Tuesday, August 31, 2010

Statue erected in Colorado to honor Paralympian skier

From the Snowmass Sun:

Cara Dunne and her seeing-eye dog Haley look as if they are ready to walk over to the Elk Camp Gondola and head up the mountain.

But this bronze likeness of a girl and her dog will forever be frozen in time at one end of the Base Village Plaza.

“Cara is the most amazing individual you would ever meet,” said Houston Cowan, co-founder of Challenge Aspen, who had been her skiing guide since the mid-1990s.

Partially blind from birth with retinal cancer, she had both eyes removed by the time the she was five, but she accomplished much in her short life that ended on October 20, 2004.

In 1984 when she was 12 years old, Cara won two bronze medals and one silver at the winter Paralympics in Innsbruck, Austria, and in 1988, she returned to win two more silver medals, one in the downhill and the other in giant slalom.

She gave up competing for a while in order to attend Harvard University where she graduated magna cum laude in 1992 as class president. This was followed by a law degree from UCLA in 1997.

In 1995, she decided to return to competitive skiing and heard about Houston Cowan, who had been a guide for the B.O.L.D program in Aspen, which was then under the directorship of Peter Maines. At the time, Cowan and Amanda Boxtel were beginning to build Challenge Aspen and Dunne helped to develop their programs for the visually impaired.

“I became her skiing guide and helped her train to be on the U.S. Disabled Ski Team. We immediately became good friends,” he said.

The two trained on the slopes of Snowmass ski area and during the summer at Mount Hood.

“She was the top totally blind skier in America and one of the top in the world,” said Cowan.

Cara Dunne was invited to try out for the 1996 U.S. Paralympic Tandem Cycling Team and competed in the sport at that summer's Paralympics in Atlanta, winning a silver medal in tandem kilo and a bronze medal in the 200 meter sprint.

She not only became the only competitor to have won medals in the summer and winter Paralympics, but she also fell in love and got married to another cyclist.

With a new life and then two children, she gave up the dream to compete in skiing again, but she didn't give up her love of the sport.

Once her youngest daughter was three–and–a–half years old, Dunne brought her back to Snowmass Village and taught her to ski with the help of Cowan.

“I guided her while she snowplowed with Elise between her legs on Fanny Hill. She is probably the only blind mother to teach her child to ski. It was something to see. I cried on many occasions,” he said.

The creation of a statue to honor this incredible person was the idea of her father, Mike Dunne of Boulder, who works in promotions for winter sports including with the U.S. Ski Team.

After her death, he had been reading an article about her in the Boston Globe, which talked about her being “influential in increasing the opportunities for people with disabilities in sports both in this country and internationally,”

“At that moment I conceptualized the statue all in one piece. I felt that Cara was guiding me. I wanted it to be more than a tribute, it was also a way to promote disabled sports and Challenge Aspen. I hope people read her story on the plaques at the base of the statue and get motivated,” he said.

There was never a doubt in his mind where the statue should go. It was to make its home at the base of the ski area that Cara loved and near Challenge Aspen.

Created by sculptor Jerry Snodgrass of Boise, from donations by Cara's friends, family, her graduating class, Related WestPac, Aspen Skiing Co. and many more, it is a tribute from so many who knew her and those who were inspired by her life story.

Some notables who felt the need to give were Lance Armstrong, Vince Gill, Amy Grant and Scott Turow. The list is too long to mention here, but one of the plaques on the base of the 750–pound statue includes all of the donors.

More than five years after Mike Dunne had the inspiration to immortalize his daughter, the statue has arrived in Snowmass Village with only the landscaping to be finished.

It's been a long road for him to bring his initial idea to fruition, and that road has ended near the Elk Camp Gondola.

“Now I will let Cara do the work,” said Mike Dunne.

Houston couple says people with disabilities should live independently so they can direct their own lives

From Houston Public Radio, KUHF, by health, science and technology reporter Carrie Feibel:

Kathleen DeSilva (pictured) and her husband live in a small bungalow in the Heights – and they relish every freedom that comes with it.

“You can’t have pets in a nursing home, and we love to have our dogs. We’ve had dogs for years now.”

DeSilva cannot breathe without a ventilator. She has been paralyzed from the neck down since a high school gymnastics accident 42 years ago. Her husband Peter Simmons broke his neck in a motorcycle crash when he was 28. While many people with disabilities must live in a nursing home, this couple has fought for decades to live on their own terms.

“We did have to renovate the bathroom to make it wheelchair accessible, we had to add ramps front and back. And we built a garage at the back of our house that has apartments in it, and in those apartments is where our caregivers live.”

It helps that DeSilva worked for 22 years as an attorney for Memorial Hermann Hospital. She’s retired now, and the couple budgets carefully so they can pay their three caregivers. Peter Simmons enjoys photography, and he leads the dogs on daily wheelchair walks. Kathleen DeSilva directs the cooking, instructing the caregiver exactly how to prepare and spice the food.

“A big part of independent living is that you direct your own care. And you tell people what to do for you, in the way that you want it done. So that they don’t come in with preconceived notions about how your care should be done.”

Other people with disabilities are less fortunate. The Texas government has identified tens of thousands of people who live in nursing homes — but have expressed a wish to get out. They are waiting for special waivers that would allow them to spend their Medicaid money outside of the nursing home. For example, if they could apply the money to visiting nurses or adaptive equipment, they could live independently.

“I mean, I don’t know anybody who would voluntarily move into a nursing home.”

Lex Frieden directs an independent living research program affiliated with Memorial Hermann.

“The only reason people have to move into nursing homes now, by and large, is that they don’t have access to assistance in the community.”

In 1999, the U.S. Supreme Court weighed in. It ruled that people with disabilities have a right to live in the least restrictive setting possible. State governments scrambled to comply. Texas has at least eight different programs to promote independent living, but it can’t keep up with all the demand.

“I would love to move everyone out of a nursing home if that were feasible.”

That’s Aileen McCormick, the regional CEO for Amerigroup, a managed-care company. Amerigroup has a contract with Texas to – in McCormick’s words — “liberate” patients from nursing homes. Since 2007, Amerigroup has moved almost 400 people out of nursing homes, and prevented close to a thousand people from having to move into one.

“The stories we get from folks who feel like they’ve been given their life back and the beauty for taxpayers in Texas is, it’s a less costly option.”

State officials say they are still gathering data on exactly how much money is saved, per person. It’s difficult because every medical case is unique. But they agree that at-home care is cheaper, on average, than nursing homes.

“It really is true and it works. And so I think there is a real movement that says ‘Hey if this is good for Texans in all of these urban markets, why is it not good for Texans in other markets where we don’t do it yet?’”

This type of program is not yet available statewide. Amerigroup plans to lobby the Texas Legislature for permission to expand into the Rio Grande Valley and elsewhere.

British government report says business could be boosted by better disability access in readying for Paralympics 2012

From BBC News:

Companies could boost business by improving disabled access ahead of the London 2012 Paralympics, a government report has said.

More than one million disabled visitors are expected in London for the games.

The report, commissioned by the Business Department and Office for Disability Issues, found the disabled market is worth up to £80bn a year.

Disabled People Minister Maria Miller called the games an "opportunity to reach out to disabled customers".

The report found disabled customers may account for up to 20% of a firm's customers - but 32% of disabled people have difficulty getting goods and services they want to use.

The report claimed this meant small companies could be losing one in five of their customers.

Surf lessons open new vistas for disabled kids

From The AP:

LONG BEACH, N.Y. — The lesson begins on the beach with a youngster lying on a surfboard more than twice her size. After some brief orientation, the child, joined by a world-class surfing coach, is soon paddling about 30 yards into the ocean.

As a modest 2-foot wave appears, the coach and his student begin paddling furiously toward shore. In an instant, the coach eases away from the board and implores his charge to "pop up," and stand on the board. A shriek explodes from excited parents on the beach who scream with glee as the newcomer stands and rides her first wave to shore.

"I knew what I was doing! exclaims 14-year-old Meghan Fink of Seaford, N.Y, who is vision-impaired. "I was able to stand up on that board and I felt the wind through my hair and the water came over my head a few times. It was just amazing."

Learning to surf is a rite of passage for teens in seaside communities around the world. But in recent years in communities from Long Beach, N.Y., to San Diego and Hawaii, children with disabilities ranging from near-blindness to autism have been joining the fun, amazing their parents, their counselors and themselves by hopping up on surfboards and riding the waves.

Such programs have been around for about a decade. No one suggests there are therapeutic cures amid the waves, but the surge in self-confidence is easily evident.

