Parents rally against closure of special ed center in southern California

From the San Fernando Valley Sun:

At the age of three, Natalie Ceja barely spoke 35 words.

It wasn't the first time her mother, Lupe Ramirez of Sylmar, (pictured) struggled with a child. Her five-year-old daughter Maria Luisa has Down Syndrome and she knew how important it was to get the appropriate help for her children.

And looking at the progress her older child had made at West Valley Special Education Center in Van Nuys, Ramirez sought to place her younger daughter there. It wasn't easy.

"They (school district) refused to give me information about the school, even though I already had a child there. They didn't even want to put me on the waiting list," said Ramirez. "They wanted to put her in the school of their choice."

This, apparently, because the Los Angeles Unified School District is considering closing the Center at the end of the school year. All 144 students, 60-70% of which are children of special needs, would be transferred to other similar schools.

Parents vehemently oppose this idea, citing the security and expertise the school has displayed for nearly four decades. On Monday night, hundreds of parents packed the school's auditorium, even spilling outside where a screen was placed so the parents could follow the actions inside. Ramirez also said the change would be difficult and damaging to her children.

"It is very difficult for them (children with special needs) to adapt to something new. I'm afraid they will lose all of their progress. It's starting anew", she said Monday night during a meeting at the school packed with angry parents and attended by LAUSD officials, including superintendent Ramon Cortines.

"In one month, she (Natali) is speaking 60 words. They have really good specialists here in the school," said Ramirez. Those are the same arguments of Carolee Nickel, mother of 9-year-old Kaylee, who also has Down Syndrome.

In a tearful plea before Cortines, Nickel said she had not chosen the center for being the closest school to her home, but "because it offers the best education possible".

She also charged that parents had not been made aware of decisions regarding the future of the school and that if the closure of the school is a result of budget problems at the LAUSD "let them start [the cuts] downtown and not at this wonderful school site".

According to Jean Brown,District 1 superintendent, the possible closure of the school is a result of the drop in the number of students there.

However, she emphasized that there are five other special education centers in District 1 and one in district 2. At least three of them are in nearby Encino and Reseda.

"It is not the intent of this district to close special education centers.

We recognize the need for special education center.We're simply concerned with the drop in attendance at the school," she said.

However, parents and teachers contend that the drop in attendance is a result of LAUSD tactics over the past year.

"They (LAUSD)manipulated our numbers by telling parents there were no openings. They didn't even offer the school to the parents, but they're sending students to other special education centers", said Hector Martinez, who teachers students with Down Syndrome and autism from kinder to third grade.

"We have not been allowed to open new classes, while other schools can," he said. "All we want is a fair chance like other schools.

I'm very frustrated that our parents were being lied to and we're not taking it lying down," said Martinez.

It's the same argument made by Roberta Mann, lead teacher at the school.

"A school like West Valley can not be duplicated. We ask you to support us and keep our doors open," she pleaded.

Parents Julio and Susana Reina from North Hills also hope the school remains open.

Both of their children, 6-year-old Julio Jr. and three-year-old Joshua, have Down Syndrome, attend the school, which they consider very safe and with the right specialists.

"To me this is unfair. This is a very good school, one of the best," said Julio. "There are no other schools with these amenities. Here, the children don't have to leave the building to go to the cafeteria or from one classroom to another.

They don't have to cross paths or streets. They're not exposed to dangers."

"The people who teach here are experts and the children learn a lot and feel safe. They treat them as normal children", said Susana, who accused the LAUSD of "playing dirty" by keeping the possible closure hidden from the parents until the very end.

Cortines, after hearing passionate speeches from the parents, said he would take the information into consideration when making his final decision.

However, he said "I will not be part of a child being denied access to a school", when referring to the LAUSD's refusal to let parents know about the school when referring them to special education centers.

He said he visited the school recently and saw "happy children", but warned that consolidation of schools is "happening all over the school district" as a result of reduction in state funds.

"It is not about how good a school is. It is about some of the difficult decisions we have to make," said Cortines. "I have listened to the speakers and I will take that into consideration. I think I understand your love for the school."

"This district is no longer able to have many small schools as before", he added.

But parents say the solution to that is simply to offer the school to other parents with special needs children. "Offer the school and enrollment will grow," said parent Steve Rosen.

New documentary, "Examined Life," features disabled artist Sunny Taylor

From The New York Times article about the documentary by filmmaker Astra Taylor, who is the sister of artist Sunny Taylor. NPR did a feature on Sunny Taylor in 2005. I saw an art presentation by Sunny Taylor last summer and her paintings are quite wonderful.

