria takes her two small children to the doctor as many as five times a month.

Tristan, 7, has autism and Attention Deficit Hyperactivity Disorder. He sees his regular doctor as well as a psychiatrist, to make sure his medication is working properly.

Twenty-month-old Nathanael has Down syndrome, asthma, a hole in his heart and is legally blind. In addition to regular doctor visits, he needs intensive physical therapy to build muscle tone and help him learn things that come more easily to other children. Perhaps more so even than his brother, the attention he's given now will have a bearing on the quality of his life later on.

“It's not just a cough or an earache,” she said. “These are things that are going to affect the rest of their lives.”

Longoria takes her boys to the Frank Bryant Health Center on East Commerce, about three minutes from her East Side home. If the $60 billion in cuts passed by the U.S. House of Representatives last week become law, their primary-care provider could end up being a hospital emergency room.

“We wouldn't know where to start,” she said. “I wouldn't be able to help my children.”

The Frank Bryant Center is run by CommuniCare Health Centers, a nonprofit organization that serves more than 40,000 patients on San Antonio's East and West Sides. (Disclosure: My wife works part-time for CommuniCare.) Longoria's children are covered by Medicaid, but more than 70 percent of CommuniCare patients have no health insurance.

The House budget resolution, now in the Senate, included $1.3 billion in cuts to health centers nationwide. Among the casualties: two grant programs originally funded with stimulus dollars and later included in last year's health care reform act — both prime targets of budget-slashing Republicans.

Laurie Casias, CommuniCare's chief development officer, said CommuniCare didn't try for a backup plan once the grants were approved. If the cuts go through, she estimates that 8,628 patients served by CommuniCare in Bexar and Hays counties won't receive the care they did last year. Expansion plans to help meet medical and dental needs for thousands of new patients would have to be shelved.

All budget-cutting isn't bad, and the federal government desperately needs to narrow the gap between spending and revenue. But if lawmakers opt for the meat-axe approach, a lot of people — a lot of children — will be hurt.

“Community health centers in general have very strong bipartisan support,” Casias said. “Even President Bush significantly expanded the health center program because there was a recognition that there was a need for the uninsured, a place for them to go and secure care to keep them out of the emergency room.”

Longoria and her boys met me at the Bryant Center. Nathanael slept in her arms as she arrived but woke up while we were talking. He and Tristan played quietly together until we finished.

Longoria and her husband have learned a lot about Down syndrome in the last couple of years. They've come to adore Nathanael's sunny temperament, and she glows when she talks about him.

Before I departed, Nathanael took a good hard look at me. Then he broke into a broad, trusting smile that made me feel like I'd known him forever.

It's the face I'd like members of Congress to see before they cast any more votes.

In Minneapolis-St. Paul, woman with Down syndrome sexually assaulted on city bus

From The Pioneer-Press in Minn.

A 19-year-old woman with Down syndrome — accompanied by an apparently oblivious personal attendant — was coerced into giving oral sex on a Metro Transit bus to a St. Paul man, who later tried to get her to leave with him, authorities said.

The incident, recorded on the bus's video and detailed in a criminal complaint filed in Ramsey County district court Feb. 25, resulted in charges against Herbert Lee House III, 22, on two counts of criminal sexual conduct.

The victim boarded the Route 64 bus — which threads through St. Paul's downtown and Payne-Phalen neighborhoods — at 10:22 a.m. Tuesday, and sat toward the rear. She was "with other vulnerable adults and a personal care attendant," the compliant said.

House, who had boarded earlier and was sitting in a seat facing the victim, got out of his seat and came to sit beside her, according to the complaint's description of video footage. The two hugged, and the victim placed her head on House's shoulder, before they switched seats, with House now sitting by the window.

At 10:30 a.m., the victim gave House oral sex — an act witnessed by two teenagers who later contacted police, according to the complaint.

Four minutes later, somewhere along Payne Avenue, House got off the back door of the bus and motioned for the victim to follow, which she did. But as soon as she was out the door, her attendant yelled for her to "get back on the bus," which she also did, the complaint



said — and House followed.
The victim then sat in a different seat, shaken and apparently crying, the compliant said. It was unclear from the complaint when House finally left the bus.

The victim — described in the compliant as "totally dependent on others for her well-being" — was a student at St. Paul's Transition to Independence School, part of the St. Paul public school district, for whom the attendant worked.

The attendant told investigators that she remembered the victim trying to leave the bus, but "she had no idea that (the victim) had been sexually assaulted in the rear of the bus," the compliant said.

St. Paul Public School district spokesman Howie Padilla said he had just been made aware of the complaint late Friday and did not know the personal attendant's current status with the district.

As for how the attendant did not notice the alleged contact between House and the victim — including hugging, the victim placing her head on House's shoulder, and House placing his arm around the victim's shoulder, prior to the oral sex — Padilla said "Honestly, we're looking into that as well."

"I would say that that person has some explaining to do," said Jack Rhodes, spokesman for the Ramsey County attorney's office.

When asked, Padilla said he did not know how many other vulnerable adults the attendant was in charge of on the day of the incident.

Metro Transit police recognized House from the bus's footage. He had been charged on February 7 in another case involving "unwanted touching of a woman in the Sixth and Minnesota Transit Center," the complaint said.

When brought in for questioning, House said that he knew the victim appeared to have Down syndrome, but said she approached him and was being "too friendly" and touching him. He denied having the victim perform oral sex, but when told that the act had been witnessed said "she was just having trouble breathing," then said "he did not remember because he was in the 'zone.'"

Metro Transit officials released a statement Friday saying the organization "regrets this deplorable incident, but is very grateful to the customers who reported it," referring to the teenage witnesses. "The actions of these customers ultimately led to the arrest and charging of this individual."

House was booked into Ramsey County jail Thursday, where he remained Friday evening with bail set at $60,000. He is due in the county's district court Monday.

Georgia foster kids medicated at high rates

From The Atlanta Journal-Constitution:

Giovan Bazan (pictured) was 6 when a doctor first gave him medicine to treat his diagnosis of hyperactivity.

Bazan admits he was unruly at the time. Perhaps it was because the only parent he had ever known, his foster mother since he was an infant, had just died.

No one asked about that. Nor did anyone check years later to see that he was on a double dose of Ritalin when another physician, seeing a boy so mellowed out that he barely reacted, prescribed an antidepressant. “They start you on one thing for a problem, then the side effects mean you need a new medicine,” Bazan said. “As a foster kid, I’d go between all these doctors, caseworkers, therapists, and [it] seemed like every time there was a new drug to try me on.”

When he turned 18, Bazan elected to stop all medications. It turned out he didn’t need any of them.

Now, the Georgia House is weighing an idea to better track the psychotropic drugs foster children take at a far greater rate than other kids.

