Sunday, May 31, 2009

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


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,

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.

Maryland organization assists families in adopting children with Down syndrome from around the world

From the Catholic News Service:

WESTERLY, R.I. -- A Maryland-based organization is working against the trend of aborting Down syndrome babies by placing those children from around the globe with loving families in the United States.

Reece's Rainbow ( assists couples in adopting Down syndrome children from other countries. Founded in June 2006, Reece's Rainbow has already found families for more than 175 children with Down syndrome from 32 countries around the world, including Armenia, Haiti, Mexico, Ghana, Russia, Liberia, Vietnam and Korea.

An entirely volunteer organization, Reece's Rainbow prides itself on the fact that 100 percent of every dollar donated goes to the child, family or fund designated by the donor.

For decades doctors have recommended an amniocentesis test for pregnant women 35 and older because their age dictates a greater risk for chromosomal defects. Because the test carries a slight chance of miscarriage, it has not been routinely offered to younger women, who end up giving birth to the majority of Down syndrome babies.

But a 2007 recommendation from the American College of Obstetricians and Gynecologists encouraged doctors to offer a new screening procedure to all pregnant women, regardless of age. A sonogram and two blood tests in the first trimester now can detect the extra 21st chromosome that causes Down syndrome.

An estimated 90 percent of all prenatal detections of Down syndrome are said to end in abortion.

Reece's Rainbow is not an adoption agency, but a nonprofit, volunteer organization that serves as a connecting point for Down syndrome children and potential adoptive families. It focuses on saving the lives of children who might otherwise face life, or death, in mental institutions abroad.

The organization also works to help birth families who choose to keep their children, and helps them begin their own Down syndrome associations that fight for the rights and inclusion of special-needs children in their own countries.

Reece's Rainbow was founded by Andrea Roberts, who has a Down syndrome child named Reece (pictured) who has changed her life.

"Yes, my son is the catalyst for Reece's Rainbow. But I lean on my belief that God has a specific purpose for everyone, and this is his calling for me through Reece," Roberts said. "Not everyone gets such an obvious call. I spent many years drifting through life, with no idea where I was headed. I love to help others and my love for Reece fuels my passion to defend and protect others like him."

Shelley Bedford and her husband have adopted two boys from two different countries through Reece's Rainbow. Their son, Xander, adopted from Ukraine in August 2007, has Down syndrome and bilateral clubbed feet. He has had major foot reconstruction surgery and is learning to walk at age 5.

Their other son, Grifyn, also 5, was adopted from Serbia in April 2008. Grifyn was the first child with Down syndrome to ever be adopted in Serbia. Bedford now volunteers with Reece's Rainbow to assist other families who are adopting from Serbia.

The Bedfords live in Alabama where Shelley's husband is in the U.S. Army.

"The most rewarding part is seeing the families meeting their new children," Bedford said. "It is amazing to watch the journeys that families go through and how God pulls it all together. It is an honor to be a small part of helping unite children with their forever families."

Bedford said people were surprised when she and her husband announced they were adopting a Down syndrome child.

"No one understood why and they really didn't understand what to expect," she said. "Now they see our children and they realize that they are just normal kids, with personalities, likes and dislikes like everyone else. Our boys are loved and accepted by all of our family and friends."

Roberts said she opposes abortion, as do many people active with Reece's Rainbow. However, Reece's Rainbow does not take a stand on abortion or prenatal testing because its primary focus is to assist with adoptions and foster understanding and acceptance through example.

"I am sure that there are many members of our group who may have varying viewpoints, but Reece's Rainbow does not have a stated position on abortion," Roberts said.

"Our group is open to anyone with a love for children and people with Down syndrome. Discussions about such controversial things are discouraged because we want to keep the focus on the life-saving efforts of the ministry," she said.

Maureen Mulready, a Catholic from Liverpool, England, who has lived in the United States for nearly 20 years, said she thinks Reece's Rainbow represents the ultimate pro-life expression and applauded the rescuing of Down syndrome babies from lives in institutions where they would likely be mistreated.

"If society does not show compassion for its most vulnerable members, then it is doomed for worse things," Mulready said.

"In my opinion, the fact that Reece's Rainbow is helping to secure all of these adoptions of Down syndrome kids conveys to others that these children deserve the right to live just like other children," she said. "They are spreading a pro-life message of compassion and acceptance."

Artist hopes to encourage organ donation with his dolls

From in the UK:

An artist has created a set of vinyl figures which he hopes will encourage more people to donate their organs.

David Foox came up with the idea for his 'Organ Donors' collection - dolls which have hearts, lungs, eyeballs and brains for heads - after a family member had a double lung transplant.

While 'Uncle Ken' survived the op, David wanted to use his art to draw attention to organ donation and started work on the 24 doll collection.

The £10 figures come in 'blind boxes' meaning the buyer does not know what they have got until they open it ... and their gory nature could leave surprised heart attack victims needing a transplant.

"Human body parts are interchangeable and as much as we know about the body, there is so much more to learn," said Foox from Denver.

"It is a conceptual way of dealing with our humanity - whether physical or spiritual. It is also supposed to be a lighthearted approach to a serious, bloody, and gory issue."
He says most people have reacted positively to seeing the figures though sometimes people think they are "spooky" or "freaky".

The collection can be ordered online.

British study reports that autism is under-diagnosed

From The Telegraph in the UK:

A study of schoolchildren in Cambridge has found that for every three children who have been diagnosed with autism spectrum disorder there are around two who have the condition but have not been given a formal diagnosis.

It is estimated that around one in 100 children between five-years-old and nine-years-old have autism, meaning there are around 500,000 in the UK. But when researchers carried out more detailed assessments of 11,700 children, they found the true prevalence could be as high as one in 64.

This would mean that there are an additional 300,000 children in Britain with autism spectrum disorder but who have not yet been identified.

The study was led by Professor Simon Baron-Cohen at the Autism Research Centre and is published in the British Journal of Psychiatry.

