Amy Palmiero-Winters becomes first amputee to finish Western States Endurance Run

From The Sacramento Bee:

The exclamation point to a ground-breaking weekend at the Western States Endurance Run came at 8:43 a.m. June 27 from a 37-year-old woman who refuses to let others determine her limitations.

Amy Palmiero-Winters (pictured) ran through two sunrises on a prosthetic left leg, overcoming several miles of snow in the high country and the demands of a narrow, rocky and sometimes dark trail to become the first amputee athlete to finish the 100-mile race from Squaw Valley to Auburn.

She gathered speed down the final hill, strode quickly around the Placer High School track and shook her left fist in the air on her last few steps to acknowledge the crowd's roar.

The 37th annual event boasted plenty of firsts, with first-time Western States entrant Geoff Roes smashing Scott Jurek's course record by more than 29 minutes and first-timer Tracy Garneau cruising to a 14-minute victory in the women's race.

So why not have another Western States rookie put the finishing touches on an extraordinary two days?

"Harder than childbirth," said Palmiero-Winters, who finished in 27 hours, 43 minutes, 10 seconds. "It was tougher than I thought."

But Palmiero-Winters, of Hicksville, N.Y., didn't flinch at the prospect of testing her mind, body and spirit on a course she had never seen before last week.

There was too much at stake. Not for her, or her two children, although she conceded she normally runs "the crazy things I run" to show Carson, 6, and Madilynn, 5, the importance of a life without limits.

This was for Pat Griskus, an amputee runner who died in a 1987 accident before he had a chance to run the Western States.

"He wanted to be the first," said Palmiero-Winters, who planned to give her finisher's buckle to Griskus' family. "It was definitely a great experience. It was definitely an honor to be a part of the race."

Palmiero-Winters, a sports program director for a prosthetics company, has fashioned an impressive ultrarunning résumé since a 1994 motorcycle accident led to more than 25 surgeries and the eventual amputation of her lower left leg.

She ran in 10 ultras last year, winning the women's title in the Heartland 100 in Cassoday, Kan. On Jan. 1, she became the first amputee to qualify for a U.S. national track team when she captured the Run to the Future 24-hour race in Glendale, Ariz., by covering 130.4 miles.

She also received the 2009 Sullivan Award, given annually to the nation's most outstanding amateur athlete.

Saturday and Sunday, in a race that features 18,000 feet of climbs and 23,000 feet of descents, the threat of kidney failure, heat stroke and hyponatremia, and potential encounters with bears, snakes and mountain lions, Palmiero-Winters showed true grit.

"She was amazing," said Heather Perry, who paced Palmiero-Winters in the final 38 miles. "That was one of the easiest pacing jobs I've ever had. She was totally strong, did not waver for one second.

"I had no doubt about her."

Amy Dodson, 48, the other amputee runner in the field, dropped out 34.4 miles into the race.

Despite not having seen the course, Garneau, of Vernon, British Columbia, won the women's race early Sunday in 19:01:55, finishing ahead of Meghan Arbogast (19:15:58) and three-time Western States winner Nikki Kimball (19:23:09).

Rory Bosio, a 25-year-old from Soda Springs, delivered an impressive 100-mile debut with a fourth-place 19:32:07 clocking.

"This course is amazing," said Garneau, a 41-year-old personal trainer who lives with her golden retrievers, Bear and Logan. "It was absolutely gorgeous. I've got to bring my girlfriends."

Garneau overcame a painful Achilles' in the first 10 miles, taking the lead at the top of the four-mile climb from the start to Emigrant Pass and never relinquishing it.

"I trained so hard for this," said Garneau, who won the American River 50-Mile Endurance Run in April. "I was running scared. I thought (Arbogast) was minutes behind me the whole way."

Roes, 34, of Juneau, Alaska, ran 15:07:04, easily beating Jurek's 2004 mark of 15:36:27 under moderate conditions that helped a record 328 runners finish out of 426 starters.

Indian TV show to feature blind character

From One India:

If Bollywood exposed to us dyslexia, progeria, and autism, television has often concentrated on the basic physical disabilities such as blindness, deafness, as well as dumbness. Actress Sriti Jha (pictured), a.k.a Sudha of Jyoti, faces the biggest challenge of her shot career as she plays a blind girl (Sandhya) in the soon-to-be-launched ‘Rakt Sambandh’ on Imagine TV.

Interestingly, she’s part of the show Jyoti that means light. So, has she lost her vision while working in Jyoti? (Laughs) “Yes, Jyoti main kaam karte, nazar chal gayi,” Jha joked.

On a serious note, the girls talks about her preparation for the role. When it comes to playing the blind, one doesn’t need to look beyond the legendary Helen Keller.

“I’ve been reading about Helen Keller a lot. Before, I really didn’t know what to do as I hadn’t played such a character before. However, after reading about Keller, I’ve released that the normal man can see a thing in just one way, whereas as a blind, you can draw many pictures of the things around you. It’s this feeling that one needs to capture to play such a role, Apart from Keller, I’ve been hugely inspired by the film Scent of a Woman. No one has portrayed a blind man better than Al Pacino,” said the actress.

The girl seems to going the right way about her task, Let us see whether the viewers open their eyes to Sandhya’s story.

Deaf teen wins Miss Hawaii's Outstanding Teen

From Maui News:

Wailuku girl Lena Merrill (pictured) may not have been able to hear the applause, but she felt the love when she was crowned Miss Hawaii's Outstanding Teen earlier this month.