House Bill 23 hits a rare political sweet spot. The proposal to create an independent clinic review of the drugs foster children are given has support from Democrats and Republicans because of its efforts to protect the vulnerable — and projections that it will save the state millions of dollars. The state spends $7.87 million per year in Medicaid funds on those mind-altering drugs for foster kids. “This is an idea I’m very open and willing to have a discussion about,” said Speaker David Ralston, R-Blue Ridge, adding his main concern is the cost of the review.

The issue is a national one. Only half of state child welfare systems — not including Georgia — have a policy to review usage of mind-altering drugs, even though as many as 52 percent of kids in foster care are taking them.

By comparison, about 4 percent of the general youth population is on the medications, according to a 2010 Tufts Clinical and Translational Science Institute study.

“These drugs are not something you take like an aspirin,” said state Rep. Judy Manning, a Marietta Republican and chairwoman of the House Children & Youth Committee who is co-sponsoring HB 23 with Rep. Mary Margaret Oliver, D-Decatur.

“We want to monitor it and make sure the treatment is correct,” she said. “You don’t want a tragedy.”

Lack of oversight can prove deadly. Gabriel Myers, a 7-year-old foster child in Florida, hanged himself in 2009 while taking three powerful psychotropic medications, none of which had been approved for use in children.

There have been no similar high-profile cases in Georgia. Still, one in three foster 
children on Medicaid was 
prescribed mind-altering psychotropic drugs last year, according to a January report from the state Department of Community Health. More than half of them were on a daily cocktail of more than two of the drugs — some of which lack approval for treatment in children.

Oliver argues that both the cost and number of foster children on such drugs will drop if her proposal succeeds.

Her plan calls for an independent review to kick in on red-flag cases in the system, such as when a very young child is prescribed drugs for mental health or when a youngster is on multiple medications at once.

It would be up to the Human Services or Behavioral Health departments to decide what would flag cases and how to best manage the independent psychiatrists who would monitor them.

Oliver said private foundations have expressed interest in funding the idea as a national pilot program.

“Foster children are more traumatized, for horrible reasons, and that’s why their medical care has to be better,” Oliver said. “I am excited about the number of stakeholders who want to work on solving this problem with us.”

The issue may extend to lack of oversight on what drugs foster kids are being prescribed and taking. A 2010 investigation by The Atlanta Journal-Constitution revealed several companies operating foster care homes in the state had repeatedly used psychotropic medications to “subdue” children.

“Medications dispersed often aren’t to help the child with their problems but to make the child more docile for the caregivers,” said Richard Wexler, who heads the National Coalition for Child Protection and Reform. “And the paradox of child welfare care has always been the worst thing for the kids is what costs the most.”

That seems to have been the case for Bazan. Now 20, he can recall a brief period in high school when prescriptions had run out and his foster mother didn’t keep him on the stew of mind-altering drugs.

Fellow students noticed the no-nonsense boy was suddenly joking around and friendly.

“When I was off the medicines, everyone kept asking me why I was so happy,” Bazan said. “There was a real difference.”

The medications quickly 
returned, however. But Bazan said they didn’t help with the loss he felt over the death of 
his first foster mother or his feelings of being unwanted 
and under attack in the foster home he repeatedly ran away from.

He spent time in Department of Juvenile Justice facilities, where the medications kept coming, sometimes provoking seizures because some of them didn’t mix.

No one, he said, ever asked about his feelings. “They would have gotten a better response if someone had just taken a look at what was really going on in my life,” he said.

Bazan did that himself when he quit all medications cold turkey at age 18. But the years of medication already have hurt his future: His plan to enter the military to pay for college is blocked by the diagnosis of hyperactivity. He is ineligible to serve.

Bazan now works part time at the Division of Family and Children Services, acting as 
a liaison with community 
organizations and state agencies.

He also has started his own security company to provide nighttime patrols at his church in DeKalb County and others.

His goal is to get a full-time job with DFCS and persuade Gov. Nathan Deal to appoint him to the Georgia National Guard. With that, he could pay for college.

First, though, he is sharing his story in the hope that lawmakers and others will see him as a cautionary tale for what can happen when someone isn’t monitoring care of foster kids.

“I ask them, ‘Would you give all these people carte blanche with your kids, without any scrutiny of their medical history and a review of their life?’” Bazan said. “We’re just children. Someone has to look out for us. We need the same care and attention you give your own children.”

Dallas program aids autistic kids' learning with avatars

From WFAA-TV in Dallas:

DALLAS - Autism is the fastest growing developmental disability. It affects around one in 500 kids.

Children who have autism don't understand many of life's basics, like how to interact or what is socially acceptable.

The Center for BrainHealth in Dallas has taken a sci-fi approach to helping autistic children cope socially by bringing them into a virtual world where they actually have their own avatars.

The virtual world has become a place for Clark Thurston, who has Asperger's syndrome, to learn how to socially interact. Asperger is a form of autism.

Thurston demonstrated the program by taking a seat and joining his therapist in the virtual world.

"They're called avatars," said Dan Krawczyk, a researcher. "When you're driving an avatar, you're in virtual space, riding one of these characters as yourself."

"Four of five sessions in here is worth about two or three years of real world training," Thurston said.

From coffee shop get togethers to job interviews, Thurston virtually practices social situations. Like most autistic children, he doesn't understand emotions and facial expressions.

"It's not just recognizing a face," Krawczyk said. "It's recognizing emotion ... So, a lot of brain areas have to talk to each other and coordinate, and some of these connections are not as strong as they should be."

"He got bullied a lot so he carried around a lot of pain," said Lori Imel, Thurston's mother.

"We live in this highly social world and our society puts more emphasis on knowing somebody than work or brain power," Thurston said. "So, if you're deficient in the one thing our society has deemed the most important attribute, then you're in real trouble."

To turn things around, he is training at the center for eight weeks. The Center for BrainHealth is creating new technology that allows Thurston to control his Avatar's facial expressions down to the raising of an eyebrow.

In order to get that facial reaction, first they take a picture of the face to use as a baseline. The avatar will do everything the person does from turning their head right to left to looking surprised.

Using Thurston's expressions, researchers will study, track and hand tailor his training.

"The face is the gateway to social interaction," Krawczyk said.

In time, the technology will be remote, allowing anyone, anywhere to participate with researchers.

"I never even dared to hope that it would be this good," Imel said.

Thurston's mother said the progress is so great, people are finally getting to see her son for who he is and not for his disability.

In Indonesia, Health Minister asks for more prosthetics, orthotics manufacturers to meet the needs of growing number of amputees

From The Jakarta Post:

Indonesia needs better orthotics and prosthetics services due to the vast increase in the number of disabled people, a minister says.

Health Minister Endang Sedyaningsih said Indonesian disabled persons who needed orthotics and prosthetics continued to increase, as many diseases developed into more complex structures, severely affecting their health.

Unfortunately, only a few domestic manufacturers provide quality prosthetics and orthotics equipment at affordable prices due to a lack of infrastructure, facilities and skills.

“We should improve prosthetics and orthotics services, direly needed to raise the quality of life and productivity of the disabled,” Endang said on Friday at a two-day conference on prosthetics and orthotics.