"It's a thrill of feeling yourself in a situation where you have control and you are working with nature to get some pleasure and enjoyment, and that's what surfing is all about," says Harvey Weisenberg, 50-year veteran lifeguard in Long Beach, who has a 52-year-old developmentally disabled son. Weisenberg, also a state lawmaker, is one of the local founders of a program now called "Surf for All," which allows those who never dreamed of surfing the opportunity to "hang 10."

The group recently entertained participants in the Wounded Warriors program, which assists veterans injured in the wars in Iraq and Afghanistan.

"The feeling of riding a wave is nothing like anything else," says Cliff Skudin, who like his brother, Will, is a professional world-class surfer; both are stars of the surfing magazines. "You feel weightless; it's an amazing feeling to be rising above the waves."

Cliff Skudin, who has a master's degree in physical education, is another Surf for All founder. The program started with five autistic surfers in 2002, but now boasts more than 1,800 alumni.

"Smiles on the kids' faces and cheers from the parents is all I need," Cliff Skudin said when asked to explain why he became involved. "It's a different feeling that they've never had."

He recalls working with an autistic child several years ago who had never spoken. After riding a wave with Skudin, the child arrived back on the beach. "He said, `More, more, I want more.' And the family was just completely shocked."

"To see that was awesome."

The surfers and their coaches aren't the only ones benefiting.

"The adults that come just to see are moved, they have a different insight as to kids with disabilities immediately," says Mary Tatem, director of Pupil Personnel Services in the Long Beach school system. Special needs children from the school system have participated in a summer surfing program for several years, she said.

And the students? "They feel empowered because they're doing something what feels to them to be on their own."

Dr. Andrew Adesman, chief of developmental and behavioral pediatrics at the Steven & Alexandra Cohen Children's Medical Center, notes there have been other types of novel approaches in dealing with children with autism, such as swimming with dolphins, but he warns surfing "is not a breakthrough in therapy."

He also sees few pitfalls.

"I don't see any worries about safety; there appears to be adequate one-on-one supervision," he said. "This is certainly something that parents can encourage and support. Anything you can do to show kids a good time, that's wonderful."

Another Surf for All founder, Jim Mulvaney, explains the concept began about a decade ago in California, where noted surf champ and instructor Izzy Paskowitz began putting autistic children on surfboards in a program called "Surfer's Healing."

Now surf schools in many locations include instruction for disabled children and adults.

"It's just taken off," Mulvaney said. "People with disabilities often don't have enough fun. And they're left out of things and they're often seen as being disabled rather than being abled."

Lisa Innella, director of Camp Abilities Long Island, said she is barred by privacy laws from describing the level of blindness of the students. Most ambled across the beach with little trouble, although some used canes.

"I just want these kids to be able to go out there and try for the first time and enjoy themselves," she said.

Michael Taylor, 11, of East Meadow, whose mother said he has "not much useable vision," fell into the water twice before triumphing on his board.

"I thought it was pretty cool," he exclaimed. "The best part was the third time I stood up on a surfboard."

And what did he learn from his coach, Skudin?

"He told me to pop up. Yep, that's what I did."

John Gilroy, a 14-year-old vision-impaired teen from West Islip, is awaiting hip replacement surgery, but that didn't stop him from commanding the waves.

"It was really cool. It was my first time surfing and even though I can't walk right, I can still go on the surfboard and take the wave," he said. "It was really cool, a really big rush, I guess."

British theatre troupe of people with intellectual disabilities presents musicals about their experiences

From Community Newswire in the UK:

Eight actors with learning disabilities will perform two musicals based on the experiences and challenges faced by others living with learning disabilities.

The Twisting Ducks Theatre Company has developed two musicals called Duck and What's Up Doc, using personal accounts gathered from interviews and workshops involving people with disabilities.

Both shows will be performed at a launch night on September 7 at the People's Theatre in Jesmond, from 7pm to 9.30pm.

Hundreds of adults with learning disabilities living in the North-east will be given the chance to watch the performances and see the life experiences and challenges they have faced transformed into two original musicals.

Both musicals aim to dispel misconceptions about adults with learning disabilities, and promote the need for dignity and respect.

Alison Cane, a member of The Twisting Ducks Theatre Company, said: "I am a lot more confident now because of all the work I have done for the Twisting Ducks Theatre Company.

"I know people want to listen to what I have to say and we want to get our voices and others with a learning disability heard.

"I am dead excited about the launch and feel very proud of the work we have all done."

Fellow member Kylie Wightman said: "Working with the Twisting Ducks has made me more confident.

"Sometimes I say I can't do things and maybe give up too easily, but with the Twisting Ducks I find that I just can't do that because we are a team and we all need to work together.

"Some people might think that people with learning disabilities can't do the things that we can do. We make people aware of the challenges that people with learning disabilities can face.

"Our plays make real changes to the way people with learning disabilities are treated within health care, housing and other services.

"The launch is going to be great, so we can show everyone the work we've done and how far we've come since we started as a theatre company."

Sameena Varris, another member, added: "I think our work is really good I'm proud of that. I am so excited about our launch.

"I can't think of anything I would rather do that be an actor in the Twisting Ducks."

Speaking about Twisting Ducks, Bill Norman, Valuing People co-ordinator for Newcastle Upon Tyne, said: "Their shows put the message of disability equality better than a thousand reports ever could."

The Twisting Ducks Theatre Company has been a registered charity since 2009. The company makes entertaining, accessible and informative drama about issues that are important to people with learning disabilities. It aims to raise awareness about the rights of people with learning disabilities and the challenges they face in a bid to inspire others and change society's attitude towards learning disabilities.

VA changes will make it easier for Vietnam vets exposed to Agent Orange to apply for benefits

From The Federal Eye in The Washington Post:

More than 150,000 Vietnam War veterans may apply for benefits from the Department of Veterans Affairs in the next 18 months thanks to new regulations making it easier to compensate for health problems caused by exposure to the Vietnam-era defoliant Agent Orange.

The changes could result in payouts of about $42 billion in the next decade. But they could still face resistance from lawmakers concerned about the VA paying out claims for ailments that are common in elderly Americans anyway, despite military service.

Under the new regulations set for publication in Tuesday's Federal Register, VA will presume that veterans who served in Vietnam between Jan. 9, 1962, and May 7, 1975 were exposed to Agent Orange and will add three medical conditions -- hairy cell leukemia, Parkinson’s disease and ischemic heart disease -- to its list of disabilities presumed to have a connection to exposure to the herbicide.

VA also plans to review about 90,000 previously denied claims from veterans who previously sought benefits for Agent Orange-related health problems.

The changes could result in about $13 billion in benefits payments in the next year, VA Acting Undersecretary for Benefits Michael Walcoff said Saturday.

“There will be articles out there written by writers -- we’re working with a writer right now who’s very negative about this -- very negative about the fact it’s going to cost so much money,” Walcoff told attendees at the American Legion National Convention. “Very negative about the fact that anybody who was in country in Vietnam qualifies for this. That’s the kind of thinking that’s out there."

“The fact is we’re obeying the law," Walcoff told attendees. "The law says that anybody who was in country is entitled to the presumptions. Besides that, I believe that what we’re doing is the right thing to do. It’s what [VA Secretary Eric K. Shinseki] wants to do.”

Rick Weidman, director of government relations for Vietnam Veterans of America, also defended the high costs, saying they should be considered in the same context of the ongoing wars in Afghanistan and Iraq.

"We would make the point that many, many times the number of troops originally estimated have [traumatic brain injury] coming out of Iraq and Afghanistan," Weidman said. "Should we not then award it because it’s too many people.? It’s the same argument – an environmental wound is the same as a blast wound."

Congress included $13.4 billion for Agent Orange-related benefits in this year's $58 billion supplemental spending bill, but Sen. James Webb (D-Va.), a Vietnam veteran, has said that adding ischemic heart disease to VA's list of approved diseases could result in the department paying veterans for a disease they might have contracted anyway as they aged.

“I take a back seat to no one in my concern for our veterans. I have spent my entire adult life one way or the other involved in veterans law," Webb said in May. "But I do think we need to have practical, proper procedures and I do believe that the executive branch…needs to be held to an accountable standard.”

Webb sits on the Senate Veterans Affairs Committee, which is scheduled to hold a hearing on the new regulations on Sept. 23.

Virginia says schools must provide behaviorial aides

From WSLS- TV in Va.

