Tuesday, March 31, 2009
After Norris Turner's stroke a decade ago, he would tuck his right arm into his pocket to get the nearly useless limb out of the way. Now the 68-year-old grandfather from Columbia can use the arm to play catch with his grandson and hit a golf ball nearly 100 feet.
Turner's progress has made him something of a poster child for a machine called the Tailwind. It's licensed and for sale by researchers from the University of Maryland who invented it and a local entrepreneur who believed it could help patients like Turner (pictured).
"We think there is tremendous potential for this device," said Sandy McCombe Waller, who worked on the Tailwind with her colleague Jill Whitall. Both are professors in the University of Maryland School of Medicine's Department of Physical Therapy and Rehabilitation Science. Turner was a test subject.
"Mr. Turner didn't start high functioning but has been able to return to recreational activities," she said. "He can grab things with his arm, drink from a cup. They sound like little things, but they are huge things."
Strokes affect about 750,000 people a year in the U.S. and are the third-largest killer behind heart disease and cancer, according to the American Stroke Association. They are the top cause of adult disabilities.
Clamped to a table at the university, the Tailwind looks low-tech - not much more than a set of metal arms with handles. A stroke patient sits in front of it, grasps the handles and repeatedly runs them back and forth to a metronome, a steady, audible beat that facilitates movement.
Unlike a bicycle, the limbs move independently, so a weak arm cannot depend on a functioning arm.
According to two studies printed in Stroke and the Journal of the American Medical Association, patients who use the device begin to show progress after about six weeks.
The repetition retrains the part of the brain that controls motor skills but was damaged by a stroke. A stroke on the left side of the brain affects the right arm, and vice versa. Like muscle strengthening, weakened motor pathways eventually become stronger and patients make smoother movements.
The machine tilts up, the arms extend and the metronome pace increases to make it more challenging. At its toughest, it may not be a strenuous workout for a gym-goer, but eight-minute sets were exhausting for Turner.
But it has been worth it, he said one recent day as he demonstrated his routine at the university, moving his arms out and back in tandem, and then one after the other.
"Results come in spurts," said Turner, who participated in a Tailwind study two years ago and has continued working with the machine at the university and at home (researchers gave him a device).
To market the product, the inventors were matched with an entrepreneur who participated in a four-year-old program at the University of Maryland, Baltimore County that has been funded in part by a grant from the National Science Foundation. Called ACTiVATE, it trains women in business and hooks them up with technology invented at Maryland universities. So far, 25 companies have been formed, according to David J. Fink, director of entrepreneurial services for the university's research and development park, bwtech@UMBC.
Since 2005, companies have launched or are forming to sell products including DNA-based therapies for ovarian cancer, pain therapies, test kits for monitoring melanoma and a device to remotely monitor infants' and the elderly's vital signs.
Kris Appel, a former linguist at the National Security Agency, bought the Tailwind license and plans to begin selling the machines in earnest in the next few weeks through her Baltimore-based company, Encore Path Inc.
"I was convinced it was a great product," Appel said. "I knew I could sell it because I understand it. It will help so many people."
Those involved in stroke therapy say there isn't much else available for such patients. There are even fewer options that are portable and can be taken home.
The device's success in studies was notable for showing "neuro-plasticity" - recovery of brain function years after a stroke, said R. Samuel Mayer, who did not take part in the Tailwind research. Mayer is a physician adviser for the Department of Physical Medicine and Rehabilitation at Johns Hopkins Hospital and medical director of the hospital's inpatient rehabilitation.
"Traditionally, people thought that little recovery occurs from stroke after three to six months," he said. "We now know that rehabilitation can help people even years later recover some function."
He said insurance and Medicare do not recognize this, so they will not cover the therapy.
It's not clear how clinics and individuals will respond to the $2,400 price tag on the Tailwind. Formal marketing begins in the next few weeks, and none have sold yet.Mayer said other promising therapies are being studied for low- and higher-functioning patients, some of which the Tailwind researchers are involved in testing.
They include weight-supported treadmill work for legs, robot-assisted movement for arms and the use of tiny electric pulses to a part of the brain controlling motor function. There is also transcranial magnetic stimulation, which is when an electromagnet is placed on the patient's head and short magnetic pulses are used to stimulate the brain.
"The important issue is to keep patients active after stroke," he said.
Norris Turner plans to continue working on his Tailwind five days a week. He also plans to keep tossing a ball to his grandson.
Efforts in advertising to pay attention to the disabled are accelerating even as the business of many marketers is slowing.
The seeming contradiction is not surprising because in harder times many consumers begin thinking about weightier matters than the size of their homes or the features on their phones. For instance, in a survey released last week by Hill & Knowlton, part of WPP, 75 percent of respondents said that companies “need to be even more charitable and responsible to their communities” during the economic downturn.
That shift in attitudes represents an opportunity to connect with the public on less mercenary — and more altruistic — levels.
“We continually try to find ways to be part of the family dynamic, from birth to preteen-age,” said Greg Ahearn, senior vice president for marketing and e-commerce at the Toys “R” Us United States operation in Wayne, N.J., which oversees the Toys “R” Us and Babies “R” Us retail chains. The chains are owned by an investor consortium.
And before too long, “kids who are ‘Toys “R” Us kids,’ ” Mr. Ahearn said, quoting the retailer’s longtime ad jingle, “become parents.”
For the first time, Babies “R” Us has become part of an initiative by Toys “R” Us to raise money for Autism Speaks, an organization that helps autistic children. The initiative, which continues through May 1, carries the theme “Autism: Help Solve the Puzzle.”
The campaign is centered on a collection of photographs titled “Faces of Autism.” The photos are appearing on signs in stores and on a section of the Toys “R” Us Web site (toysrus.com/autismspeaks).
Shoppers who donate $10 to Autism Speaks can receive a reusable tote bag designed by James Hogarth, the autistic son of Mary Hogarth, senior director for creative services at Toys “R” Us. Donations already total more than $1 million, Mr. Ahearn said. “We are actually happy with what we’ve seen” so far in contributions, he added. “Regardless of the economic environment, people are driven to help children.”
Since 2007, when Toys “R” Us first teamed up with Autism Speaks, Mr. Ahearn said, $3.7 million has been donated by shoppers, the company and the company’s charity, the Toys “R” Us Children’s Fund.
For many years, ads and catalogs for Toys “R” Us have included children who are physically disabled. Consumers with physical disabilities, younger and older, have appeared in campaigns for advertisers like Cingular Wireless, Levi Strauss, McDonald’s and Target.
On Sunday, American Airlines and the American Association of People With Disabilities announced plans to honor the best television commercials featuring what are deemed positive portrayals of the disabled. The winning spot will get free air time during the airline’s in-flight entertainment programming.
As the initiative from Toys “R” Us suggests, efforts to acknowledge and help the disabled are becoming more inclusive of those with intellectual disabilities.
That is underscored by a campaign scheduled to start on March 31, sponsored by the Special Olympics. The campaign, which seeks to end derogatory use of forms of the word “retard,” carries the theme “Spread the Word to End the Word.”
The Special Olympics is being assisted in its pro bono campaign by BBDO Worldwide in New York, part of the Omnicom Group, and Perfect Sense Digital in Reston, Va. Their work includes posters and a Web site (r-word.org) where computer users can pledge their support “to eliminate the demeaning use of the r-word.”
The campaign was scheduled well before the Special Olympics made headlines when President Obama brought up the organization in making a wisecrack on “The Tonight Show With Jay Leno” about his poor bowling skills. The Special Olympics and its agency allies are trying to turn his gaffe into a teachable moment.
“Words do matter,” said Kirsten Suto Seckler, director for global marketing and awareness at the Special Olympics in Washington, even when “it’s joking about one’s own ability level in sports.”
“We learned there’s a massive need for education,” she added, “and a profound need to build respect.”
Andrew Robertson, president and chief executive at BBDO Worldwide, has been on the board of the Special Olympics for five years.