According to the 2004 National Social and Economic Survey (Susenas), Indonesia’s disabled population reached 6 million people, comprised of 1.8 million blind people, 1.7 million physically handicapped people, 1.3 million people with mental handicaps, 602,784 deaf people and an additional 1.3 million people who suffered from chronic diseases.

The minister reported that the country’s disability cases have been caused by accidents, disasters and diseases, such as leprosy, stroke, heart attack and especially diabetes mellitus.

Ida Ayu Krishanti, an internist from Fatmawati Hospital, said many people with diabetes mellitus had to undergo amputations after suffering serious tissue damage in their organs from the disease.

“Diabetes mellitus may cause tissue damage, leading to serious long-term complications in many human organs, including feet,” she said.

Many people with severe diabetes mellitus suffer from neuropathy, damage to their peripheral nerve system.

“They will lose their body’s sensitivity,” Ida said.

Citing an example, she said a diabetic person’s feet could not feel the heat of the sun or pain when they walked barefoot on a street covered with rocks.

“They won’t know that they have cuts or scrapes, making them more susceptible to infections. When bacteria gets into a wound, it can get infected. People with serious infections in their legs should undergo an amputation,” she said.

Neuropathy is a common complication of diabetes, affecting between 30 to 70 percent of patients.

Ida said a comprehensive treatment of diabetic peoples’ feet could prevent amputations.

“We should measure risks on diabetic people’s feet,” she said.

Wearing proper footwear is the most appropriate way to protect diabetic people from wounds.

“People who have long suffered from diabetes will lose their sensitivity; therefore, we should be able to protect their feet from scrapes and cuts,” Ida said.

However, few domestic manufacturers can produce quality footwear for diabetic feet at affordable prices. A pair of shoes for diabetic feet cost more than Rp 500,000 (US$56.5) on average.

“It is too expensive, especially for those who come from low-income families,” Ida said.

Producing adequate prosthetics and orthotics equipment, including footwear for diabetic feet, is urgent, as Indonesia faces a vastly increased number of people with diabetes mellitus.

The number of people with diabetes has rapidly increased throughout the world. In 2000, about 171 million people suffered from diabetes.

In 2030, people with diabetes are projected to reach 366 million. More than 82 million people aged over 64 years old in developing countries will suffer from diabetes in 2030, while 48 million diabetic people will come from developed countries.

Diabetes mellitus is a disease on the rise in Indonesia. Some provinces have high a prevalence of diabetes, such as West Kalimantan, 11.1 percent, and North Maluku, 11.1 percent. Meanwhile, Papua and East Nusa Tenggara (NTT) are two provinces with the smallest diabetes prevalence in Indonesia, reaching only 1.7 percent and 1.8 percent respectively.

For someone who has had an arm or a leg amputated, life may never return to normal.

“They can have a quality independent life with adequate prosthetics and orthotics support,” said Ida.

Endang said the government was committed to improving prosthetics and orthotics services nation-wide.

“It will help disabled people be more independent so they can have a better quality life,” she said.

Sunday, February 27, 2011

Arts project in Michigan helps dispel stigma of mental illness

From The Muskegon Chronicle:

MUSKEGON COUNTY, Mich. — For Penny Saylor (pictured), art has never been one-dimensional.

It’s always been more than pen and ink, pastels or oils, a picture frame hung on the wall.

Art has given the 44-year-old Saylor — diagnosed at an early age with clinical depression — a voice when she couldn’t say what was in her heart, when she couldn’t summon the words on the tip of her tongue.

“What I couldn’t express verbally,” she says, “I expressed on paper.”

For years, Saylor painted and drew on her own — one woman, alone, creating a visual journal, a history of where she’d been, a destination in pen and ink of where she wanted to end up.

“There were some dark times, some tough periods,” the Muskegon woman says, “but when I was drawing or painting, I was at peace ... the pain was gone.”

In other words, art was therapy on canvas, even if no one saw it but Saylor, who tucked her art away in a corner at home.

“It’s intense,” Saylor says. “Art is very personal.”

Today Saylor’s work, some of which is on display through mid-March in the Feature Gallery at Community Mental Health of Muskegon County, 376 E. Apple, is shot through with yet another dimension.

As part of the Great Lakes Creative Arts Project, an initiative started by Community Mental Health of Muskegon County in 2008, Saylor’s art is helping to dispel the stigma of mental illness — both for the artist and the community-at-large.

“You know, a lot of people with a mental illness don’t think they have anything to give,” Saylor says.

Conversely, there are those in the community who think the same thing — that people with mental illnesses or disabilities have nothing to offer, says Christine K. Wyns, a Community Mental Health training and community resource specialist in Muskegon County.

“And a lot of people with a mental illness are stigmatized,” Saylor says. “We’re treated as if we are ‘less than’ just because of our illness.”

As the Great Lakes Creative Arts Project mission statement reads in part: “Artistic expression is the medium, but community integration and reduction of stigma toward individuals with disabilities are the goals.”

To that end, Community Mental Health now offers classes in everything from painting to knitting, jewelry making to creative movement for its clients — and also for staff members, the families of staff and clients and members of the community. Classes are taught by volunteer artists or staff members.

“We relate to one another through the art, not as those receiving services and those giving services,” Wyns says.

Wyns, who has been part of the Great Lakes Creative Arts Project since it got off the ground, calls the project more a “philosophy” than program. In communities across the nation, similar projects — going by different names — follow the same values.

“We know that art is a recovery tool,” Wyns says, “but there’s so much more to it than that.”

The classes give participants “a safe venue” to talk about mental health issues as consumers and family members, she says.

Some of the classes are taught at the Recovery Cooperative of Muskegon, a member-owned and operated organization created within the mental health community by those who have significant disabilities. Among other things, the Cooperative, located at 1855 Peck, allows its members to sell their artwork.

“This really turns the stigma that people with disabilities can’t do anything ... it turns it right on its head,” says Darma Canter, who is in customer service at Community Mental Health.

One of the unexpected benefits of the arts project is that there are no dividing lines in the classes. Staff members sit alongside clients, learning a new skill, exploring a forgotten talent, trying out the unimaginable. Staff members and clients work together “from the ground up,” Canter says. “This wasn’t an idea from the outside.”

The classes are funded by individual donations, partnerships with organizations like the Recovery Cooperative, plus a grant from the Holland Arts Council.

Saylor recently took a painting class, unsure at first that she had the skills.

“But it was wonderful,” she says. “It was so nonjudgmental. You get to see what you can do.”

And sometimes, it lets you see how far you’ve come.

Saylor’s early work is full of revealing details: battles with addiction, times of anger, a yearning to break free. One, which she’s titled “Identity Change,” takes on different perspectives depending if it’s looked at upside down or right side up.

But her most recent offering, drawn in a class offered through the Great Lakes Creative Arts Project, is a landscape called “Peaceful Measures.”

“This is who I am now,” Saylor says, and she brings her life up to date in words.