And when the 14-year-old travels to Orlando, Fla., in August, she will be the first deaf person to compete for the national title of Miss America's Outstanding Teen in the pageant's history.

Merrill, who was born profoundly deaf, said she entered the pageant to compete for scholarships and to have a new experience, and that it was a "dream" to win.

"I cried," she said. "I was proud of what I accomplished by stepping out of the box and doing this."

Merrill spoke in American Sign Language for an interview at The Maui News, with mother Kaulana Merrill serving as her "voice."

Last week she recalled that, in the moments after the judges called her name, she didn't realize right away that she had won.

Her sign language interpreter got so excited that she started crying and "waving her arms all over the place," so that Merrill couldn't understand what she was signing.

Merrill now begins her "year of service" as Miss Hawaii's Outstanding Teen, where she plans to focus on spreading awareness about her platform: "quality education for all deaf children."

"I would like to see the system change, so we can bring it to a higher level for all children in Hawaii" - both deaf and hearing, she said.

Merrill said she struggled as a young child at Wailuku Elementary School, where she didn't have a deaf-education teacher who could help her understand her lessons. She fell behind in her English and reading skills.

"They had no experience in teaching a deaf-ed class," she said. "It was hard for me to learn."

That began to change when she moved to Maui Waena Intermediate School. Merrill's family credits Principal Jamie Yap for recognizing Lena's needs and arranging for a qualified deaf-education teacher to come from the Mainland to work with her. He also assigned her a certified sign language interpreter to be her voice in the classroom and on the playground.

"It made Lena feel perfect with the girls in the hearing world," father Jaye Carmen said. "They were able to communicate."

And, he said, Merrill has blossomed since she started commuting to Oahu in the 8th grade to study at the Hawaii School for the Deaf and the Blind. She boards at the school during the week and flies back from Oahu on weekends to stay with her family in Wailuku, and will be entering the 10th grade this fall.

Outside of her studies, Merrill plays volleyball for Kalani High School in Honolulu, and dances with Maui's Tava Nui, a Tahitian group.

"I love dancing Tahitian," she said. "The drums are loud, so I can feel it in my heart."

Merrill said she entered the Outstanding Teen pageant, which is staged under the Miss America and Miss Hawaii organizations, because she was interested in the scholarship opportunities and she wanted to stretch herself.

The biggest challenge was competing against hearing girls, she said. Merrill had to participate in an opening dance routine with all the other contestants, even though she couldn't hear the music. To learn the song, she pressed her hands against the speakers as they were turned up to full volume so she could feel the beat, then during the performance she watched the other girls and timed herself to their movements.

But Merrill's deafness didn't stop her from making close friends among her pageant "sisters."

"I taught them sign language," she said. "We were like a family."

For the competition, she was judged on scholastic achievement, an interview with the judges, a talent segment, lifestyle and fitness, and her answers to onstage questions.

Pageant director Raine Arndt said Merrill's talent was performing a "lyrical monologue," which she signed, about her experience as a deaf person.

Arndt said the judges were looking for a contestant with "that special something they feel would make her stand out on the national stage and be a great role model."

She said that Merrill made a big impression on the judges.

"On a personal level, I think she just blows you away when you meet her," Arndt said. "Her approach is not to be afraid, and I think she has a great way of showing people that there really is no difference."

As the winner of Miss Hawaii's Outstanding Teen, Merrill receives a $1,000 cash scholarship to the school of her choice. She also is offered a scholarship to Chaminade University worth more than $30,000, if she chooses to attend that school.

Merrill also won the title of "Miss Congeniality," for which she received a $250 cash scholarship.

She will now spend the next two months preparing for the national competition, which will be held between Aug. 24 and 28.

Arndt said there has never before been a contestant who was either deaf or hearing impaired that won a state crown and advanced to the national Outstanding Teen pageant, which she described as "sort of the Miss America of the teen world."

People who are profoundly deaf, like Merrill, have no hearing at all, while the hearing-impaired can hear some sounds, often with the help of a cochlear implant.

Merrill said she was inspired by Heather Whitestone McCallum, a hearing-impaired woman who was crowned Miss America in 1994.

"She was a role model for me," she said.

She said she plans to enter more pageants in the future, including the Miss Hawaii pageant when she is old enough.

Carmen said his daughter has already begun her community involvement as part of her year of service, visiting Pomaikai Elementary School last week to share her experience with the younger children.

"They were just starry-eyed," he said.

Parents in Nigeria given gifts to have their children immunized

From This Day in Nigeria:

BAUCHI, Nigeria -- For allowing their children under five years to be immunised against poliomyelitis and other child killer diseases, parents in Alkaleri Local Government council of Bauchi State got gift items, including detergents, soaps and other household items.

The items which are called ‘pluses’ were distributed as incentives during the implementation of immunisation plus days as well as the on-going 2010 Maternal and New Born Child Health Week/June Immunisation plus Days as monitored in Alkaleri West and East last weekend.

House to house and fixed vaccinators as well as their supervisors went round with detergents as well as soaps which they gave to parents who complied with the exercise.

The Disease Surveillance and Notification Officer (DSNO) of the council, Likita Abubakar, who conducted our correspondent round, said the gesture has bolstered compliance, adding that "before non compliance was high especially in Alkaleri town but with such measures and the intervention of the Emir of Dass, Usman Bilyaminu Othman, who is the chairman of the state mobilisation committee, compliance is now 100%.’’

Our correspondent observed that Oral Polio Vaccines, Measles, DPT, TT, Hepatitis B and Yellow Fever vaccines were being administered apart from other medicines which included de-worming tablets and supplements, to the children while officials of the National Population Commission accompanied the vaccinators to issue birth certificates to the children who were not registered before.