Research found the derogatory expression “is most extreme among older teenagers in high school and early college,” Mr. Robertson said, so the campaign was devised to be provocative enough to “jolt them into thinking, or rethinking, how hurtful the use of the word is.”
The posters link the word to familiar slurs about race and sexual orientation. In one poster, the slurs are written out with dashes in place of vowels but “retard” is spelled out.
“Most people who would never knowingly use disparaging terms don’t see a problem with saying ‘retard,’ ” the poster says, adding: “That must change. It’s hateful as any other slur.”
Other posters liken the phrases “That’s so retarded” and “I felt like such a retard” to offensive phrases about blacks, Jews, gays and women.
“There’s a tactical reason for this jarring approach,” said David Lubars, chairman and chief creative officer at the BBDO North America unit of BBDO Worldwide. “If you put that word in the category of what will offend, what was a jokey throwaway becomes ‘That’s not me.’ ”
LONDON -- People with multiple sclerosis may have a lower risk of cancer, possibly because of lifestyle changes they make after they are diagnosed with the neurological condition, researchers said on March 30.
An analysis of the medical records of more than 20,000 people with multiple sclerosis showed that patients had a 10 percent lower risk of cancer over 35 years than people without MS.
"We speculate that the lower risk for cancer among people with MS could be a result of lifestyle changes or treatment following diagnosis," Shahram Bahmanyar of Sweden's Karolinksa Institute, who led the study, said in a statement.
The effect was more pronounced among women, who are more prone to MS, an incurable condition that affects more than 1 million people worldwide.
MS can cause mild symptoms in some people and permanent disability in others. Symptoms may include numbness or weakness in one or more limbs, partial or complete loss of vision, tingling or pain, electric-shock sensation with certain head movements, tremors and an unsteady gait.
Bahmanyar and colleagues, who published their findings in the journal Neurology, compared the records of the men and women with MS with those of more than 200,000 people without the disease over 35 years.
They also analyzed records of parents of people with MS to see if there was a genetic link, but found no overall increased or decreased risk among parents.
The findings suggested MS patients are more likely to be diagnosed with certain cancers such as brain or bladder tumors, which the researchers said may happen because these patients are being examined more often than other people.
"The increase in brain tumor diagnoses may be due to brain inflammation, but this finding may not reflect a real increase in cancer risk, as there is some evidence that more frequent neurological investigations in these patients mean that brain tumors are more likely to be found sooner," Bahmanyar said.
If you have teens or tweens, government-appointed experts have a message: U.S. adolescents should be routinely screened for major depression by their primary care doctors. The benefits of screening kids 12 to 18 years old outweigh any risks if doctors can assure an accurate diagnosis, treatment and follow-up care, says the independent U.S. Preventive Services Task Force.
It's a change from the group's 2002 report concluding there wasn't enough evidence to support or oppose screening for teens. The task force, though, says there's still insufficient proof about the benefits and harms of screening children 7 to 11 years old.
Depression strikes about 1 out of 20 teens, and it's been linked to lower grades, more physical illness and drug use, as well as early pregnancy.
Questionnaires can accurately identify teens prone to depression, plus there's new evidence that therapy and/or some antidepressants can benefit them, the expert panel says in a report in today's Pediatrics. But careful monitoring is vital since there's "convincing evidence" that antidepressants can increase suicidal behavior in teens, the report says.
Accompanying the task force advisory in Pediatrics is a research review saying there have been few studies on the accuracy of depression screening tests, but the tests "have performed fairly well" among adolescents. Treatment can knock down symptoms of depression, say the reviewers from Kaiser Permanente and the Oregon Evidence-Based Practice Center in Portland, Ore.
In a "show me the money" volley back, pediatricians also weigh in on the topic in today's issue of their journal. Insurance plans and managed care companies that stiff or under-pay pediatricians for mental health services throw up barriers to mental health care in doctors' offices, says the American Academy of Pediatrics. Kids' doctors should be compensated for screenings, as well as consults with mental health specialists and parents, AAP recommends.
Monday, March 30, 2009
PORTLAND, Tenn. — Cindy Gaspard knew something was different about her son, Dylan, when he was 6 months old.
As an infant, he would line up toys in a row and throw a fit if the order was disrupted. He didn't like to be held. He couldn't speak until he was 3.
Dylan was diagnosed at age 7 with autism, a brain disorder that affects communication and social interaction. For Gaspard, the finding explained years of communication problems and outbursts, and helped her learn how to deal with
many of his behaviors and to fight for services for her son.
She is fighting for him again.
Dylan, a sixth-grader enrolled in a special-needs program in Sumner County schools, was recently handcuffed, arrested and put in juvenile detention after an outburst in school. He was charged with two counts of assault for biting and scratching teachers.
"I disagree with court or jail as a placement for a mentally challenged child, when what he clearly needs is psychiatric treatment," Gaspard said of her 12-year-old son. "For Dylan, sitting in jail meant nothing to him. Treatment and assistance at a hospital will help him attain the skills he needs."
The case reflects an ongoing debate in Tennessee: How should school officials handle and defuse behavioral outbursts of developmentally disabled students at school?
Federal law prevents school officials from discussing students' cases, said district spokesman Jeremy Johnson.
But he said school district policy is that police will be called for children under certain circumstances, including when the child leaves school grounds, when the child's behavior cannot be controlled by teachers, and when a crime is committed.
"When a child is admitted to the therapeutic intervention program, parents are notified that we could have to call police," Johnson said.
Dylan, who has been in the hospital for a psychological evaluation since the episode on March 9, is not the first child with developmental disabilities to be arrested.
"Statewide, we have had several cases of children with disabilities being arrested and being taken to Juvenile Court for behaviors in school," said Sherry Wilds, staff attorney for the Tennessee Disability Law and Advocacy Center. "It's the answer a lot of systems have."
Gaspard spoke out for her son in 2007 about seclusion boxes — small, dark rooms made of plywood where special-needs children were put to control behavior in Sumner County schools. She found out Dylan was put in one and helped bring their existence to public attention. The district has since removed the boxes.
A state law went into effect in January that is designed to prevent students from being subjected to unreasonable, unsafe or unwarranted discipline by prohibiting methods that include sitting on students as a restraint or putting them in a locked room. The Tennessee Board of Education will hold a public hearing April 30 on the rules for the restraint and isolation statute. April is also Autism Awareness Month.
Gaspard said Dylan had just been enrolled in the program at R.T. Fisher Alternative School in Gallatin a week before his arrest. He was placed there to better serve his educational needs. But new situations and changes to routine can trigger his explosions, and school officials were aware of that because it is in his education plan. Methods that work best for him are taking him out of the situation or turning his attention to another activity, his mother said.
Gaspard said after her son was arrested she learned that Dylan was in the gym running laps, and he had an asthma attack. He was allowed to stop to use his inhaler. When the teacher tried to get him to start running again, Dylan got frustrated and ran out of the school, saying he was going to "get hit by a car."
She said teachers were able to get him back in the building, but when they were restraining him, he acted out further.
Police said Dylan bit one teacher and kicked and scratched two others.
"If the child is so out of control that the teachers can no longer handle him, we are going to have to respond," said Lt. Kate Novitsky, spokeswoman for the Gallatin Police Department. "If the child is biting, scratching and kicking, the child is going to have to be taken into custody."
Gaspard said restraining Dylan can backfire because, like many children with autism, he doesn't want to be touched. He banged his head against the table and had a bruise on his head the size of a golf ball.
Dylan was handcuffed, put in the police car and taken to juvenile detention. Police were not told he had autism.
Johnson, the Sumner County schools spokesman, said the district is not allowed under the Individuals with Disabilities Education Act to release that information to police, "even in an emergency."
Wilds, the Tennessee Disability Law and Advocacy Center attorney, disputes that contention, saying laws don't typically apply in an emergency.
"If you are getting ready to throw a child in the back of a car and take them away, you would want to know please handle this child carefully, they can't communicate that well," she said.
Wilds said public and private lawyers are not always trained to handle these cases to fight for the child in courts. A behavioral analysis should be done on many of these children before police or court become involved.