Dianne Jackson’s son Ronnie (pictured) just started eighth grade at Dan River Middle School — a tough time of transition for many students, but Ronnie also suffers from a form of autism.

Because of his Asperger’s, Ronnie needs a one-on-one behavioral aide to focus and perform well in school.

“The aides have been wonderful,” Jackson said. “It’s been a lifesaver for my son. He made honor roll and got into Junior Beta Club last year. My son is highly intelligent, it’s just keeping him focused on what he needs to do.”

But this spring, Jackson found out Ronnie was at risk of losing his aide because of changes in funding for that service.

Danville and Pittsylvania County schools learned this spring the local Community Policy and Management Board, which administered the state funding for behavioral aides to work in the schools, would no longer be funding those positions. Parents, worried about losing the needed help, showed up angry at school board meetings blaming the school systems for laying off those employees.

However, those aides were not employees of Danville and Pittsylvania County schools — they were contracted through local vendors, a service the community board paid for.

What changed this year is in January the state Department of Education clarified to school systems in a memo “all services and supports that are necessary to provide (a free and appropriate public education) … must be provided regardless of cost” and that school divisions maintain that responsibility.

“If a student needs a behavioral aide to remain in public school,” said Sherry Flanagan, director of the Pittsylvania County Department of Social Services and chairwoman of local board, “according to the Department of Education, it is the public school’s responsibility to provide that.”

However, the memo did not specifically address behavioral aides, leading to a delayed reaction from the schools in figuring out who should pay.

Jeff Early, assistant superintendent for support services and special education, said until this year, county schools were under the impression that funding for aides fell under the community board.

“At that time,” Early said, “it was understood that it was a local decision (how to fund the aides).”

To address the change for this year, county schools — which recently endured $8 million in budget cuts — used $455,000 in carryover money from 2009-10 to pay for 24 of the 60 previously filled aide positions, reducing the number through shifting staff and combining services.

Aides who were averaging $25,000 to $30,000 per year, according to Flanagan, had to apply for new positions with the schools at a minimum wage, or little more than $15,000 a year.

“We’ve hired the staff that we’ve needed and students are receiving the help that they need,” Early said. “… Before we did anything, we talked with all the parents that were involved and worked it out. It’s our responsibility and we are providing them.”

Bringing on the aides this year as hourly staff was a temporary solution, Early said, and the county would address future funding for aides on a case-by-case basis.

In Danville, Andy Thacker, director of exceptional children, said they too would hire their own personnel at an hourly rate to fill those needs. Last year the division had 33 aides, but Thacker said the city would hire about 20 part-time aides.

“We have to fund whatever is needed,” he said. “… We contacted all of our families at the end of last year that were affected as soon as we were made aware of how that transition was going to take place.”

Flanagan said in 2009-10 the community board spent $9 million on services in the county — $8.7 million on behavioral aides alone, second in the state only to Fairfax County. In Danville, the board spent more than $2 million on services. Comparatively, Flanagan said, Henry County spent about $500,000.

Those numbers led the state to clarify the use of CSA funds.

“We were never saying that the services were not needed,” she said. “We just determine whether or not we’re the appropriate place for the funds to come from. We take all our direction from Richmond.”

Flanagan said the schools would determine how many aides they needed and the localities would pay an 11 percent match of the cost, with the state paying the remaining 89 percent.

But with the clarification on whose responsibility those aides are, the schools will now have to pay all of the cost for those aides — potentially adding millions in required services to the already cash-strapped school divisions.

“We just want to do it right,” Flanagan said. “Ultimately the state has told us, if we spend money in a way we are not supposed to, ultimately the county could have to pay back all that money.”

Jackson is thrilled to have Ronnie’s aide, Steven Waller, back working with him — but it wasn’t without a fight, she said. As the district evaluated its aides on a case-by-case basis, Jackson said she was told that Ronnie did not need Waller anymore because he had been performing well in his evaluations and tests. But Ronnie needs continued support to continue to do well, she said.

“Nothing changed with my son,” Jackson said. “The only thing that changed was who was gonna pay for it … We did win that battle.

“I don’t care if Mr. Waller walks down the aisle with Ronnie getting his diploma,” she said, “as long as he graduates.”

First tests of stem cell therapy nearing

From The Washington Post. In the picture, experimental stem cell treatments offered in China are luring American patients such as 9-year-old Kara Anderson, whose parents took her around the world to help treat her cerebral palsy.

Even as supporters of human embryonic stem cell research are reeling from last week's sudden cutoff of federal funding, another portentous landmark is quietly approaching: the world's first attempt to carefully test the cells in people.

Scientists are poised to inject cells created from embryonic stem cells into some patients with a progressive form of blindness and others with devastating spinal cord injuries. That's a welcome step for researchers eager to move from the laboratory to the clinic and for patients hoping for cures. But beyond being loathsome to those with moral objections to any research using cells from human embryos, the tests are worrying many proponents: Some argue that the experiments are premature, others question whether they are ethical, and many fear that the trials risk disaster for the field if anything goes awry.

"We desperately need to know how these cells are going to perform in the human setting," said John Gearhart, a stem cell pioneer at the University of Pennsylvania. "But are we transplanting cells that are going to cause tumors? Will they will stay where you put them and do what you want them to do?"

Supporters of these privately funded, government-sanctioned tests, including patients' advocates, bioethicists and officials at the companies sponsoring them, are confident that research has been exhaustively vetted. The Food and Drug Administration has demanded extensive experiments in the laboratory and on animals to provide evidence that the cells are safe enough to test in people and hold great promise.

"We're very optimistic," said Thomas B. Okarma, president and chief executive of Geron Corp. of Menlo Park, Calif., which after years of delay received a green light in July from the FDA to study patients partially paralyzed by spinal cord injuries. "If we're right, we'll revolutionize the treatment of many chronic diseases."

But some researchers fear that the stakes jumped even higher with the federal judge's decision blocking federal funding. If patients are hurt by the cells - or even if there's no hint the cells help - that could be a devastating blow just as scientists are scrambling for funding from private foundations and benefactors. They cite the case of Jesse Gelsinger, whose 1999 death from a gene therapy experiment set that once highly touted field back years.

"There's a lot of angst around these trials," said Evan Y. Snyder, director of the stem cell program at the Sanford-Burnham Medical Research Institute in San Diego. "There's going to be this perception that if the cells do not perform well, the entire field will be illegitimate."

Most of the apprehension focuses on the Geron trial. Safety worries - most prominently fears that the cells could cause tumors - prompted the FDA to repeatedly demand additional data from Geron, including most recently assurance cysts that developed in mice injected with the cells posed no threat.

"We jumped through a lot of hoops to convince a lot of audiences," Okarma said. No one wants another Jesse Gelsinger."

While Geron eventually hopes to test the cells on many patients the first trial will involve 10 partially paralyzed by a spinal cord injury in the previous one to two weeks. Surgeons will inject the first patient with about 2 million "oligodendrocyte progenitor cells," created from embryonic stem cells, in the hopes the cells will form a restorative coating around the damaged spinal cord. In tests in hundreds of rats, partially paralyzed animals walked.

The trial is designed primarily to ensure the cells are safe. But researchers will look for signs that the therapy restores sensation or enables patients to regain movement.

"If we were able to do that, it would be a phenomenally positive result," Okarma said.

Spinal cord injuries, however, are highly unpredictable and in many ways mysterious. Patients can often improve on their own, for example, which will make it difficult to evaluate whether the cells had any effect. Some wonder whether trauma victims who have so recently suffered a life-altering injury will agree to the experiments out of desperation without fully grasping the risks.

"Think of it this way: You are a healthy young person, you have had a terrible accident, you wake up in the hospital and are told that you will never walk again, that you will paralyzed for the rest of your life," Stanford University bioethicist David Magnus wrote in an e-mail. "Then you are told that there is a Phase I stem cell clinical trial that you are eligible for, but a decision needs to be made quickly. It would be hard to imagine that would be the optimal scenario from the point of view of informed consent."

In the meantime, officials at Advanced Cell Technology of Menlo Park, Calif., are hoping for the FDA's go-ahead to start possibly even sooner injecting 50,000 to 200,000 cells into the eyes of 12 patients suffering from Stargardt's macular dystrophy. Retinal pigmented epithelial cells, also made from human embryonic stem cells, should replace those ravaged by the progressive loss of eyesight, usually beginning in childhood. Studies in rats found the cells helped prevent further vision loss and even restored some sight. The company hopes the approach will work for many conditions, including the leading cause of blindness among the elderly.