Illinois website rates how businesses accommodate people with disabilities

From the Chicago Sun-Times:

Few restaurants or retail businesses can afford to shy away from nearly 20 percent of their potential customers, particularly in this economy. Yet consumers with physical or developmental disabilities -- who spend an estimated $175 billion a year -- aren't always served with respect or understanding.

"A lot of businesses don't look at people with disabilities as a marketplace," said JJ Hanley, founder of jjslist, a website that rates how local businesses accommodate what is the fastest-growing minority in the country. "There is true value in making their workplaces flexible and respectful of people with disabilities."

Since going live in March 2009, jjslist has published more than 1,000 reviews of 750 local businesses across more than 50 Chicago-area communities. Businesses rated by the site vary from the Joliet Wal-Mart to Homer's Ice Cream in Wilmette. Reviews are almost always written by people with disabilities and/or their family members and companions.

A volunteer-driven organization, jjslist is funded by donors with additional assistance from Hanley's savings account. A former securities trader and veteran documentary producer for Chicago-based Kartemquin Films, Hanley, 50, has a teenage son with autism. The idea for the site came while producing the award-winning film ''Refrigerator Mothers,'' which profiled mothers in the '50s and '60s unfairly blamed for their children's developmental disorders.

While the original plan for jjslist involved professionally produced content, Hanley believes its current user-generated platform (like Yelp) is superior because businesses can communicate directly with their constituents. Pace suburban bus, for instance, is incorporating conversations with customers on jjslist within its overall marketing campaign to reach out to people with disabilities.

Hanley hopes to raise enough money in the coming years to take the service national.

"There is so much for neighborhood businesses to learn about people with disabilities," she said. "By doing so, there is almost nothing to be lost and everything to be gained."

Donations of durable wheelchairs are helping Haitians with disabilities get around

From Partners in Health:

Like many women living in rural Haiti, Lelan (pictured) spends her days taking care of her family—cooking, cleaning, and tending to her children. But for her, having suffered paralysis after contracting spinal tuberculosis, each chore is infinitely more difficult. She cannot walk. Instead, she lies on her back and drags her body across the dirt floor of her family’s small hut. When it rains, the palm frond roof leaks, turning the floor into swirls of mud around her. As she only has the strength to move herself no further than about 20 feet at a time, she’s literally cut off from her community.

But this changed last month, as Lelan settled into a brand new RoughRider wheelchair, provided by a collaboration between Zanmi Lasante—PIH’s sister organization in Haiti, the Walkabout Foundation, and Whirlwind Wheelchair International. The partnership recently distributed 350 RoughRider wheelchairs throughout Haiti, bringing unprecedented mobility to patients injured in January’s earthquake, as well as many patients like Lelan, who has been living with her disabilities—and the stigma and abandonment associated with them—for years.

With knobby mountain bike tires and a sturdy, specially designed steel frame, Whirlwind’s RoughRider wheelchairs enable its occupants to go where conventional wheelchairs cannot, wheeling over broken pavement, rocks, roots, mud, and ramp-less curbs that are common throughout Haiti and other developing countries. In fact, the non-profit organization designed the vehicles in collaboration with wheelchair riders in over 20 developing nations.

The resulting design is a winner, at least for Lelan. “When we first rolled the new RoughRider into her yard, she began clapping and said, ‘Thank you, thank you, now I can go to church,’” recounts Whirlwind’s Rachel Kishton. “She took to her chair quickly and was downright fearless while rolling around her patio. She quickly started figuring out how to move into and around her house.”

Nearby, 12-year-old Vladimir, who suffered a spinal cord injury when the ceiling of his bedroom caved in on him during the earthquake, also tried out his new wheels; as did the village’s local hero, a basketball player who had been paralyzed by injuries sustained during the quake; and Jiler, a middle-aged man who was most likely crippled as a baby by a case of polio.

The wheelchair distribution built on the efforts of ZL’s newly trained Haitian rehab accompagnateurs—community health workers—who identified wheelchair candidates in advance of the team’s arrival. These new accompagnateurs, some of whom are themselves living with disabilities, will be following up with patients to help them get the most out of their new mobility and independence. This includes making sure that each patient, or someone close by, knows how to adjust the wheelchairs and keep up with general maintenance. They are also working to fight stigma and spread awareness of disability issues in the patients’ communities.

The distribution itself offered a good opportunity to begin spreading awareness. While fitting a chair for Paulin, a young girl suffering from cerebral palsy, she and the team decided to conduct the fitting in a public space so that her neighbors could watch and ask questions. “This was great for community awareness and the disability awareness movement—one of the focuses of PIH’s community outreach rehab program,” said Rachel. It wasn’t long before a group of local children had gathered around them. “They seemed very excited for her, and for her new chair,” said Rachel. “But, not nearly as excited as Paulin who was enjoying her first bumpy ride on the road!”

More from Arnieville as protest of budget cuts of California disability services continues

DREDF has posted a video of the Arnieville protest here.

More photos from Arnieville can be accessed here.

Here's a story from The Berkeley Daily Planet:

Arnieville returned to Berkeley on Tuesday, June 22, 2010 with official opening ceremonies at precisely 5 p.m.

Musical entertainment marked the “resurrection” of Arnieville and the renewal of disability activists’ protests against state budget cuts to senior and disability services.

The encampment is named in memory of the Hoovervilles which sprang up in the Great Depression.

The protesters returned to the same site at the intersection of Adeline Street and Russell, which they had used in May, for the location of their tent city.