"That way you can have a behavior intervention program in place when something happens," she said.
Holly Lu Conant Rees, chairman of the Disability Coalition on Education, said she has a lot of questions about the episode, including what plans were in place to help Dylan before the situation escalated. She does not believe arresting him was the answer.
"I believe it's unconscionable to arrest a 12-year-old child for behaviors that were clearly manifestations of the child's disability," said Conant Rees, who advocates for children of disabilities.
As for Gaspard, she is trying to figure out what the next step for Dylan will be and how to help him.
"Dylan is a very loving, funny child, and people are drawn to him and his big smile," Gaspard said. "He is the light of my life, and it's hard when you feel you are always butting heads with someone to get your child help."
The challenge of retrofitting Kauffman Stadium to make it more modern and inviting also included making it conform to a law that didn’t exist when it was first built.
The Kansas City Royals and HOK Sport architects worked closely with a special advisory group to make the new K compliant with the Americans with Disabilities Act. The result for the April 10 home opener will be a far friendlier place for baseball fans who use wheelchairs or who have other special needs:
•There are more than double the number of wheelchair seating spaces than before, even in suites.
•There are more family restrooms.
•Every concession area has counters low enough to accommodate people in wheelchairs.
The $250 million Kauffman overhaul is being paid for with a Jackson County sales tax and a contribution from the Royals. The architectural firm and the team have been working with the advisory committee to make sure the stadium meets or exceeds minimal requirements for disabled people.
“On a lot of things, they have exceeded what is normally required,” said Michele Ohmes, an author and consultant on disability issues and head of the advisory panel.
The team has made modifications since the ADA was enacted in 1990, including adding wheelchair seating spaces during a 1999 face-lift. But the newly configured and expanded stadium had to go much further. Wheelchair seating areas are now available on all levels of the stadium.
That gives disabled patrons a much greater range of choice in location and pricing, including the economy area in left field. Previously, wheelchair seating was primarily available in the lower level. There was some accessibility in the upper deck, but it was very limited, said HOK architect Ed Roether.
Some of the portals between the seating bowl and the concourses have been enlarged to make them easier for wheelchairs to maneuver.
In addition, all the party areas and suites — including that of owner David Glass — are now wheelchair-accessible.
All of that is no small thing.
“Accessible restrooms are easy” to accomplish, Ohmes said. “Text telephones are easy. But wheelchair seating, especially in existing stadiums, is not easy. It’s the most difficult thing you can ask for.”
That’s because creating a platform for wheelchairs takes out regular seats, sometimes including a row in front and behind. Roether said one wheelchair space can consume room for five to 15 fixed seats, depending on the location in the stadium.
The members of the advisory committee include Alphapointe Association for the Blind, United Cerebral Palsy of Greater Kansas City and the Coalition for Independence. The panel includes Gloria Hernandez and her 13-year-old son, Ricky, a huge Royals fan who has cerebral palsy and uses a wheelchair.
“The thing I really like is more seats in places where we can sit better and not just in one little area,” said Ricky, who will be watching the home opener from a new perspective behind the Royals dugout.
The committee also is working with the Chiefs on making Arrowhead Stadium more accessible. Stadium development manager Tom Steadman said that when the renovations there are completed next year, the number of wheelchair spaces will more than double to about 350. And they will be on all levels, not just field level. The stadium is adding 12 elevators, for a total of 14. HOK is the architect for both stadiums’ renovations.
A feature at Kauffman that people with disabilities and their caregivers will particularly appreciate is more family restrooms. They will now be on every level and in several sections on each side of the stadium. That means a father with a disabled daughter or a mother with a disabled son will be closer to a place where they can assist in privacy. That can relieve a lot of stress and make the ballgame more enjoyable, said Gloria Hernandez, who did not even realize there were family restrooms before.
In addition to lower concession counters, Kauffman Stadium now has low tables in the food court and bar areas.
Increased video information throughout the stadium, such as the new LED message board ringing the seating bowl, will make it easier for those with hearing impairments to keep up with what’s going on.
Even the “Little K” ball field for youngsters in the new Outfield Plaza at Kauffman Stadium was built to be accessible for those with
Seemingly trivial things can make a big difference. Visually impaired people can have trouble distinguishing where walls and floors meet if they are the same color, so efforts have been made to avoid that.
The committee also advised on other details, from the design of paper towel dispensers in the restrooms (those requiring two hands can be difficult to use for people with disabilities) to the placement of flush handles in toilet stalls (they need to be on the side with more room).
“We spent whole meetings on bathrooms,” said Jean Bailey Smith, director of family support at United Cerebral Palsy.
“But it’s a big issue.”
SPRINGFIELD, Mass. - The old saying sticks and stones may hurt your bones but words can never hurt you, isn't always true. Advocates for the developmentally disabled say words do matter.
The word retardation is defined as slowness in development or progress and is often used to describe people with mental and physical disabilities. But the word carries a negative stigma that many people find offensive.
But on March 30 lawmakers and advocates will celebrate the victory of putting this word to rest.
The Department of Mental Retardation will be changing its name to the Department of Developmental Services.
The new name will take effect on June 30. Advocates of the mentally disabled hope changing the name will bring a greater awareness to the power of words and how they can affect people.
"Shooting Beauty," a documentary about people with disabilities photographing their experiences, to have its world premiere in April
Aspiring fashion photographer Courtney Bent found a new calling when she met a group of people living with severe cerebral palsy and other disabilities and began taking their portraits. She soon realized that her subjects needed a way to represent their own world, so she devised camera systems that would allow them to take photographs themselves—in one case the slight movement of a tongue sets off the shutter. The project blossomed into an award-winning workshop that gave some of its participants their very first opportunity for self-expression. With the help of filmmaker George Kachadorian, Bent spent almost a decade documenting the group’s efforts as they went from fledgling photographers to the creators of a brilliant collection of photographs that makes palpable what it is like to live with a disability. The combination of the photographs themselves and the footage of their making is potent—you enter a world you didn’t really admit existed and you leave it utterly beguiled.
Gail Yeatman fears that possible future cuts to the South Carolina Mental Health Department budget could result in her grandchildren not being able to receive the treatment they need from a mental health medical center in Pickens County.
Yeatman, 57, of Easley said she is impressed with the services at the center, and she was disappointed to hear about the cuts to the state mental health department budget that began in July 2008. Two mental health care facilities in Upstate South Carolina have taken significant hits as part of those cuts.
“It makes my heart cry,” Yeatman said. “I know how hard it is to get services that are needed with the funding they have now.”
The department’s annual budget has been reduced from $220 million to $182 million since July, and lawmakers are considering more cuts in the future, said Mark Binkley, an attorney for the mental health department. The cuts have created a situation in which employees who leave the department cannot be replaced, and at least 82 positions are vacant now, he said.
The state mental health department will serve 9,100 fewer residents in fiscal year 2009 than the previous year, Binkley said, and the department will serve 15,000 fewer residents with inpatient facilities.
“It is discouraging at times,” he said. “As I often say, a few years ago if somebody called with a problem of access to services, I could make a couple of phone calls and address the problem. Now I just have to apologize.”
Adult admissions into the mental health department’s psychiatric hospitals numbered 1,956 in fiscal year 2008, down from 2,373 the year before, according to department officials. The client satisfaction rate for residents receiving services from the department was 87 percent in fiscal year 2008, according to officials.
The Patrick B. Harris Psychiatric Hospital in Anderson has needed to lower its capacity to 121 patients since July 2008, down from 154, in response to the cuts to the state mental health department budget, said John Fletcher, director of the facility.
The Anderson hospital has suffered a nearly $2.9 million-budget cut since July, which adds up to a 14 percent budget reduction, he said. The $1.7 million in the budget dedicated to medication annually cannot be cut, Fletcher said.
Fletcher also said staff members have not been replaced after they leave, and many positions are vacant. The hospital has been providing services to the Anderson-area community for the past 20 years.
Cost-cutting measures for Patrick B. Harris also include limiting the use of paper clips, lighting and pens and cutting back on travel and cell phone usage, Fletcher said.