"These diseases are devastating," said Robert Lanza, Advanced Cell Technology's chief scientific officer. "If we could make difference, it would be profoundly important."

Christopher Goodrich, 55, of Portland, Ore., whose eyes started failing at age 7 and now sees the world as if looking through a dense fog, hopes he might be one of the first patients.

"The thought of being able to regain some of my vision - to be able to go back to work, to ride a bike, to even be able to see the moon - would just be so awesome," Goodrich said.

But safety worries linger for both studies. Patients risk making their conditions worse - perhaps becoming fully paralyzed or losing whatever vision they have left.

"It's one thing if you are doing a treatment for a disease where the patient is going to die without treatment," Magnus said. "It's another if they could have a relatively good functioning life."

Okarma and Lanza said they are confident the therapies are safe. Only patients 18 or older will be initially considered for the eye study, and the treatment will only be administered to one eye to ensure the patients retain at least some vision in a worst-case scenario, Lanza said. Even if there are problems with the spinal cord damage victims, Geron's research shows the cells do not leave the site of the injury, indicating patients would not suffer any ill effects, Okarma said. Extra precautions, including assigning each subject an independent advocate, will guarantee that volunteers fully understand their decisions, he said.

"If human embryonic stem cells are going to be useful in treating humans, someone has to be the first one to try it," said Hank Greely, a Stanford lawyer and bioethicist. "They need to have their fingers crossed and hold their lucky rabbit's foot and be really careful in their preparations, because before you try something in humans you never know what's going to happen."

In Mississippi, Medicaid drops children with Down syndrome from state assistance

From The Clarion Ledger in Miss.:

Medicaid officials have begun to remove children with Down syndrome from the state rolls, leaving parents to find ways to pay for expensive physical, speech and occupational therapy.

Some parents say their children had been in Medicaid's Disabled Child Living at Home program almost since birth before being removed.

Other parents say their children should have been approved for coverage but were rejected.

Medicaid officials insist their rules haven't changed. The form they use today is the same one they used in 1993.

They defend their work in assessing children, pointing to an overall error rate as less than 1 percent - among the best in the nation.

"We want to ensure that those who are on the program are those who really need the assistance," said Francis Rullan, director of communications for Medicaid in Mississippi. "If there are individuals on the program who shouldn't be, the state could be required to repay the federal government for expenditures made on their behalf."
Mississippi's Disabled Child program, which has no income-eligibility requirement, rose from 939 in January 2007 to 1,251 in December. It was at 1,176 in July.

The decline comes at a time when Medicaid officials are scrambling to save money, facing an estimated $34 million shortfall.

Deborah Edmondson of Jackson and her husband, Stephen, whose daughter was born a year ago with Down syndrome, described their experience with Medicaid as frustrating. "We have provided tons of paperwork," she said. "We went to every single doctor and got paperwork and hand-delivered it to Medicaid."

She was denied coverage.

"My daughter is in therapy three times a week," Edmondson said. "And I live at UMC (University of Mississippi Medical Center)."

Stephen Edmondson said the hearing officer told him she was going to recommend his daughter be approved.

A month later, the couple received a rejection letter. They now are suing.

"The Edmondsons' recollection of statements made at the hearing is inaccurate, and we will prove that," Rullan said. "We look forward to defending our position in court if necessary, but we are also open to more amicable alternatives."

Medicaid officials acknowledge the language in their documents is confusing.

According to federal regulations, a child with Down syndrome must require the same level of care provided in a hospital or nursing home to qualify.

"Who does qualify for that unless the child has a feeding tube?" asked Bill Pittman of Hattiesburg, whose 4-year-old daughter was removed from the rolls. She had been on the rolls since she was 3 months old.

In a June 28 letter, Medicaid official Pam Commander wrote, "There is no evidence this child requires extensive medical care in the home."

Pittman said the interpretation of regulations lead parents to a Catch-22. If therapists and parents work hard and children with Down syndrome improve, "they no longer meet the standard of care required," he said. "If they're not getting better, then Medicaid won't pay because they're showing no sign of improvement."

Mary Troupe, executive director for the Mississippi Coalition for Citizens With Disabilities, which has been working with families, said Medicaid officials need to do a better job of explaining to doctors what is required.

"Here these parents are doing what they've always done, they're reupping, and all of a sudden they get a letter saying your child doesn't qualify," she said. "You haven't told the doctors, and you haven't told the parents."

Many parents give up rather than fight, she said.

Tye Burnham of Brandon said her daughter, Isabella, who turns 7 next month, was kicked off the rolls because she had to be getting "the kind of care like she would get in a nursing home."

"It didn't seem age appropriate to me," Burnham said.

Her daughter since has been reinstated, something she's grateful for because physical and speech therapy bills alone run more than $500 a month. "We really couldn't afford it," she said.

Jackie Wansley of Jackson still hopes to get her 6-year-old daughter back on the rolls.

She said she doesn't blame Medicaid. She never received the reapplication form because she moved.

Medicaid officials have asked her for a psychological exam - something she said they never requested before this year.

She said she's unable to afford that exam, already having to pay her child's doctor $300 to treat strep and an ear infection.

She said her daughter needs additional speech and occupational therapy and is unable to get it in school.

Rosemary Moody of Philadelphia said her son, Andrew, first qualified for the Disabled Child program when he was 3 months old. Now he's 10.

She said she didn't know her son had been removed from the rolls until she went to get him new glasses. He has crossed eyes, and one eye shakes, she said. "I never received a letter saying he was kicked off," she said.

She has talked with Medicaid officials, who have told her a psychologist must examine her son and do an IQ test.

She said she can't afford the bill for the psychologist, much less more doctors, because her son has a history of pneumonia and dental issues.

"I don't know what we're going to do," she said. "We're going to have to leave it in the Lord's hands."

UK Disability Studies conference to webcast keynote speakers Sept. 7-9

From the Disability Studies conference website. (Thanks to the 32 Days Remaining blog for the tip.)

The fifth international disability studies conference will be taking place at Lancaster University, UK, on Tuesday 7th - Thursday 9th September 2010.

Confirmed plenary speakers are Liz Crow, Caroline Gooding, Ruth Gould, Alana Officer and Adolf Ratzka.

Over 140 paper and 20 poster presentations have been accepted.

The conference will provide a live webcast of the plenary sessions. This can be viewed at http://www.lancs.ac.uk/iss/digital/disability/.

Here are bios of the plenary speakers:

Liz Crow: Writer, director and producer of various Roaring Girl productions
Liz is a writer-director working with film, audio and text. Interested in drama, life stories and experimental work, she is drawn to the potential of storytelling to trigger change. Described as “a director of real visual flair”, her work has been praised for its ability “to get under the skin of a subject”. Liz’s work has shown at Tate Modern and the British Film Institute, as well as on television and at festivals internationally. Through a four-year NESTA (National Endowment for Science, Technology and the Arts) fellowship, she explored ways to combine her creative practice and political activism. Liz is a graduate of the Skillset Guiding Lights scheme where she was mentored by Peter Cattaneo (The Full Monty).

Caroline Gooding: Equality Consultant and Special Adviser to RADAR
Caroline Gooding, is an Equality Consultant and Special Adviser to RADAR. Formerly Director of Diversity Works for London, and Special Advisor to the Disability Rights Commission where she led on the Disability Equality Duty, Goods and Services and Legislative Change. She is qualified and has practiced as a solicitor. Caroline is a long term disability rights activist and for more than ten years was Chair of the Trade Union Disability Alliance.

Her publications include Disability Rights in Europe, from theory to practice Essays in European Law (2005); Blackstone’s Guide to the Disability Discrimination Act (1995); Enabling Acts Disabling Laws, Disability Rights in Britain and the United States (1994); Lesbian and Gay Legal Handbook (1992). She has also published articles on disability and equality issues in Tolleys and Equal Opportunities Review.

Ruth Gould: Chief Executive Officer DaDa
"Deaf and Disability Arts are important because they allow us to make others think in a different way, breaking through perceptions and stereotypes in order to affirm our place in society."

Ruth trained in performance arts, speech & drama, dance and mime at Liverpool Theatre School. Ruth has led workshops in Mime, Movement and Drama, and developed full-scale theatre productions. From 1992 Ruth has worked in arts administration and management including; business development for artists in the Creative Industries sector, managing start-up funds for artists, developing Disability Arts projects, and now, CEO of DaDa.