Their flyer urges people to “End the fear and Harassment!”

It explains their complaint: “California’s yearly budget cycles threaten seniors and people with disabilities with homelessness and institutionalization. They threaten our caregivers with joblessness. Fingerprinting and unannounced visits harass us in our homes. Republicans block fair taxes on oil and other corporations.

It adds: “Governor Arnie proposes to slash essential programs including In-Home Supportive Services (IHSS), MediCal, CalWORKS, Adult Day Health Care (ADHC), Mental Health Rehabilitiation and many others. He wants to expand forced mental health treatment, and fingerprint and photograph elderly and disabled people who use IHSS.

The group urges “Tell Arnie: NO WAY! Tax oil and other corporations! End the 2/3 rule for budget and taxes!”

A contingent of protesters went from Arnieville to the Berkeley City Council evening meeting later that day. They were expecting the City Council to approve a motion to send a letter to the Governor objecting to the budget cuts.

A press conference to bring more media attention to the group's complaints is took place at the Arnieville location on Thursday, June 24, 2010 at noon.

According to their press release, organizers demand protection for California’s In-Home Supportive Services (IHSS), Medi-Cal, and other programs. They also deplore the Governor's plan to fingerprint, photograph and force unannounced home visits on elderly and disabled recipients of IHSS. “We have a right to privacy in our homes,” said Jean Stewart, 62. “This brands us as criminals without arrest or trial.”

According to the organizers, “IHSS is a model program, saving the state hundreds of millions of dollars per year by maintaining disabled individuals in their homes. At $55,000 per person per year, nursing homes are five times more expensive than IHSS. At present, 385,074 IHSS caregivers provide services to 490,000 disabled and elderly Californians. The Governor’s budget proposes to eliminate up to 40% of IHSS funding. Cuts of this magnitude, and simultaneous cuts to Medi-Cal, would erase decades of progress and incur a huge economic, social, and moral cost. Thousands of Californian seniors and people with disabilities could end up in nursing homes. This is a violation of Olmstead, the Supreme Court decision holding that unnecessary segregation of individuals with disabilities in institutions constitutes discrimination on the basis of disability — the protest begins on the 11th anniversary of Olmstead.”

“These programs are life-and-death matters and we live in a state of fear and anxiety,” says Dan McMullan, an ArnieVille organizer and director of the Disabled People Outside Project. “For years now, we’ve been assailed by a Governor intent on making the rich richer, while we get thrown under the Hummer. This year we’ve come together to resist.”

Florida film camp for children with autism readies them to take on Hollywood

From The Times-Union in Jacksonville, Fla. In the picture, Keaton Bicknell, 13, of St. Augustine, Fla., mans the clap slate during the filming of an elevator scene at the HEAL Film Camp.

"Let's move it," Joey Travolta tells the crew before actress Dani Moore hits her cue at an elevator in the University of North Florida's student center ballroom.

"Hi, Mom, how are you doing?" she says on a cell phone before stepping in. "I'll be there in an hour."

The 11-year-old Ponte Vedra Beach girl met the scarred operator inside, and the "Elevator of Time" snared another victim. That's OK. The evil operator is 13-year-old Daniel Allison of St. Augustine in makeup for the film.

Travolta, a brother of actor John Travolta, is leading the third annual HEAL Foundation film camp for children with autism.

"I love it," said Travolta, a former special education teacher. "I didn't go looking to get back into it. It kind of found me."

Dani and Daniel love being part of a real movie with Hollywood pros helping children with autism learn the ins and outs of Tinseltown.

"I like to be in front of the camera, and I am a drama queen," Dani said.

"I picked this part," Daniel said. "When they said 'elevator operator,' it came to me about being an evil operator. ... I'm a little evil sometimes."

Travolta is a longtime television and film producer, director and writer. The idea for the camp began when he sponsored a film festival seven years ago and a student sought help for a film on autism. That 10-minute film was expanded into a 2006 documentary, "Normal People Scare Me."

That led to his programs for adults with disabilities and film camps for autistic children five years ago. Now some "very creative" children with autism get help with their confidence, plus communication and cooperation skills, Travolta said.

"We take them through all the steps of filmmaking from writing and editing to using the camera. They do it all," he said. "It is not just a camp. It is like a pre-vocation and social skills program, too."

The two-week camp kicked off Monday with 50 Duval and St. Johns County children ages 10 to 17. Thirty have autism, the rest are siblings and friends joining in to produce three films to be assembled into a movie called "Friday Night After the Movies."

On June 25 scenes for "Elevator of Time" were shot with characters like "Vinnie" - T.R. Mack.

"I am learning how to act, write a film, do a script and pretty much a lot of things," the 14-year-old Mandarin teen said. "It's helping me do what I truly like to do."

Hester Wagner, who teaches at Travolta's Actors for Autism school in California, enjoyed her makeup duties, too.

"Working with these students, I have learned there are no limits to anything," Wagner said. "As far as teaching, I get mostly learning from them."

Friday's film production wasn't flawless - the elevator door opened once to reveal a UNF employee.

"You just killed my shot," joked film instructor Dale Oprandy, adding as the door closed that "We sent him where Jimmy Hoffa is."

Hollywood actors? Travolta smiled - children are easier.

"I would rather work with them," he said.

Brenda Eatough is glad he is helping her son David, 10.

"It ... gives him the opportunity to have a creative outlet and just be accepted for who he is," said the Orange Park mother. "He's having a great time."