When the documentary filmmaker Astra Taylor speaks of a cinema of ideas, he means it more literally than most. Her first film, “Zizek!” (2005) accompanied the Slovene philosopher Slavoj Zizek on a lecture tour. Her second, “Examined Life,” opening Wednesday at the IFC Center, recruits a wide array of thinkers and theorists to muse out loud about the role of philosophy in our lives, playing off the Socratic observation that “the unexamined life is not worth living.”

After “Zizek!” Ms. Taylor, 29, wanted to tackle philosophy again. The producer Ron Mann, a veteran documentarian himself, encouraged her to make an ensemble movie with an all-star cast of philosophers, a prospect that was both enticing and somewhat alarming. If people found talking-head films uncinematic, what would they make of a
talking-egghead film? . . . .

A few of the philosophers she approached were personal heroes of a sort. She first heard of Peter Singer and his de facto manifesto for the animal rights movement, “Animal Liberation,” as a 12-year-old obsessed with vegetarianism. Having grown up with what she called “an earth-mothery sense of feminism,” she discovered a countervailing voice in Judith Butler, the gender theorist and post-structural feminist. And because her sister Sunaura Taylor, a painter who appears in the
film, was born with arthrogryposis, a disorder of the joints, she took an interest in the work of the law and ethics scholar Martha Nussbaum, who has written about disability in terms of the social contract.

From The NYT review:

“Examined Life” is less a tour of present-day philosophy than a study in academic celebrity. Ms. Taylor has offered each of her subjects the chance to show off a little, and they find different ways of rising to the opportunity of subverting it. Some, like Mr. Zizek, Mr. Hardt and the Princeton ethicist Peter Singer, explicitly comment on their surroundings. Judith Butler, a gender theorist at the University of California, Berkeley, makes the act of taking a walk into an occasion for philosophical inquiry. Accompanied by the filmmaker’s sister Sunaura Taylor, who uses a wheelchair because of a disability, Ms. Butler in effect transposes some of her difficult and subtle ideas about bodies, identity and social space into the language of everyday life.

Double amputee fitted for mermaid tail

From WISN-TV:

AUCKLAND, New Zealand -- A New Zealand double amputee never expected a response when she sent a note to a special effects company asking if they would create a mermaid tail to help her swim. Two years later, her dream came true.

Nadya Vessey, (pictured) who lost both her legs to an illness during her childhood, sent an e-mail to the Weta Workshop prosthetics department.

Weta is best known for their special effects work in the "Lord of the Rings" series, and the 2005 remake of "King Kong."

"We have, over the years, done a number of things like this for people that have disabilities," a member of the Weta prosthetics department said.

Over the next two years, Weta staff members worked on Vessey's tail in their spare time. They covered a tail in a wetsuit fabric and added digitally-printed fish scales on it. The tail has four sections that allow some movement.

"A prosthetic is a prosthetic and your body has to be comfortable with it," Vessey said. "I'm still getting to know it because it requires you to swim in a different sort of a way."

Weta has made mermaid's tails before for the movie "Peter Pan." But they were simpler than Vesey's tail because the costume wearer had movement through the ankles.

The company said they have no plans to make mermaid tails for other amputees, but said the experience and insight they gained on Vessey's tail was well worth it.

Couple with autism tells their love story on "Good Morning America"

From the "Good Morning America" Web site. It's a TV report of a Glamour magazine article. Thanks to Karen for the tip.

David Hamrick, 29, and Lindsey Nebeker, 27, look like a typical couple in love, but what's not apparent is how hard they've worked to be together.

Hamrick and Nebeker live together in a Jackson, Miss., apartment, yet they have separate bedrooms, eat meals apart and spend most of their time focused on their own interests. This unusual setup is how Hamrick and Nebeker, who are both autistic, make their relationship work.

About 1.5 million people in the United States have autism, with varying degrees of severity. Many people with autism struggle with the most basic social interactions, so finding love may seem like an impossibility.

Hamrick and Nebeker are high-functioning but, since childhood, both have found it difficult to make friends and even harder to keep them.

"All of her socialization had to be learned, usually by hard experience," said Nebeker's father, Gordon Nebeker.

Autistic people can also be hypersensitive to touch and sound. Hamrick can't stand when the room is too warm and cringes at certain sounds; Nebeker can't take florescent lights; and both are profoundly uncomfortable with small talk, said Lynn Harris, who profiled the couple for Glamour magazine.

Despite their difficulties, they both kept trying to reach out and connect with others. Nebeker learned to make friends by reading Dale Carnegie's "How to Win Friends and Influence People." Hamrick had tried to untangle the rules of dating by reading self-help books.

"No one teaches you to flirt," said Diane Twactman-Cullen, editor in chief of Autism Spectrum Quarterly. "Individuals with autism would really be at a loss. So there might be some missed signals."

When Hamrick and Nebeker met in 2005 at an autism conference, Hamrick was smitten.

"I pretty much liked everything about her," he said. "She was very sweet, easy to talk to, and a good listener."