Ruth is passionate about Disability and Deaf arts being celebrated as cultural diversities in their own right. Ruth is also a board member of Liverpool 2008 Culture Company, Vice Chair of The Bluecoat Arts Centre, a council member with Arts Council England North West and co-opted Member of National Liverpool Museums Public Services Committee.

Alana Officer: Coordinator for Disability and Rehabilitation, WHO
Alana Officer is a native of New Zealand. She holds a diploma in Applied Science (Podiatric Medicine) from the Institute of Technology in Sydney, Australia; a Master's degree in Applied Science (research) from the University of Sydney, Australia; and a Masters degree in Public Health from the London School of Hygiene and Tropical Medicine (LSHTM). Prior to joining WHO in July 2006, Ms Officer held a number of technical and managerial positions working on disability, rehabilitation and development in West and Central Africa, Europe, South Asia and the Western Pacific. Ms Officer was the Country Director for Handicap International (HI) in India.

Alana Officer joined WHO in July 2006, and is now Coordinator for the Disability and Rehabilitation Team. She oversees WHO's work on disability and rehabilitation related to policies, medical care and rehabilitation, community-based rehabilitation, assistive devices and technologies, and capacity building. She is the executive editor of the World report on disability and rehabilitation due for release in 2009

Adolf Ratzka: Activist for Independent Living
Adolf Ratzka is an internationally renowned activist for independent living. He is known for leading the Swedish Independent Living movement. He set up the pilot project on personal assistance, which was to become the model for the Swedish Personal Assistance Act of 1994. The then Minister of Social Affairs, Bengt Westerberg, invited Adolf to Parliament when the Act made into law. Adolf was the founding chair of ENIL, the European Network on Independent Living, which works for disabled citizens’ personal and political power, for self-determination and against discrimination.

In 1999 he was recognized by TIME magazine as European visionary for the new millennium, mainly for his pioneering work for cash payments replacing services in kind thereby promoting disabled people’s right to self-determination and freedom of choice. Adolf received the European Citizen Award from the European Anti-Discrimination Council in 2008. Also in November 2008 he led an international conference to celebrate twenty-five years of independent living in Sweden.

Disabled workers at Social Security Admin. move forward with class-action lawsuit

From The Baltimore Sun:

A group of disabled workers is moving forward with a class-action lawsuit against the Social Security Administration alleging the federal agency discriminates against employees with disabilities by denying or limiting promotions.

An office of the U.S. Equal Employment Opportunity Commission on Aug. 25 affirmed a 2008 decision by an EEOC administrative judge that certified the case as a class action, attorneys for the plaintiffs said Monday. The lawsuit seeks compensatory and other damages as well as changes in policies and procedures that will improve career opportunities for disabled employees, according attorneys for the plaintiffs.

The federal agency could not be reached August 30 for comment.

The plaintiffs, roughly 2,000 current and former Social Security employees with disabilities, include those who applied for promotions on or after Aug. 22, 2005, and appeared on a government "best qualified" list but were denied promotions. Their disabilities include deafness, blindness, missing extremities, partial or complete paralysis, convulsive disorders, mental retardation, mental illness and conditions affecting limbs or spine.

Ronald Jantz, a deaf Social Security employee who initially filed the lawsuit, has worked for the agency for more than 20 years and repeatedly made the "best qualified" list when applying numerous times for promotions.

"Nonetheless, he has never been promoted during his entire, 20-year career," said Dan Goldstein, a partner with Brown Goldstein & Levy LLP in Baltimore, one of the firms representing the plaintiffs. "Unhappily, what I am describing … is not peculiar to Mr. Jantz but is an experience that many Social Security employees with disabilities have experienced."

Jantz, a management analyst from Woodlawn, said in a statement he hopes the case brings a change in policies.

"I brought this lawsuit to bring about change necessary to ensure that employees with targeted disabilities receive the same promotions and career advancement opportunities as non-disabled employees," he said.

An administrative judge with the EEOC certified the case as a class action on Oct. 8, 2008. Social Security appealed that decision in December 2008. Last week, the EEOC's Office of Federal Operations, the commission's appellate unit, affirmed the administrative judge's decision. The case will now be remanded to an administrative judge for trial.

Doctors seek ways to treat muscle loss that comes with aging

From The NY Times:

Bears emerge from months of hibernation with their muscles largely intact. Not so for people, who, if bedridden that long, would lose so much muscle they would have trouble standing.

Why muscles wither with age is captivating a growing number of scientists, drug and food companies, let alone aging baby boomers who, despite having spent years sweating in the gym, are confronting the body’s natural loss of muscle tone over time.

Comparisons between age groups underline the muscle disparity: An 80-year-old might have 30 percent less muscle mass than a 20-year-old. And strength declines even more than mass. Weight-lifting records for 60-year-old men are 30 percent lower than for 30-year-olds; for women the drop-off is 50 percent.

With interest high among the aging, the market potential for maintaining and rebuilding muscle mass seems boundless. Drug companies already are trying to develop drugs that can build muscles or forestall their weakening without the notoriety of anabolic steroids. Food giants like Nestlé and Danone are exploring nutritional products with the same objective.

In addition, geriatric specialists, in particular, are now trying to establish the age-related loss of muscles as a medical condition under the name sarcopenia, from the Greek for loss of flesh. Simply put, sarcopenia is to muscle what osteoporosis is to bone.

“In the future, sarcopenia will be known as much as osteoporosis is now,” said Dr. Bruno Vellas, president of the International Association of Gerontology and Geriatrics.

Researchers involved in the effort say doctors and patients need to be more aware that muscle deterioration is a major reason the elderly lose mobility and cannot live independently.

“A doctor sees old people who are shrinking and getting weak, but there is no medical terminology that’s been created and made uniform to allow the doctor to make a diagnosis, look at possible causes, and make a treatment plan,” said Dr. Stephanie A. Studenski, a professor of medicine at the University of Pittsburgh.

Of course, commercial interests are at play as well. “If you are trying to sell drugs, you want to have a very clear criterion for diagnosing the problem and for endpoints to treat it,” said Dr. Thomas Lang of the University of California, San Francisco, who is working on techniques for diagnosing sarcopenia.

A task force of academic and industry scientists met in Rome last November and in Albuquerque last month and has submitted a proposed definition of sarcopenia for publication in a medical journal. The meeting received financial support from several drug companies and food companies.

Underscoring the focus on sarcopenia, four European medical societies proposed a somewhat different definition, and Dr. Studenski is developing yet another.

Whatever the definition, experts say, sarcopenia affects about 10 percent of those over 60, with higher rates as age advances. One study estimated that disability caused by sarcopenia accounted for $18.5 billion in direct medical costs in 2000, equivalent to 1.5 percent of the nation’s health care spending that year.

Causes of the loss of muscle mass or strength might include hormonal changes, sedentary lifestyles, oxidative damage, infiltration of fat into muscles, inflammation and resistance to insulin. Some problems stem from the brain and nervous system, which activate the muscles.

Experts say the best approach to restoring or maintaining muscle mass and strength is exercise, particularly resistance training.

The National Institute on Aging is now sponsoring a controlled trial to test whether exercise can prevent disability in largely sedentary people, age 70 to 89. There is also some early evidence that nutrition, like vitamin D or high levels of protein, might help. “At this point, what we can say is that older people are at risk for eating too little protein for adequate muscle preservation,” said Dr. Elena Volpi of the University of Texas Medical Branch in Galveston.

Pharmaceutical companies are paying more attention to muscles, a part of the body they once largely ignored. A year ago, for instance, GlaxoSmithKline hired William Evans, a leading academic expert on sarcopenia, to run a new muscle research unit.

But with sarcopenia still not established as a treatable condition, “there is no real defined regulatory path as to how one would get approved in this area,” said R. Alan Ezekowitz, a research executive at Merck.

So for now, many companies are focusing on better defined illnesses like muscular dystrophy and cachexia, the rapid muscle wasting that can accompany cancer or other diseases.

One problem is that academic researchers and drug companies initially viewed sarcopenia as primarily a loss of muscle mass, a direct analogy to bone density in osteoporosis. Muscle mass can be measured by the same scans used for bone density.

But some studies have shown that strength, like gripping force, or muscle function, as measured, say, by walking speed, can be more important than mass in predicting problems seniors might have.

“There’s a lot more to the story than simply having a lot of muscle tissue,” said Brian C. Clark, an expert at Ohio University. “Most of the drug stuff has been targeting muscle mass.”

So the definition is shifting to include muscle strength and function. The academic-industry task force recommends testing whether a person can walk four meters, or about 13 feet, in four seconds.