An unemployed drywall finisher, she volunteers regularly at area animal shelters, Habitat for Humanity and at Kainay Community Church where she is a member. She remains in treatment, remains on medication, remains involved in art.

“I’ve raised two kids who’ve turned out wonderful,” Saylor says.

One of them is Kandace Merrill, Saylor’s 22-year-old daughter who started painting when she was no more than three years old. Merrill’s work — including a haunting half-finished self-portrait — are displayed with her mother’s at Community Mental Health.

Merrill, who is a diesel mechanic in the U.S. Army Reserves 377th Transportation Co. based in Lansing, has been an eyewitness to her mother’s journey — the highs and the lows.

“This is such a huge expression of life,” Merrill says. “It brought out things I didn’t know I could do.”

There are more such expressions. As many as 30 other pieces of art on display in the halls at Community Mental Health, some purchased by the agency, others exhibited by a grant from an organization called Very Special Arts.

Some of the artwork will be part of a state show that will go on tour, all created by what Canter calls “the mental health community, past and present.”

“We’re all linked together by the love of art,” she says. “It helps us find things we have in common ... and art brings joy to our lives. It expands who we all are.”

As Wyns says, the Great Lakes Creative Arts Project is “more than just about art class.”

“It’s a different way of providing services,” she says. “It focuses on people’s strengths rather than their needs.”

For Saylor, who has been a Community Mental Health client since she was a teenager, the arts project is an added dimension to her life. Once shy, she was the center of attention at the art show’s open house recently, talking with strangers about her paintings and drawings.

“We all have different fingerprints,” she says, “but here, in these classes, everybody’s in the same boat. We’re all there because we love art.”

Wisconsin teen with Asperger's finds his place in theater

From Laurel Walker in the Milwaukee Journal-Sentinel:

When Judy Smith was looking for someone to play the central role of stage manager in "Our Town," the classic Thornton Wilder play about life in small-town America, she wasn't expecting to cast a boy with Asperger's syndrome.

Yet when 14-year-old Clayton Mortl (pictured) auditioned more than six weeks ago, Smith said she experienced a director's "quintessential moment." He was perfect for the role.

Legendary actors like Paul Newman have brought powerful performances to the play - a staple of Broadway, community theater and classrooms since its 1938 debut, said Smith, the performing arts center manager and theater arts adviser at New Berlin West Middle / High School.

But when the 18-member middle school cast takes the stage Thursday, at 10 a.m. and 7 p.m., Clay's performance may be legendary in its own right.

Though everyone is different, people with Asperger's - an autism spectrum disorder - have impaired ability to socially interact and communicate nonverbally. Their speech may sound different because of inflection or abnormal repetition. Body movements may not seem age appropriate. Interests may be narrowly focused to the extent that common interests aren't shared.

As I listened to Clay rehearse this week, I understood Smith's enthusiasm. Tall and lanky, he sported a fedora and spoke with a deep, Edward R. Murrow-esque voice.

"He owns the ability to describe the simplest of the town's characteristics in a manner which is both rhetoric and symbolic," Smith said. The rhythmic delivery is part of his disorder, she said, but, "you want to listen to him."

As many in the cast still struggled with lines they hadn't yet memorized just a week from opening, Clay did better than most at Thursday's rehearsal. He said memorizing his large part - the largest, by far - was what made him nervous.

"It's a bit of pressure," he told me after one rehearsal. It was an understatement.

But he seems to be glad he's a part of it. Other cast members treat him with respect, Smith said, "and I'm tickled for him."

"It's a good play," Clay said.

When I asked him to describe what it was about, he could have been explaining his own challenges.

"It's about life in America, and it can go wrong sometimes," he said. "But you still have to live with it."

To know what a challenge Clay is undertaking in this demanding role, you have to know where Clay has been.

Beth Mortl, Clay's mother, said he has gone to school full time only for the past year. Years of struggle before then while coming to grips with and controlling his disorder and physical ailments allowed for no more than part-time schooling at best, and several years of home schooling.

She said at age 2 he stopped talking and was insistently, repetitively doing things over and over, like running his hands along the floor molding. When she sought an explanation from doctors, he was labeled with severe autism, she said.

"We were told he'd never talk, he'd be institutionalized, that he was retarded," she said.

Clay and his parents have proved them wrong.

"I was one of those crazy moms that was on the Internet 24/7," she said. "I went to every conference."

She traveled to doctors around the country - and still does - for guidance and resources because she felt she had no help from local doctors.

She and her husband, Jim - they are now divorced - enlisted seven-day-a-week behavioral therapy for their only child. In addition to his brain dysfunction, he was debilitated with what eventually was identified as mitochondrial disease, where the material in cells that produces most of the body's energy fails.

Diet has since controlled that, and he's been thriving, though rest is important to his overall success.

He's intelligent and attends regular classes, for the most part. The school has been wonderful in helping him grow, Beth Mortl said.

Still, situations can be overwhelming. He wears earplugs to school to keep the noise down and eats his lunch in a small room because the school lunchroom is so loud, his mother said. Fatigue is always a danger.

Clay's father, Jim, said he can see his son get tired after long rehearsals that will only get longer, and he worries about that.

"I'm extremely happy, and very proud of him," he said. "I never expected this out of him, but he's pretty strong-minded."

When Clay announced the night before auditions that he intended to try out, Beth Mortl said she was stunned and a little fearful of whether he could handle it and stick with it.

"I want him to be involved," she said, "but then I don't."

Still, as she steps back and lets Clay fully participate, with support from the school and Smith, Beth feels certain that the social skills he's learning in this new experience is benefiting him.

The audience, too, I might add.

She's looking forward to his debut Thursday and marvels.

"We probably didn't leave the house for three years," she said, recalling those tough, tough years. "And now here he's going to be on stage."

"It's insanely crazy," she said. "I'm just so proud."

Houston amputee shows true grit in movie role

From The Houston Chronicle:

Ruth Morris, 29, (pictured) is a social worker and University of Texas School of Public Health student who helped portray one of the key characters in the Oscar-nominated True Grit, Mattie Ross, as an adult amputee in the film's end section. As the character's body double, the Houston-born Morris had more screen time than the actress who spoke the lines. Morris spoke last week with Chronicle medical writer Todd Ackerman about her own congenital limb loss, the film's meaning to amputees and her impressions of the Coen brothers, who wrote and directed the movie.

Q: How did you get involved with the film? Did you have you any previous acting experience?

A: I did a little acting in high school, but very small parts. I was more into dance. I got involved with True Grit after people in the prosthetics field — a pretty small world — forwarded me the e-mails when the film's nationwide call went out for a body double. They knew I matched well — a female, slender and between 5-7 and 5-9, missing a left arm. I thought I'd just send my pictures and see what happens. They had me out to try the costumes, the deciding factor, and they fit perfectly. The filmmakers said, "You're it."

Q: Did the experience give you the acting bug?

