Chesapeake Bay sailing school teaches success to learning disabled students

From The Baltimore Sun. In the picture, Ben Catterton (left) and Riggs Brusnighan will be instructing younger campers this summer at the Brendan Sail Training Program.

The sun was bright and hot, but the waters of the Chesapeake Bay were icy as the Brendan Sail instructors launched a small sailboat at Annapolis Sailing School in Edgewater, Md.

"Yeee-oww," Riggs Brusnighan, 15, howled as he waded into the shockingly cold water to scrape off the winter's rust. Classes start soon in America's sailing capital, and there is no time to waste.

They say every child who grows up in Annapolis should learn to sail, and there are probably enough sailing schools here to accommodate them all. But the Brendan Sail Training Program is different.

It is a sailing school for teens with learning disabilities ranging from dyslexia to autism. And it isn't just the students who battle these challenges. It's the instructors, too.

The school doesn't teach sailing as much as it teaches success. At graduation, when the students take their parents out for a celebratory sail, those same parents, who hesitantly turned over their children to the Brendan instructors just two weeks earlier, often return with tear-streaked faces.

"We often hear the same thing," said Jim Muldoon, who founded the school 26 years ago. " 'My son was showing off! He's never had anything to show off before!' "

Muldoon, a Washington businessman and avid sailor, named Brendan Sail for the monk the Irish believe discovered America long before Columbus.

His own son was significantly learning-disabled, but Muldoon realized that sailing might work for the boy who could not tell right from left, but who instinctively understood everything else about the strange plane geometry of sailing.

"One day, we were on our way to the starting line for a race," recalls Muldoon, "and all these big guys crewing for me were taking instructions from Jimmy, who was maybe 9. I realized he didn't have the kind of confidence on land that he had at sea."

"Sailing is something you do not learn by reading a book but by feel, sight and touch. I don't know why it works for these kids but, boy, does it work."

Five hundred students, most of them boys, have passed through the program, which has a 6-to-1 student-teacher ratio. Almost all of the teaching is done on the water, not in the classroom, which so many of these kids, ages 11 to 18, have come to associate with failure and frustration.

This year, five of the instructors are former students, ages 15 to 18. One, Bradley Macpherson, has gone on to complete U.S. Sailing's instructor certification. (Because of his learning issues, Macpherson completed the exams orally.) Two more, Ben Catterton and Henry Cloutier, are working to complete their certification this summer.

Macpherson likes the challenge of figuring out the right path into the brains of the highly individualized students he teaches. "I had one student with Asperger's syndrome," he recalled. "He was awesome. I didn't think he was even listening to me, but in one day, he had memorized everything."

The program is overseen by volunteers Pat Ewing, an insurance broker who is himself dyslexic, and Guy Weigand, Ewing's friend and sailing buddy of many years.

The camp, which begins June 29, costs $250 for one 8-day session, $450 for both 8-day sessions.

"Ben was furious with me when I signed him up," said Chris Catterton, Ben Catterton's mother. "He thought it was another one of my dumb ideas. That was five years ago. He has missed only one day since."

Ben, Bradley, Henry and Riggs were part of the crew that sailed Muldoon's yacht to St. Maarten over Thanksgiving weekend for wintering. They left Annapolis in gale-force winds and many of them were seasick for days. But they talk about it now with enormous pride.

"I wasn't sure Brad would really leave for college when it came down to it," said Linda Macpherson, whose son will study at Salisbury University in the fall and probably join the sailing team.

"But after that sail, he knew he could do it. I knew he could do it."

Canadian disability groups fight for accessible technology

From The Canadian Press:

EDMONTON, Canada — Thirty years ago, groups for the disabled in Canada fought for accessible sidewalks, washrooms and transportation.

Today their battleground is equal access to technologies such as cellphones, hand-held devices, entertainment systems and even home appliances.

"The new technology can actually be either the great liberator for people with disabilities ... or it can begin to create a whole new set of barriers that we haven't had to deal with before," said Laurie Beachell, national co-ordinator for the Council of Canadians with Disabilities.

John Rae, 60, of Toronto suffers from retinitis pigmentosa, a progressive eye disease that caused him to lose much of his sight when he was in his 20s.

Since Air Canada modernized its in-flight entertainment system, which now uses touch screens, the retired Ontario government employee finds himself with nothing to do but sleep on long flights.

"You used to be able to navigate the entertainment system in an airplane by buttons on the side of your seat ... but with these flat screen entertainment systems, I no longer can. My independence has been taken away from me," said Rae, who volunteers with the Alliance for Equality of Blind Canadians.

On Rae's computer, the screen technology that reads documents aloud doesn't recognize some formats that are commonly used when transmitting text, so he simply can't access the information.

"I consider it discrimination," Rae said.

"Manufacturers of technology, manufacturers of household appliances continue to develop and manufacture equipment and technology that we can't use."

Groups such as the non-profit Neil Squire Society, hope to change all that. The society, which focuses on using technology to "empower" the disabled, is pressing Canadian regulators to force companies to make products more user-friendly for the disabled.

Last fall, hearings were held with the Canadian Radio-television and Telecommunications Commission where groups representing the disabled argued for better access to things such as cellphones.

"Basically (we) were trying to make the case that cellphone companies don't do a really good job of ensuring that there are products for people with disabilities that meet their needs," said Harry Lew, the society's manager of research and development.

People with physical mobility problems, who may have spasms or can't use their hands, can't use many services on hand-held devices, he said.

"So you can't access email if you're a person with a mobility impairment right now. You can't surf the web on a handset because there just aren't any solutions.

"That's the classic case where people with disabilities are lagging behind."

Jim Johannsson, a spokesman for Telus, said the company is making efforts to help people with disabilities.

He said Telus, which participated in the CRTC hearings last November, has enhanced its directory assistance capabilities by using more voice recognition technology. There is also a service that will convert emails from text into audio for those with impaired vision.

Telus has an application before the CRTC for approval of a video relay service for its deaf customers, so that one or both people on either end of the connection can use sign language.

But these systems require national standards and CRTC approval, Johannsson said, to ensure the same level of service across the country.