But Nebeker was unsure.

"In my early 20s, I had decided I was no longer going to seek a relationship," she said. "I was mainly going to focus on my career and my friends that I had been able to make and keep."

They became friends. Then one day when they were at a café, Hamrick knew he was making progress when he put his hand on hers.

"My heart was racing," Hamrick said. "I was fearful it might not work out the way I had anticipated, but the fact that she didn't pull back and she was able to hold my hand there for at least five minutes, I was very touched by that."

After two years of dating, they took the huge step of moving in together, despite their unique and separate needs.

Nebeker admits that it seems highly unusual for a typical couple to agree to separate bedrooms.

"We both understood the importance of an individual with autism needing their own space," she said.

When they are in their apartment, they are rarely together. Hamrick, a meteorologist, is often in his room on the computer or absorbed in the Weather Channel while Nebeker, a musician, can get lost for hours playing the piano and working on her music.

A romantic dinner for two presents major challenges.

"There are a number of sounds that are unpleasant to me," Hamrick explained. "Such as chewing sounds and crunching sounds."

And Nebeker has many complicated eating rituals. Her napkin has to be placed just so and her meals prepared in just the right way.

"Sometimes Dave will spontaneously ask, 'Hey, you want to go out for dinner tonight?' And I break into sobs and I say, 'I am so sorry, I just can't. I just can't,'" Nebeker said.

The couple's parents have seen their children struggle with their disorder and are in awe of the way the two care for each other and express their love and devotion.

"Being high functioning is almost more difficult than being low functioning," said Gordon Nebeker. "You are so close to there, and yet not quite -- and that is heartbreaking."

But for all the compromises, the couple's love story is actually a pretty traditional one, one of deep understanding and acceptance.

"When I have had a bad day at work or just a bad day for some other reason -- and I come home, I don't even have to say anything, he senses it. Dave will come up to me and start cuddling up to me and that's really all I need," Nebeker said. "I know that I am with a partner who is not going to judge me for certain eccentricities I have."

Liyana, musical group of people with disabilities from Zimbabwe, featured on CNN

From CNN:

NEWARK, New Jersey -- Her powerful voice resonates through the music hall, delivering an unlikely message of hope.

The Afro-fusion melody comes from an unlikely source -- the small, wheelchair-ridden body of Prudence Mabhena, a woman from Zimbabwe who has overcome her physical disabilities and the hurdles of daily life in her home country.

"Some people don't even get you and take you as a person," Mabhena said. "And with us singing right now, we're not giving up -- we're pushing up."

Mabhena is the lead singer of Liyana, a group of eight musicians who are all physically disabled and from Zimbabwe. Their message of hope has been drowned out in their home country, which is suffering from an economic collapse, a cholera outbreak, and a political power struggle that has erupted into violence.

Mabhena was born with arthrogryphosis, a muscle and joint disorder, and had to have parts of her arms and legs amputated as a result. She said her mother was told to kill her rather than have her face life as a physically disabled woman in Zimbabwe.

Zimbabwe was once a center for disability rights after it gained independence in 1980, according to recent report on Public Radio International. It was one of the first countries to recognize the rights of the disabled, who are sometimes shunned by communities in rural Africa who fear they are touched by witchcraft.

But the gains for the disabled in Zimbabwe have been erased by the country's current crisis, according to Dr. Raymond Lang of the London-based Cheshire Center for Conflict Recovery who spoke to PRI's Lonny Shavelson.

Mabhena said the group is apprehensive about returning to Zimbabwe after its U.S. tour, which wrapped up this month.

But none of the members of Liyana dwells on the despair.

"'Never give up' -- it's one of our biggest and strongest mottos," said singer Tapiwa Nyenger, explaining one of the band's song titles. "We have the capability to go on stage and at the end of the day make people smile. It's a good feeling."

All eight band members, who are between the ages of 17 and 23, met at the King George VI school for disabled children in Bulawayo, Zimbabwe. The band describes their music as a fusion between "myriad geographic, cultural, and musical genres including gospel, reggae, and traditional Zimbabwean Shona music."

Liyana means "rain" -- a Shona term for good luck.

"Music makes you think of something positive," Nyenger said. "For me, music is rehabilitation."

Mabhena has said her voice is a gift from god.

They had long dreamed of performing in the United States, and their multi-city tour included more than 20 performances in California and the New York metro area, including the New Jersey Performing Arts Center in Newark.

"We have been received in an overwhelming, heart-filling way," Nyenger said. "Everywhere we go, every place we go, we [see] new things, we meet new people, we learn new stuff."

The band's U.S. tour coincided with President Barack Obama's inauguration, which has also been a source of inspiration for a new song, "Obama."

"When we heard Obama was going to be the American president, the first black American president, we were so excited," Mabhena said. "Through that joy that we had, there came a song."