A: It was a fun experience. We'll see what the future holds. The casting agent thought I should consider doing some acting and modeling generally in addition to amputee-specific type roles.

Q: Talk about your own early life without a forearm and hand.

A: I made quite an entrance in the world. My parents didn't make it to the hospital in time so I was born in the car, and my mom only discovered the missing limb as she delivered me. I got my first prosthetic arm at 6 months, learning to crawl and walk with it. I was the youngest person, 2½ , to be fitted with what is known as a myoelectric prosthetic arm, whose hands open and close and grasp things. I received a lot of coverage at the time, including a tabloid that called me "the bionic baby."

Q: How common is limb loss?

A: It's much more common in men, the result of work-related trauma, and it usually involves legs. There are about 30 people without a leg for every person without an arm. About 1,500 children are born each year without an arm.

Q: How did your entrance scene in True Grit hit home for you, the one where viewers for the first time see the missing arm, the cost of Mattie's quest to avenge her father's death?

A: That scene was so powerful, so meaningful, I wish it could have had more screen time. There was just something in the air as we filmed. A lot of the crew got tears in their eyes, the moment was so beautiful. I know I felt empowered and dignified and proud to be able to portray a positive image of what it means to be resilient, to overcome so much.

Q: As a social worker, do you plan to use the film as a teaching tool?

A: Absolutely. My passion is helping people adjust to limb loss, overcoming their grief, discovering new strengths in themselves and going on to rebuild and live independent lives. I think the film can help in that process. I know how meaningful it was for me, despite my initial thought that it would just be a fun experience to be part of a movie.

Q: Have any good Hollywood dish for us?

A: The Coen brothers are men of very few words. The first time I met with them, their only words were, "Really good double. She matches pretty good." The costuming woman said to me, "They're really impressed with you. They usually don't say anything at all." I met Jeff Bridges as we were getting our hair done one day. He was reciting poetry.

Q: Any Oscar predictions? Anyone you're rooting hardest for?

A: I want True Grit to win everything it's nominated for, of course, but especially Hailee Steinfeld (who plays the young Mattie Ross) and Mary Zophres, who did the costuming and I worked closely with. I think everyone involved with the film is deserving.

In Kenya, disabled people struggle to survive

From CNN:

GATANGA, Kenya -- "Even if it is difficult, God can do anything," says Eudias Wambui, cradling her 17-year-old son Kennedy."There is nothing difficult in the eyes of God."

But I cannot help thinking that God somehow missed Eudias and Kennedy. Their lives are constant struggle.

On a lush hillside in Gatanga, Kenya, Kennedy thrashes in their gloomy wooden shack. He kicks his legs, throws out his arms, and screeches, his red wheelchair propped up against the wall. He is trapped in his flailing limbs.

Still, Eudias is determined to give him food. She grabs handfuls of bread, and pushes it down his throat, sometimes dipping the bread in juice to get it down more easily. At any moment it seems he might choke.

Kennedy can't speak, or give comprehensible hand signals, walk, or even crawl. But Eudias knows when he needs to eat or drink.

Kennedy was born with jaundice, but the doctors at the hospital missed the telltale signs. A physician noticed the following day, but it was too late. The doctors say the jaundice may have resulted in cerebral palsy.

There is no cure for cerebral palsy; an umbrella term given to a wide range of physical and neurological afflictions, but a team of doctors, therapists, and social workers is recommended.

Perhaps in Europe or the U.S. you could get it, but Eudias didn't get a team and their repeated trips to the hospital ended without any help at all.

"I keep on going, going, I have gone many times. I am tired so I am waiting for the Lord to come," she says. "He is suffering, he is suffering, the time he is here, he is suffering a lot."

When Kennedy was a boy, Eudias' husband left, leaving her to support Kennedy alone.

She has been wary about asking for help. Eudias believes that strangers are more likely to harm Kennedy than help.

"I fear that there is naughty people out there," she says, "or men who can come and rape him, so I fear."

That fear drives Eudias to lock up Kennedy whenever she her home. You can hear his shouts on the path leading to their shack. It is rotting and rain comes straight through the roof, she says.

"This house is already falling apart, and therefore, I'd be very happy if I see Kennedy be treated or taken somewhere, where he's not suffering."

But where could Kennedy go?

There are scores of private hospitals and clinics in nearby Nairobi and qualified doctors and occupational therapists at public hospitals. But it all takes money that Eudias just doesn't have.

To survive she depends on the occasional support of well-wishers and works as a kindergarten teacher at a nearby church. But the money she earns isn't enough to send Kennedy for quality medical care.

Why Thomas is tied to a tree

The Kenyan government says that mental health is a high priority, but that is doesn't have the resources to help everyone.

"It really does trouble us, especially when some of the stories come in the press and the papers and we don't know about them," says Anyang Nyong'o, the Medical Services Minister, "It really is troubling and some of them are really painful because you find kids who have suffered for very long."

When we first meet Kennedy, it is on an intervention with the Kenya Society for the Mentally Handicapped (KSMH), one of the few groups working to help families like theirs.

They arrange for Kennedy and Eudias to travel to their office in Nairobi.

They must come by public transport. Eudias tells me that often they are thrown off the Matatus, Kenya's ubiquitous mini-bus taxis, Kennedy's 'difference' scares people, she says.

But they brave the stigma to travel the arduous journey into town, Kennedy strapped like a baby to Eudias' back.

Kennedy gets a thorough assessment.

"Can Kennedy speak?" asks the therapist.

"No," says Eudias.

"Can you understand him?"

"Yes, I understand him."

Kennedy is carried into another room for an E.E.G. test, that could help to assess his needs.

But the cerebral palsy and the stressful trip call for a sedative to help calm Kennedy's brain waves. They can't do an accurate test without it. But they need a qualified nurse for that, which they don't have. So KSMH refers Kennedy to Mathare hospital on the other side of town.

But Eudias can't afford the $12 an E.E.G. would cost there, so they leave the capital.

The KSMH will be able to give Eudias and Kennedy some modest help of food and a bit of money. But they are overwhelmed with cases like this. They say they can't possible support all the families they hear about.

And the Kenyan government, too, concedes that there are insufficient resources for even the obvious needs. But Medical Services Minister Anyang Nyong'o says the problem may go far beyond the obvious.

"I don't think we have the proper institutional capacity at the moment," says Nyong'o. "We have not been able to diagnose the extent to which this problem exists, in spite of the censuses we take. I think that our data [on the extent of need] is reasonably inaccurate or incomplete."

"[Mental health care] is definitely starved of resources and that is not because we want to intentionally starve mental health, that is because the resource base as we have for running health services is very narrow."

"You don't have enough money?" I ask.

"We don't have enough money," Nyong'o sighs.

On our last day of shooting, the crew visits Eudias and Kennedy as she is making lunch. Usually, Kennedy and Eudias would only eat rice and local spinach, but she has wanted to give her guests a special treat. And she sings hymns as she peels potatoes.

Kennedy lies slumped on his wheelchair in the sun.