Filmlab Productions and MDI Holdings sponsored the camp with each child nominated by a teacher or therapist. Travolta also is spending time in Florida scouting locations for a film called "Tap the Heat."

Children with Down syndrome in Bahrain missing out on equal education

From The Gulf Daily News in Bahrain:

Bahrain's Down Syndrome children are missing out on the benefits of mainstream education due to failing integration schemes in government schools, claims a top expert.

Efforts to have more children with the disorder join government classrooms have not been effective due to the lack of planning, said Bahrain Down Syndrome Care Centre director Dr Mohammed Al Mannai.

"The idea and actions to integrate students with the disorder started almost nine to 10 years ago," he said.

"But to this day there is no real outcome to be mentioned. The only benefit has been basically children wearing their school uniforms and marked being present at school.

"But besides that there is no integration, no awareness, no lectures about the disorder and some even keep guards at the classroom door believing that students may end up wandering around."

The integration of children with Down syndrome into mainstream classrooms has benefits for both sets of students, said Dr Al Mannai.

Mainstream children will grow up knowing that there is a difference between people in the world and will be aware that some people have special needs, he said.

"Studies have shown that people who advocate human rights have themselves been to schools with integration schemes and understand the need to protect the rights of all," said Dr Al Mannai.

"Meanwhile, the integration of students with the disorder will help them overcome fear or anxiety of mixing with other people in the community.

"Integration also motivates the students to learn from and copy their mainstream peers in aspects such as speech and dialogue."

If the integration process was taken seriously there would have been a detailed plan and if one existed it is a secret no one knows about, said Dr Al Mannai.

A focus on the development of people with special needs started gaining momentum around 30 years ago, he added.

The first thought of solution was creating special schools or centres to cater to their needs.

However, around 20 years into that, it was discovered that there was no beneficial outcome, said Dr Al Mannai.

Ever since, the worldwide trend has been to try the integration model in mainstream education which has had successful results, he said.

"After the Bahrain Down Syndrome Society started calling out for the integration of children with the disorder, the Education Ministry agreed," said Dr Al Mannai.

"However, now the ministry states that the decision was made suddenly without proper planning and they blame the parents and students.

"There are only three to four positions in the ministry to deal with the integration scheme and they definitely need more specialists than that.

"They are making things very complicated and we just want to know if they are going to improve the situation or not.

"Until when will we have to keep speaking out and persuading?"

Dr Al Mannai said that having the current scheme the way it is, was a "better than nothing" situation for the parents.

"However, certain steps need to be taken to fulfil our goal of integrating Down Syndrome youngsters into schools and the society," he said.

There is need for the re-evaluation of the current models, said Dr Al Mannai.

The ministry and the society representing the children need to sit together and think of ways to improve and enhance the model, he added.

"A clear budget for the integration process should also be announced and more specialists should be appointed to work on the issue first hand and implement it effectively in schools.

"Finally, a clear national plan with specific goals needs to be set up so that there are tangible solutions to the problem."

Another problem parents are facing is the lack of kindergartens and nurseries that accept children with the disorder, said Dr Al Mannai.

Some nurseries do accept their enrolment, but charge almost double the amount a mainstream student would pay, he added.

"The ministry says it does not have any authority over the nurseries," said Dr Al Mannai.

"The truth is anyone with an amount of money can open a nursery.

"But what the ministry should do is to refuse the registration of any nursery that cannot accommodate all types of students."

Educational facilities should accept everyone and not discriminate, he said.

If they need to pay more to hire specialised staff it was not the responsibility of the parent to pay the difference, added Dr Al Mannai.

"The Bahrain Down Syndrome Society was the first of its kind in the Arab world and we were the first to have an Arabic language website and create a centre for the needs of the Down Syndrome community," he said.

"But now, unfortunately, all the other countries have exceeded us in their integration model and we need to get back on track."

New study says Medicaid's long-term care services could decimate state budgets

From The Fiscal Times:

A new study claims the costs of Medicaid’s long-term care services could cripple states’ already-fragile budgets.

The Deloitte Center for Health Solutions study, “Medicaid Long-Term Care: The Ticking Time Bomb,” runs through worst and best-case scenarios: the best being that Medicaid costs as a percentage of state budgets will nearly double by 2030, from the current 20 percent to 35 percent in some states. The worst? These costs will nearly triple, rising to 50 percent of the operating budget in one state — with long-term care accounting for 25 percent of that. “Obviously, this is not sustainable,” write the authors.

Long-term care is particularly cost-prohibitive; services include nursing home care, and treatment for chronic diseases like diabetes, arthritis, cancer and hypertension. 60 percent of Americans suffer from at least one chronic disease; for those over 80 years old, 80 percent have two or more chronic diseases. For the nearly 9 million patients that are eligible for both Medicare and Medicaid services, 98 percent of expenditures are for chronic diseases. Long-term care accounts for 32 percent of total Medicaid spending. “Even with the level of growth in Medicaid, long-term care costs are forecasted to grow even faster,” says Robert Campbell, who serves as the state government leader at Deloitte LLP and who contributed to the study.

With so many states already mired in budget problems, and with unemployment contributing to a 6.5 percent increase in Medicaid enrollment in 2009, it’s no wonder the authors of the study compare the scenario to a ticking time bomb. Their solutions range from making long-term care services more “community focused” to “exploring new public and private financing.” But in the end, solutions remain vague. Separate proposals to curve the state Medicaid conundrum include one that imposes a new tax on hospitals and managed care plans. Some companies, like Walgreens, are simply dropping their Medicaid patients altogether.