Liyana is also the subject of a new documentary, iThemba -- My Hope -- which is scheduled to be released worldwide later this year. The band's singers perform in seven languages -- Shona, Ndebele, English, Dutch, German, Hebrew, and Spanish -- allowing them to reach a wider audience.

"We want to leave a message to everyone in the world that no matter what circumstance you are in, you can make it," singer Marvelous Meulo said.

College Living Experience helps students with learning disabilities thrive

From the intro to a feature in U.S. News & World Report:

Before moving away from her Southern California home to become a student at the Community College of Denver, Brittany Ross (pictured) was nervous. She had tried college once before, but her Asperger's syndrome made it difficult for her to connect with her peers and stay focused on her schoolwork. Her grades were "all over the place," Ross says, because she had test anxiety, trouble writing essays, and panic attacks that grew worse with each social and academic misstep.
The difference between Ross's first college experience and her time in Denver is the support she receives from College Living Experience, a private program operating in six cities around the country that helps students with learning disabilities thrive in a college setting. Students enroll concurrently in CLE and a college near one of the program's centers and work with CLE staff not just on their coursework but also on their social skills, their emotional maturity, and their ability to live independently. Though CLE will serve students with any type of learning disability, it is one of only a few programs nationwide that specialize in helping students with autism spectrum disorders and Asperger's syndrome gain access to college.

In the early 1990s, the definition of autism expanded to include a range of milder conditions, and the swaths of children diagnosed then are starting to consider higher education now. While colleges and universities are required by law to offer students with learning disabilities extra time on tests, note-taking services, and other accommodations, the schools are not required to provide support as comprehensive as what some students require. This gap in available support led to CLE. Although its cost is $33,500 per student per year—a sum that only some states will partially subsidize—it's an option that opens doors for some learning-disabled students and their parents.

Stephanie Martin, director of CLE, says the program currently has 187 students enrolled, many of whom pay in full (in some cases, a federal tax deduction is possible) and consider the opportunity to work toward a college degree at a vocational, two-year, or four-year school an investment in their future. The program opened its first center in Fort Lauderdale, Fla., in 2005, recently opened its sixth in Rockville, Md., and plans to continue expanding as demand grows, Martin says. Like Ross, about 30 percent of CLE's students tried college at least once before enrolling in the program. Preliminary results of an ongoing federal Department of Education study show that fewer than half of students with learning disabilities have received postsecondary education and that the proportion of students who complete their degrees is even
smaller.

The transition between high school and college is huge for students with severe learning disabilities like autism, says Tom Welsh, the clinical psychologist for CLE's Denver program. In high school, the goal for these students was merely to pass a class, complete a grade level, or graduate, Welsh says. At the college level, students start to envision what is possible for them as independent adults. "Our understanding of what's possible for us in this world is as narrow as our experiences," Welsh says. "To make a friend or lose a friend, to meet someone researching something you never knew about or to meet a friend training for a career you never knew was possible for you—it opens up a whole new world for these students."

Welsh's job at CLE Denver is to support each of the location's 50 participants in their emotional and psychological development. Some students, he says, can be developmentally up to six years behind their age and need support to complete a semester without failing classes. Because many autistic students struggle with executive functioning—the ability to understand time, maintain a schedule, or plan ahead—the preparation required to take a final exam can seem overwhelming, Welsh says. It is common for students who have worked hard all semester to allow their anxiety to sabotage their effort and suddenly stop attending classes. Programs like CLE, Welsh says, can help students recognize and address the problem before mounting absences and missed assignments mean flunking out.

Queen of England hosts British Paralympians

From the BBC:

Britain's Paralympians have met the Queen on Feb. 25 at a reception in their honour at Buckingham Palace.

The team, who won 42 gold medals in Beijing last year, paraded in London with the Olympic team in October but were assigned their own royal meeting.

Britain's 213-strong squad finished second in the medal table, with 102 medals in all, behind hosts China.

Swimmer Ellie Simmonds (far left in picture) made her second trip to the palace in a week after receiving an MBE on 18 February.

Eighty athletes returned home as Paralympic medallists, 30 with at least one gold to their name, 26 with silver and 39 bronze.

Among the party on Wednesday was swimmer David Roberts, now an 11-time Paralympic champion after his successes in Beijing.

Dressage competitor Lee Pearson, 35, (center in picture) boasts an unbeaten record across three Games, with his three gold medals in Beijing taking the total to nine.

Jane Fonda's new theatre role tackles character with ALS

From the profile of Jane Fonda in The NY Times. The new Moises Kaufman play, "33 Variations," is currently showing at the Eugene O'Neill Theater in NYC.