AnMed Health Medical Center in Anderson refers patients to Patrick B. Harris after evaluating whether the patients can go home. The reduction in capacity at Patrick B. Harris will result in more patients needing to stay longer in the hospital, which will limit the number of people that can be admitted to the hospital’s emergency room.
“It starts to back up in the emergency room,” Fletcher said.
He also said many employees are worried about whether they will be able to keep their jobs. The majority of the budget is dedicated to the salaries of personnel, Fletcher said.
She may have taken a six-month hiatus from competitive swimming but Singapore's first Paralympics medallist Yip Pin Xiu (pictured) is back with a bang.
The 17-year-old, who suffers from muscular dystrophy, won three golds at the March 28 (Disabled) National Swimming Championships and underlined her class by bettering the world mark for the 50-metre backstroke in the S3 category.
She touched home in 57.46 seconds for her pet event, shaving more than a second off her own record of 58.75sec, set in her last competitive appearance at the Beijing Paralympics last September.
British report says disabled people there must rely on charities because government social services are lacking
Thousands of disabled people across the UK are forced to rely on charities for basic care, equipment and vital information because of gaps in social services, according to new research by Shelter and Capability Scotland.
Their report, Fit for Purpose, to be published this summer, will expose the constant battle disabled people face as they try to adapt their homes or move into more suitable housing. A lack of practical advice, long waiting lists and shortfalls in funding are common because of a huge gap between government policy and practice on the ground, the authors claim.
The findings add to pressure on the Government and health authorities after a scathing report into the care received by six people with learning disabilities who subsequently died. Their cases were described as an "indictment of our society" by the health and social care ombudsmen.
New research highlights problems common across the UK, where charities frequently fill gaps left by a shortage of suitable housing and discrimination in the job market.
Many disabled people are still reliant on social services to decide what they need.
Parents of severely disabled children in some parts of the country rely on charities for basics such as incontinence pads and wheelchairs. A recent survey by the charity Livability found a lack of classroom services prevented one in five young adults from pursuing higher education.
The findings come only days before a report by the Joint Select Committee on Human Rights, which looks at the Government's failure to ratify the UN Convention on the rights of persons with disabilities. The Government says it will ratify the treaty this year but insists it must opt out of several unworkable areas. The Select Committee strongly criticised ministers recently for the delay and for failing properly to consult disabled people about their decision.
Alice Maynard, chair of Scope, said: "The Government's decision to opt out of certain areas means it is essentially ring-fencing parts of life which disabled people can and cannot go into. This reinforces the view that disabled people are not as equal as others and that it's OK for other people to decide where they can and cannot be seen."
Paula Abdul knows all about the bond people share with their dogs – the “American Idol” judge cares for four Chihuahuas of her own – but the connection between guide dog and owner, she says, can be the person’s livelihood. (Abdul is pictured training a guide dog.)
Abdul recently signed up to help Dick Van Patten’s Natural Balance, Petco, and independent pet stores raise awareness and money for guide dog organizations across the country. “I’m thrilled to be a big part of it,” she said in an interview with DogChannel.com.
Her role involves getting the word out to the public about the time and effort that goes into training a potential guide dog puppy. The process starts with a puppy spending 18 to 20 months with a trainer, and then the dog goes to formal guide dog
training school, which consists of actual guide dog work with a harness.
After about six months of school, the dog gets matched with a blind person. For 28 days, more training takes place at the guide dog facility so the person can learn how to handle their dog.
“I have always been amazed at how it transforms people’s lives,” Abdul said, adding that she’s also fascinated by the people who take on the role of foster parent to these future guide dogs.
Paula Abdul with Dick Van PattenThey’re aware of the fact that after becoming invested in raising the puppy, eventually the dog must be turned over to the guide dog academy.
Learning about the amount of time and money it takes to train these dogs, Abdul said, inspired her to join the nonprofit side of raising awareness so that more guide dogs are made available.
Coming up during the month of May – declared as National Guide Dog Month by Natural Balance – Abdul plans to do a variety of promotions related to the guide dog initiative. At the same time, she said she may also be involved in press events for the closing of the latest season of “American Idol” in May.
While not able to confirm any plans about promoting National Guide Dog Month on the show, Abdul said she’d be happy to be able to use her success in the entertainment business to cast the spotlight on the importance of guide dogs.
YAKIMA, Wash. — More than 50 people, many of them developmentally disabled, rallied early Saturday at Millennium Plaza to shut down the Yakima Valley School.
It was a striking display in front of television cameras near Yakima's Capitol Theatre organized by people philosophically opposed to centralized residential care.
As dozens of older men and women with mental and physical disabilities yelled in unison about "freedom" from institutions, some organizers admitted they hesitated to go through with the event in recent days.
"We've heard a lot about whether we're exploiting people ... Our agency has no financial interest in this," said Von Elison, executive director of Central Washington Disabilities Resources in Ellensburg. "It was the people with disabilities that said, 'We want to do this.'"
A passionate debate has ensued since mid-December, when Gov. Chris Gregoire included the school's closure as part of her austere two-year budget. Whether the school will close by 2011 is up to legislators.
Opponents of the school say they don't doubt its employees' qualifications, but that it's an obsolete and expensive institution that hides the disabled from society. They point to research showing the health and behavior of disabled people improves when they live in smaller settings, close to family, friends and recreational opportunities.
Meanwhile, the school's supporters say that while community-based living may work for some, the profoundly disabled cannot survive without the school's on-site services.
"I think we're missing the point here," said Dolores White, a social worker and the school's respite coordinator who attended the rally and stood quietly to one side with some co-workers. "It's unfortunate we can't come together and consider each individual's needs."
During the rally, Elison excited the crowd as she spoke into a megaphone about why "the person with the disability should decide where they want to live."
"How do you want to live?" she asked the group.
Local service providers brought some developmentally disabled people they work with from throughout the Yakima Valley and as far away as Spokane.
"We believe in self-advocacy, so we can teach people with disabilities that they can speak for themselves," said Tammara Allen, an adviser with People First Spokane Valley who brought two women she helps. "They shouldn't be locked away in a closet."
Organizers passed the megaphone to anybody in the crowd who wanted to speak, or sing, about their thoughts. Many people who once lived in the school talked about how awful it was.
One young woman told the crowd about her brother, who lives in the school. She said there isn't a better place for him.
White said the school helps individuals transition into society if that's what they choose.
"Of course they have the option," she said. "But what if they choose the Yakima Valley School?"
Sunday, March 29, 2009
Town supervisor says state never required to show group home building plans, which would have helped firefighters save disabled residents
WELLS, N.Y. - A building inspector was told by the state to "butt out" after making inquiries in the months before the construction of a group home that caught fire and killed four disabled residents, Town Supervisor Brian Towers said.
March 29, Towers is questioning the state's decision to refuse an inspection and believes the tragedy at the Riverview group home will force state officials to involve municipalities in the building process.
The state "designed and installed everything" and wasn't required to get a building permit from the town, Towers said last week after an emotional service honoring the fire victims and rescue workers in this close-knit Adirondack town.
"We had almost zero to do with (the inspections)," he added. "We thought it was unusual, and my building inspector tried to work with the state but was told in a frank and polite way to butt out and it's not your business."
Also, the town and county never received floor plans or blueprints for the facility, which would have been helpful to firefighters and rescuers, Towers said.
The investigation into the cause of the March 21 fire, and whether a sprinkler system malfunctioned, is continuing. Consumer Advisory Board staff members were told that an electrical problem is the suspected cause of the fire. The building was less than a year old. State officials will not name the contractor.
Two overnight workers frantically tried to rescue nine helpless residents from the building. Two residents died inside the facility and two died on the way to the hospital. The survivors have been moved to a nearby facility.
According to documents obtained by the Times Union, the state Office of Mental Retardation and Developmental Disabilities knew it would be "impractial" to evacuate all nine residents of the group home in an emergency, which is why sprinklers were installed.