New York State has the highest Medicaid spending in the country, with currently 30 percent of the state budget devoted to the program, and the study illustrates the problem all too acutely, predicting a 50 percent increase in the next twenty years. When asked to comment on the report, spokesperson Jeffrey Hammond with the New York State Department of Health said, "The department is reviewing the report. With that said, the department understands that long-term care costs are growing exponentially in Medicaid."

“States shouldn’t wait for the crisis to hit, given how clear it is what’s coming,” says Campbell. The authors of the study conclude, “[This] is one of the most urgent health care problems for most states. Failure to innovate with medical and administrative management initiatives will likely result in increasing costs, voter discontent, poor quality and fiscal challenges.”

Man with Down syndrome readies for university career at College of New Jersey

From The Daily Record:

MORRIS TOWNSHIP, NJ — Benjamin Dorne (pictured) hasn't started college yet, but he's already worried about four years from now when he graduates and leaves all the friends he expects to make.

Dorne has seen his two brothers go off to college and it never occurred to him that he wouldn't attend as well. He isn't worried about living on his own, instead he's anxious that he'll be sad to leave college when he's done.

Dorne, 21, who has Down syndrome, will attend The College of New Jersey this fall, a member of the fifth incoming class of the college's Career & Community Studies, a four-year certificate program for adults with intellectual disabilities.

"My goal is to challenge myself and to be like my brothers,'' said Dorne, who was wearing the TCNJ t-shirt he received with his acceptance letter. "I want to get a job and get married.''

Dorne and classmate Patti Lillman, 21, of Byram, are two graduates of the Chatham-based ECLC of New Jersey, a private school for children with disabilities, who will attend TCNJ's program this fall.

The only program of its kind in the state, the CCS program mixes a liberal arts education with training for employment and independent life skills. Each semester, Dorne and Lillman will take one typical TCNJ college course along with three designed for CCS students. Over the four years they will do internships on and off campus tailored to their career interests.

Helping them along the way will be not only professors, but other typical TCNJ student mentors who will live them and attend classes with them. The CCS students will be living in off-campus housing learning how to live independently without their parents.

"I'm a little bit nervous, scared and excited all together,'' said Lillman, who also has developmental delays. "I never thought I would be going away to college.''

Lillman said she's interested in learning about history and literature, subjects she didn't get to learn much about in high school, she said. She also wants to continue refining her watercolor and acrylic painting skills.

"Not every student wants to go to college and not every college student graduates,'' said Rebecca Daley, director of the CCS program. "But we think it's only right that there is that option. We don't want to make the assumption that these students won't want that opportunity past K-12.''

The TCNJ program graduated its first class this May. The program accepted its first six students in September 2006 with seed money from Steve and Laura Riggio, of Bernardsville. Steve Riggio is vice chairman of Barnes & Noble Inc. He and his wife funded the CCS venture in memory of their late daughter, Melissa, who had Down syndrome.

Of the six graduates, four have jobs lined up ranging from being a designer for Michael's crafts stores to working for a food service provider, Daley said. This fall, the program will welcome its largest incoming class of 10 students, for a total of 30 students in the program.

Dorne's mother, Leslie Skurla, said that when her middle son was born and she received his diagnosis she had hopes that one day he would attend college. Skurla said her family never treated him differently and never put a limit on what he could do.

"To think a generation before him, people were institutionalized,'' Skurla said. "This is a culmination of 21 years of education and therapies and everything he's done. I am so thrilled he has this opportunity ... By not setting limits he's surprised us all in what he can do.''

It's a significant commitment that they are taking seriously, at $10,000 a semester in addition to paying for off-campus housing and food, Skurla said. Despite being worried about her son, she also believes that he can handle it. He communicates well, reads and knows how to ask for help, she said.

His teacher at ECLC agreed.

"He tries his best when asked to do anything,'' said Gail Frey, who taught him in the ECLC graduate program this year. "He has strong liberal arts skills, he's a good writer and he's able to speak up for himself. He'll definitely be able to communicate his thoughts and feelings.''

For Daley, Dorne was a good match for the program because he wants to attend college.

"He was motivated and he could articulate why he wanted to be in college,'' Daley said.

An avid New York Jets and Los Angeles Lakers fan, Dorne loves to play basketball
and said he hopes to be involved with sports on campus. He also looks forward to making new friends and learning to live on his own, he said. He wants to continue some of the art and music skills he was learning at ECLC -- he practices singing pop and hip hop songs daily, as well as how to cook for himself.

He's been practicing to set his alarm every morning to get ready for class on time and to do his own laundry, his mother said.

Dorne said his motto is "Get it done.''

"I'm going to keep studying hard and keep up my good work in sports,'' Dorne said.

Skurla said she's seen her two other sons off to college: Max, 22, who graduated from Cornell University, and Harry, 19, a sophomore at Stevens Institute of Technology, and knew they could take care of themselves. With Benjamin, she knows there are going to be a lot of anxious moments, but he needs to be out from under her supervision so he can put his skills into practice in the real world, she said.

"You're going to call mom every night, right?'' Skurla asked her son.

"Yes, mom, that depends if I'm busy,'' he answered.

Mental illness rising in Lango region of Uganda

From New Vision in Uganda:

Mental illness has gone up in Lango sub-region, a health expert has said. Bonney Ocen, a clinical officer in charge of Lira mental unit, said they receive 150 mental patients in a week although few are considered serious.

He said the highest cases include mood and anxiety disorders, epilepsy and a few cases of alcohol and drug misuse.

Other patients have excessive happiness, post-traumatic stress disorder and obsession compulsions.