Autism is a spectrum disorder with cases ranging from relatively mild problems with social interaction to more severe difficulties in behaviour such as not speaking, copying, rigid routines and social isolation.

Prof Baron-Cohen said: "We shouldn't assume that what we are currently diagnosing is the full picture, there is no room for complacency. But equally we shouldn't be alarmist and say we should be going out and actively looking for these cases. We should wait until those people want help. It is always better if the patient or their family is looking for help rather than it being thrust upon them."

He said the undiagnosed cases are likely to be at the mild end of the spectrum, are coping well with their families and may not need a diagnosis.

Prof Baron-Cohen said that for some families the autism label may 'raise anxieties' and be intrusive, rather than helpful.

The researchers used the Special Educational Needs (SEN) registers in schools, covering 8,824 children attending 79 schools and found 83 cases of autism-spectrum conditions giving a prevalence of one in 106 children.

Then they sent a diagnosis survey to the parents of 11,700 children in Cambridgeshire. From the 3,373 completed surveys, 41 cases were reported corresponding to a prevalence of one in 101.

Finally, the team sent the Childhood Autism Screening Test (CAST) to parents of the same 11,700 children to help identify any undiagnosed cases of autism-spectrum conditions.

All children who scored highly, along with a selection of medium and low scorers, were called in for further assessment.

Excluding the 41 cases already known about, the team found an additional 11 children who met research diagnostic criteria for an autism spectrum condition but had not yet been diagnosed.

The research said this could mean that for every three cases of autism spectrum that are diagnosed, there may be another two that are undiagnosed, giving a ratio of known to unknown cases of 3:2.

Prof Baron-Cohen said: "The two independent sources of information – the SEN register and diagnosis survey – provide converging evidence on the prevalence of autism spectrum conditions as being around one per cent of primary school-age children. This is about 12 times higher than 30 years ago; including the previously undiagnosed cases, this means that one in 64 children may at some point in their lives require support and services."

The increase in the prevalence of autism is probably due to better recognition of the condition by both parents and doctors, wider diagnostic criteria and more diagnostic services.

Prof Tony Charman, chairman in Autism Education, Institute of Education, London, said: "This study confirms findings from other recent work, including our own, that around on per cent of school age children have an autism spectrum disorder. The study also shows that in a significant proportion of cases children meeting research criteria for an autism spectrum disorder were unrecognised by schools and local health services. Accurate figures for the prevalence of autism spectrum disorders are important for planning health, social and education services."

Mark Lever, Chief Executive of the National Autistic Society, said: "This is important research, which for the first time gives us an estimate of the number of people who don't have an autism diagnosis but may be in need of support. Getting the right support at the right time is vitally important and access to appropriate diagnostic services is crucial."

Deaf teen masters four sign languages

From the Lee's Summit Journal in Missouri:

Armin Mehmedovic (pictured) likes to go to the movies and hang out with his friends. His cell phone is never very far from his reach, as he’s constantly text messaging. He’s very opinionated about sports teams, his favorites are Ohio State and the Royals, and insists Zack Greinke is the best pitcher in the league.

Mehmedovic sounds like an average teenager, and he is. So what sets 18-year-old Mehmedovic apart from the hundreds of other teenagers in the Lee’s Summit area? Mehmedovic is deaf.

“There are a lot of things people assume I can’t do because I’m deaf,” Mehmedovic said. “Play sports, go to movies, play games like Texas Hold’em. I can do all those things.”

Mehmedovic and his family are originally from Bosnia.

“I remember some things about living in Bosnia,” he said. “Soldiers and trucks always on the roads and everything being really dirty.”

“It wasn’t safe for us to live in Bosnia anymore with the war going on,” said Mehmedovic’s mother, Emina. “We went to Germany when Armin was 2-years-old.”
Around this time was when the family learned that Mehmedovic was deaf. Emina said when Mehmedovic was only a year old, he suffered from a high fever.

“Armin had a high fever for a few days,” Emina said. “We went to the doctor three different times but they said they couldn’t find anything wrong with him. When we got to Germany we took him to another doctor and we learned he lost his hearing. They think it was because of the fever.”

When Mehmedovic was 3, he started at a school for the deaf. Emina would accompany Mehmedovic to school so she could learn German Sign Language to be able to communicate with her son.

“I wasn’t working at the time so I went with Armin and sat in his classes,” she explained. “It was hard for (Emina and Senad, Mehmedovic’s father) to learn but Armin picked it up right away.”

“I really liked it in Germany, I had a lot of fun there,” Mehmedovic said.

The Mehmedovic family stayed in Germany for six years until the Bosnian War ended.

“After the war was over they said we had two options,” Emina said. “We could go back to Bosnia or come to America. We couldn’t go back to Bosnia, there was no deaf school for Armin to go to and the country was torn apart because of the war. We wanted to stay in Germany because Armin and Dino (Mehmedovic’s older brother) had many friends but that wasn’t an option.”

In 1998, the Mehmedovics moved to Detroit, Mich. where they had family.

After moving to Detroit, Mehmedovic started attending a deaf school, though it wasn’t easy. Mehmedovic’s native language is German Sign Language but when he started school, he was forced to learn American Sign Language.

“It was hard,” Mehmedovic said. “I was leaving my friends but I also had to learn a completely new way of communicating.”

The next year, when Mehmedovic was in third grade, the family moved to Lee’s Summit, where he had to learn yet another language – Signing Exact English.

“It was extremely frustrating,” Mehmedovic said. “I had to relearn everything I already knew.”

Carla Givens, hearing impaired specialist for the R-7 School District, explained that Signing Exact English is more universal than American Sign Language.

“ASL is a language and culture all its own,” she said. “It has nothing to do with English. With Exact English, the person is signing in English order. There’s no so-called ‘right sign language’ to learn. It’s the family’s choice on what they want their child to sign.”

The R-7 School District uses Exact English, rather than American Sign Language, Givens said. Mehmedovic also learned Conceptually Accurate Signed English.