That can be tested by any doctor, without the special equipment needed to measure muscle mass or strength, said Roger A. Fielding of Tufts University, a leader of the task force.

Experts say that to win approval from regulators and reimbursement from insurers, a drug must do more than merely improve mass or strength. It must, for example, improve walking ability or prevent people from falling.

Or perhaps it could restore mobility faster after a person is bedridden. Older people can lose so much muscle during a prolonged hospital stay that they have to move to a nursing home.

Demonstrating such benefits and cost savings would help counter criticism that doctors and drug companies are trying to turn a natural consequence of aging into a disease.

“If you can get out of a nursing home in three weeks instead of three months, wouldn’t we say it is a useful thing?” said Dr. Studenski, who consults for drug companies.

Efforts to develop muscle drugs are still in early stages, and there have been setbacks.

But for inspiration, researchers can look to the bears, though scientists have no definitive answer to the animals’ youthful secret.

Moreover, a study that has tracked 3,000 people for 50 years found that about 20 of them, now in their 80s, have not lost muscle mass.

“Maintaining the muscle is possible,” said Dr. Luigi Ferrucci of the National Institute on Aging, who directs the study, called the Baltimore Longitudinal Study of Aging. “We just don’t know the right formula yet.”

Federal appeals court: UPS may have unlawfully discriminated by failing to provide ASL interpreters to deaf worker

From Business Insurance:

SAN FRANCISCO — A United Parcel Service of America Inc. unit may have unlawfully discriminated against a deaf worker by failing to provide American Sign Language interpreters, a federal appeals court ruled August 27.

According to the ruling by the 9th U.S. Circuit Court of Appeals in San Francisco in U.S. Equal Employment Opportunity Commission vs. UPS Supply Chain Solutions, Mauricio Centeno worked as junior clerk in the accounts payable division of the UPS facility in Gardena, Calif. Mr. Centeno has been deaf since birth, and American Sign Language was his first and primary language, while his English reading and writing skills were at a fourth- or fifth-grade level, according to the opinion.

Among Mr. Centeno's complaints was that Atlanta-based UPS failed to fully accommodate him by providing an American Sign Language interpreter at all meetings. Instead, at some meetings the company would provide what he considered “inadequate” summaries later that failed to give him the opportunity to participate during the meetings.

In 2006, the EEOC filed a complaint on Mr. Centeno's behalf alleging that UPS engaged in unlawful employment practices by failing to reasonably accommodate his deafness. In 2008, a district court granted UPS' motion for summary judgment and dismissed the case.

In overturning the district court ruling, the appeals court panel said an employer “has discretion to choose among effective modifications, and need not provide the employee with the accommodation he or she requests or prefers, but an employer cannot satisfy its obligations under the (Americans with Disabilities Act) by providing an ineffective modification.

“Whereas here, there is a disputed issue of fact regarding whether the modifications the employer selected were effective, and where the trier of fact could reasonably conclude that the employer was aware or should have been aware that those modifications were not effective, summary judgment is not appropriate,” the appeals court panel ruled in remanding the case for further proceedings.

Jennifer S. Goldstein, an appellate attorney with the EEOC's office of general counsel in Washington who had argued the case, said, “I think it's important to reaffirm that even for an employee who can perform his job duties without an accommodation, that the law still requires that he be able to…enjoy the benefits and privileges of the workplace,” and that employers may therefore have to make reasonable accommodations to ensure the disabled employee can participate equally.

“We believe UPS did offer reasonable accommodation by providing an interpreter for all major meetings and then a note-taker for other meetings to assist this employee, and the district court agreed when they granted us summary judgment,” a UPS spokeswoman said. “UPS has a strong record of providing reasonable accommodations for employees with disabilities.”

She said the company will review the decision and evaluate its options.

Jury award of $677 million against California nursing home owner shakes up industry

From The AP:

SAN FRANCISCO — During Cindy Cool's almost daily visits to the nursing home, she would routinely find her Alzheimer's-suffering father wearing urine-soaked clothes.

The Blue Lake, Calif. resident said it would take upwards of 20 minutes for the apparently short-handed staff of Eureka Healthcare and Rehabilitation to respond and help Cool clean her father. Other patients fared worse, she said.

"A lot of times I walked out of there crying because of the things I saw," Cool said an interview.

She provided key testimony before a Humboldt County jury last month slammed the owners of her father's nursing home with a $677 million verdict, sending shock waves through the industry and rekindling calls for tort reform.

The verdict as it stands is already thought to be the largest in the country this year and its ramifications are still being sorted out weeks after the jury surprised even the plantiffs' lawyers with the size of their verdict. Tort reformers have seized on the verdict as the latest example of litigation abuse.

The company's stock price has plunged on fears it will have to file bankruptcy. Cool, 58, was part of a class-action lawsuit representing 32,000 patients that blamed the nursing home staff shortage for the misery she encountered — echoing a common complaint across the country that for-profit nursing homes are too concerned with the bottom line.

After Wall Street investment firms went on a nursing home buying spree during the early years of the new century, critics charge that many companies drastically cut payroll expenses to prop up stock prices.

"The major problem for most nursing homes in California and in the nation is staffing," said Pat McGinnis, executive director and founder of the California Advocates for Nursing Home Reform.

Many of the 16,100 homes nationwide are owned by public companies. The home where Cool father's lived and died in 2006 is owned by Skilled Healthcare Group Inc., which is traded on the New York Stock Exchange.

On July 6, the Humboldt County jury found that Skilled Healthcare on numerous occasions violated state regulations requiring it to keep a minimum number of nurses on duty at its 22 homes in the state.

James Gomez, president and chief executive of the California Association of Health Facilities, called the verdict "outlandish, excessive and extreme" and said a "good provider of skilled nursing care" is likely bound for bankruptcy if the verdict holds up, threatening the livelihoods of 14,000 California workers.

The lawsuit accused Orange County-based Skilled Healthcare of failing to maintain 3.2 nursing hours per patient per day at its 22 nursing homes in California. The company is just the 10th largest, based on beds, in an industry that struggles to keep workers.

"The verdict is a statement that facilities must follow the law and meet minimum standards," McGinnis said.

McGinnis said the 3.2 nursing hours required by California should be an easy standard to meet because it's nearly a full hour less than the federal recommendation of 4.1 nursing hours per patient.

"The fact that this company couldn't maintain these minimum standards makes you wonder why it was in the nursing home business to begin with," McGinnis said.

Skilled Healthcare Chairman and CEO Boyd Hendrickson said in a statement immediately after the verdict that the company is "deeply disappointed" in the verdict and believes its nursing homes are appropriately staffed.

"We strongly disagree with the outcome of this legal matter, and we intend to vigorously challenge it," he said.

The company's options, however, appear to be shrinking.

On Thursday, Humboldt County Superior Court Judge Bruce Watson shot down one of the company's challenges when he denied its demand for a mistrial based on juror misconduct.

Meanwhile, the company's ability to appeal is in question. Typically, parties challenging a trial court decision are required to post 150 percent of the verdict as a bond. The company doesn't have the cash or credit to post the $1 billion-plus bond. It also likely faces bankruptcy if the jury's verdict stands up.

Both sides are currently in settlement negotiations, and legal analysts said there's good chance that the sizable verdict will be reduced.

That is what happened in another high-profile nursing home verdict won in 1998 by Michael Thamer, who is now lead lawyer in the Skilled Healthcare lawsuit.

A Siskiyou County Superior Court jury awarded his client Reba Gregory $95 million after a nursing home attendant dropped her during a bed transfer, fracturing her hip and shoulder. Thamer convinced the jury that two attendants should have attempted the transfer and that Gregory's injuries were the result of staff shortages.

A judge later reduced the $95 million verdict to $3.1 million.

Excavation of prehistoric funeral and feasting cave in Israel reveals woman priestess was disabled

From Cosmic Log at MSNBC:

Archaeologists have found a cave in Israel that was clearly used for funerals and feasts 12,000 years ago, during a time when humans were just starting to settle down in villages. Among the menu items: piles of steak and tortoise meat.

"We guess that people were having communal meals previously, but this is different from that," said Natalie Munro, a zooarchaeologist from the University of Connecticut and co-author of a study on the find appearing in the Proceedings of the National Academy of Sciences. "It's more than just an opportunity. It's an intentional, planned event."