The mental unit, built in 2009, serves Amolatar, Lira, Apac, Oyam, Dokolo, Oyam and Alebtong districts.

It has a capacity of 40 beds but Ocen said only eight patients with serious cases were admitted at the unit.
“Those who are not very sick are treated from home.”

He cited HIV/AIDS, malaria, war, accidents, stress, alcohol and drugs as some of the main causes for mental illness.

Britain's first MP with CP asks that schools for disabled children not be closed

From The Independent in the UK:

Britain's first MP with cerebral palsy has made an impassioned plea to the Government not to close special schools in its overhaul of the education system.

Paul Maynard (pictured), the Conservative MP for Blackpool North and Cleveleys, said he hopes to inspire other people with disabilities to pursue a career in politics.

Mr Maynard believes he is the first MP to spend time in a special school, where he received speech therapy for two years and physiotherapy to help him walk.

In an interview with The Independent, he said he had faced ignorance about his condition from a young age, but had been determined to rise above the taunts. "There will always be people who will use it against you and you have to learn to deal with that," he said.

Mr Maynard, who transferred to mainstream education at the age of five and went on to obtain a first-class degree from Oxford University, said his life had been transformed by his early experience of special schools, and urged the Government to "stick up" for them.

"Because my problem was with the thighs, and their muscle development, they would strap you into tight iron callipers for several hours a day," he said.

"You had nothing to do, so I was doing all my numbers and all my reading far, far earlier than most children and very quickly learned to read and write, which was an unexpected bonus later on."

He had been dismayed by the drive over two decades to integrate children with special needs into mainstream education, and urged ministers to prevent more special schools closing.

"In the early 1980s, when I was at school, there was a flexible approach. I wish we had that flexibility now, and don't say that special schools are bad and somehow stigmatise," he said.

"They can be wrong for people, but they are not wrong for everyone just because they separate you. Sometimes that what's needed."

Mr Maynard, who also suffers from epilepsy, worked as a management consultant before gaining a job in Conservative Central Office. It was there that he decided to aim for a political career.

"I saw all around me other people being ambitious and I thought: 'Why shouldn't I push myself forward? If I think I can offer something, why shouldn't I try it?'"

Mr Maynard said he felt his condition had not been a serious issue as he broke into politics – until a few weeks before election day.

After a television interview he faced derogatory comments – including the accusation that he was drunk – on a Blackpool website. As local papers picked up the story, he was forced to explain his disability, emphasising that it did not affect his intellectual ability.

He said the comments were "not that wounding", but the row demonstrated that "the bar is always that bit higher" for disabled people entering public life.

The controversy appears not to have affected his result, with Mr Maynard achieving a 7 per cent swing to capture the seat from Labour, with a majority of 2,150.

He insisted he did not want to be a role model. "I just hope that simply by my being here, in the House of Commons, people who may be nervous about getting into politics are not put off by any fear of what might happen during the campaign."

Mr Maynard, 34, has already delivered his maiden speech and made his first intervention at Prime Minister's Question Time.

He said he had set himself a simple test of whether he had helped to tackle prejudice: "I hope I can tackle it by not being remembered as the MP who had cerebral palsy, but being remembered for something utterly unconnected to that, some other contribution to public life."

Like other new MPs, he found the lack of an office a challenge – he was finally allocated one last week.

"I have found it really, really tiring staggering around with boxes of this, that and the other and piles of mail and nowhere to put it."

Only one problem linked to his condition has arisen – when the Tory whips issued him with a BlackBerry: its keyboard is too small for him to use.

Deaf man taken into custody in Toronto for assaulting police

From The Toronto Sun:

Deaf restaurant kitchen worker Emomotimi Azorbo (pictured) was granted bail June 26 after being charged the previous day with assaulting Toronto Police at a downtown G20 protest.

Friends claim he was not a demonstrator.

Azorbo, 30, stumbled into several bicycles after getting into a shoving match with officers at a bicycle barrier set up to stop the progress of yelling, screaming marchers.

He was taken into custody at College and Yonge Sts. for refusing to obey police orders to leave the street.

Outside a Finch Ave. courthouse, members of two leading organizations for the hearing impaired said they are protesting against police for not providing proper interpretive services during and after the arrest.

"He was in the wrong place at the wrong time," Gary Malkowski, advisor to the president of the Canadian Hearing Society, said in an interview.

"Police did not give him the charges properly," he said. "Police violated their own policy and made a no ha attempt to get him interpretation."

Malkowski said Azorbo was crossing the intersection to buy a bottle of water at a variety store and could not understand police orders.

He is charged with three counts of assaulting police plus resisting arrest.

A justice of the peace granted Azorbo's release after his mother, Sophie, offered to post a non-deposit bail of $1,000.

Her són, who is to return to court Aug. 23, was ordered to stay out of an area bordered south to Lake Ontario from Bloor St. and east of Spadina Ave. to Jarvis St, which includes the G20 venue, until Monday. The Summit ends Sunday.

Azorbo was also told he must produce identification when police ask.

California's Archi's Acres aid veterans in gaining skills in organic agriculture

From The Union-Tribune in San Diego:

A cool mist cloaked the ocher hills near Camp Pendleton on harvest morning. The rising sun burned behind the cypress trees, and two former Marines headed to the greenhouses.

Colin Archipley, the owner of Archi’s Acres, a small organic farm in Valley Center, and Cory Pollard (pictured), one of the veterans he trains in sustainable agriculture, walked through the dappled light of the avocado orchard. Their boots crunched leaves along the dirt path.