"We know that with technology you can allow people with certain disabilities to be incredibly productive and wherever possible we're making those investments," he said.

The challenge is determining whether governments, companies or individuals should have to pay for such services, Johannsson said.

Ontario is believed to be the only province to have passed legislation that aims to improve access to goods and services for the disabled, including information and technology.

Each year in Canada it is estimated that people with disabilities spend about $25 billion on goods and services.

Bill Adair, executive director of the Ontario branch of the Canadian Paraplegic Association, said while technological innovations are important, removing prejudice against the disabled is still at the heart of the issue.

"If you fix (information technology) and you still leave the whole concept of prejudicial attitudes towards people with disabilities intact, you really haven't done a whole lot."

Amy Roloff says people with disabilities must communicate their abilities to others

From OnMilwaukee.com:

Just over four feet tall, Amy Roloff, the star of the TLC reality television series "Little People, Big World," is a little person with a big message. Consequently, Roloff will be the keynote speaker at Independence First's 8th annual power lunch, scheduled for 11 a.m. June 16 at the Midwest Airlines Center, 400 W. Wisconsin Ave. Tickets are $50.

Independence First, 540 S. 1st St., works to empower people with disabilities and promotes community integration through education, advocacy, independent living services and coalition building. The organization started in 1979.

Roloff, who was born with a form of dwarfism called acondroplasia, is married to Matt, who is also a dwarf. The couple have four children, one of whom, Zach, is also a little person. Their other three children are average size. The family lives in a suburb of Portland, Ore. on a 33-acre pumpkin farm.

Juggling a family, farm and a popular televisions series is definitely challenging, but Roloff's can-do attitude and refusal to make excuses for herself or her family make life a little bit easier.

OnMilwaukee.com recently chatted with Roloff about her family, the show, how she overcame obstacles and the importance of communicating needs to achieve goals.

OnMilwaukee.com: What will be the core of your message at the Independence First event?

Amy Roloff: Of course my main message is to support Independence First, and all of the great things they are doing for people with disabilities. After that, I believe a person with disabilities must come to terms with their disability so they can help others to see them as a person who can accomplish the task at hand.

A lot of times, the door of opportunity shuts because of other peoples' perceptions of a disabled person's potential. So we need to be able to communicate our abilities to others.

OMC: What have been your biggest challenges as a little person?

AR: Attitude and self-perception. For a long time, I accepted that I was a person with physical challenges, but I just wanted to blend in with average-sized people. I wanted people to forget that I was a little person.

By the time I was in college, I was so focused on wanting people to get past my physical stuff that I couldn't let them in. I realized I was making a bigger issue out of my physical appearance and it was affecting my relationships with the girls in my dorm.

It was a gradual process, but I started to look more at myself and finally stop worrying about what others were thinking. I knew that my fears and "what ifs" were affecting my life and my relationships.

OMC: You could easily feel or act victimized, but you don't. You seem like a very empowered person. Would you agree?

AR: Luckily, I come from a family that's big on ownership. In college, when I was struggling with my self image, I started to think of ways that I could improve the situation and specifically, how I could better communicate with people so they could get past my disability. I'm very big on not expecting people to change their environments for me.

OMC: Do you ever wish you were an average-sized person?

AR: I did at one time, but not now. Being a little person has been the best thing for me because it has made it possible for me to really appreciate life, the differences between people and the ability not to judge others.

OMC: How was your family "discovered" for the television show?

AR: We had been in other national media and a producer came to us and asked if we were interested in shooting a pilot episode. We agreed, but the first network declined. However, our producer really believed our family had an important message, so he pitched it to TLC and they were interested.

At first, I was skeptical. You hear the words "reality show" and it's a little scary. Here I was working so hard for my kids to have a "normal" upbringing and I knew how easy it would be to get caught up in the media and the attention. Finally, we decided to do ta few episodes and then thought we'd be done.

We decided to continue the show because of the positive feedback and we really wanted to get the information out there ... about little people.

I have always had the firm stance that TV will follow us, not the other way around.

OMC: How accurately does the show portray your family?

AR: It's pretty accurate ... There's nothing on the show that I regret.

OMC: Do you know any of the other famous reality TV families? Jon and Kate Gosselin? The Duggars?

AR: I have never met the Duggars, and met Jon and Kate only one time. It was a total coincidence: Matt and I went on a trip to Hawaii and Jon and Kate were there renewing their wedding vows.

OMC: What are the negative aspects of being on the show?

AR: The positive outweigh the negatives, but of course, there are negative aspects. The hardest part is what people write in blogs about us and the judgements that are made after a single episode of the show. If only people could remember this is TV, and there are editors putting bits and pieces of a life together to create a half-hour of entertainment. But we put ourself in the limelight, and it comes with the territory. We made this choice.

British government argues that data about abortions because of disability must remain secret

From The Independent in the UK:

Data on the number of abortions performed for conditions like club foot and cleft palate must remain secret, government officials argued May 29.

An appeal panel will listen to experts who believe the numbers must remain confidential after the Information Commissioner ruled that they must be disclosed.

Such data - involving abortions carried out for reasons like cleft palate, club foot and webbed fingers or toes - was published up until 2002.

But ministers stopped the practice if fewer than 10 cases were involved, saying there was a risk the women or doctors involved could be identified.

The ProLife Alliance challenged this stance in 2005 and requested a release of the figures under the Freedom of Information Act.

The Information Commissioner ordered ministers to publish the data, but the Department of Health refused and appealed against the commissioner's decision.

Ministers originally called for the hearing to be held in private so the data could be discussed.

An agreement has since been reached with the Information Commissioner's Office for only part of the hearing to be heard in private.

Abortions can be carried out up until birth under category E, which relates to disability, as long as two doctors agree the procedure should be performed.

There is no list exempting certain conditions such as cleft palate or club foot.

A spokeswoman for the ProLife Alliance said: "We believe there should be absolute transparency and openness about these statistics.

"Abortion is not a right; it can be performed if you fulfil certain conditions under law. Otherwise it remains a criminal act.

"We have been very clear that we have asked for information about all abortions, not just those after 24 weeks.