The evidence suggests that the feasts and the funerals were connected — sort of like the dinners that were served after funerals at the American Legion Hall when I was growing up in Iowa. There's no sign that the Hilazon Tachtit Cave in the Galilee region of northern Israel was used as a residence 12,000 years ago, but there's plenty of evidence of funerals: Earlier excavation work turned up at least 28 human skeletons buried there, including a woman who appeared to be interred with ritual items as a shaman.

Munro and her colleagues estimate that the woman priestess was about 45 years old when she died — which would make her an elder in the Natufian culture. Bone spurs were found on her skeleton, leading researchers to conclude that she was disabled and may have walked with a limp. Based on the way the woman's grave was hollowed out, archaeologists think she was the first person to be buried in the cave.

That makes it sound as if the cave served not only as a prehistoric Legion Hall but also as a Westminster Abbey, with a fallen spiritual leader in the place of honor. But Munro said she couldn't take the story quite that far. "We don't know if it was a shrine," she told me, "but certainly she was buried with many special things, so she was very important in the culture."

The people who lived in the area 12,000 years ago are known as the Natufians. "These are really the last of what we would call hunting and gathering cultures," Munro said. "They're on the brink of agriculture. ... If you compared them to earlier cultures in the area, they're of interest because they seem to be settling down into permanent communities."

She and the study's other co-author, Leore Grosman of The Hebrew University in Jerusalem, theorize that as individual family groups banded together in these communities, they needed ways to blow off steam.

"People were coming into contact with each other a lot, and that can create friction," Munro said in a news release. "Before, they could get up and leave when they had problems with the neighbors. Now, these public events served as community-building opportunities, which helped to relieve tensions and solidify social relationships."

And what events they were: When the archaeologists excavated two hollows that were carved out in the cave, they counted up the remains of at least 71 tortoises and three wild cattle, also known as aurochs. They said the bones and shells showed signs of being carved up and cooked for human consumption. The tortoise shells were found surrounding the shaman's skeleton, in such a way as to suggest that they were thrown in during the burial ceremony.

The tortoises alone would provide enough meat to feed 35 people, although many more than that may have been in attendance. "We don't know exactly how many people attended this particular feast, or what the average attendance was at similar events, since we don't know how much meat was actually available in the cave," Munro said in the news release. "The best we can do is give a minimum estimate based on the bones that are present."

Munro and Grosman consider their find to be the first clear evidence of communal feasting, but there's ample evidence that humans had meals together thousands of years earlier. Last year, archaeologists reported finding a barbecue pit in the Czech Republic that was used about 30,000 years ago for roasting mammoth meat and other morsels, luau-style. In 2007, scientists turned up evidence that humans cooked up mussels, clams and snails on South Africa's seashore 164,000 years ago — and perhaps even gussied themselves up for the clambake.

Munro said the important thing about the feasts that took place in the Hilazon Tachtit Cave is that they weren't just meals. They were community events that signaled an important turning point for ancient civilizations.

"Taken together, this community integration and the changes in economics were happening at the very beginning when incipient cultivation was getting going," she said. "These kinds of social changes are the beginnings of significant changes in human social complexity that lead into the beginning of the agricultural transition."

Monday, August 30, 2010

Emmys TV audience gets to know Temple Grandin through HBO biopic win

From Entertainment Weekly's Popwatch:

Who is Temple Grandin? Her name was called out seven times at last night’s Emmy Awards, where the rancher-attired Grandin herself was “a palpable presence,” in the L.A. Times‘ words, “at one point, rising and excitedly swinging her hand lasso style from the audience.” Grandin (pictured) was there, of course, as part of the HBO movie named after her, in which she was played by the Best Actress in a Miniseries or Movie-winning Claire Danes.

Born in 1947, Grandin was diagnosed as autistic at a young age due to her inability to speak or function socially like other children. As an adult, Grandin became a renowned public advocate for those born on the autistic spectrum. Her high-functioning autism ultimately allowed her to earn a doctorate in animal science, become a university professor, and pen an autobiography about her experiences. She has also made notable contributions to the ethical treatment of livestock. Grandin, who believes that her autism helps gives her insight into the feelings of farm creatures, famously designed more humane corrals for cows headed for slaughter.

Grandin has been the subject of several film treatments before HBO’s award-winning movie, including a BBC documentary (“The Woman Who Thinks Like A Cow”) and an episode of director Errol Morris’ First Person. (Click through to the jump to see clips from both of those shows.)

In our review this February, EW’s Jennifer Armstrong said HBO’s Temple Grandin “put[s] us right inside the mind of its subject” and praised Danes for “transcend[ing] a standard awards-bait performance.” According to Deadline Hollywood, Danes said after the Emmys last night that she “never worked harder on a performance.”

Disabled Oklahomans wait and wait for state DHS help

From The Oklahoman:

Wanda Felty (pictured) picked up the telephone and sobbed.

"I think I'm going to have a breakdown if I don't get help,” cried the mother of three girls, including a brain-damaged daughter who bit herself and others, couldn't talk or see and hadn't slept longer than three or four hours a day over the entire eight years of her life.

"I remember thinking I was losing it. I cried my eyes out,” Felty said, recalling a blur of loving but sleep-deprived care of her child Kayla White (pictured).

Felty was one of thousands of parents or guardians of disabled children who have been on the state's waiting list for years. Those on the list need help ranging from after-school child-sitting to job training to a monthly case of diapers to additional therapy.

She felt overwhelmed, forgotten and was languishing on a list that never seemed to change. Then someone with the state — she can't remember who — reached out to her.

Felty had waited about five years. She got one of the state's first emergency in-home support waivers, providing a few hours' after-school help.

But more than 5,700 other disabled Oklahomans are waiting for help. And they've all been waiting for years.

The next person likely to get help has been waiting on that first-come, first-served list since April 26, 2004.

There's just not enough state money to pay for all the needs of those on the list, said James Nicholson, the state director of the Department of Human Service's developmental disabilities services. More than $50 million in state money has been budgeted this fiscal year for the programs designed to help people who were once on the waiting list.

"You can only serve as many people as you have dollars to serve,” he said.

"I think that, obviously, the magic bullet ... would be a tremendous economic turnaround.”

The list was started in 1993 with requests for people ages 3 to 70 years old. Each year, another 1,000 or so people apply to get on the list as word spreads of its existence.

"I don't expect we will ever get help from the program. The list is not moving,” said Stacy Bauter, the divorced mother of 13-year-old Jacob Gaches, born without part of his brain and with fluid on the brain.

Jacob has extensive medical problems, autism, attention deficit disorder, obsessive-compulsive disorder and a developmental delay that prevents him from getting dressed on his own or caring for himself. When he was little, he had a shunt placed with a tube to relieve the fluid on his brain. Years later, he had to spend a summer in a body cast after surgery to realign his hips.

Bauter said she was able to work full time while he was in day care.

But she was suddenly told that he was too old for the day care and had to make emergency arrangements with a family friend. Bauter has a college degree and loves her work helping disabled farmers return to their work. She said she could return to her work full time and be less financially strapped if she could get a little funding for diapers and proper day care for her disabled son.

"People who know me know that when I say help, I need it. I'm not someone that is going to live off the system. I'm not going to do it,” she said.

Sandra Kirkpatrick's 13-year-old son, Bryson Matula, has Down syndrome. He has been on the waiting list since April 2006 and she calls the chances of ever getting help "dismal.”

Kirkpatrick said she worries because every dollar she spends on private therapy, at $120 per hour, is a dollar she can't spend on his future.

"He will need some support throughout his lifetime,” she said. She said research shows that earlier training means disabled people will need less public money later in life.

"Some do jump to the front of the line because it's a critical situation,” Kirkpatrick said. "I'm not opposed to people in more dire situations being in front of me.”

Nicholson said more than 5,100 people are getting help through the waiver services program that Kirkpatrick and other moms are seeking to tap into. The services are capped at about $14,000 yearly for disabled children and about $19,000 yearly for disabled adults.

The parents say they all want to keep their children at home. For the majority, the additional money would do that by covering some expenses not already covered through Medicaid.

The state runs two live-in centers for the disabled, Southern Oklahoma Resource Center in Pauls Valley and Northern Oklahoma Resource Center of Enid.

Ken Talley, president of the Pauls Valley center's Parent-Guardian Association, said they don't want their loved ones moved, despite downsizing and a perceived history of attempts to close the centers.

And Trish Frazier, director of policy and research for the Oklahoma Public Employees Association, said the southern center shouldn't be shut down so the money could be shifted to people on the waiting list.

Nicholson said the demands on the state are so great that better ways of supporting those families must be devised.

"The days of the state accepting sole responsibility for total care and treatment are gone,” Nicholson said.