“Armin is the only student in the entire district fluent in four sign languages,” Givens said. “That’s something I think a lot of hearing people don’t think about, that deaf people can be fluent in more than one language.”

At first, Mehmedovic had a hard time learning Exact English and his frustration showed. He would get angry and push his books off his desk, act out or even shut-down emotionally.

“All those things are extremely normal,” Givens said. “Imagine being 8-years-old and not being able to communicate with your teachers, to have to learn an entirely new language at that age?”

Mehmedovic credits his teachers at Prairie View Elementary and Bernard Campbell Middle School with helping him learn.

“I first learned small words like ‘no,’” he said. “And then my vocabulary starting building up and soon I just understood.”

Givens said Mehmedovic can now switch easily between the four languages he knows and will sometimes throw in a German sign to keep the teachers on their toes.

“He’s taught us a few German signs,” she said with a laugh. “He’s still extremely fluent in German because that’s what his family signs at home.”

Mehmedovic’s home is typical of any family. After work and school, Mehmedovic talks with his parents and brother about his day and they watch TV, soccer is a favorite sport.

“My dad and I will talk about politics sometimes,” Mehmedovic said. “About what’s going on in Bosnia or in Germany.”

Currently, the family discussions usually turn to Mehmedovic’s next step in life – college. In the fall, he will start attending MCC – Longview to major in education. Later, Mehmedovic will transfer to Gallaudet University in Washington, D.C., the biggest school for the deaf in the United States.

“My mom wants me to go to a school closer to home, but my dad keeps saying, ‘Go to Washington,” Mehmedovic said with a smile. “I want to teach history and be a football coach for either hearing or deaf students, it doesn’t matter which.”

“We’re very proud of Armin,” Emina said. “We will support him with whatever he decides he wants to do.”

Mehmedovic likes to tell the story about when he first drove a car. His hands fly as he signs the story to Givens and a huge smile breaks out on his face. As the story continues, he gets more animated and begins to laugh a little.

“He loves this part,” Givens said. “When he almost backed-up into a light pole.”

Learning to drive stories are a regular part of any teenager’s life and Mehmedovic is no different. Darla Nelson, a sign langue interpreter for the R-7 School District, went with him and the driver’s education teacher for a lesson.

“Darla sat in the back seat and I watched her sign through the rear-view mirror,” Mehmedovic explained. “I just drove around for a while. I didn’t like parallel parking and I did almost crash into a light pole. But, other than that I drove perfectly.”

“Armin is a ham, he likes to joke around,” Givens said. “We’re very proud of him and what he’s accomplished over the years. Sometimes, deaf people can feel isolated from the hearing world but with Armin, he’s determined to be just an average teenager.”

“There are some things people assume I can’t do but I guess I like to prove them wrong,” Mehmedovic said.

Australian with Asperger's jailed for cyber-stalking "American Idol" contestant

From The Age in Australia:

A Melbourne woman who cyber-stalked an American Idol contestant has been jailed for 26 months.

Tanya Maree Quattrocchi, 23, has admitted stalking 2004 American Idol runner-up Diana Degarmo by hacking into her MySpace account, intercepting her emails and those of the entertainer's family and friends.

The Victorian County Court heard Quattrocchi, of Oak Park in Melbourne's north, pretended to be a 14-year-old fan to join the singer's MySpace site.

She proceeded to hack into her emails, accessed personal information and then tried to blackmail the singer.

Quattrocchi was placed on a community-based order for stalking and blackmailing Ms Degarmo over those offences in 2006.

However, six months later she again faced charges of stalking the singer after sending emails to her victim's family and friends.

Judge Lisa Hannan sentenced the serial stalker to 26 months' jail with a non-parole period of 12 months.

She expressed reservations about Quattrocchi's rehabilitation prospects, saying her offending had become entrenched and was ongoing.

The court heard that in November 2007 she sent an email to Degarmo's sister-in-law where she made false claims about the entertainer's sex life that the judge described as explicit and disgraceful.

When police arrested her in January this year she was sitting at an internet cafe, typing an email in which she pretended to be Ms Degarmo's mother.

Judge Hannan described her offending as serious, particularly since it occurred only six months after she had been placed on a community-based order for stalking the same victim.

"From a victim's perspective you are a faceless stalker invading every aspect of their lives. There is no door to lock, no alarm to activate," Judge Hannan said.

"They are constantly vulnerable. There is no way they can redress many of the lies you have told."

She expressed concern that Quattrocchi had told a doctor that she still felt she had been wronged and proposed to write a book about her experience.

Judge Hannan said this had the "potential to constitute further offending".

The judge said she took into account that Quattrocchi had pleaded guilty to stalking, had recently been diagnosed with Asperger's syndrome and her intellectual impairment had been assessed as borderline.

Polio survivor dances on TV show in India

From Sindh Today:

NEW DELHI, India -- He dances on swords, nails and broken pieces of glass - he has mastered traditional Rajasthani dance forms and recently performed on television. But fame came the hard way to polio-stricken Sunil Parihar whose source of inspiration was Sudha Chandran and her movie “Naache Mayuri”.

“My parents told me that I got afflicted with polio when I was nine months old. Both my feet were affected with polio till I was 12-13 years old. Then my right foot got cured but my left foot is still not absolutely fine. But I continue to dance because I am very passionate about it,” Parihar told IANS over phone from Mumbai.

The 34-year-old, who performed on May 27’s episode of Sony TV’s new multi-talent reality show “Entertainment Ke Liye Kuch Bhi Karega”, says he couldn’t even walk properly until he was nine years old. But gradually he not only started walking but also prepared himself for a performance at an annual school function. Since then there has been no looking back.

“When I reached class eight, I performed at my school’s annual function. I danced to Ila Arun’s ‘Resham Ka Roomal’ song which used to be very popular in schools back then. My photograph even came in the local newspaper and I was motivated to dance better,” narrated Parihar, who is originally from Pali, Rajasthan.