“33 Variations” is about a woman who is in many ways the complete opposite of Ms. Fonda — someone who has shut down and is out of touch with herself. Ms. Fonda plays a character named Katherine Brandt, a musicologist who is suffering from amyotrophic lateral sclerosis, or Lou Gehrig’s disease, and is determined
before she dies to solve the mystery of Beethoven’s Diabelli Variations: why he spent the last years of his life obsessing over an ever-expanding set of variations on a waltz theme, written by the music publisher Anton Diabelli, that was clunky and banal. Beethoven called it a schusterfleck, or so the story goes — a cobbler’s patch. (Beethoven is a character in the play, along with his assistant, Anton Schindler, but his music is played offstage by Diane Walsh.)

Distant and controlling, Katherine also has a difficult relationship with her daughter, Clara (played by Samantha Mathis), and the eventual thawing of it, Katherine’s opening herself up, proves to be the key to the musical mystery. On the one hand, Katherine fits neatly into the long Fonda tradition, going back to “Cat Ballou” and even “Barbarella,” of women who are tough and self-possessed. But unlike, say, the
seemingly buttoned-up Gloria Beatty, Ms. Fonda’s character in “They Shoot Horses, Don’t They?,” or Bree Daniels, the prostitute turned sleuth in “Klute,” Katherine doesn’t seem to have that Fonda-like inner edginess or hint of stridency. She’s such a perfectionist she has erased even that.

DHS documents show that state looked into Iowa turkey factory's use of developmentally disabled workers in 1970s

From The Gazette in Solon, Iowa. Sen. Tom Harkins, D-Iowa, is planning congressional hearings about the use of developmentally disabled workers at the turkey-processing plant.

DES MOINES -- From DHS spokesman Roger Munns: A file released Feb. 24 by the Iowa Department of Human Services shows state social workers twice previously discussed whether to intervene at an Atalissa facility housing men with mental retardation.

The facility, operated by Henry's Turkey Service and known locally as the "bunkhouse," was closed on Feb. 7 by the state fire marshal for unsafe conditions after 35 years of operation.

The file contains two memos from the 1970s, with one from a worker who said the Atalissa men had virtually no rights.

"Once the resident becomes an employee of Henry's Turkey Service, he for all practical purposes loses most basic human rights," said social worker Ed George in a memo to district manager James Strickland dated Dec. 4, 1974.

But in a report six weeks later, Strickland said, "There seems to be good group spirit and morale, and it would seem to us that a cohesive group exists here." His report said a separate state agency had agreed to be the "project monitor" for checking on the Atalissa men.

It would be eight more years before Iowa adopted a law to protect victims of dependent adult abuse. The law was passed in 1982 and implemented in 1983. The file also has e-mail exchanges between DHS officials in 1997 in which it is concluded that despite concerns, the department did not have jurisdiction to intervene because there was no allegation of abuse of a dependent adult.

At that time, DHS officials were also in contact with officials in Texas, where Henry's Turkey Service is incorporated.The 38-page paper file, discovered about two weeks ago in the DHS Muscatine County office, is not an active file and may not be complete. There are no documents between the 1970s and 1997.

DHS Director Gene Gessow referred to the file in his testimony to legislators last week. The file was given to the Division of Criminal Investigation, but agents returned it on Friday. The file, redacted to exclude client names and other information that is not public, is being released today.

After receiving a call to the abuse after-hours hot line on Feb. 5, the DHS assembled a large team of social workers to evaluate the 21 men living in the bunkhouse and provide basic services for several days.

Three days later the DHS determined that all were dependent. A judge agreed with that assessment on Feb. 10, permitting the DHS to provide protective services. Later that day all were placed at Exceptional Persons, Inc., in Waterloo. Nineteen of them live there today; two have since been returned to care of relatives in Texas.

Gessow said he respected the opinions expressed in the memos but would not point fingers or second-guess decisions.

"I'm not going to debate whether I would have done something differently 35 years ago," he said. "What I will do is pledge that from now forward, the Department of Human Services will be aggressively vigilant to protect the rights of dependent adults.

"I have already shown my determination to improve services at our two facilities for people with mental retardation, and I'm pleased to tell you that we are nearly in compliance with very vigorous standards there.

"We must now turn our attention to vulnerable adults in the community," he said.

The 1974 memo from George, a social worker for an agency known then as the Department of Social Services, said any man assigned to Atalissa "loses control of finances, the location where he lives, the type of work he does, and the type of housing in which he must dwell, as well as with whom. If he dislikes any of these arrangements, his only way out is to return to an institution."

The file does not contain Strickland's response to George, but it does include Strickland's seven-page report to Muscatine County officials dated Jan. 23, 1975, which outlined conditions in Atalissa and concluded there should be continued monitoring.

"The living quarters are not tastefully decorated, in good repair or maintained in high standards," he wrote. "But they are warm, adequate, and maintained by the men themselves."