"This case is about transparency."

She said it was "nonsense" for the Department of Health to suggest doctors could be at risk of being identified.

People who wished to campaign or pray outside abortion clinics only had to go on the Internet to find a clinic rather than looking through Department of Health figures, she said.

She said it was the department's job to adopt a neutral position on the issue rather than "taking sides" in the debate.

A spokesman for the Department of Health said: "Data on abortions is considered highly sensitive personal data.

"The Office for National Statistics guidance does not recommend releasing any data with a count of less than 10. Releasing such data could increase the risk of identifying individuals.

"The guidance provides clear boundaries to make as much information about abortions available as possible, whilst protecting the individuals concerned - both patients and doctors.

"When the ProLife Alliance asked the Department to release the full data in 2005, we withheld it to secure individuals' confidentiality.

"However, following an appeal from the ProLife Alliance, the Information Commissioner ruled that the department should release the full data.

"The tribunal hearing taking place on 29 May - 3 June will decide whether the data should be released."

A son's memoir reveals the ghosts in a family when a disabled family member is hidden in an institution

From the intro to a longer story in The Baltimore Sun:

Steve Luxenberg is a journalist and a son, and he is scrupulous about fulfilling his differing responsibilities down to the smallest detail. But sometimes, the two roles he's played haven't always jibed.

On at least one notable occasion, the son prevailed. At other times, the reporter won out.

Luxenberg's book, Annie's Ghosts, which was published this month, is part journalism, part social history and part family memoir. It also can be read as the author's struggle to reconcile the competing parts of himself, to pay his familial duty to his mother while remaining true to the values of his profession.

"I think I did succeed in being both a journalist and a son," says Luxenberg, an associate editor for The Washington Post, and a former reporter and editor for The Baltimore Sun.

"At least, I hope I did. I didn't hold back on the readers. I didn't leave out facts of any importance, but I also remained empathetic to my mother. One bookseller told me, 'There's a lot of love in your book.' "

That author's internal conflict began in 1995, when he learned that his mother was not the only child that she claimed to be for nearly all of her life. In reality, Beth Luxenberg had a disabled younger sister named Annie, who, decades earlier, had been sent away to an institution in Michigan. Beth had hidden Annie's existence from everyone: her neighbors, her closest friends, her three sons and two stepdaughters, and - possibly - her husband.

After Beth died in 1999, her journalist son set out to find out as much as he could about the aunt he never knew. He also wanted to figure out why his mother, who taught her children to always tell the truth, had lied about a matter of such importance.

In the month since it was published, Annie's Ghosts has received some national attention. There have been reviews in The Washington Post and The Detroit Free Press, and a lengthy interview with the author was broadcast recently on National Public Radio's All Things Considered.

Critics have commented on the hybrid nature of Annie's Ghosts, which mixes objective and subjective methods of storytelling. It's a rare memoir in that it contains 22 pages of footnotes.

The author's obvious passion for the truth is one of the most touching aspects of the manuscript. Luxenberg bends over backward to avoid inadvertently coaching his sources and tainting their recollections. He is painstaking about distinguishing between what he knows for a fact and when he is unavoidably drawn into making suppositions.

Even his Web site ( www.steveluxenberg.com) has been professionally edited for accuracy.

That compact with his readers is why Luxenberg eschewed the narrative storytelling style now in vogue, which uses fictional techniques to tell real-life stories. His prose style is plain and unadorned, without fanciful images or hyperbole.

"One of the things this book is about is the distortions that memory imposes on truth," he says.

"In some instances, I'm interviewing people about events that happened 50 years ago. I couldn't bring myself to pull a fast one on the reader by telling them that this is the way things really happened.

"I also saw it as an opportunity to teach readers about the methodology that journalists use. My experience is that people enjoy being shown how the sausage is made."

Yet, for all Luxenberg's diligence, there was one time when he deliberately allowed an error to make it into print. When Beth Luxenberg died, Steve prepared information for the obituary that ran Sept. 3, 1999, in The Free Press. The article describes her as "an only child of immigrant parents" - a statement the author knew to be false.

"That is the most mystifying thing to me," Steve Luxenberg says.

"I had known about my aunt for several years. So how could I, as a journalist, write that my mother was an only child? Maybe I was being respectful of the way she'd want to be remembered. Or maybe I didn't fully believe that she really had a sister."

Annie's existence came to light in 1995 in a roundabout manner, in a phone call made by a social worker to Luxenberg's half sister, Marsha Rosenberg. She told Steve about Annie, and they later told their siblings.

An end-of-life expert faces the ethical questions she studies when her husband becomes paralyzed

From the intro to an extended feature in Salt Lake Tribune in Utah:

The moment Brooke Hopkins' heart stopped beating, Peggy Battin found herself in a scene whose ending she had written time and again.

Doctors, nurses and aides swarmed Hopkins' hospital bed, urgently working to save his life. Battin watched in horror as his eyes rolled back and his face grew ashen. A burly aide screamed at her to get out, but she didn't budge. She couldn't leave her husband of more than 20 years. Not now. Not ever. (The couple is pictured.)

"Oh, my God," she thought. "This could be it."

It was a time of decision and pain that Battin had described often through decades of studying the issue of death. Beginning in the 1970s, she was a pioneer in the field of medical ethics, specializing in end-of-life questions. Suicide.

Euthanasia. Do Not Resuscitate orders. When and how to die. These were the knotty subjects she debated and discussed in the classroom and courtroom.

Yet it was always about other cases, other people, other situations.

In one unexpected episode in City Creek Canyon on an ordinary November weekday, Battin's personal and professional lives collided.

She knew by heart the arguments for not resuscitating fatally injured patients. She had defended vigorously a person's right to be the final architect of his own death. Yet she also knew her husband well enough to believe he would want to live even if completely paralyzed. But what if he hadn't? Could she have signed a do-not-resuscitate order? Or worse, if he asked her to help him end his life, could she have done it?

Hopkins' life-altering accident on Nov. 14, Battin says, "has presented me more than an intellectual challenge to the views I've been defending over the years. It is a deeply personal, profoundly self-confronting challenge."