Both men left the military after serving three combat tours in Iraq with infantry units from Camp Pendleton. On the battlefield, they were responsible for the lives of their men in arms.

Now, still in their 20s, they have a new mission at this hilltop farm. They and other veterans — some in their golden years — have found a peaceful place to cultivate a fresh start in life or rekindle the camaraderie they still missed decades after leaving the service.

“Veterans are the most underused resource. In the military, we have great leaders, a great work ethic. It doesn’t make sense to me that the failure rate is so high after they leave the service,” Archipley said. This was the seed that germinated into the Veterans Sustainable Agriculture Training program, which Archipley and his wife, Karen, started in 2007.

The Archipleys use their farm to train former service members in organic agriculture, grove management and hydroponic techniques that are energy- and water-efficient. The San Diego VA Healthcare System refers veterans with physical or mental injuries to them and covers some of the employment-training costs through the agency’s Compensated Work Therapy programs.

Last year’s unemployment rate for Iraq and Afghanistan war veterans was 21.1 percent, the U.S. Department of Labor reported, well above the 16.6 percent for their civilian peers.

Joblessness among veterans has many causes, including the post-traumatic stress disorder suffered by as many as one in five of today’s generation of combat veterans. Another factor is the persistent stigma in some quarters against hiring troops returning from the war zone, workplace experts have found.

In addition, Colin Archipley said, “for veterans who deployed to Iraq and Afghanistan, it is hard to find employment that is meaningful to them. They had been part of a team, but in the civilian economic sector, the focus is making money. They don’t have that sense of a greater mission.”

Pollard didn’t say much when he joined the program a year ago. After serving during the 2003 invasion of Baghdad, Pollard returned to Iraq for combat duty in Fallujah and Ramadi. Then Pollard decided he had enough.

“The hardest part was dealing with everything at once. Trying to survive, worrying about family, worrying about bills,” he said.

Inside the humid confines of one greenhouse, Pollard hunted for the bushiest basil ready for market. He leaned over the racks of plastic pipes, where a thin film of water enriched with a slurry of bat guano and sea kelp nourishes plant roots.

“Too skinny,” he said, passing over one spindly specimen.

Then he tugged with one gloved hand on another plant, trying not to snap its stem, and gently placed a bunch of aromatic basil onto a plastic tray for bagging.

Pollard lives next door on land the Archipleys lease. Nights on the hilltop are quiet, and the days are punctuated by little more than the eerie keening of a peacock, the trickle of water through the hydroponic system and the whinnying of horses. Occasionally, the muted thump of helicopters or artillery training at Camp Pendleton provides a reminder of the war zone.

The training program has helped him adjust after his Iraq experiences, Pollard said. “It’s low-stress, a relaxing environment. Just the opposite of combat.”

Rod Krause, a disabled 60-year-old former Navy medic, had not worked in five years before he found Archi’s Acres.

“Nature is a healing thing; that’s a centuries-old idea,” he said.

It would be easier to hire experienced farmhands, but that would be missing the point, said Karen Archipley.

“My husband led a troop in Iraq. He came back here to create another troop,” she said. “That’s where they can get into trouble is in civilian life — not having their support system, not having people who truly understand or have been through the same experiences that they have.”

When 70-year-old retired Marine Col. Len Hayes heard about the program, he did a little reconnaissance. Hayes, executive director of Oceanside’s 1st Marine Division Association, visited the farm and found it to be a wonderful opportunity for veterans to decompress in a bucolic setting.

“When I came back from Vietnam, I was self-medicating with alcohol. If there had been a place like this where I could have gone, I probably would have had a lot less anger in my 20s and 30s than I did,” Hayes said.

The Department of Veterans Affairs in San Diego has 25 other veterans in Compensated Work Therapy programs, all striving to gain long-term employment skills.

“Work is therapeutic. It helps people value themselves,” said Dr. Robert Smith, chief of staff for the San Diego VA Healthcare System. “Our society typically expects that people work and be productive. If people have been out of the work force for a long time, it can be very devaluing to them, to their psyche and how they think of themselves.”

Despite widespread acclaim for the services at Archi’s Acres, it nearly became a casualty of its own success in February.

Local VA officials were paying some of the veterans’ wages through a pilot partnership. When they sought more funding to accommodate a waiting list of veterans interested in the program, a VA official in another state complained that the work therapy funds were being used improperly.

Eight veterans undergoing training at Archi’s Acres, including some who had been homeless, suddenly became jobless. Pollard pawned his laptop to buy food.

Rep. Bob Filner, D-Chula Vista, chairman of the House Veterans Affairs Committee, opened an inquiry. A host of other prominent supporters from San Diego County lined up endorsements. The Archipleys spent $80,000 on the veterans’ wages and hustled for grants with the Annenberg and Issa foundations, they said.

But ultimately, efforts to restore the VA funding were unsuccessful.

The experience inspired the Archipleys to make their program self-sustaining. Under a contract signed last week, the VA will continue to refer veterans to their farm. But the wages will be paid through private grants — after the Archipleys finish their application for nonprofit status.

This fall, Archi’s Acres will host an agriculture class from MiraCosta College that is free to veterans. Eventually, the Archipleys hope to seed a larger crop of trainees, using their three remaining veterans as managers.

Robert Cogill, 67, paused amid his work one afternoon at Archi’s Acres, where he was using a small tool to drop Swiss chard seeds into vermiculite.

“Plants have the ultimate desire to live. No matter how gone or dead they look, you can bring them back,” he said. “It’s the same with people. We can learn a lot from plants.”