Sometimes she can only bring him out once a month. It takes her 20 minutes just to bring him out of his bed by herself, but it is worth it. She says sunlight is one of his few pleasures.

She is happy that we are there, but she knows that they have always struggled alone.

Eudias only hears rumors of help.

"It seems as if we are forgotten, because I hear there is help for these types of children, but I have never seen that help," she says. "There is money which is sent and many things like that. But I just hear about it. I have never seen that help."

If the strongest bond is between mother and child, then the bond between Eudias Wambui and her son Kennedy is stronger still.

Boston Conservatory program provides music lessons to children and young adults with autism.

From The Boston Globe:

The Boston Conservatory is renowned for its intensive training in the performing arts, but on Saturday mornings, this Fenway institution offers a unique program: providing music lessons to children and young adults with autism.

The Conservatory, a private performing arts college, united with the Autism Higher Education Foundation in 2007 to form the Boston Conservatory Program for Students on the Autism Spectrum.

This little-known program pairs each child with a single teacher, who also works with a consulting team that includes a music therapist, a speech pathologist, a special educator and professionals in the music industry who have an Autism Spectrum Disorder (ASD) diagnosis.

The program, which provides music lessons, rather than the more traditional music-based therapy, is the first of its kind, said Rhoda Bernard, director of the program. While most participants live within 45 miles of Boston, some families travel from the far corners of the state to attend.

Bernard said the program can be transformative for students who have trouble interacting with others and expressing themselves.

“We hope for our program to change the lives of our students and their families by making music an important part of their lives,” she said.

Autism is a developmental disorder that includes problems with communicating and interacting with other people.

“Finding pathways of communication that will help you and the student be on the same wavelength of understanding can sometimes be really difficult,” said Jill Hogan, program assistant and a Conservatory graduate. She said music “provides another area of communication that may be more accessible to those children.”

Gianna, 15, is one such student. She and her family relocated to Groton after years of unsuccessful attempts to find programs for Gianna in their former home state.

Lisa Hitsos, Gianna's mother, said the program has had a “profound impact” on her daughter. After one year, Gianna has uncovered her talent for singing, and that self-awareness and confidence has helped her to grow.

“Gianna transformed from a child constantly being left out and bullied, to a talented student that is full of life,” said Hitsos. “She is now excelling in school, is more social, has self esteem and pride.”

Hogan said the program allows students to make “a meaningful connection with another person -- their teacher -- who is willing to put aside their communication differences and to dig deep enough to find their voice.”

Some parents say finding someone to make that connection can be an arduous venture. Alice Taylor of Waltham, whose 24-year-old son, Evan, attends the program, noted that finding music therapists was easy -- but she had “despaired of finding a music teacher who could handle [Evan’s] autistic behaviors,” as the Conservatory has been able to do.

Hogan, a local Fenway resident, agrees.

“I think this program creates opportunities for members of our community who might have difficulty finding them elsewhere,” she said.

The program is also aiming to reach out to the larger community. Every September, training sessions for local teachers are held at the Conservatory, and the program is piloting an “on-the-road” teacher-training arm, traveling to schools throughout the state. Both workshops are designed to inform educators about best approaches to teaching music to students on the autism spectrum.

“Members of the community who are on the autism spectrum need to be recognized as people who are able,” said Hogan. “If such a large portion of the population is unrecognized or not given programs or opportunities to shine, that is a disservice.”

For her part, Hitsos sees great things ahead for Gianna.

“She wants to be an example to the world that a person with autism is capable of great things,” she said. “This is something that no other program has been able to achieve.”

NJ doctor continues challenge put forth by Christopher Reeve to "cure" spinal cord injury

From The New Zealand Herald:

Not many of us get to keep a promise to Superman, but a man visiting Auckland says he is on track.

When the star of Superman, Christopher Reeve, was paralysed from the neck down after falling off a horse in 1995, he challenged Dr Wise Young to find a cure that would make him walk again.

Young is leading clinical trials in China, the US, Norway and India that he believes will make this happen.

The cure will be too late for Reeve, who died in 2004, but Young asserts his research will bring hope to spinal injury sufferers who science previously wrote off as untreatable.

Young is the founding director of the W M Keck Center for Collaborative Neuroscience and a professor at Rutgers, the State University of New Jersey.

"It's achievable not just within our lifetime, but within a few years," said Young. "It's a matter of getting the therapies that are making rats walk into humans."

Young has injected stem cells from umbilical cord blood and lithium into patients' damaged spinal cords. He expects the cells to migrate into the injury site and form a bridge.

Lithium is used to stimulate growth.

Young said patients would not need to be completely healed to regain their function. Restoring 10 per cent of the spinal cord would be enough to transform their lives - and even make them walk again.

"We don't have to regenerate the whole spinal cord - we just have to regenerate enough to reach a functional threshold," he said.

Young's visit coincides with the start of a New Zealand-based clinical trial led by the Spinal Cord Society.

Trial co-ordinator Dr Jim Faed, of Otago University Medical School, is recruiting 12 people with spinal cord injuries to take part in the study.

The patients will have stem cells from their own Nasal tissue implanted into their spinal cords.

It will take 2 years to discover if the treatment works.

Saturday, February 26, 2011

Disabled people in China still exploited as slaves

From The Los Angeles Times:

XIAN, China -- At 30, Liu Xiaoping (pictured) is more boy than man, with soft doe eyes that affix visitors with the unabashed stare of the very young and glisten with reluctant tears when his bandages are changed.

It takes effort not to show the pain of the wounds that read up and down his body as a testament to the 10 months he was held captive at brick factories in the Chinese countryside.

His hands are as red as freshly boiled lobster from handling hot bricks from a kiln without proper protective gloves. On the backs of his legs, third-degree burns trace the rectangular shape of bricks, a factory foreman's punishment for not working fast enough. Around his wrists, ligature marks tell of the chains used to keep him from running away at night.

Liu was found wandering in the small town of Gaoling, north of Xian, on Dec. 22, 10 months after his family reported him missing. He was wearing the same clothing as when he'd disappeared in February, but the trousers were glued to the festering wounds on his legs and the gangrene of his frostbitten feet stank through the gaping holes in his shoes.

Despite his injuries and an intellectual impairment, he was able to tell how he'd been tricked by a woman who bought him a bowl of soup and promised him the equivalent of $10 per day, good wages for manual work in rural China.

Instead, he became a slave.

"They took advantage of my brother because he has a mental disability," said his 26-year-old brother, Liu Xiaowei. "They forced him to work, beat him, tortured him, and then when he was too weak to take it anymore, they threw him out on the street."

In an adrenaline-paced economy with a chronic shortage of manual laborers, ruthless recruiters often prey on China's mentally disabled. The worst offenders work with the brick kilns that are feeding a seemingly insatiable appetite for the new apartment complexes and malls cropping up around the countryside.

"The brick factories can never get as many workers as they need. The work is heavy and a lot of people don't want to do it," said Ren Haibin, the former manager of one of several brick factories where Liu said he had worked. "Possibly the mentally disabled can be intimidated and forced to work.... They are timid and easier to manage."