He says danseuse-actress Sudha Chandran’s biopic “Naache Mayuri”, which he saw nearly two decades back, inspired him the most. Sudha lost one leg in an accident but she continued dancing with an artificial leg.

“My inspiration primarily came from ‘Naache Mayuri’ which I saw 15-20 years back thanks to my school. They wanted to show handicapped children how a woman who has no leg went on to become a dancer. That struck the chord within me. I thought that if a person with no leg can dance, I can do it as well,” he said.

Until 2004, Parihar used to only perform traditional Rajasthani folk forms such as ‘ghoomar’ and ‘bhawai’. He learnt Kathak for six months but what interested him more were people dancing on broken pieces of glass or nails while balancing several pots on their heads.

“In 2004, I went to perform in a Rajasthan government function where I saw a man doing ‘bhawai’ on broken pieces of glass and on sharp nails. That’s when I thought of including it in my performance as well. Since then, I started performing on swords, nails, glass etc with pots on my head,” he said.

Parihar’s performance on the TV show comprised balancing seven earthen pots on fire on his head as well as dancing on two swords. He not only impressed the judges - Annu Malek and Farah Khan - but also won Rs.10,000 and a chance to feature on the week’s grand finale Friday. He would be battling with other contestants for a Rs.500,000 prize.

If he wins, it would be a major relief for Parihar and his wife, who have been staying in Mumbai for the past five years and trying to survive. He is also hoping that Farah Khan, an acclaimed choreographer-director, would use his talent in her films.

NJ conference to focus on needs of wounded vets as they return home

From The Gloucester County Times:

In the Vietnam war, for every soldier killed, three came home wounded. In Iraq, for every soldier killed, seven come home wounded. While the fatality numbers are dropping since the start of the war in Iraq, more veterans are coming home hurting both physically and emotionally.

With more soldiers coming home wounded, the need for therapy and physical treatment is becoming a pressing issue and will be recognized in an upcoming conference.

"We are all responsible to each other," said Evelyn Scholl, director of communications at the Southwest Council. The organization is hosting the conference entitled, "The Battle Beneath: the Camouflage Continues, the Plight of Returning Vets."

The conference, which is scheduled for June 5 in Vineland, focuses on veterans who are trying to adjust to civilian life and are suffering from post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI). TBI can occur from being near blasts and explosives as well as falls and motor vehicle accidents.

Melissa Arnott, a counselor and educator, will be speaking in the morning about the anger issues facing the veterans, the guilt they face, the drug and alcohol abuse and other topics facing veterans. Arnott is a licensed professional counselor in New Jersey and Pennsylvania and owns a private counseling practice. Currently she works as a director of the Academic Success Center at Rowan University, and started the second Student Veterans Association.

"It is heartwrenching to see these young people leave and come back in the condition they are in," said Arnott.

The afternoon will host a panel of experts such as Eric Arauz of Arauz Inspirational Enterprises, a disabled American veteran; and Lauren Delricci, president of Rowan University's Student Veterans Association. The panel will be moderated by Angelo Romeo, who was in the U.S. Army in Germany and Vietnam and is currently the director of the Gloucester County Office of Veterans Affairs.

In previous wars, the help was limited to the soldiers, not attending to the families who were being affected by PTSD. The number of services is branching out to group therapy, couples counseling and family therapy.

"You have everyone recognizing and accepting the fact that this is something that affects not just the warrior but the entire family," said Romeo.

Romeo said there are now services available for veterans to go and talk, and for the families as well.

The Southwest Council is part of the New Jersey Prevention Network. The symposium will be at the Veterans Memorial Home in Vineland on June 5 from 9:30 a.m. to 3 p.m. The conference is free but attendees must pre-register by Friday. The maximum attendance is 200.

Canadian families suing Ontario government, asking for funding of services at private religious schools for disabled children

From CBC:

The mother of an Ontario boy denied disability funding because he attends a Jewish school had her day in court May 27, two years after a lawsuit was launched claiming the province discriminates against disabled children who attend private religious schools.

Max Greenberg, 13, has a non-verbal learning disorder, but does not receive funding from the government for special computer resources, said his mother, Missy Hecker.

"What bothers me is my son sees the discrimination and how unfair it is and how unjust it is," Hecker said outside court.

Hecker and Max are among eight families taking the Ontario government to court because it does not fund services at private religious schools for blind, deaf and learning-disabled children.

Parents are instead forced to pay for the programs or move their children to a public or Catholic school — both of which are publicly funded in Ontario — where students with similar disabilities do receive support.

Yet children with other disabilities, such as speech impairments, can still receive government-funded therapy and services at private religious schools.

In 2000, the province began funding students in faith-based schools who required nursing, occupational therapy, physiotherapy and speech and language therapy.

That list left out children with other disabilities, Raj Anand, one of the lawyers representing the families, told the court.

"You're left with under-inclusiveness," Anand said. "We are talking about people who are equally disadvantaged."

Anand used the example of a 10-year-old student who is non-verbal, has a neurological impairment, and is attending a private Jewish school.

While the student was approved for funding for a speech therapist, Anand said the boy could not get help for his language delay problems, even though the therapist was capable of helping him in both areas.

2 different ministries provide funding
The issue of funding support is further complicated by the fact that two government ministries provide funding for disabled children.

The Health Ministry delivers services for children medically diagnosed with a disability, while the Education Ministry provides services for kids who have undergone an educational assessment.

This means children who come into the publicly funded educational system will have their educational needs met if they are blind, deaf or have a learning disability.

"How can being deaf or blind be an educational matter rather than a health matter?" Anand said.

Court also heard the government has a $14.4-million annual budget to assist students with a disability, but only uses about $4.5 million of that amount.

Anand said that shows it's not a matter of cost and there is no rational basis for refusing the funding.

"These are not experimental or untested therapies," he said, describing the support that many children need, such as computers to print out large print items if they are visually impaired.