Michael Battin has witnessed his mother's metamorphosis.

"Not a single part of her world is the same as it was six months ago," he says. "It is the most fantastic irony you could imagine."

U.S. Supreme Court considers when public schools must reimburse parents of special ed students for private school tuition

From The New York Times:

In a case with potential financial repercussions for school districts and families alike, the United States Supreme Court will soon decide when public schools must reimburse parents of special-education students for private-school tuition.

The case before the court involves a struggling Oregon high school student, identified in court documents only as T.A., whose parents enrolled him in a $5,200-a-month residential school after he became a heavy marijuana user and ran away from home.

Although his guidance counselor had noticed his difficulties and arranged an evaluation, the boy, who had angry outbursts and a history of behavioral problems, was found ineligible for special-education services at his high school in the Forest Grove School District.

“The district evaluation looked only at whether he had learning disabilities,” said Mary Broadhurst, the lawyer representing the boy. “Even though staff notes mentioned suspected attention deficit hyperactivity disorder, they never evaluated him for it. So they refused to help.”

Forest Grove, in its effort to reverse an appellate court decision ordering it to pay the boy’s tuition, argues that precisely because the boy never received special-education services in public school, he is not eligible for tuition reimbursement under the federal disabilities law.

Disability rights advocates, backed by the federal Department of Education, argue that the law must allow such reimbursement, even for children who were never in special education, or risk forcing them to waste precious learning time languishing in classrooms where they are not getting an appropriate education.

School districts, though, contend that paying for private school for students whose parents enrolled them without district consent — and without previous eligibility for special-education services — diverts precious resources from the millions of special-education students served in the public schools.

In this case, Forest Grove School District v. T.A., No. 08-305, the district said the family agreed with the initial finding that their son was not eligible for special education, and removed him to private school without following all the procedures to get what ultimately was a diagnosis of ADHD and other problems for their son.

The Supreme Court, which heard arguments in the case in April, is taking its second pass at the issue. Two years ago, in New York City Board of Education v. Tom F., the court deadlocked after Justice Anthony M. Kennedy recused himself without an explanation. In the case, Tom Freston the former chief executive of Viacom, sought tuition reimbursement after enrolling his learning-disabled son in private school without ever trying public school. The split left standing the appellate court ruling in favor of Mr. Freston. In the Forest Grove case, the Federal District Court ruled that the boy’s family could not receive reimbursement, but the decision was overturned by the appellate court.

There are substantial differences between the two cases. In New York, a wealthy family sought tuition reimbursement without trying public school. In Forest Grove, though, T.A. was in public school from kindergarten until his junior year, receiving extensive in-home help from his mother and older sister to move from grade to grade but unable to get special-education services, despite his mother’s pleas for “some method of teaching more appropriate for him.”

But legally, both cases center on the interpretation of a 1997 amendment to the Individuals with Disabilities Education Act, which provides that disabled children are entitled to a “free appropriate public education.”

That amendment says that parents of children with disabilities “who previously received special-education” services in a public setting may be entitled to reimbursement for private-school tuition if their public school did not make a free appropriate public education available in a timely manner.

While most of the nation’s six million special-education students attend public school, the law allows parents to seek public financing for private school if the public schools cannot adequately serve their children, and almost 90,000 students are in private placements — most of them with their public school’s agreement.

But increasingly, thousands of families unilaterally enroll their learning-disabled, emotionally disabled or autistic children in private schools — often with staggeringly high tuitions — and then seek reimbursement.

T.A.’s family, backed by the federal Department of Education and many disability rights groups, say that reimbursement must be available, even if the school district has refused to provide special-education services.

Otherwise, they say, school districts would have an incentive not to identify a student as disabled or provide services.

“A lot of kiddos, like this one, develop emotional problems in high school, when the stress gets greater,” Ms. Broadhurst, the lawyer, said. “In this case, the family asked for help at school and they were denied. If the Supreme Court says that means they can’t get reimbursement, there’s a perverse incentive from schools to sit on their hands and not find the kid eligible, but just wait until the parents find some other solution.”

The Education Department said in a friend-of-court brief that a policy precluding reimbursement for students who had not already received special-education services in the public schools would produce “absurd results, especially in cases like this one, where the only reason the child did not receive public special education is that the school wrongly refused to provide it.”

But the Forest Grove district, backed by New York City and many school groups, argues that unless reimbursement is limited to those who have previously received special-education services in the public schools, families have a troubling incentive to keep their children out of public school.

“The whole point of IDEA is to encourage cooperation between parents and school districts to ensure the education of disabled children in as mainstream a setting as possible,” said Michael Best, general counsel to the New York City Department of Education. “If you allow parents to place their children in private school without ever trying public school, it undermines that cooperation.”

Mr. Best said reimbursing parents for private-school tuition, even if they never considered public school, would lead to a ridiculous situation in which parents who tried public school and complied with the procedures to determine whether private-school placement was required would have a harder time getting reimbursement for private-school tuition than those who never set foot in public school.

The New York City schools paid $89 million for private-school placements for disabled students in 2007-8, up from $53 million two years earlier.

A Massachusetts mother worries about the future for her adult son with autism when services stop

From the Amherst Bulletin in Massachusetts:

Two days every week, Peter Aronson (pictured) goes from school to Brookfield Farm in South Amherst, where the 21-year-old has learned to use a shovel to load a wheelbarrow with woodchips and then to place these woodchips between the rows of crops growing in the field.

While it may not seem like challenging work, Peter's mother, Naomi Dratfield (pictured), sees this as one of the essential skills for her autistic son to master before he turns 22.

When he celebrates his birthday in September and is mandated to leave the system that serves autistic children, Dratfield said she fears this will result in fewer opportunities for Peter, who, like other adults with autism, may be confined to living in a group home and being part of sheltered workshops.

"At 22, a child with Pete's level of needs goes from school services to adult services," Dratfield said. "Options for people like my son become extremely limited and narrow."

This is unfortunate, she said, because people with disabilities can feed off the anxieties of others, and it is also the opposite of what's being encouraged when they are younger.