In the Beijing offices of Enable Disability Studies Institute, a nongovernmental organization, director Zhang Wei reels off a list of more than a dozen cases over the last decade in which people were enslaved in appalling conditions, each more nightmarish than the last.

Young women have been sold by psychiatric hospitals as sexual partners and wives; mentally disabled young men have been imprisoned as forced laborers in coal mines and brick factories. In 2008, a brick factory owner beat a young man to death for an escape attempt. In December, Chinese authorities rescued 11 workers who had been sold by a supposed charitable organization for the disabled to a brick factory more than 1,000 miles away.

Reports on conditions in the factory said the workers hadn't been allowed to bathe in more than a year and were fed the same food as the boss' dog.

"Every year there are cases like this," Zhang said. "The worst are when they are violating the rights of the disabled in the name of charity."

Police often won't exert much effort when a mentally disabled person disappears, he said, and even if they're rescued, their testimony is not taken seriously because of their impairment.

"This is not like when a child goes missing. Police will just assume they've run away," Zhang said. Some families, he says, won't even bother to report. "They might feel that they've been relieved of the burden."

That was not the case with Liu Xiaoping. He comes from a loving family who occupy the ground floor of a shabby apartment in southern Xian, where his father sells remedies to people too poor to afford a doctor. Since Liu escaped from the brick factory, he has shuttled between home and the hospital, while his family tries to raise money for skin grafts.

Liu doesn't speak much. When he does, the words come slowly but clearly, as though they've required some concentration. He left school in the third grade, when it became clear that he'd never be able to read or write beyond an elementary level.

But he was strong and healthy. Neighbors would always call on him to help harvest wheat and potatoes and he would hang out at the market looking for odd jobs unloading trucks or carrying parcels.

"He wanted to stand on his own feet," said younger brother Xiaowei. "He was kindhearted and thinks that everybody else is too."

On Feb. 28, 2010, the night of the Lantern Festival that ends the lunar New Year holiday, he and his family were visiting relatives in Shanyang, a town south of Xian. That night, Liu failed to come home, something that had never happened before. His family reported him missing the next day and printed posters that they distributed around the neighborhood.

Little did they know that he had been transported almost 100 miles away to Gaoling, a rural county where there are dozens of brick factories tucked deep in the countryside. They might never have found him if not for another family who'd also lost a son to the brick factories.


He Wen went missing June 2. The 35-year-old had been psychologically troubled since his late teens, when he'd suffered a breakdown after failing an exam. He was unable to hold a regular job but could unload trucks and was proud that he'd managed to buy his own television set.

The afternoon he disappeared, a nephew overheard him taking a telephone call from a woman who'd offered him a job that would provide more than $10 a day, meals and a free pack of cigarettes. He rode away on a bicycle.

His father, He Zhimin, is a 62-year-old farmer with unruly whiskers and hands that tremble as he fingers photographs of his missing son.

"I was suspicious as soon as I heard about this supposed job offer. I started asking around and people told me stories about the brick factories," He said.

He went to the local police, but they told him to file the report in nearby Gaoling. The police there sent him back.

"They kept kicking me from one place to another," he said.

So he launched his own investigation. Every afternoon, he'd go out in a three-wheel motorized cart, handing out fliers and business cards with images of his son's square-jawed face. Somebody printed out a map from Google and he marked the locations of all the brick factories he heard about: 58 in Gaoling alone.

Four workers at one factory said He Wen had worked there earlier in the summer and they gave his father directions to other factories nearby. An elderly woman had seen the younger He walking toward downtown Gaoling. Construction workers erecting an apartment complex thought he might have worked there.

"People kept saying they'd seen my son, but by the time I'd get there, he'd have disappeared."

In December, somebody telephoned to say a homeless man who looked like his son was sleeping on the street in Gaoling. He rushed over. He could see that the unshaven, dirt-encrusted man looked like his son: the same height, close in age. But he was not.

Disappointed, he returned home. His wife was furious.

"How could you leave that boy out on the street in winter? Maybe it was our son, after all. Even if he's not, he's somebody's son," she badgered her husband.

After a sleepless night, he drove back to Gaoling. The homeless man was still out in the street, but he was too delirious to give his name. He tried to take him to the police and to a hospital, but nobody wanted to take him in. Finally, he called a journalist, who matched the young man's description to that of another young man reported missing.

He was Liu Xiaoping.


As Liu recovered in the burn unit, his brother coaxed the story out of him. Liu told of the beatings and burnings, of the food so meager than he lost 20 pounds, of being chained at night and guarded by vicious dogs, about being shuttled among three brick factories.

He identified a photograph of He Zhimin's missing son as one of 11 disabled workers imprisoned with him. He also picked out from police photographs the woman who tricked him and a man known as Lao Fang, a nickname meaning "Old Fang," the foreman who beat him and the other workers.

He described in detail the location of the three brick factories where he'd worked, one of them where the workers had recognized the photo of He Zhimin's son.

That factory lies at the end of a straight dirt road through fallow corn fields 10 miles from Gaoling. There are a few houses out front, and in back a partially underground room lined with chambers containing brick ovens. Although it was closed for the winter, the manager, Wang Youqiang, was on duty.

"Look around if you like. There's no evidence against me. It's all just rumor," he told a visitor.

Wang acknowledged that it's hard to find workers — "Business is great. We sold 27 million bricks last year and would have sold 30 million, if we had the labor" — but denied using the disabled. "If you say otherwise, show me the proof."

But Ren Haibin, who was manager until June, when he says he retired because of ill health, confirmed most of what Liu Xiaoping claimed. He said the factory contracted with a man named Fang who would supply and supervise mentally disabled workers. Fang's mistress recruited them with the promise of $10 a day in wages.

In fact, the going rate for healthy workers was about $14 a day, whereas the factory paid Fang $4.50 per day for each mentally disabled worker, of which $1.50 was spent on food. The rest went to Fang.

"They made promises they didn't keep," Ren said. "The money went into Fang's pocket. The workers never saw it."

Ren said he never saw Fang beating a worker, but added: "He was not a kind person.... Maybe if they didn't work up to a certain level, there would be no food."

Fang could not be reached for comment. Telephone numbers he had used were disconnected.

In the two months since Liu was found wandering, local authorities have visited many brick factories in the area, requesting lists of workers' names and where they've come from. But no one has been arrested and Liu's family has yet to receive compensation for his medical bills.

"I thought this should be so simple, an open-and-shut case, but it has proved so complicated," said his brother Liu Xiaowei. "I'm very disappointed that our society hasn't done more to protect people like my brother."

He Zhimin, meanwhile, is no closer to finding his son. He fears that whoever is holding him may have spirited him far away to avoid detection. It's not an unreasonable fear; when the disabled workers were rescued in December in Xinjiang, one was found to have been transported 2,000 miles across China.