The memo said that a worker who did not "work out" could be returned to a state institution but "this has happened infrequently. More often, the Texas Rehabilitation Commission has reopened services and the man has re-entered a period of training."

All of the men were once Texas residents.

The file also contains an undated newspaper article entitled "Turkey employee probe refused."

It was written by Jeffrey Kummer, who was a reporter for newspapers in Muscatine and Davenport between the years 1973 and 1977.

Cuts in services in Arizona could affect many disabled children

From AZFamily.com:

PHOENIX -- The budget cuts affecting the Department of Economic Security mean the end of some of their programs.

Programs like Valley mom Shawnie Huff and her three kids suffering from Down syndrome have relied on.

Taking a closer look at the long term affects, you can see the need many have for the DES funding.

A Valley mom knows all too well about Down syndrome and the services needed to give young kids a chance at living a normal life.

That mom sat down to talk about what will happen to the kids when state programs to help them are cut.

Nine months ago, the Huff family from Gilbert traveled to Serbia to bring home a two-year-old boy with Down syndrome.

Huff said she bragged to officials there about the progress Down syndrome children make here in Arizona because of all the services available to them.

Tonight she said she feels like a liar.

“When we brought Max home he was a little rag doll,” she said.

This little rag doll named Max has Down syndrome. The Huff family adopted him from a Serbian orphanage nine months ago.

“In nine months he's walking, he’s got some words, he's doing sign language he's you know feeding himself with a spoon, he's just, he's a whole different kid now.”

His mom attributes Max's progress to the four hours of speech, occupational and physical therapy he receives every week. Its similar to the therapy his brother Tyler received when he was Max's age.

“I want him to live to his full potential I mean I feel like by not having those services its going to be harder to get there, it’s going to be harder to bring that out,” Huff said.
Huff is concerned because the services that proved so vital to Tyler’s developmental success have been cut. That means max misses out.

“I would pay higher taxes to pay for services,” Huff said. “There are so many things I would be willing to do so my kids and kids like my kids can get the services that they need.”

Services that are vital, but no longer available to Max and thousands of other babies like him around Arizona.

Trudi Norman Murch is with Southwest Human Development, the organization that provided Max's therapy.

“I've worked in third world countries where children with these kinds of disabilities were receiving services and I honestly don't believe I'm living in a state or in a time where these kids wouldn't get help or support,” Murch said. “I actually don’t believe it.”

Six million dollars in cuts for disabled children is scheduled to take affect March 1st, but there is hope the state is receiving millions of dollars in stimulus money which advocates say could be used for the program. They say there are alternatives and they will try to make their case on Thursday at 10:30 a.m. at a rally at the State Capital. Anyone is welcome to join the various Valley organizations that provide support for the disabled at Thursday’s rally.

Nebraska mother found guilty of abuse in death of disabled daughter

From WOWT-TV in Omaha:

An Omaha woman was found guilty Feb. 24 of abuse of a vulnerable adult resulting in the death of her daughter.

Prosecutors alleged Cherie Harbour’s wheelchair-bound daughter Tawnisha was intentionally locked inside her bedroom with no way to escape. One door was tied shut with a bed sheet while another was missing the door knob.

When their house caught fire last June 21st, prosecutors say Tawnisha was unable to escape and no one else was home to help her get out.

"The mother unreasonably confined, we felt, Tawnisha, and then left her for eight hours," said Douglas County Attorney Don Kleine.

Tawnisha suffered burns over 30-percent of her body and died nine days later of pneumonia.

"In this case we had a person who was unquestionably a vulnerable adult and we felt was being unreasonably confined and everyone knows what that circumstance led to,” said Kleine.

The fire started inside her bedroom. Although the cause is still unknown, defense attorney Bill Pfeffer believes Tawnisha started it.

"I think she was trying to get attention or trying to cause trouble or she was upset that she was home alone or maybe she was just mad at the world that day. Who knows what was going through her mind? But the mother didn't do that, the mother didn't knowingly and intentionally cause her harm."

Pfeffer claimed Tawnisha had a history of wandering out of the home and this was nothing more than an accident. "It's horrible and it's a tragic accident, but Cherie Harbour didn't cause it and that statute just doesn't seem to fit this case and that's our problem."

The defense also said Tawnisha was able to get out on her own, but did not. "Cherie Harbour loved her daughter, she wasn't punishing her daughter, she wasn't trying to hurt her daughter, she didn't know, nobody knew that a fire was going to start that day," said Pfeffer.

For Harbour to be found guilty, she had to knowingly and intentionally cause harm, which Judge Patricia Lamberty said she did by unreasonable confinement.

The prosecution feels the verdict is justice for Tawnisha. "I think the law is, at its upmost, to protect people that are most vulnerable, whether it's children, vulnerable adults like Tawnisha and certainly the people who are caregivers have a duty and responsibility there and the law provides for that," said Kleine.