The lawsuit was launched in June 2007, a few months before the issue of religious schools funding became a political hot potato during the provincial election campaign.

Former Progressive Conservative leader John Tory put his party in jeopardy during the campaign after he promised to extend funding to faith-based schools, upsetting voters and costing him the election.

The case continued May 28 with arguments from government lawyers.

California psychiatric hospital closes its doors to new patients

From the Sacramento Bee:

The steady increase of mentally ill residents combined with Sacramento County's budget woes forced the county's main psychiatric hospital late May 22 to close its doors to new patients.

The doors remained closed through Tuesday – and might stay closed for several more days, officials said, until its caseload falls.

Officials said the scene could repeat itself throughout the year as local and state funding continue their decline.

The situation, officials and advocates say, suggests the state is at the brink of a mental health catastrophe.

"I think that Sacramento County – like all counties in California – is facing a mental health crisis," said Dorian Kittrell, executive director of the Mental Health Treatment Center. "Unfortunately when (budget) cuts are needed, health care is often at or near the top of the list over and over again. And unfortunately, there's only so much a system can bear before it breaks."

The Mental Health Treatment Center handles the most severe psychiatric cases in the county. That's where police or concerned family members take people who pose a danger to themselves or others.

Caseloads have risen in recent years as the region's population has grown. The crisis center now sees about 590 patients a month, compared with 540 a month in fiscal year 2004-05, Kittrell said.

The admission rate from the crisis center to the inpatient unit has remained steady at almost 48 percent, he added.

The growth has pushed the treatment center – which has a capacity of 100 in its inpatient unit – to its limits.

To alleviate overcrowding, the Board of Supervisors allocated an additional $4.3 million to the treatment center in fiscal year 2006-07 to outsource patients to other facilities. Essentially, that paid for beds in other psychiatric hospitals such as Heritage Oaks Hospital, Sierra Vista Hospital and Sutter Center for Psychiatry, Kittrell said.

The county allocated that money again in fiscal year 2007-2008 and in the preliminary budget this year. The county, however, had to cut $1.2 million of that funding from this year's final budget in response to cuts the state made in the fall, Kittrell said.

By midyear the treatment center was out of money to send psychiatric patients to other hospitals.

The center stopped outsourcing patients about four to six weeks ago and the center's average daily census began to top the 100 limit, going as high as 109 patients, Kittrell said.

As a result, the state last Friday sent a letter to the center effectively warning officials to reduce their caseload or face sanctions, Kittrell said.

Late that afternoon, Kittrell sent an e-mail to officials and mental health providers announcing temporary closure of the crisis center.

One frustrated senior mental health worker, Daniel Uselmann, worried that the most severely mentally ill would have no place to go.

"We're the place of last resort, and now we're closed," Uselmann said.

Mental health advocates and officials say the treatment center overcrowding is just part of the larger county and state problem of underfunding mental health.

"I think it's a reflection of the shortage of acute mental health treatment in the community, particularly for those who aren't insured or don't have an alternative to seeking public assistance or public care," Supervisor Roger Dickinson said.

The county has cut almost $10 million from mental health since June last year. The cuts primarily have been to contractors that provide the bulk of outpatient mental health services.

Fewer outpatient mental health services have put an additional strain on the inpatient treatment center, leading to the temporary closure, said John Buck, chief executive officer of Turning Point Community Programs, one of the county's mental health contractors.

The situation could be getting even worse. Sacramento County is facing a projected $180 million general fund shortfall in the fiscal year starting July 1.

As a result, the supervisors will consider a number of cuts, including about $18.4 million to adult mental health services.

About $5.3 million of those mental health cuts could come from the Regional Support Teams – four facilities that currently provide outpatient care to more than 8,700 residents. After the cuts, the county won't be able to treat about 3,000 patients, said Ann Edwards-Buckley, director of the Behavioral Health Services Department.

The state's budget woes could bring additional pain. The state might cut back on so-called managed care funds, which counties rely on for mental health programs, Kittrell said. Almost $19 million of the treatment center's $36 million treatment center budget for fiscal 2009-10 is slated to come from managed care funds.

Decimated outpatient programs and an overburdened inpatient program are severe concerns for the county, Edwards-Buckley said.

"I'm not going to say people will die. I'll say it's certainly a possibility," she said.

Kittrell said the center may need to close the unit, depending on caseloads. Which means scenes like the one Tuesday afternoon could become common.

A worker standing outside the Sacramento County Mental Health Treatment Center on Tuesday afternoon tugged in vain at the locked front doors until a security guard let her in.

"In 17 years I've never seen anything like that," the mental health worker said as she headed inside.

Oscar-winning "Smile Pinki" premieres on HBO June 3

From HBO, which will show "Smile Pinki" the first time at 7 p.m. (EST) June 3:

Told in vibrant cinema verité style, SMILE PINKI follows two of the hundreds of families who journey to GS Memorial Hospital in the holy city of Banaras - also known as Varanasin - where free corrective surgery is available. When Pinki (who travels three hours on foot with her father) and Ghutaru arrive at the hospital, they see many other children who look like them for the first time in their lives, which calms their nerves. The doctors try to put the children at ease, but many have been ridiculed by other children, and in some cases have been cast out by family members who do not accept them.

Pinki (pictured) and Ghutaru undergo surgery after a series of diagnostic questions, then spend several days recovering in the hospital before going home. Five months later, both have healed completely and are attending school, playing with friends and smiling, enjoying a more normal life.

SMILE PINKI spotlights the work of Dr. Sudbodh Kumar Singh, who has operated on thousands of children, including Pinki, at GS Memorial Hospital as part of The Smile Train, a non-profit organization dedicated to helping children with clefts in developing countries.

"Each cleft surgery we perform is a modern-day medical miracle," explains Dr. Subodh. "This surgery gives these children not just a new smile, but a second chance at life." According to Dr. Subodh, the hospital performs roughly 3,000 operations per year, with a 100% success rate. The problem is the enormous backlog of cases.