He Zhimin continues to go out every afternoon, driving through the countryside near the brick factories, thrusting fliers into the hands of passersby.

By now, most people recognize him, so they simply shake their heads: No, they haven't seen his son.

Canadian woman doesn't let cerebral palsy squelch her love of travel

From The Toronto Star:

Life holds many challenges for Nola Millin (pictured).

She has cerebral palsy and gets around in a wheelchair. Her speech is impaired. She requires help with the basics of everyday life — feeding, dressing, bathroom activities. She’s a diabetic who requires regular insulin injections. She uses several devices to communicate with people who cannot understand her speech. These include a word board and a Dynavox 5, nicknamed “V”, which speaks whatever she types into it.

But Millin, 47, loves to travel, so when she learned that a conference she regularly attends was to be held in Barcelona last July, she decided to take the opportunity to see a little bit of Europe via a cruise of the western Mediterranean.

“I wasn’t travelling that far to be cooped up in buildings all day,” Millin says. “I wanted to actually see places, so we decided to take a Mediterranean cruise.”

This wasn’t something Millin could do on her own. Even going shopping or to see a doctor involves planning and assistance. Fortunately her good friend and colleague, speech pathologist Toni Southern, 53, (pictured) was also planning to attend the ISAAC (International Society for Augmentative and Alternative Communication, a UNESCO-sponsored organization) conference and agreed to act as her attendant. Southern’s much older sister was enlisted to ease the burden on the primary attendant.

They chose a Norwegian Cruise Line excursion leaving from Barcelona that dovetailed nicely with the conference dates. The Norwegian Jade made stops in Monte Carlo, Monaco; Livorno, Civitavecchia and Naples in Italy; and Palma, Majorca.

They booked the cruise about five months before the conference, but even so the accessible staterooms were going fast. Their best choice was not the largest, but it had a window.

The cabin was a tight fit for three guests, but it ticked all the boxes — the doorways were wide enough to accommodate Millin’s wheelchair, the beds were low, there was no step up into the bathroom and the bathroom came equipped with a roll-in shower, with a fold-down seat and adjustable height spray and safety bars in appropriate locations. The mirror even tilted.

Most cruise lines promote themselves as being friendly to physically challenged cruisers. They offer a range of accommodation from regular staterooms to the fully accessible and usually have some that fall in between. They advertise they are ready to meet the needs of the visual and hearing impaired and even accept guide dogs. Some allow guests who require oxygen and kidney dialysis. There are limitations on pregnant women and they reasonably insist that those who can’t manage by themselves be accompanied by those who can provide personal care.

Once on board passengers with disabilities can get around very well. Elevators make transitions from floor to floor easy, and most public areas are accessible. The theatre on the Norwegian Jade had a special area for wheelchairs and other cruise lines indicate this is standard.

The staff and crew seemed to go out of their way to be helpful from the moment we entered the boarding area. There was a registration desk dedicated to those with special needs and personal assistants to help us through the process.

“The staff was wonderful with me,” Millin says. “Someone would hold my tray and go around with us as we selected our foods at breakfast and at lunch buffet.”

There was usually someone hovering around to help us out in the dining rooms in the evening, even offering to cut up her food.

NCL promotes what it calls “freestyle dining,” which means guests have a choice of restaurants, some of which require a cover fee. Besides the ship’s grand dining rooms, other restaurant choices include upscale steakhouse, Japanese teppanyaki, Italian and French. Millin’s party usually opted for one of the traditional dining rooms, because they liked the formal presentation, but also enjoyed surf ’n turf in the steakhouse.

A typical day began with breakfast in the buffet, followed by a shore excursion, drinks on the pool deck, dinner, then attending a show and playing the slots in the casino next door to the theatre.

In between there was shopping on board or the Internet cafĂ© — where Millin could catch up on work. She’s an on-line psychology instructor at St. Clair College in Windsor and still had some summer-course papers to mark. (She also works for ISAAC, posting articles on its web-based information exchange, and has a motivational speaking business on the side.)

Millin loved being on board the ship — “There’s so much to do, I don’t really need to get off the ship,” she says.

But of course she did, at every port of call.

Because she needs major help to transfer in and out of her wheelchair and because excursion buses with lifts aren’t readily available, Millin and her friends chose to go their own way when they got off the ship. In Monaco, the city buses were wheelchair accessible and a cheap way to see the area.

In Civitavecchia, the little group hired a cab to take them to Rome, an hour’s drive away. Because of the complications involved in transferring Millin into and out of the vehicle and assembling and disassembling and packing the wheelchair into the car, as well as the limited time available, they decided to simply hit the high spots, instead of taking tours of the attractions. So they stopped and walked around St. Peter’s Square, the Trevi Fountain, the Coliseum and the Roman forum, but simply drove past many of the other sights — including, naturally, the Spanish Steps — and ended up at a viewing area up one of the hills to catch a grand panoramic view of the Imperial City.

The most difficult excursion day began in the port city of Livorno, an access point for both Pisa and Florence. MillinMillin and her friends were advised to choose Pisa because it is much closer and the streets were said to be less steep. The shuttle bus from the ship was accessible, but then the challenges began. They were directed to an intercity bus to Pisa — also accessible, although Southern had to stand the whole hour’s drive along a quite pretty coast to Pisa.

The bus took them to the terminal area, but there was no tourist information obviously available, so they just started walking in the heat — uncomfortable on the cobbled streets and narrow sidewalks with inadequate cutouts. They eventually found their way to Campo dei Miracoli and the famous leaning tower, mostly through good luck.

Again, none of the buildings was accessible, but they enjoyed the sights, the tourist markets, and wonderful pizza on a side street near the square.

Getting back was more difficult. None of the taxis would take the exhausted trio to Livorno, but a pleasant cabbie did drop them off at the train station, where they found that the “convenient” trains could not accommodate someone in a wheelchair without a day’s notice. So it was back to the bus station and another long hot bus ride back to Livorno. At least when they got there, the shuttle service drummed up an accessible bus just for them.

Cruise lines do warn that accessible excursions may be difficult to arrange for the severely disabled, but suggest that it might be possible to organize appropriate transportation given sufficient notice.

Southern admits that they could have been better organized about booking excursions but also was very satisfied with the taxi tours. They turned out to be less expensive than ship-organized excursions, and possibly less tiring, especially considering that the temperature in Italy was hovering around 37C during the visit.

Millin loved the excursions and the opportunity to visit fabled attractions. Hiring cabs for a fixed price gave her and her friends the freedom to go where they wanted when they wanted . . . and to go back to the ship when they were tired.

Per person, the cruise itself cost about $1,150 Canadian, all taxes and insurance included, but not personal expenditures, liquor, etc. Airfare (Delta from Detroit to Barcelona, connecting in Amsterdam) was about $1,440. Cab fares tallied about $400.

Millin feels she got good value for the money.

Now that she’s back at work in Windsor, she’s already hinting that she’s ready for another cruise. She’d certainly recommend it to others in her situation.