Harbour remains out on bond and will be sentenced on May 5th. She faces up to five years in prison. Pfeffer said an appeal will be filed.

Sierra Leone group says marginalization, lack of services continuing problems for disabled people there

From Awareness News:

The President of the Sierra Leone Union for Disability Issues (SLUDI), Kabbah Franklyn Bangura, has raised serious concern over the continued marginalization of persons with disability in communities across the country.

Speaking to Awareness Times over the weekend in a snap interview, the President of SLUDI, Mr. Kabbah Franklyn Bangura, noted that many disabled persons in developing countries such as Sierra Leone continue to experience marginalization and lack of access to public services like health care and education.

In Sierra Leone and Liberia for example, Mr. Kabbah Franklyn Bangura said, international donor agencies have provided substantial assistance to those injured during the war, pointing out that no consideration was given to disabled persons.

Mr. Bangura pointed out that there is an urgent need to develop community based programmes for disabled people in the rural areas, as the existing community programmes have so far failed to address the social and economic inclusion of disabled people.

He went on to state that negative attitude and lack of respect for disabled persons by low minded people in society, create further barriers to their inclusion in matters that concern them as legitimate citizens of the state.

He called on government to ensure that they help in creating a leveling playing ground for disabled people to live comfortable lives.

He also called on the government to pass the Persons with Disability Act, noting that the Act creates facilities for disabled people that will make feel like human beings and part and parcel of the society to which they equally belong.

Mr. Bangura appeal to members of parliament to see the need to help advocate for the enactment of the Act.

Mr. Bangura ended by launching a special appeal for civil society organizations, the media and other like minded organizations to join hands together with them in their struggle to earn the care, respect and dignity they are naturally entitled to

City in Philippines pushes for better disability access

From the Business Mirror in the Philppines. In the picture, Acting Makati City Administrator and Social Welfare Department head Marjorie de Veyra welcomes persons with disabilities (PWDs) at the launching of the Search for “PWD-Friendly Tourist Establishments in Makati” at the city hall quadrangle.

At least 8.3 million Filipinos, or more than 10 percent of the population, are recorded with disabilities, and 70 percent of them live in rural areas where services are often not accessible, according to the World Health Organization Report.

But in the areas where services are accessible and there’s a serious enforcement of regulations to provide the disabled with access and other means to allow them the same mobility as everyone else, a lot of changes have taken place the past several decades.

“Before, people with disability [had to] adjust to the environment but as time goes by, the environment now is the one that must adjust for the society, especially to the people with disability,” recalls Jaime Silva, an architect who lost his sight to glaucoma when he was in his late 30s.

He recalls having a hard time to adjust to his “new world of darkness.” And, when he was still using a wheelchair, he always had difficulty using public toilets in restaurants or even in hotels; reach for the elevator button; or just entering a restaurant without a ramp for the disabled.

His experience with this lack of access infrastructure for the people with disability (PWD) curtailed his practice as an architect. Still, this did not deter him from striving hard to assert his rights to live better and independently despite his disability, eventually founding a computer school for the blind.

Silva then learned how to earn a living, from being a retailer and even doing some farming job, and eventually going back to his original practice. These days, he is a consultant and property manager in a construction- management company.

Learning from experiences in various travels to different countries far advanced in providing easy access, among other services, to PWDs, he decided to reach out to his fellow PWDs to allow more people to enjoy the rights to use all facilities in the country.

In partnership with the Makati Tourism Foundation and the United Architects of the Philippines, they launched on Monday the first-ever “search for the disabled-friendly tourist establishments” in the city.

This event aimed to create an awareness of the special needs of persons with disability and to recognize establishments that comply with relevant national local laws and regulations, particularly Batas Pambansa 344, otherwise known as the accessibility law.

Silva said the country still lacks awareness of the special needs of PWDs; and where facilities have been built, some are not well-suited to PWDs.

“We still have a long way to go. There are places for disabled people, but the law wasn’t interpreted properly. You see ramps that are too steep where a wheelchair or a disabled person could slide, there are parking slots that are too far, or toilets that are too narrow to allow one to easily maneuver a wheelchair,” he elaborated.

Makati Mayor Jejomar Binay said the search is also meant to enhance Makati’s reputation as a “PWD-friendly” city while, at the same time, promoting its bid to be the preferred health-and-wellness destination in the country and in Asia.

“We are pursuing this project because we believe that each one of us deserves to have the equal access and the equal chance to enjoy the privilege of exploring, experiencing, and benefiting from our environment. We believe we share equal opportunities to pursue whatever our hearts desire. Due to physical disabilities, some of our people cannot indulge as freely as others can and because of this, we would like to help them,” Marjorie de Veyra, Makati Social Welfare Development (MSWD) chief and concurrent acting city administrator, said in her speech in a press conference announcing the project launch.