"We've worked hard on integrating the children into the schools," Dratfield said. "Now comes adulthood, and there are no options for them."

With this in mind, Dratfield is working with an organization called the SAGE (Special Adults Greener Earth) Crossing Foundation in an effort to launch what she describes as an intentional farmstead community, where both able and disabled individuals would live and work together.

Dratfield will be speaking about this vision as part of the "Options for Adults with Autism" benefit concert Friday at 7 p.m. at the Unitarian Universalist Society, 121 North Pleasant St., in which her daughter, Molly Aronson, a University of Massachusetts cello performance major, along with Lillian Buss Pearson, a teacher and accompanist, will be the featured performers.

The beneficiaries of the concert are SAGE Crossing and the Polus Center, both of which are involved in establishing innovative programs for adults with developmental disabilities.

"This is a pioneering fundraising event," Dratfield said. "We want to create awareness that we've got to do something, and do something now."

The model of an intentional farmstead community Dratfield envisions would help bring more meaning to her son's life and have a guiding philosophy that each person, no matter the capabilities, is highly valued.

"That's my ultimate goal for my son," Dratfield said.

In this setting, these autistic adults could feel they are doing something for their own community, as well as the larger community.

Dratfield said she has seen similar ventures in action at Bittersweet Farms in Whitehouse, Ohio, where people with and without disabilities live in mutually beneficial relationships, and at Camphill Village in Copake, N.Y., where an intentional community for adults with disabilities, co-workers and children run a farm and bakery and do woodworking and arts projects.

Sites for the Camphill movement, founded by Rudolf Steiner, are common in Europe, though it doesn't necessarily offer the one-on-one assistance her son, and others with autism, would need.

Dratfield, who works professionally as an occupational therapist, said being at a farm allows Peter to have a varying routine each day.

It also brings him closer to nature and animals, though when he first started working at the farm he didn't like the free-range chickens that wandered the property.

Peter first started doing similar physical work at the Hampshire College Farm before coming to Brookfield, which is only three miles from his home.

On a recent afternoon, Dratfield helped her son with his work, repeatedly shouting encouragement to him. "Let's go, lovey! That's a boy!"

The challenges for Peter doing his job are obvious, as he can be easily distracted. For instance, instead of shoveling the woodchips, he decides to break several large twigs and place them in compost piles. But Peter also shows ingenuity, like when he can't easily turn the wheelbarrow around without hitting the crops, he instead navigates the wheelbarrow backwards.

With an increasing population of children diagnosed with autism, about 1 in every 150 births nationwide, and a corresponding rise in the number of autistic grown-ups, more parents are looking at new concepts, rather than the standard templates. "We're working on old models, really old models," Dratfield said.

Dratfield said the new concepts are needed from both a social standpoint of providing better lives, as well as an economic standpoint that states can't easily afford the costs associated with treating adults with autism.

She points to an editorial published last month in the Washington Post, written by Linda Davis, a member of SAGE Crossing, noting that assisting adults with autism will cost the nation $27 billion over the next 15 years.

During Autism Spectrum Awareness Day last year, state Department of Developmental Services Commissioner Elin Howe spoke of the importance of addressing the transition from special education to an adult service system.

"Ultimately, we will need to think creatively about how to serve those children as they move into adulthood, as well as serving adults who are already living in our communities," Howe said.

Howe could not be reached for comment.

Molly Aronson said the concert will feature both solo and shared pieces of works of Haydn, Hindemith, Chopin and Brahms. "I need to give back to my brother because he's given a lot to me," Aronson said. "It's a way to give back doing what I do best."

The concert is free, but those who attend are encouraged to make donations.

Oscar Pistoius retains his title as fastest amputee in the world

From The Times in the UK:

Oscar Pistorius remains the fastest amputee sprinter in the world, but only just, after a near rerun of the Beijing Paralympic 100 metres final saw him catch Jerome Singleton on the line at the BT Paralympic World Cup in Manchester May 24.

Pistorius, the South African, and Singleton, his American rival, both 22, looked uncertainly at each other after crossing the line. Pistorius appeared to have just caught his rival and was confirmed as the winner in 11.13sec, with Singleton 0.03sec behind, exactly the same margin as in Beijing.

“I wish they would stop calling it being ‘pipped’,” Singleton said. “He just beat me again. He got me again. It’s fine but I do find it inspirational because he helps me run faster.” There was no indication of whether a lean-looking Pistorius is in good enough shape to qualify for the 400 metres at the World Championships in Berlin in August, because he had only two hours to prepare for his race yesterday. Tired and on a slow track, with no serious opposition, he ran 50.28sec. That is four seconds outside his best and nearly five outside the time, 45.40sec, that his coach says South Africa Athletics have told him Pistorius needs to qualify for the team going to Berlin. The B standard set by the IAAF is 45.95sec.

“I’ll look at that time and think, ‘Can I make the qualification?’ ” Pistorius said. “Let’s be honest, it was shocking. I think that’s the slowest time I’ve run in 3½ years. But then the 100 metres was one of the best times I’ve run in a year. And my first 400 metres race last year was almost as bad as this. Normally I get two to three days to concentrate on a race, here I had an hour. The 100 was the focus today. Jerome is an amazing 100 metres athlete; I knew if he wasn’t here, I wouldn’t have run as fast as I did today.”

Pistorius, who has been training for only five weeks after an accident in a speedboat three months ago put him in hospital with broken ribs, eye socket and jaw, admitted to feeling sick with nerves before the start of the 100 metres. “I was very nervous because a month and a half ago I didn’t know if I would be up to running here,” he said. “I felt sick before the race today because I was sure he was going to beat me. He made me play catch-up again. I only knew I’d won about five minutes afterwards.”

In Paralympic categories, Pistorius, as a double amputee, is classed as a T43 and more disadvantaged than the T44 single amputees, such as Singleton. But Pistorius makes up for his lack of propulsion out of the blocks on his carbon-fibre blades with his exceptional speed and balance after the first 50 metres. In Beijing he had to come from six metres, here it was more like three.

Pistorius’s 400 metres form will become evident in the next few weeks as he heads to the European circuit. “I think in two or three weeks, I’ll feel much more comfortable,” he said.