Nicole Weinstein with the state Office of Mental Retardation and Developmental Disabilities did not return messages left on her cell phone Friday. The workers involved in the rescue have not been permitted to speak to the media.
Gov. David Paterson said March 27 he is more than satisfied with the performance of the state agencies who responded to the fire or are taking part in the investigation.
Wells Building Inspector Gene Harrington said Friday a person she believes was a state project foreman told her the state didn't need a local building permit.
"They told us we had no jurisdiction and were not wanted down there," she added. With that, Harrington never returned to the site. The building opened in June with no floor plans on file with the town or county.
"It was just for us as a reassurance that the building was good to go, and I'm not saying it wasn't, but we want some involvement on the local level to make us comfortable with the building," Towers said Wednesday.
Towers, who also responded to the State Route 30 site in his role as a volunteer firefighter, said the blaze that roared through the home made it impossible for fire crews to save lives, even though they arrived on the scene three minutes after getting the 9-1-1 call.
Towers believes any documents showing the layout of state-owned buildings would be helpful to fire crews where split second decisions in an emergency can be the difference between life and death.
"That would have been handy for fire line officers to know the layout, and I think that will happen," he said. "You would have to know the layout to be more effective."
No blueprints or floor plans for Riverview are on file in Hamilton County. County Clerk Jane Zarecki on Wednesday showed a reporter only a map of the property she pulled from a manila envelope. She checked with the Clerk of the Board of Supervisors and also came up empty.
And Wells Fire Chief Bernie Moldt said the state never gave him any floor plans, nor did he ask for it. He said Friday, however, that he was in the process of obtaining the documents from the director of the two remaining homes on Buttermilk Hill Road and Algonquin Drive.
Asked why he didn't request it before now, Moldt said "the state homes have their own way of doing things and are controlled by their own people."
The early morning fire in this bucolic Adirondack town of 730 residents almost certainly will change the way the state does business in the future, Towers said.
"They will be going back procedurally over how emergency management people deal with and react to these facilities," he added. "This will affect more than just the community of Wells. It will affect every community that has an intermediate care facility from Plattsburgh to Long Island."
While the layout of the group home remained a mystery to Wells officials, the four fire victims were not. They and the workers who accompanied them were a common sight around this tiny town. Gloria Bonilla, Anthony Vitti Jr, Cory Desotelle and Theresa Williams attended local churches and regaled at Old Home Days, an annual celebration held the first weekend in August.
The Rev. Michael Terrell recounted their unique qualities during a memorial at Community Hall on Wednesday, punctuating his remarks by telling the crowd, "these were our brothers who lost their lives." Terrell also said the lives of the four surviving residents, Elaine, Blancha, Andrew and Raffi, have forever been "changed and disrupted."
The deaths of their housemates have shaken the region.
Jacob Brenan, 15, was staying with his friend James Hoffman, who lives adjacent to Riverview. By most accounts, James' father, Kenny, a volunteer firefighter in Wells, was the first on the scene after the call came in at 5:30 a.m. March 21. Hoffman has repeatedly declined comment. His family appeared overcome with grief during the memorial.
Jacob Brenan said he was awakened when Kenny Hoffman dashed downstairs and out the door toward Riverview that fateful morning. The boys rushed upstairs to the attic window. "There was a lot of smoke and the roof was engulfed in flames that were shooting about 15 feet in the air," he said, adding he could see two people trying to guide residents into a dark blue van. "I was scared for them and we were praying," he said.
Wells Councilwoman Roberta Chamberlain said Wednesday the governing body never had any safety issues with the group home and she had not discussed the incident with her colleagues.
Moldt said traumatized rescue personnel had debriefing sessions from a county stress team.
"Everyone is coming together as a group," he said.
Worker with disabilities are the latest victims of the financial crisis.
As companies try to cut costs by moving production jobs offshore or keeping them in-house, businesses that employ disabled workers are losing contracts.
Australian Disability Enterprises has begun a campaign to attract more jobs for its 20,000 employees, who work at 362 outlets.
Some employers of disabled workers have reported a 25 per cent fall in trade, and the loss of contracts could be worth millions of dollars as clients shift work - including packaging, direct mail and assembly - overseas.
The Who Do You Know? campaign was initiated by The Spastic Centre Business Services in NSW, which employs 170 people with cerebral palsy. It says disability organisations are a cost-effective alternative for business.
A non-profit firm that employs 466 intellectually and physically disabled people in South Australia, the Phoenix Society, said it stood to lose half its $1 million contract with General Motors because of a slow-down at the company's Holden plant in Elizabeth.
"They are still very good supporters of ours but, as their production turns down, then it has a direct effect on us," said the chief executive, Ian Terry. He estimated business had fallen 15 per cent.
Ozanam Industries, a subsidiary of the St Vincent de Paul Society, employs more than 100 people with intellectual disabilities. Its business development manager, Rod Silber, said business had fallen 25 per cent in the past year. He urged governments in Australia to follow the lead of the United States, which employs more than 40,000 disabled workers to carry out contracts worth $2.3 billion under the Ability One scheme.
It should be compulsory for government departments to seek a quote from an agency with disabled employees, he said. "How can I expect the Commonwealth Bank to give me work if the damn government doesn't do it?"
Mr Terry from the Phoenix Society said if people with disabilities lost their jobs it would have a "multiplier effect" on parents and other carers.
A spokesman for the federal parliamentary secretary for disabilities, Bill Shorten, did not respond in time for publication.
CORPUS CHRISTI — The fifth of six people charged with organizing fights among mentally and developmentally disabled residents at a state school was en route to Texas Saturday after being arrested earlier this week in Virginia.
Guadalupe Delarosa Jr., 21, was arrested March 24 at Fort Lee Army base in Virginia, where he was on active duty, the Corpus Christi Caller-Times reported. A sergeant at the Riverside Regional Jail in Hopewell, Va. told The Associated Press Saturday that Delarosa was on his way back to Texas.
Delarosa and five others were charged March 12 with injury to a disabled person after police identified them in videos of the fights recorded on a cellular phone.
Investigators say staff at the Corpus Christi State School organized the fights among residents. Police said those charged were the ones who could be identified in fights where there were clear injuries. They believe the fights went on for at least a year.
Delarosa resigned from the school last year before the investigation, a spokeswoman for the Department of Aging and Disability Services said.
The mother of a former resident of the state school sued the Department of Aging and Disability Services on behalf of her son Thursday in state court. The suit alleges that Armando Hernandez Jr., 21, was forced to fight other residents while he was at the school from April 2007 to April 2008.
Gov. Rick Perry responded to news of the fights by ordering a moratorium on new admissions to the Corpus Christi facility and demanding the installation of security cameras.
The Corpus Christi school is one of 13 state schools for the mentally and developmentally disabled in Texas.
A lack of supervision on the overnight shifts is believed to have created the atmosphere for the Corpus Christi fights, which took place in the early morning hours.
A Justice Department report in December found at least 53 patients in Texas’ facilities died in 2007 from preventable conditions that were often the result of lapses in care. It also charged that the facilities violate residents’ rights.
According to state records obtained last year by The Associated Press, 53 employees at the Corpus Christi State School were fired for abuse or neglect between fiscal 2004 and fiscal 2007. Another 24 were suspended.
There were 229 confirmed allegations of abuse or neglect at the Corpus Christi State School between fiscal year 2004 and fiscal 2008, according to the Texas Department of Family and Protective Services. The agency investigated 5,443 allegations of abuse and neglect at the facility during that five-year period.
Saturday, March 28, 2009
Director of freak show documentary says continuing opposition to film illustrates society's lack of acceptance of disabled people
Dame Demure is a dwarf who chews glass. Peg-Leg has a prosthetic limb, and a torso festooned with lesions. Jackie the Half-Woman, born without legs, scampers around on her hands. These are not characters excised from the Watchmen movie, but the disabled performers whose tour of the US in the name of entertainment is chronicled in Richard Butchins's documentary.