With the theme “Promoting a Nonhandicapping Environment for Persons with Disability,” the search will be open to hotels, malls, restaurants and hospitals with their own buildings. MSWD assistant department head Ryan Barcelo said the criteria in judging participating establishments include their facilities and amenities, particularly the five basic requirements; accessible ramp, accessible washroom and toilet, reserved parking slot near the entrance, signage, and nonskid flooring, all designed for easy access and convenience of the PWD clients.

Silva said the Makati government has allotted a budget of P200,000 for the event, and as the establishments in Makati will adopt a PWD-friendly stance, he hoped other local government would pick up the strategies and provide an environment totally friendly to PWDs in their cities.

Explaining disability to children

From the intro to a feature in the BBC News magazine in the UK after parents complained about a children's TV show host with one hand. ABC News in the USA also has a story about the controversy.

Parents have complained that a children's TV presenter with one hand is prompting awkward questions from young children. So how should you explain this kind of disability to a child?

No-one comes up with wrong-footing questions quite like a young child. And young, curious minds don't hesitate to point out differences in people they see around them.

So when the BBC's children's channel CBeebies employed presenter Cerrie Burnell, (pictured) who was born with only one hand, her appearance on television screens prompted a debate among parents about what they say to their children.

Online message boards on CBeebies and the BBC's disability magazine Ouch! were brimming with support for the employment of a person with a disability, and the way this educated children about diversity.

But a minority of parents expressed concern that Ms Burnell's appearance was "scaring" children. One father said he feared it would give his daughter nightmares and a mother said her two-year-old girl could not watch because she thought the presenter had been hurt.

Ms Burnell, 29, says she doesn't take this personally but these kind of comments highlight the prejudice that disabled people face.

"I would always take the time to explain to a child. All they want is an explanation. They want to know 'What's that?' and 'What's happened?' and 'Why are you different?' And then they will move on."

She hopes that her presence can show young children what they can achieve on merit. But what parents say is up to them.

"I'd never comment on anyone's parenting or the time for them to have a discussion with their child about disabilities.

"It's a totally personal thing and people have to do it when they feel comfortable to do it. But I would just hope that, I guess, me being on CBeebies would present an opportunity for them to do that in the comfort of their own home."

If the child asks questions then they are old enough to understand the answer, she says, and her story is simply that she was born with one hand but it doesn't stop her doing anything.

Bush administration rule allowed nursing homes to hide information that might be crucial in litigation

From The Washington Post. In the picture, Jean Hanson talks about her parents who were allegedly abused in a nursing home in Minnesota. A new rule enacted by the Bush administration has made it harder to get information for such cases.

The Bush administration shut off a source of information last fall about abuse and neglect in long-term care facilities that people suing nursing homes consider crucial to their cases.

The change, which affects the $144 billion nursing-home industry, was enacted with no public notice or attention.

"This is pretty stunning," said Mark Kosieradzki, a plaintiff attorney in Plymouth, Minn. "Nobody was told. It was just done."

The rule designates state inspectors and Medicare and Medicaid contractors as federal employees, a group usually shielded from providing evidence for either side in private litigation.

The restrictions affect about 16,000 nursing facilities and 3 million residents in the United States. The practical effect is to force litigants to go to greater lengths, including seeking court orders, to get inspection reports or depositions for cases they are pursuing or defending.

"This change hurts nursing-home residents and their families by allowing bad practices to be kept in secret by nursing homes and inspectors," said Eric M. Carlson, an attorney with the National Senior Citizens Law Center in Los Angeles. "Government inspectors have the right to go into nursing homes and investigate, and they learn things that residents and families otherwise could never find out."

The new rule, which was issued in September, generally prohibits state health departments and contractors from participating in private lawsuits involving facilities that are in the federal assistance program without approval by the head of the Department of Health and Human Services.

The rule was justified as being necessary to accommodate the hiring of new contractors to make Medicare payments to providers, perform audit and fraud reviews, and do survey, certification and enforcement work for the program.

Requests for these employees to participate in private cases "divert employees from their federal survey, certification and enforcement responsibilities," the Bush administration said in a supporting document. "The cumulative effect of these requests can impede these activities."

The effect of the directives has started to play out in the nation's courtrooms. Requests for information, once fairly routine, now are stalled between state and federal officials.

Anne Marie Regan, an attorney with the Kentucky Equal Justice Center, a nonprofit poverty legal advocacy and research center, said the change has slowed a case she is pursuing on behalf of an 85-year-old man who was evicted from a nursing home in 2007.

Priscilla Shoemaker, legal counsel for the American Health Care Association in Washington, said nursing homes "are in the same boat" because they also have difficulty getting information on how state inspectors determine penalties, citations and orders to shut down homes.