“I’ve no doubt I am going to run a personal best this year. I’m staying in Europe until the end of September and I think for the first time in my five years on track, I won’t have the distractions of flying up and down.”

It was a mixed day for Britain on the track. David Weir, the double Paralympic gold medal-winner in Beijing, won the 400 metres wheelchair race, beating Marcel Hug, from Switzerland, who had beaten him in the 800 metres two hours before. But Shelley Woods, Britain’s best women’s wheelchair racer, was surprisingly off the pace in coming third behind Tatyana McFadden, of the United States, in the 800 metres and 1,500 metres.

Family of disabled girl sues New York City, alleging she was abused by other students on school bus

From WABC-TV:

NEW YORK -- The family of a young disabled girl is suing the city, claiming she is being abused by a fellow student on her school bus and even inside the school.
Michael Tucker says his daughter, Tytia, was born with brain damage and cerebral palsy.

After several years as a special education student at P.S. 396, we're told Tytia never had a problem until last December.

On a bus outside the school, she was allegedly bitten on the face by another special education student.

Tucker says there were four other incidents of biting or scratching.

The latest incident is said to have happened on May 28, apparently leading to a mark on Tytia's face.

The Department of Education told Eyewitness News that according to the superintendent responsible for the school, all of the complaints involving Tytia were investigated and were unfounded.

But Tucker showed us a report from the Office of School Health, indicating that Tytia suffered a face bite back in December. Also, the school bus driver filed an incident report.

Young woman with dyslexia named top teen chef in the nation

From the Kansas City Star:

Sammy Jo Claussen is officially the best teen chef in the nation, but she still thinks her grandma makes the tastiest nachos in the world.

The 19-year-old Shawnee Mission North graduate won the title in a cook-off against 33 other regional winners at the Best Teen Chef Final Round Competition at the Art Institute of Charlotte in North Carolina.

As the top teen chef, she will receive a full-tuition scholarship to study culinary arts at the International Culinary School at The Art Institutes International-Kansas City.

She has already spent several weeks this spring practicing her culinary skills at her future college.

The high-tech kitchens, shiny new lab equipment and fast-paced environment at art institute are a far cry from the cozy little kitchen Claussen remembers falling in love with as a child.

Her passion for the culinary arts was born 12 years ago when she began helping her grandmother cook dinner.

The first-grader couldn’t wait to get her hands dirty and bond with her favorite relative.

“We used to make chicken noodle soup from scratch, which was so delicious,” she said. “And my grandma’s face would just fill with happiness after every dish was made. I wanted that same feeling so bad.”

With her grandmother’s encouragement, she started cooking on her own at the age of 12.

By the time she was in her late teens, she had already been a cook for a variety of cuisines. She worked at a Mongolian barbecue, an Italian restaurant, an all-American diner and a country club.

When she was a junior in high school she was accepted into the Broadmoor Technical Center to study culinary arts.

Not bad for a kid who struggles with dyslexia.

“I used to be a horrible reader before I started cooking,” Claussen said. “Now it’s almost like I don’t have it anymore. Reading recipes, watching the Food Network and meeting different chefs at Broadmoor has helped me so much because I’m learning new words every day.”

When the Overland Park student entered the Kansas City Regional Best Teen Chef competition, however, she had an even bigger challenge to face. A bowling accident required her to wear a cast during the tournament.

To make up for her disability, the teenager practiced her knife skills twice a week and eventually practiced her cooking skills twice a day.

At the competition, when she completed her meal — shrimp cocktail, chicken, rice pilaf, green beans and mushrooms — the judges were dazzled. They were not surprised she went on to win the national title.

Steve Venne, the chef director at the Art Institute International-Kansas City, is excited to have Claussen join his student body in the fall.

“She has talent and she’s moldable so I think she will do very well in the industry,” he said. “Her food is always presented well and tasty. I knew she would place in the top five (nationally) for sure.”

This summer, Claussen doesn’t intend to spend much time in the kitchen. She wants to enjoy her time off by relaxing a little bit.

Plus, she still has a few perks to fulfill as the nation’s best teen chef.

As the winner, she will be an intern for a day at the Food Network Kitchens in New York City, which includes a studio tour, dinner for two at a Food Network Chef’s restaurant and a library of Food Network Kitchens cookbooks.

Then it’s off to her dream school.

“I want all kids to know that a learning disability can’t stop your dreams,” she said. “And now because I put my heart out there and worked hard, I don’t have to worry about being in debt because my entire tuition will be paid. I don’t have to work 24 hours. I can spend my free time actually studying.”

NY hospital cuts services to disabled children

From WGRZ-TV in Buffalo, N.Y.:

Nineteen month old Garrett Andres has a prosthetic arm and goes to Children's Hospital for therapy every Thursday.

Five year old Colin Slevin was diagnosed with Asperger's Syndrome through an early intervention evaluation.

And Raven Thuman is a little girl with Cerebral Palsy, who attends preschool and receives therapy with a certified specialist at the same place.

All three of these children will now have to go somewhere else for services.

Joanne Thuman, Raven's mother, says, "We're gonna place her in somewhere that's not as quality as this. That's just the bottom line."

Parents and some workers rallied to keep the programs in place, including early intervention services and therapeutic preschool.

But, in a statement, Kaleida Health writes: "With over $10 million in state budget cuts this year, unsustainable programs that are not core to our hospital operations, unfortunately, are victim."

For these parents and kids, changing therapists and teachers will be another hardship they will have to overcome.

"I'm just a mom, I'm a mom with a kid. I don't know any different. This is what I have. This is life, so you know, you just deal. But it is extremely frustrating, I have to say because when you find the place that you love it would be so much easier of course to stick with it," says Thuman.

And while there may be other places to go, things won't be the same.

Kristina Slevin says her son has benefitted immensely from the services. She wanted somewhere that he could be with other children who are high-functioning Asperger's and worried he might regress in another atmosphere.

"And we were worried how effective a place would be," she said.

Gary Server watched his grandson graduate from the pre-school program and works in education.