"I think 'freak' is a word that needs to be reclaimed, in the same way that 'queer' has been by gay people," Butchins explains. "Making this film put me in touch with my disability in a way I hadn't been before. I felt looked-at, whereas I'd always taken great pains to hide my disability."
Unfortunately, the hysterical reaction to the film has confirmed that able-bodied society, or at least its representatives on festival committees and funding boards, would prefer stories about disabled people to be consoling or uplifting. Bafta made the headlines last year when it cancelled a screening of Freak Show. "It said my film showed an inappropriate representation of disability and raised too many questions," scoffs Butchins. "One funding organisation said it felt the film wasn't 'disability-empowering'." And while Freak Show will play next week in the London International Documentary festival, it is perhaps more typical of the general response that Butchins was recently invited to screen it in a Canadian horror film festival.
The picture is uncomfortable viewing, and not just because of its unsentimental depiction of disability. The freak show is run by two able-bodied people who are different kinds of freaks - control freaks - and whose motives are opaque, to say the least. Then there is the footage of shoppers grimacing openly at the sight of Peg-Leg (real name Ken). Could it be that those who would happily see the movie buried are protecting their own delicate sensibilities, under cover of defending the disabled? In his book Inventing the Victorians, Matthew Sweet points out that Joseph Merrick, the Elephant Man, made a pretty penny from putting himself on display, and himself wrote the very pamphlets that described him as freakish. None of that made it into David Lynch's 1980 movie, and Butchins's film proves that able-bodied society is no closer to accepting that the disabled hold the rights to their own self-image.
When Gary Sinise has his legs digitally removed to play an amputee in Forrest Gump, or Robert De Niro goes into twitching overdrive for Awakenings, we feel safe in the knowledge that the performers concerned don't have to live with their onscreen disability. They'll be back on the tennis court in no time.
The use of disfigured and disabled people to man the gates of hell in Michael Winner's The Sentinel (1977) is now rightly decried, just as the sight of Leslie Ash being terrorised by a group of Down's Syndrome actors in the bizarre Shadey (1986) seems in appalling taste. But just last year, when Special People, a comedy with a predominantly disabled cast, was released, the BBFC felt it necessary to warn viewers that it contained - brace yourselves - "disability themes". Such a squeamish reaction is not so far from the revulsion those earlier movies exploited.
Butchins believes the reason The Last American Freak Show has met such opposition is not because society has moved on from exploitation, but because we are more prone to it than ever.
"Don't think the freak show has gone away," he says. "It hasn't. It's there in those shock-docs on TV. You don't pay a dollar to look at these people in a tent, so it feels OK. But it's worse because they're still being exploited by able-bodied people. You can be sure that the one person who doesn't get paid in Britain's Hairiest Man, or whatever it might be called, is Britain's hairiest man."
Eustacia Cutler (pictured) sat at a piano, practicing Bach. Her daughter, Temple Grandin, was on the floor -- lost in her own world. Lost inside her 2 1/2-year-old mind.
Temple couldn't talk and refused to communicate. She started humming, crumpling a newspaper. Squeezing. Shredding. Tossing. Staring blankly as the pieces floated to the ground. Jagged fragments. Isolated and alone. Mental debris. Destined for the trash can.
Cutler stopped playing, trying to get her daughter to engage, trying to get some love. That was the hardest part of having an autistic child, not feeling a shred of love, not feeling like a mother.
"See the bright colors?" she said to her daughter.
Temple sat there, unable to climb out from behind those numb, baby blue eyes.
Frustrated and afraid, unsure what to do, Cutler started playing again. And Temple started humming.
Back in the late 1940s, when Temple was a child, her doctor called it infant schizophrenia. It was a rare disorder, affecting one in 10,000 children. Many were sent to an institution, locked up, discarded.
Today, the same thing is called autism. It affects 1 in 150 children. It's more common in boys, affecting 1 in 94.
Through love and determination, not to mention the help of some amazing teachers, Cutler pulled her child out from behind those baby blue eyes. "I was going to pull her to me," Cutler said. "I was going to pull her into the world with me."
And Temple grew up to be a remarkable success story -- the poster child for autistic achievement.
"Temple Grandin has been known for years in the autism community," said Dr. Colleen Allen, the director of the Henry Ford Center for Autism and Developmental Disabilities. "She is an example of a person who can go through this life with this kind of disability and really make it."
But it was Temple's mother who was behind the scenes, gently pulling her into this world.
Cutler is 82 and lives on New York's Upper West Side. She travels around the country, giving 12 to 15 speeches every year to families with autistic children. She will come to the Detroit area and be the keynote speaker at an autism workshop next month.
In her speeches -- Cutler calls them lectures -- she tells families how her daughter grew up. Temple didn't speak until she was nearly 5 but she entered a small country school, where she received individual instruction. "Temple was mainstreamed at 5," Cutler says. "But we didn't call it that back then."
Cutler tells the families how Temple graduated from high school and college, earning a bachelor's degree from Franklin Pierce College, a master's degree from Arizona State University and a doctorate in animal science from the University of Illinois.
She tells the families how her daughter is a professor now at Colorado State University. She tells the families how Temple became a media darling, appearing on television programs, including "20/20" and NBC's "Today" show. She has been featured in several publications, including People magazine, the New York Times and Time magazine.
She tells the families how her daughter has found peace. She has found herself, found a place in this world.
"Temple is a smart girl who has overcome a severe disability," Cutler says. "What I think is important for people to understand is we are not going to cure autism. What we can do is help our children be fulfilled."
Most of all, she gives the families hope.
Cutler finishes her story and then she waits. Sometimes, she goes to the ladies room and washes her hands slowly. Deliberately. Stalling. Waiting for the approach.
In the quiet, after the crowds have left, they come up to her -- parents from the present, asking for advice from a mother who has already gone through the hell.
"They would come up to me privately and tell me, 'Your story is my story,' " Cutler said.
As scientists and researchers debate the cause of autism -- Is it genetics? Vaccinations? Pollution? A combination of everything? What? -- there is a profound struggle inside the families with an autistic child.
More often than not, it rips apart marriages. Eighty-six percent of the marriages with an autistic child end in divorce, according to Allen.
"Most of these children are raised by single mothers," Cutler said. "In a sense, I was a single mother."
Like so many others, Cutler's marriage ended in divorce. She waited until after her husband's death to write her best-selling book, "A Thorn in My Pocket" (Future Horizons, $24.95).
"I struggled through a marriage where Temple's father wanted her institutionalized and I wouldn't," Cutler said. "Therefore, he went to work to try to prove I was crazy. In those days, in the '50s, he could have succeeded. There was a tremendous feeling against mothers in those days. What people didn't realize was mothers were breaking down."
So she tries to give the parents some inspiration.
"I try to give them an emotional compass," Cutler said. "With that compass, I try to give a simple guideline for what they can expect out of an autistic child."
Cutler said that autistic children will struggle with concepts and context. They struggle to make social connections. And it is important for parents of an autistic child to explain to others that autistic children do not always make eye contact.
"It is hard for these children to look at somebody in the eye," Cutler said. "They don't understand what we are getting from each other. They are not being shifty-eyed. Once you understand that, you can deal with it."
But most of all, she tries to give the parents a simple message: Never give up hope.
"Hope is different than control. It's not Hallmark cards -- oh, it's all going to be all right. It's really a bet. You check out the odds, and you place your bet. That's how I describe hope. And I bet on Temple's growth."
Militants in northern Pakistan have triggered a medical emergency by refusing to allow health officials to conduct a polio vaccination campaign.
Taliban militants in the former tourist destination of Swat Valley have obstructed officials from vaccinating over 300,000 children.
Militants have seized control of most of Swat and its capital, Mingora, and have extended their rule since striking a peace deal with the government and army earlier this year.
“There is a real emergency there. It is urgent to go in and vaccinate children,” said Dr Nima Abid, the Polio Team leader from the World Health Organisation in Pakistan.
Extremist clerics have used mosque loudspeakers and illegal radio stations to spread the idea that the vaccinations cause infertility and are part of a US-sponsored anti-Muslim plot.