Approximately 35,000 children are born with clefts every year in India; around one million Indian children now live with the condition, which is one of the most common and most curable of birth defects. While it is unknown exactly what causes a cleft palate or lip, it is more prevalent in poor families and likely linked to prenatal nutrition.

Notes director Megan Mylan, "This is one of those rare opportunities where something that devastates a young life can be so easily cured. Smile Train's strategy of empowering local doctors caught my attention. It just makes so much sense to have talented local doctors doing surgeries all year long, rather than flying in teams of Americans, who are only able to work for a few days and help a fraction of the children who need it. Seeing first-hand how dramatically this simple surgery changes children's lives is something I will never forget. For me, it did feel like a real-world fairy tale."

The Smile Train is the world's leading cleft charity, with thousands of partners and programs in 76 of the world's poorest countries. The organization's mission is to help millions of children suffering with unrepaired clefts in developing countries. It provides free cleft surgery to children from poor families that give children not just a new smile, but a new life. Now in its tenth year, The Smile Train will help its 500,000th child this year.

Megan Mylan is an Oscar®-winning documentary filmmaker and Guggenheim Fellow. Prior to winning the Oscar(r) for Best Documentary Short Subject earlier this year, SMILE PINKI premiered at SilverDocs, was nominated for Best Documentary Short at the International Documentary Association and won Best Short Documentary at the Boulder International Film Festival. Mylan's previous film, "Lost Boys of Sudan," won an Independent Spirit Award and was nominated for two News and Documentary Emmys(r). She has a Bachelor's degree from Georgetown University's School of Foreign Service and Masters' degrees in Journalism and Latin American Studies from the University of California at Berkeley. Mylan is currently directing a film on the struggle for racial equality in Brazil.

SMILE PINKI is a film by Megan Mylan; editor, Purcell Carson; directors of photography, Nick Doob and Jon Shenk; original music, Prasanna.

Ablevision puts developmentally disabled adults in front of and behind camera for online news program

From the Boston Globe:

A TV crew came to profile a visiting dance troupe at the Institute of Contemporary Art in Boston, but it wasn't your typical interview.

Crew members, both in front of and behind the camera, were from Ablevision, a TV show created by developmentally disabled adults in the Malden-based Triangle Inc. program. Some members of the dance troupe - from the acclaimed Gimp Project - have physical disabilities, and their differences are incorporated into their performances.

"It was beautiful. I've never seen so much charisma and beauty," said Ablevision's Camille DeGeorge.

"I was surprised there was so much violence," said Ablevision's Chris Alfonso. "You can't do violence at home. Violence is not good when you're out of the house either. But in a dance you can do violence."

A segment about Gimp fits Ablevision's mission by "exposing people with disabilities to the mainstream audience and showing that we're all people with abilities. We're all different people and we all have something to bring to the table," said Alisa Brugnoli, a former WHDH-TV video editor who started working with Ablevision five years ago and has been the full-time executive producer for the last two. "That's another reason I love Ablevision. Our crew gets to see people who are disabled as successful. A lot of times they don't have that in their life."

One Gimp dancer interviewed by Ablevision was Lawrence Carter-Long, who has cerebral palsy and has been interviewed often in his job as executive director of the Disabilities Network of New York City.

"Normally there's a weird kind of power dynamic in play when you've got a nondisabled person interviewing a disabled person," said Carter-Long. "Normally the disabled person in our society, culturally, is somehow seen as beneath them, and anyway people are normally intimidated being interviewed on camera by anybody. When you've got a group like Ablevision out there doing the interview, when you don't normally see disabled people in a position of power, it flips that dynamic. . . . I think for the cast and company of Gimp, it was really refreshing for us."

The award-winning Ablevision is a seen in 44 communities in Massachusetts and a handful in other states, as well as online at and Shows have covered everything from local programs to a multipart interview with comedian Kevin James when he was filming "Paul Blart: Mall Cop" at Burlington Mall.

"We film, we interview, we run the camera, we go on different shoots," said Ablevision's Christine Murdocca. "We have a studio crew, a production crew, and a creative crew."

Back at Triangle Inc. headquarters on a Malden side street, three staffers are learning to edit the footage.

"You edit things out. If you mess up, you take that part away," said Alfonso.

Triangle's mission is to provide participants with independence and self-sufficiency, and Ablevision teaches them video skills as well as life skills like organization and teamwork.

"We try to have these guys run the program as much as possible," said Brugnoli. "They're involved in the process every step of the way, from story ideas to final product."

Ablevision participants are developmentally disabled adults - age 22 to 74 - and some have physical disabilities as well. There's work for all who want it.

"We have a participant who's blind," said Brugnoli. "She can't run the cameras, so she does the interviewing. . . . We have people who don't talk. We just have them behind the camera."

Ablevision was started six years ago by a Triangle client who won a placement at Malden Access Television. He came up with the idea to have media training for Triangle clients, culminating in a one-time show. The first was a success so they decided to make Ablevision ongoing. More than 50 clients are involved now, and there are three part-time staffers in addition to Brugnoli.

"Part of our mission is to help the world at large understand that we are all people with abilities, and Ablevision is probably the most important way we do that, when we get the message out not only nationally but internationally via YouTube and the Internet," said Mike Rodriguez, chief executive of Triangle. "It's a very important billboard for the world to look at and understand that we are all people with abilities, and if we all can just get ourselves to the same starting line, we can all do wonderful things."

"Really our focus is on ability; we like to highlight people who do great things," said Brugnoli. "More and more we've been taking our folks on the road . . . getting them out in the community much more. I think it's important for people to see that people with disabilities can handle the demands of a television program and do a great job as well."

"There's a tenet in the disability-advocacy movement that says, 'nothing about us without us,' and I think the movement to have disabled people tell our own stories from our own perspective is a very positive one," Gimp's Carter-Long said.

And the next step for Ablevision? Murdocca answered like a TV pro: "Get a grant! So we can get paid for doing Ablevision."