"I myself have seen lots of programs, I haven't seen a program better than this," Server says.

And for a few parents like Amy Andres and her son Garrett, they haven't found a place that specializes in myoelectric arms for kids.

"It's a very unique disability, there's not that many areas to go, place to go to," she says.

Garrett has been fitted for several arms and just recently became able to pick up an item and hand it back.

"It just breaks my heart to see. He's made such progress, to make him stop, I can't imagine how anyone could make him stop in the middle of such amazing things," she says.

The programs will end in June and August and Kaleida says it has been working with parents since March to move the children. Parents are still hoping there's a chance they will reconsider.

Researchers help popular British TV show, EastEnders, with storyline about character with bipolar disorder

From BBC News:

Researchers at Cardiff University's school of medicine have been helping EastEnders scriptwriters with a storyline on manic depression.

In the soap, 19-year-old Stacey Slater (pictured, played by actress Lacey Turner) has been seen struggling with the symptoms of this mental illness.

It becomes apparent she has similar problems to her mother as the soap tackles the issue of whether the condition runs in families.

The researchers hope the storyline will reduce stigma attached to the illness.

Bipolar disorder, also known as manic depression, causes serious problems in 1% of the population with patients experiencing severe mood swings.

EastEnders viewers have seen Stacey Slater's mother, Jean, try to persuade her to seek medical attention. However, a fearful Stacey is adamant there is nothing wrong and tries to carry on as usual.

The researchers were first approached by the EastEnders scriptwriters for advice 18 months ago and they have been helping with the storyline, which is long-running, ever since.

One bipolar disorder sufferer who has been working with the researchers in Cardiff has also been sharing his experiences with the scriptwriters.

Neil "Twink" Tinning, 48, was diagnosed with bipolar disorder five years ago and said the condition was "debilitating and life altering".

"You go from real highs and mania to real depression and suicidal thoughts and it can range between the two on a daily basis," he said.

"Some days are really tough and I've attempted suicide four times."

Mr Tinning said the storyline was a "huge deal" for those that suffer from bipolar disorder.

"It's also a huge deal for de-stigmatising the illness," he said.

"The thing about EastEnders is it's not just a one-off story, it's a continuation of the story that goes right the way through this year."

The Cardiff-based bipolar research network hopes the storyline will help dispel some of the myths around mental illness and have set up a website explaining more about the illness.

One of the researchers, Professor Nick Craddock said: "In the past people have not spoken about this illness because of the stigma, and we hope to bring it to the public domain and get more research done so we get better treatment for this really important illness.

"We've also been involved in setting up a public information site to support the EastEnders episodes and provide information."

Prof Craddock also said they were conducting a study into bipolar disorder and genetics at the university which involved interviewing sufferers about their illness and taking blood samples.

"Then we're looking for which particular factors make individuals susceptible to illness - both genetic factors and life experiences," he said.

West African countries respond to spreading polio epidemic

From ReliefWeb:

DAKAR/HARARE -- More than 400,000 polio vaccinators in 11 West African countries will immunize more than 74 million children over the next week in response to a spreading polio epidemic, which is threatening thousands of children with life-long paralysis.

This year, 62 wild polio virus cases have been confirmed in seven previously polio-free countries, as an outbreak from 2008 originating in northern Nigeria - the only polio endemic country in the region - has swept westwards. Last week, confirmation came that the outbreak had reached as far west as Guinea, after that country reported its first polio case since 2004.

To stop this dangerous spread of the disease as soon as possible, oral polio vaccine (OPV) will be delivered house-to-house across all cities, towns and villages in the region. To succeed, the army of volunteers and health workers will work up to 12 hours per day, travelling on foot or bicycle, in often stifling humidity and temperatures in excess of 40°C. Each vaccination team will carry the vaccine in special carrier bags, filled with ice packs to ensure the vaccine remains below the required 8°C.

Dr Luís Gomes Sambo, World Health Organization (WHO) Regional Director for Africa commended the leaders and citizens of west Africa for taking these critical steps. "We know most of west Africa has been polio-free before, we know this region has suffered outbreaks and managed to stamp them out, and we are confident that these countries will again be polio-free soon."

"This extraordinary coordinated response is precisely what is needed to stop this polio outbreak," said Dr Gianfranco Rotigliano, regional Director for UNICEF in West and Central Africa. "Every aspect of civil society in these African countries is coming together to achieve one common goal: to protect their children from life-long paralysis caused by this deadly disease."

This synchronized immunization campaign is the third conducted this year, following similar activities in February and March. In most of the re-infected areas, no new cases have been reported since the second campaign, however confirmation of cases in April in Benin, Burkina Faso and Côte d'Ivoire and the reported case in Guinea underscore the fact that the outbreak is ongoing. The immunization campaign launched this week is considered critically important, as the approaching rainy season will complicate reaching all children, and will intensify circulation of the polio virus in the environment. Campaigns will need to continue until the outbreak has been stopped and endemic transmission of polio virus interrupted in Nigeria.

To help support the immunizations, Rotary International - the private-sector arm of the Global Polio Eradication Initiative - is mobilizing its membership throughout the region. "We are more committed than ever to achieving a polio-free Africa," according to Ambroise Tshimbalanga-Kasongo, chair of Rotary's Africa Regional PolioPlus Committee. "Our members will participate across these 11 countries, mobilizing communities, engaging with political and traditional leaders, and of course vaccinating children. We are proud to support these countries in their efforts to protect their children."

Recognizing the urgency of the situation, other key players are also scaling up their capacity; in April, the International Federation of Red Cross and Red Crescent Societies launched an emergency appeal in response to the outbreaks.

The full engagement of political leaders at every level - right down to the district - is considered critical to the success of the campaign. It is only through the full participation of this leadership that all sectors of civil society are mobilized to ensure every child is reached.

"Every child who remains unimmunized is not just at personal risk of contracting the disease," Tshimbalanga-Kasongo warned in conclusion. "Every unimmunized child allows the poliovirus the chance to survive and spread further. That is a real danger."

Notes to editors:

The Global Polio Eradication Initiative (GPEI) is spearheaded by national governments, WHO, Rotary International, the US Centers for Disease Control and Prevention (CDC) and UNICEF.