Dr Abid said that militants have not allowed polio vaccinations to take place at a critical time.
“Polio vaccination is effective in first three months of the year when virus transmission is lowest and so there is no interference with the vaccine virus,” said Dr Abid.
Militants had reportedly agreed to allow the vaccination program to take place as part of the peace agreements.
However, the militants had reneged on their word and despite assiduous efforts made by the increasingly irrelevant local administration, no vaccinations have taken place.
“It’s a US tool to cut the population of the Muslims. It is against Islam that you take a medicine before the disease”, said, Muslim Khan, Swat’s Taliban spokesman, speaking by telephone.
Yesterday government officials convened another meeting in Swat an attempt to break the impasse, according to Dr Abdul Jabbar, the WHO’s polio team leader in North West Frontier Province (NWFP).
Swat had recorded 4 cases of polio last year of the total 53 recorded by NWFP and the tribal areas. Pakistan had 118 cases in 2009.
The WHO recorded 39 cases of polio in Pakistan in 2006, up from 28 in 2005. The disease is concentrated in NWFP where 60% of the refusals were attributed to “religious reasons”.
Militants in the tribal areas of Bajaur and Mohmand have also opposed polio vaccinations.
Dr Abdul Ghani was killed by a roadside bomb in Bajaur in 2007 as Islamist militants tried to halt a polio immunisation campaign.
GENESEE COUNTY, Michigan -- Tammy Lara watched, feeling helpless, as her son began to change.
As the medication James, 14, used to control a bipolar disorder stopped working and he started using more illegal drugs, Lara's son became a different person.
"He started being aggressive with me at home, trying to hit me," Lara of Mundy Township said. "There was a lot of violence at home."
James was arrested and charged with domestic violence, but now may have a second chance as the first person in a new court program to help juveniles with mental illnesses.
The program, called Juvenile Mental Health Court, is modeled after a similar court program started here two years ago for adults.
Youths with criminal charges who have mental illnesses can voluntarily be entered into the nine-month program. If they stay on medication and follow court rules set by Chief Probate Judge Jennie Barkey, their criminal charges will be dropped.
"We need to get them on medication so life isn't that bad and give them incentives to stay on it," Barkey said. "In turn, we promise we'll help them get the medications right and help them get a start."
James is the first youth to be put in the program, which has its first session on April 27 with Barkey. She expect three more youths, between the ages of 10 and 17, will join for the first session. The program is being paid for with funds from the court and Community Mental Health, Barkey said.
But with a state budget crisis -- the deficit looks to be running at $1.5 billion -- future funding for these programs is in jeopardy. Gov. Jennifer Granholm's budget for next fiscal year does not include money for adult mental health courts. And funding for expansions into juvenile courts is not on anyone's radar.
"I think the general consensus is that these are good programs, but when you look at the budget ... those other programs come after what is most important (such as education and fixing roads)," said State Rep. Paul Scott, R-Grand Blanc Township.
But local officials said the program is needed to stop a vicious cycle of youths entering the system over and over again, continuing as adults.
The juvenile mental health court differs from the adult version in that parents or guardians also will be required to participate and could face court sanctions if they or the youths don't comply with rules.
"It will be different because the juvenile system is a lot different than the adult system," said Dan Russell, chief executive officer of Community Mental Health. "But everyone agrees it's a great idea and very much needed."
For Tammy Lara, the new program is one step in changing a broken system where kids with mental illness are labeled as "bad kids."
"I used to think his only choice was death or being locked up for the rest of his life," Lara said of her son. "Now he may have a chance. If this helps my child, it can save others."
ENCINITAS, Calif. — The Encinitas Learning Center for children grappling with attention deficit disorder, auditory processing, autism, dyslexia and other learning challenges is launching a state-certified school.
The school, privately run but supported by public tax dollars, will serve students in second through eighth grades with mild-to-moderate special-education needs.
“Our goal is to fix the students' perceptual deficits and then bring them up to grade level or above, so they can return to mainstream educational programs as independent learners,” said Lynda Detweiler, founder and co-director of the Encinitas Learning Center.
The school will provide small-group classes based on California State education standards and use a variety of special-education learning programs.
The school is free to qualifying students.
“It may take one or two years of intense educational support to close the gaps . . . (but) we expect the results for our students to be life-changing,” Detweiler said.
The Encinitas Learning Center has served about 3,000 special-education students since it opened as a non-public agency in 1997. Public school districts sometimes contract with state-certified non-public agencies and schools that provide special-education services when an appropriate public education program isn't available.
In addition to small-group instruction, the center also offers academic tutoring and a variety of specialized learning programs. Among them is the Lindamood-Bell reading program, which prompts students to focus on imagery associated with words and sentences. Another program the learning center uses is Cogmed Working Memory Training, a software-based program designed to help people improve their concentration.
An open house is scheduled for April 26.
Enrollment for the spring trimester began March 2, and enrollment for a six-week summer program is scheduled to begin June 15.
The school will offer speech and occupational therapy, interactive computer activities daily and other special-education services that are outlined in a students' individualized plan.
“Sessions are geared to students who need to quickly build the skills critical to language and reading – two of the most foundational skills for academic success,” said Steve Baime, chief administrator for the learning center.
GALVESTON, Texas -- An important change to the seawall in Galveston has nothing to do with the road to recovery and everything to do with providing access for everyone. For the first time since it was built, there is a wheelchair ramp at the seawall.
Hurricane Ike prompted a lot of changes and repair on Galveston Island, but the most recent improvement to the seawall has nothing to do with the damage that storm left behind. Rather, it's a move to make access to the beach better than it's been in more than 100 years.
"Somedays you can look out there and it's so pretty. Galveston is a fabulous place," said beachgoer Brent Novelli.
Novelli was born and raised on the island. He is passionate about the beach.
"I love fishing. I love beachcombing and I love people watching," said Novelli.
It's a joy he now shares with his daughter Sydney.
"You see the big waves out there? Wanna learn how to surf?" said Novelli to his daughter. However, he couldn't play with Sydney the way most dads would could because as much as Galveston's seawall is protection from the gulf, it is a barrier for the wheelchair-bound Novelli.
"Nobody really thought about it, you know, having access to the beach," said Novelli.
"Before I was having to sit up on the seawall while they were down here walking on the beach collecting sea shells," said Novelli.
On March 27, all that changed.
"The beach is open," cheered Novelli.
For the first time in the wall's 107-year history, it has a ramp to the beach.
"It's about time. It just broadens up the world and it also says something about Galveston; the hospitality that Galveston provides for people all over Texas, from all over the U.S., and from all over the world," said Texas Land Commissioner Jerry Patterson.
With a federal grant, the State Land Office, the city, the county, and the Parks Board used $431,000 to make Novelli's life a little fuller. It's the first of what could be many ramps along the seawall.
"Oh yeah. It's definitely a step closer," said Novelli.
It may not look like much to most who spend their days with sand between their toes, but for a man who treads a different path, it is a big deal.
"I see all of the big rocks and look at the sand," said Novelli to his daughter.
He can now be a dad on the beach, just like all the others.
The ramp sits right across the Galveston Island Convention Center in the 5600 block of Seawall Blvd. Right now it is the only one on the ten-mile stretch of island beach protected by the wall.
A low-cost airline has told a disabled man he must pay excess baggage fees for his spare prosthetic legs.
British double amputee Mick Skee alleges Jet2 told him to pay an extra $10 ($23) on the flight to and from the Spanish island of Majorca.
"It is ridiculous. In my opinion, the prosthetic legs are a disability aid. A wheelchair is classed as that and can be transported free of charge," Mr Skee told Britain's Daily Mail.
The 47-year-old amputee, who lost both his legs after contracting meningococcal septicaemia, says he contacted the budget airline to request transportation of the prosthetic limbs, but the airline refused to assist.
The spare prosthetic legs have been specially made and fitted with training shoes for Mr Skee to take on the holiday next May.
The father-of-four from Gateshead, England, said he intends to write to Jet2 and his local MP to complain.