Disabled entrepreneurs in Britain say they face prejudice

From The Daily Mail in the UK:

Would-be entrepreneurs who are disabled are being held back from starting a business by the attitude of customers and investors.

In a study of deaf and disabled people in the UK by the Government-funded Business Link, more than half said difficulties in overcoming the prejudice of customers were the major barrier to setting up their own businesses.

About 54 per cent had struggled to change the attitudes of key investors while more than a third said the lack of appropriate role models was a key problem for budding entrepreneurs.

Fewer than five per cent of firms have disabled owners, but the survey shows they have many strengths when running a business.

More than 60 per cent said they had a greater determination to succeed, while 52 per cent felt they had a better understanding of the needs of others - an advantage over their non-disabled counterparts.

And a report published by the University of Salford and sponsored by the Northwest Regional Development Agency suggested that bringing more disabled people into business could boost the UK economy by more than £2billion a year.

Stephen Collins, 50, (pictured) was born with cerebral palsy. Two years ago he set up Lazarus Mobility in Huddersfield, West Yorkshire, as a one-stop shop where people with disabilities can buy equipment and accessories they need to help them have a more independent life.

The firm employs four staff and Stephen has just launched two new divisions - Lazarus Adaptations, which sells and installs personally modified kitchens and bathrooms, and Lazarus Consultancy, which gives advice on all aspects of independent living for those with or dealing with disability.

He says: 'My biggest disability has always been people's attitudes. To be blunt I look like a disabled man and many people don't look beyond the cover.'

But Stephen is fiercely determined and says: 'Throughout my whole life I have had to overcome huge obstacles, but that has just spurred me on even further towards my goals. To get to where I have got I've had to be better than your average entrepreneur.

'What would help most for me is if people took away the word disabled and just saw the real person behind the tag.'

Practical help for disabled and non-disabled entrepreneurs is available from organisations such as Business Link which provides practical advice and guidance through regular workshops. Individual support is available either face to face or via the helpline on 0845 600 9006.

The Leonard Cheshire Disability charity has an initiative called Ready To Start, which aims to help disabled people start their own business.

Since it launched more than two years ago in association with Barclays it has helped about 500 people start their own business.

Through the scheme, disabled entrepreneurs are given a business 'buddy' as well as a mentor. Other benefits include free software and computer equipment and advice and guidance.

Founder of Kuwaiti disability group receives leadership award from Rehabilitation Interational

From Arab Times:

NEW YORK -- Founder and Secretary-General of Kuwait Society for the Handicapped, Munira Al-Mutawa, received May 28 from Rehabilitation International (RI) the first-ever Sir Harry Fang Empowerment Award for Leadership in Promoting Disability Rights and Inclusion.

She immediately dedicated the award to His Highness the Amir of Kuwait Sheikh Sabah Al-Ahmad Al-Jaber Al-Sabah for his support to persons with disabilities in Kuwait. The event, under the theme “Empowerment, Inclusion, Access: Unlocking the Potential of Children and Youth with Disabilities,” was attended by leaders from the disability community, the corporate sector, the civil society, diplomats, including the Kuwaiti delegation to the UN, as well as UNICEF Chief Ann M. Veneman and President of the UN Economic and Social Council (ECOSOC) Ambassador Sylvie Lucas of Luxembourg.

Al-Mutawa, who is also founder of the Gulf Disability Society, received the award, along with Charlotte Mc-Cain-Nhlapo of South Africa, Senior Disability Advisor for the World Bank and former member of the South African Human Rights Commission. The award was in recognition of their important contributions to empower persons with disabilities around the world and make a more inclusive society.

Receiving her award plaque, Al-Mutawa said in her acceptance speech, “I would like to say that I dedicate this award to His Highness the Amir of Kuwait Sheikh Sabah Al-Ahmad Al-Jaber Al-Sabah for his longstanding support of persons with disabilities in Kuwait.” She extended her gratitude and appreciation to RI for helping her achieve important tasks in the disability field, not only in Kuwait, but also in the Gulf region, the Arab world and the world in general. She serves as the RI National Secretary for Kuwait and has been a member since 1979.

“It was through my cooperation with RI that I learned a lot and shared experiences with true professionals. The results of that fruitful cooperation were the important achievements in my country, such as the Law on Care for the Disabled, on which I used to work for several years and that was finally adopted by the National Assembly in 1996,” she said.

“My love for giving never ended. I became somehow directed to supporting persons with disabilities but it has not stopped there. It extended to the needy on the global level for I have never distinguished people by their religion or nationality,” she told the guests.

RI President Anne Hawker told the fund-raising event that “an important way that RI can contribute to raising awareness and advocating for the UN treaty is to highlight the significant efforts of individuals like Munira and Charlotte, whose commitment to disability rights has far-reaching impacts across the globe.”

The recipients were chosen by RI for their leadership in the disability field, innovation and partnership. Kuwait’s Permanent Rep-resentative to the UN, Ambassador Abdullah Al-Murad, told KUNA following the event that he was gratified that Al-Mutawa received the award and that is an honor for Kuwait which is always in the forefront of the countries in the region that pays a great deal of attention and importance to the disabled people, praising the Kuwait Society for the Handicapped for supporting them. Al-Mutawa later told KUNA she is “proud of receiving this award because I highlighted my country, Kuwait, in the RI.” She noted that she is now fighting to have the Kuwaiti Higher Council for the Disabled Affairs as an independent body from the Ministry of Social Affairs and to have medical testing before marriage approved by the parliament, because that would give an early signal if there are cases of handicapped children, voicing her expectation that the four women recently elected to the Parliament will help push the issue forward.