Since 1988 (the year the GPEI was launched), the incidence of polio has been reduced by more than 99%. At the time, more than 350,000 children were paralysed every year in more than 125 endemic countries. To date in 2009, 474 cases have been reported worldwide (as of 26 May 2009). Only four countries remain endemic: Nigeria, India, Pakistan and Afghanistan. Outbreaks in several previously polio-free areas are ongoing, including in west Africa, central Africa and the Horn of Africa.

The 11 countries in west Africa participating in the immunization campaign launched this week are: Benin, Burkina Faso, Côte d'Ivoire, Ghana, Guinea, Liberia, Mali, Niger, Nigeria, Sierra Leone and Togo.

Man with autism expresses himself with art on walls at Venice Beach

From The Argonaut in California:

The electric, at times carnival-like atmosphere at Venice Beach holds a special meaning for those who live and work there. It is often a place that is abundant with creative expression, fused with the entrepreneurial spirit during the day and resplendent with picturesque sunsets in the late evening. It is a place of many things for many people.

For Pierre Dumas, it has become like a second home, somewhere he can feel alive, with therapeutic benefits as an added bonus.

Dumas, 58, is autistic. While he cannot speak, he has found a way to communicate through art. And the Venice Arts Walls have served as his canvas to self-expression, which has in turn lead to the beginning of a progression of social interactions with fellow artists at the art walls and dramatic improvements in his everyday life.

“For autistics, art can often be very therapeutic, even if it is not part of a prescribed course of therapy,” says Dr. Paula Pompa-Craven, a psychologist who is familiar with Dumas’ case.


Art therapy has been used to rehabilitate addicts and is often employed with children who are autistic.

While Dumas, who was raised in Westchester, is not using art in a controlled clinical setting, it can still have great benefits for him, Pompa-Craven says.

“I don’t think that you have to be in a clinical setting for an approach to be therapeutic,” the psychologist, who is also an autism spokeswoman for Easter Seals of Southern California, told The Argonaut. “Being part of a community can be therapeutic.”

Dumas, accompanied by his life skills coach Eric Tapia, visits the graffiti wall area off of the Venice Boardwalk on weekends, an experience that both seem to enjoy.

“When he’s out there, you can really tell that he’s having a good time,” said Tapia, a budding artist who began coming to Venice Beach as a teenager. “Pierre really gets excited when people pay attention to his (art).”

Autism Spectrum Disorder (ASD) or autism is a developmental disability considered the result of a neurological condition affecting normal brain function, development and social interactions. It is the fastest growing developmental disability, increasing at a rate of ten to 17 percent annually, according to the Centers for Disease Control.

As many as 40 percent of autistic patients never learn to speak, and in many cases have significant problems developing nonverbal communication skills, such as eye-to-eye gazing, facial expressions, and body posture.

“There is a commonly held belief that art-making is beneficial to people (particularly children) with ASD due to their intense sensory needs (especially visual and tactile self-stimulation), often nonverbal nature, and need for more visual, concrete, hands-on therapies,” says Nicole Martin, a Missouri art therapist on her Web site, www.arttherapyandautism.com/.

Tapia, 24, noticed that Dumas became interested in the art walls after several trips to the beach as weekend outings as an alternative to working on arts and crafts at Dumas’ home in Culver City.

“You can tell by his facial expressions that he is trying to communicate with me and others when he’s (painting at the art wall),” Tapia said. “At first he would get very nervous around other people, but now he’s having fun hanging out with other artists and muralists.”

For the last three years, Dumas has lived with two other men, and according to those who know him best, he has progressed at a rate that no one had previously thought possible.

Yvette Beaird, Dumas’ sister, is a witness to those changes.

“He has changed so much,” she said. “He can prepare sandwiches for himself and do certain chores, which we thought would probably never happen.”

Prior to arriving at the home in Culver City, he was living in Costa Mesa in a more controlled environment. But since he moved to his new residence and began visiting the art walls, Dumas’ social skills have improved by leaps and bounds, says Beaird.

Beaird, who lived in Westchester through her high school years, mentioned a visit to her mother last December, when her brother shocked the family when he did something out of character.

“He called my mother ‘mama,’” she remembered. “And when we told him that it was time to go, he started crying.”

Pompa-Craven says interacting with his fellow artists at the art wall has done wonders for Dumas’ development.

“Being part of a community can be very therapeutic,” she said. “Pierre has grown by leaps and bounds. His eye contact, an important sign for someone with autism, has increased dramatically, and part of that is due to his family support and the opportunity to express himself artistically.”

The Venice Art Walls, like practically all arts venues, could be in jeopardy due to the city’s economic predicament. Since 2007, the city has given $35,000 to the art wall program, which pays for onsite supervisors who monitor the activity of the artists and provide permits for those who come to express themselves. Artists and muralists who wish to use the walls are required to have permits, which are issued onsite for one day.

Stash Maleski, the curator of In Creative Unity Art, a Venice-based art production company specializing in murals and live painting events, says that the walls have been an oasis for budding artists like Dumas and other muralists who use the space as a creative outlet.

“There were businesses and residents who complained about graffiti artists who were tagging their property before the art wall was built,” Maleski explained. “But what we’ve seen since the permitting plan was implemented is a higher quality of art and an observance of the rules, along with mentoring by some of the more experienced artists.”

Dumas has been the beneficiary of this community of artists, and that has undoubtedly played a role in his continued social development, says Pompa-Craven.

“There was some doubt initially about him being able to be a functioning member of the community,” the doctor said. “Being able to socialize with others in a community that accepts him has been very instrumental in his social growth.”

Maleski is hopeful that his organization will be able to raise additional funds to keep the art wall open.

“In previous years we have been able to raise additional money by fundraising, but with the budget deficit, the program is in jeopardy,” said Maleski.

The arts program is funded until August, but it is unknown whether it will be renewed by the city for another year.

For now, Pierre Dumas has found a home among the sand, sun and the Venice Art Walls, a place where self-expression can serve as therapy as well as the thread that can connect people from many walks of life.