"This is something that could affect other people in the same situation and it is an issue that needs to be dealt with," said Mr Skee.
A spokesman for Jet2 advised Mr Skee to make a formal complaint to its customer services department and said it would endeavour to provide a response within 21 days.
Friday, March 27, 2009
I did not go to "Acting Out: Social Experiments in Video" at the Institute of Contemporary Art with high hopes. Years of experience have led me to approach
earnestly titled group shows of video art with something less than hopping enthusiasm. Moreover, I do not, as a rule, like watching human beings used in experiments, social or otherwise; it feels like an imposition - on my time, and theirs.
But I suggest you see "Acting Out." It's pretty lean, pretty interesting, prettily
installed, and worth the price of admission and the tax on your time for one work alone: a gorgeous, somber, and utterly engrossing 27-minute film by the New York-based Venezuelan Javier Téllez.
The film is called "Letter on the Blind, for the Use of Those Who See." The ponderous title matches the ponderousness of its star: a very docile elephant with exquisitely freckled ears. It stands, unmoving, in the center of a filled-in city swimming pool. One at a time, a series of blind people approach the beast, touch it for a minute or two, and move back to the bench they started out from. That person then reflects on the experience (this is heard in voice-over as the camera homes in on a patch of the elephant's darkly undulant skin) before the next person approaches at the signal of a whistle.
Téllez, who often works with mentally or physically challenged people, is improvising on a theme set out in an Indian parable known as "The Six Blind Men and the Elephant." Six wise but blind men approach an elephant and, each feeling a different part of its anatomy, come to different conclusions about what it is. The moral, presumably, is that one shouldn't leap to wrong-headed conclusions on the basis of scant evidence. But of course, like all the best parables, this one's flexible, and I don't think Téllez has anything particularly didactic in mind. Indeed, on the face of it, his film has all the hallmarks of an undergraduate psychology experiment: How do people react in unknown situations? With fear, or with openness and curiosity?
But what actually takes place in this series of extraordinary encounters between man and beast is so specific, so inimitable, so unpredictable, that it is impossible not to be moved.
One big man approaches confidently. With gliding, cherishing hands, he feels his way over the elephant's skin, finding its ears and face without strain, and whispering tender, awestruck things like "You're beautiful," "It's like the ocean in here," and "I hear you." Afterward, as he reflects in voice-over, he says, "You feel the power and the strength, but you also feel the tenderness." If asked to reflect on its own encounter with this man, you suspect the elephant might say something similar.
The next man, looking somewhat beaten down, approaches tentatively. His hands flap nervously, and he taps tremulously at the elephant, as if half-expecting to touch shards of glass. You feel for him. He is, like the previous man, overwhelmed - but not in a positive way.
After comparing the elephant's skin rather beautifully to "curtains in a mansion," he confesses later that he hadn't been able to tell how wide or tall it was, or in which direction it pointed. Indeed, his main fear was that it would "do some wild things, walk over me or something crazy like that." Who can blame him?
Atlanta Falcons cornerback David Irons Jr., (pictured) who professed to be 18 several times although he actually is 26, easily mingled with the high school students at Student Transition Day on March 25 at Southwestern Illinois College in Belleville.
Dressed in blue jeans and a baseball cap, he did seem young, but he is a real NFL football player who has been through some tough stuff to get to where he is.
Irons was part of a Disabilities Awareness Program. He is a national spokesman for the Learning Disabilities Association of America and has a company, Iron 2 Impact Inc., along with his father, who obviously was and is a big influence in his life.
As a week-old infant, Irons was rushed to the hospital after an allergic reaction to the soy in his baby formula. He was near death for a while, and doctors said the result might be brain damage. But he seemed normal as he grew up.
Irons turned out to be a slow learner who had to have things repeated and repeated and repeated. In high school football, he was a star. But in class, he was struggling.
His journey to get help started one day in high school when he had to read a page of a book aloud in class. He said he avoided it every way he could and had the kids laughing at his descriptions of avoiding being called on. But, eventually, he was caught and had to read. He said he was stuttering and having a lot of trouble.
"The teacher thought I was joking around, and she said 'Read it again. Read it again or go to the principal.' I'm like, send me to the principal," Irons said.
It was the beginning of addressing his learning disability.
"I never wanted to admit I had a problem," he said.
After high school in Georgia, Irons played football at Butler Community College in Kansas and then Auburn University. At one point, struggling with classes, football and injuries, he wanted to quit. His dad talked to him and convinced him to keep trying.
"Like Dad said, we were sitting in the car and he was talking to me. He did threaten me, too. He didn't tell you that," David Jr. said.
"He wasn't supposed to tell that," David Sr. said, later.
When Irons struggled in college, he got a tutor, it seemed like 24 hours a day, he said. But he worked hard and graduated with a degree in sociology.
"I'm so proud," he said.
In 2007, he was drafted by the Atlanta Falcons. When asked about how much he makes, he said $2.5 million, truly impressing the crowd of youngsters.
"But that money goes all to my dad," he said.
He encouraged the kids to keep trying and not to get discouraged.
"A lot of people don't like to talk about it (disabilities)," he said. "I'm not scared. I'm here, talking to you guys. You can make it. Don't get down on yourselves."
to experience film and video related to the field of developmental disabilities. People with developmental disabilities as subjects and performers remain marginalized in the media. The Sprout Film Festival aims to raise their profile by showcasing works of all genres featuring this population. By presenting films of artistry and intellect, the festival hopes to reinforce accurate portrayals of people with developmental disabilities and expose the general public to important issues facing this population. The goal is an enjoyable and enlightening experience that will help breakdown stereotypes, promoting a greater acceptance of differences and awareness of similarities.
“I was falling behind, I had no confidence, and I hated going to school. Growing up was always a struggle, and I was getting swept under the rug.”
These are the words of film director Vincenzo Giammanco, but they could be said by just about anyone who had to wade through grade school with dyslexia, a learning disability that blocks otherwise smart students from being able to process written language. Affecting as many as one in seven people, dyslexia can ruin lives if left untreated, stopping both mental and social development of children and leaving kids with no other option than to skip school, become bullies, or otherwise drop out of scholastic society.
Giammanco, whose parents moved him to special school early on, was able to rise above his challenges and succeed in school, taking him all the way to Brooks Institute, where he used his visual way of thinking to excel in filmmaking. As part of those studies, Giammanco spent two years working on a script and then took out a $30,000 loan to create bAd, a professionally produced short film that vividly shows life from the perspective of a dyslexic fifth-grader.
The viewer is shown a class reading aloud from their books, while the protagonist John, who can only see jumbled text, sweats and stresses as his turn approaches, only to later have teachers ridicule him for not trying hard enough and fellow students call him stupid. For dyslexics, especially those who grew up in the years before the disability was well recognized, the film proves to be an accurate depiction of their early years.
“Once I became an adult, I realized that dyslexia was a gift rather than a disability,” said Giammanco, a Monterey native and Ventura resident, explaining that a high percentage of the world’s millionaires are dyslexic. “I really wanted to show that and let people know they’re not alone.”
Though he never expected his school project to draw big crowds, bAd has attracted sell-out audiences everywhere it’s shown. (More than 400 people flocked to its Ventura premiere, and a later screening in Monterey brought in more than 700 people, with others being turned away at the door.) This Saturday, bAd comes to Santa Barbara’s Marjorie Luke Theatre for a free screening, followed by a panel discussion about dyslexia.
Though the full-time filmmaker and former country radio show producer is not currently considering a feature-length version of bAd, he won’t be surprised if its popularity pushes him to revisit the topic down the road. “I have a feeling that this film is going to be knocking on my door again sometime in the future,” said Giammanco.
For now, though, Giammanco is happy that his movie’s message seems to be getting out there.
“This film was never supposed to get this much attention. My whole goal at the beginning was to change the view of one parent or one kid or one teacher,” he explained. “If I did that, then the film would be successful.” The addition of the panel is only icing on the cake, as he explained. “Helping people overcome and cope with dyslexia—that’s what the whole event is for.”