Al-Mutawa was accompanied by Hashem Taqi, Director General of the Kuwait Society for the Handicapped which hosts some 475 handicapped. The event, co-sponsored by Ambassador Nassir A. Al-Nasser of Qatar and Ambassador Christian Wenaweser of Liechtenstein, was hosted in the latter’s residence and marked the first anniversary of entry into force of the United Nations Disability Convention. RI, founded in 1922, has 1,000 members representing 100 countries. It has been a leader in the disability field in the US and around the globe, working to empower the more than 650 million persons with disabilities around the globe and provide sustainable solutions for a more inclusive and accessible society. The award was named after Sir Harry Fang, from Hong Kong, in recognition of his important contribution to the RI humanitarian projects.

New treatments for cystic fibrosis may help others with genetic disorders

An abstract of the article in The New Yorker:

ANNALS OF MEDICINE about the development of new treatments for cystic fibrosis and how those treatments might be applied to other diseases. Cystic fibrosis is the most common fatal genetic disorder in North America among Caucasians; some thirty thousand Americans have the disease, and about ten million Americans are silent carriers. Describes the symptoms of those who suffer from cystic fibrosis, including the blockage of the gastrointestinal tract and reduction of lung function.

Tells about Chrissy Falletti, who has cystic fibrosis and participated in a trial of an experimental oral drug produced by Vertex Pharmaceuticals. After twenty-eight days on the medication, her lung function had increased by eighteen per cent over all. Her lung function began to decline within a week of the trial’s end. Vertex is launching a long-term, placebo-controlled trial that could lead to F.D.A. approval this year.

And while the drug targets a form of cystic fibrosis that occurs only in four per cent of patients, the fact that similar drugs are being developed by Vertex and other companies seems to signal a new treatment paradigm. Briefly gives the history of cystic-fibrosis treatment from its identification by Dr. Dorothy Hansine Andersen in 1935, to the discovery in 1985 that the cystic-fibrosis gene was situated on the seventh chromosome.

In 1989, researchers identified the gene and determined its function. The discovery set off a wave of euphoria, with many people convinced that cystic fibrosis would soon be cured. Yet, despite successes in the laboratory, patients had an immune reaction to the procedure, rejecting the delivery system that held the normal gene. Discusses the work of the Cystic Fibrosis Foundation, which is headed by Dr. Robert Beall, and its funding of research for the disease, including the use of automated systems to help produce a drug that could be taken orally and would work throughout the body to restore the functioning of diseased organs.

Discusses the different categories of mutations in the cystic-fibrosis gene and the “molecular origami” undertaken by scientists in their attempt to address these categories. Tells about the development of other cystic fibrosis drugs, including one by PTC Therapeutics, which reduced the rate of coughing in patients in a study in Israel. These drugs may have ramifications beyond cystic fibrosis. The drug produced by PTC Therapeutics could be applied to a wide number of genetic diseases.

Although the treatment of genetic disorders has long been considered too small a market for most pharmaceutical companies, an increasing number of biotech firms have found that genetic research can be used in broader ways than anticipated. All of the physicians and scientists the writer spoke with emphasized the many unknown variables, but for the first time, there is convincing evidence that the underlying defect in cystic fibrosis can be corrected.

Saturday, May 30, 2009

Disability advocates in San Diego join gay activists to support marriage

From part of the story in Zenger's Magazine:

Over 70 marriage equality activists occupied the office of the San Diego County Clerk May 27, as a protest against the California Supreme Court’s ruling that Proposition 8, which restricts marriage in California to one man and one woman, is constitutional.

Michael Anderson and Brian Baumgardner led the action by demanding a marriage license, and other Queer couples followed suit. The event ended peacefully, with no arrests, when the crowd dispersed an hour after the official closing time of the building.

Anderson and his partner of eight years, Brian Baumgartner, made themselves the focal point of San Diego’s latest protest against the passage of Proposition 8, which banned marriage between same-sex couples in California, and the May 26 decision of the California Supreme Court upholding the measure. They agreed to be the first couple to go to the clerk’s office and demand a marriage license, then sit down and refuse to leave the office after they were denied one. Other Gay and Lesbian couples, individuals (including at least two who were already legally married to same-sex partners in California during last year’s 4 1/2-month window of opportunity) and non-Queer allies joined in.

At the height of the action, over 70 people crowded into the waiting area inside the clerk’s office. According to Lisa Kove, strategic planning chair for the San Diego Equality Campaign, one of the organizations sponsoring the action, County fire marshals said there were too many people in the room for safety; and Kove, agreeing with them, did not contest it when they ordered some of the people to leave. The protesters had said throughout the day that they would not leave the building when it closed, and would accept being arrested in classic civil-disobedience fashion. In the end, however, no one was arrested and the building was cleared by 6 p.m., an hour after its usual closing time.

While the sit-in was going on inside the county clerk’s office, a parallel demonstration was going on outside the building on the Pacific Highway side which featured an open mike so people could express their feelings about Proposition 8 and the court decision upholding it. Kove, marriage equality activist Sara Beth Brooks and former San Diego City Council candidate Stephen Whitburn took turns MC’ing the event, sometimes going into the building and returning to report on the goings-on inside the clerk’s office. Gradually, however, the crowd outside dwindled down to about 12 people as the focus shifted indoors.

“Until the 1940’s, it was illegal for disabled people to get married,” recalled Linda Kwizdak (pictured) of San Diego Blind Community Services. “People were fearful of disabled people, and now they are very fearful of homosexuals. … I’ve had a lot of arguments with people who voted for Proposition 8 who say that homosexuality is a ‘choice.’ It’s not a choice to be what you are; it’s only a choice to express what you are.”

Kwizdak’s point was echoed by a woman in a wheelchair who spoke to the group inside the clerk’s office and said that her parents had had to fight for her right to attend normal schools instead of being shunted off to separate schools for people with disabilities.

A young man named Gibran Martinez showed up with a piece of duct tape across his mouth and, when it was his turn to speak, removed it from his lips but continued to let it dangle from his left cheek. “I came out seven months ago, and it’s very hard for me to come out to my family,” he said. “I was born and raised in Costa Rica, in a heavily Catholic, military family. Even though we have justices in place to rule over us, no one can judge me. No one can judge us.”