He said the department is working on a set of programs costing about $9.8 million to provide respite care, some medical supplies and vocational or day programs for adults. The services cap would be lowered to $7,500 yearly per disabled person, if the Legislature approves the proposal.

Meanwhile, there's little relief ahead for the thousands who wait for help.

Felty got the help her family needed. They are still raising their daughter at home. Kayla is a thriving 21-year-old who recently learned to say, "I love you,” in her own special language.

Felty said she's so thankful for the assistance she received that she now works with parents who have loved ones on the waiting list.

"When you see one of us hurting, reach your hand out,” she said. "That's what I'm asking the state to do.

"I see more than 5,000 people asking for help. I'm just one hand. I'd like to see the state reach out a hand and help these families.”

AirTran Airways penalized by DOT for violating rules protecting air travelers with disabilities

The DOT press release:

The U.S. Department of Transportation (DOT) August 30 assessed a civil penalty against AirTran Airways for violating rules protecting air travelers with disabilities. The carrier was assessed a civil penalty of $500,000, of which up to $200,000 may be used to improve its service to disabled passengers beyond what is required by law.

“People with disabilities have the right to expect fair treatment when they fly, and we will continue to take enforcement action when their rights are violated,” said U.S. Transportation Secretary Ray LaHood.

The Air Carrier Access Act of 1986 requires airlines to provide assistance to passengers with disabilities in boarding and deplaning aircraft, including the use of wheelchairs, ramps, mechanical lifts or service personnel where needed. U.S. Department of Transportation rules also require carriers to respond within 30 days to written complaints about their treatment of disabled passengers, and to specifically address the issues raised in the complaint. In addition, airlines must submit annual reports to the Department on disability-related complaints from passengers, noting the type of disability and nature of the complaint.

An investigation by the Department of Transportation’s Aviation Enforcement Office of disability complaints filed with AirTran and DOT revealed a number of violations of the requirement for boarding assistance. In addition, the carrier’s complaint files showed that it frequently did not provide an adequate written response to complaints from passengers. AirTran also failed to properly categorize disability complaints in reports filed with the Department, the Aviation Enforcement Office found.

Of the $500,000 penalty, up to $60,000 may be used to establish a council to help the carrier comply with federal disability rules and hire a manager for disability accommodations. Up to $140,000 may be used to develop and employ an automated wheelchair tracking system at AirTran’s major hub airports within one year that will generate real-time reports of the carrier’s wheelchair assistance performance.

The consent order is available on the Internet at www.regulations.gov, docket DOT-OST-2010-0005.

Disability activists thrive in a more open Syria

From The NY Times:

ALEPPO, Syria — For five years, Chavia Ali’s attempts to start a disability rights group were thwarted — by prejudice, a lack of money and the Syrian government’s stranglehold on civic life. The government gave her a license, but prevented the group from meeting because of what Ms. Ali believes was a whisper campaign against her, a Kurd with a growing profile.

Then everything changed.

Last year, Ms. Ali (pictured) was told that a third of her budget would be paid by a group led by Asma al-Assad, the wife of the Syrian president, Bashar al-Assad. Now Ms. Ali, 29, is everywhere, giving television interviews, speaking at ministry conferences and having her picture taken with the first lady.

The reversal of her group’s fortunes is part of an overture that government officials have described as a new embrace of civil society.

But the embrace is complicated. Even as doors have opened for a few people, like Ms. Ali, they have shut with increasing frequency on activists demanding greater political rights, according to human rights lawyers here. While some rights advocates welcome any opening, no matter how small, others say it extends only to groups that pose no challenge to the established order.

“Civil society means free people create free initiatives,” said one Syrian activist, one of many who, fearing government reprisal, requested anonymity. “How can un-free people do that?”

Ms. Ali embodies the conundrum. Her cousin was arrested this summer by the security services during one of their regular sweeps through Kurdish villages, but she refuses to talk about what happened.

“Some ideas you can’t touch,” she said. “I don’t want to go outside of my case. I am working on disabilities.”

It is a quandary faced by activists across the Middle East. In the narrow alleyways of civic life permitted by authoritarian governments in the region, opportunities exist as long as certain limits are observed. While foreign aid groups often cheer the explosive growth of organizations that help women, children or the environment, there are questions about whether the groups can change the political order.

As the world watches Syria emerge from years of international isolation, Syrians are watching the government play its strengthened hand at home.

“We are seeing changes,” said Bassam Haddad, director of the Middle East studies program at George Mason University. “The number of associations that are emerging is increasing. The number of concerns that are allowed to become public is also increasing. The whole process is blessed by the government. It has good intentions but built-in structural limitations.”

Professor Haddad said that in the 1990s, during a similar embrace of civil society groups, activists knew the changes were cosmetic but assumed that the very existence of new groups might hasten change. Few people have those illusions today, he said.

“I think the first thing that Syrians need to see is an end to arbitrary rulings that put away people based on their viewpoints,” he said. “That is something that stifles any kind of public debate about the important issues.”

Many rights advocates go further, dismissing the talk of civil society by the government as window-dressing while it continues to arrest Islamists, Kurds and other political opponents, along with the lawyers who represent them.

Civil society figures who cross the line, like Muhannad al-Hassani, can end up in jail. Mr. Hassani, a lawyer who used to monitor the trials of dissidents in the Supreme State Security Court, was disbarred for life last year, and in June was sentenced to three years in prison on charges that included “weakening national sentiment.”

Mrs. Assad’s efforts put a softer face on her husband’s policies and, within limits, appear to be doing some good. An organization she directs, the Syria Trust for Development, finances groups that work with women, rural residents, children and entrepreneurs. Its Web site says the trust is “at the forefront of the emerging N.G.O. sector in Syria, at a time when the country is actively pursuing a substantial agenda for change.”

The new groups might represent progress, but they also fill a need, as Syria copes with growing numbers of impoverished citizens. “The cultural reliance on the government for everything is not attuned to modern society,” said Imad Moustapha, Syria’s ambassador to Washington.

For her part, Ms. Ali has seized on the opening to find ways to integrate people with disabilities into society, and to help them become independent in a country that makes that nearly impossible. To spend time with her this month as she traveled around the country was to understand the depth of that challenge. Nearly everyone she met had to ask for help, to reach a second floor, to get more time to take an exam or just to be taken seriously.

Dependent on a wheelchair since contracting polio as a child, Ms. Ali began her journey as a rights activist when a college administrator laughed her out of his office when she asked him to repair an elevator.

He did not fix the elevator. She moved on to other battles.

One day this month in the Kurdish village where Ms. Ali was born, she visited a 27-year-old blind woman, Zahra Sheikhi, whose parents kept her and her sister, who is also blind, at home for all of their childhood, out of shame, Ms. Ali said.

With Ms. Ali’s help, Ms. Sheikhi has learned to play a lutelike instrument called the tanbour, occasionally performs in public and is hoping to move away from home. “My family is always around,” she said. “They don’t allow me to live.”

In Aleppo, where Ms. Ali lives with her parents, she visited Saghatel Basil, 33, a university student who lost his sight because of diabetes a few years ago. Mr. Basil said that Syria had recently installed traffic signals for blind people but that many of them did not work.

His disability had prompted Mr. Basil to try his hand at local government. “I am trying to improve the idea of citizenship,” he said. “It is still weak. Maybe because I’m blind, I have a big hope that things will change.”

A conference in Damascus this month, attended by Ms. Ali and the first lady, reflected another type of opening blessed by the government, the spate of recent visits by international groups.

An American nonprofit group, the Open Hands Initiative, brought young Syrians and Americans with disabilities together for what the group’s founder, Jay Snyder, said was an attempt at person-to-person diplomacy. Mr. Snyder said that his group’s trip to Syria was approved quickly and that no one from the government restricted what they could discuss.

“Part of the challenge we face in Syria,” Mrs. Assad said at the gathering, “is how do you take incredible people and incredible ideas and make them an incredible reality?”

A young man in a wheelchair, Abdulrahman Hussein, 20, offered an answer. “We should be doing something in our own countries,” he said. “We should not be sitting in a corner.”

NJ students with disabilities say they are glad the R-word is going away

From the Asbury Park Press:

TINTON FALLS, N.J. — Tyshon Woods, a student at the Arc of Monmouth's Dorothy B. Hersh High School here, pulls no punches as to how the word "retarded" makes him feel when directed at him and his friends.

"It makes me feel like less than what we are," said Woods, 20, of Long Branch.

A movement to end the use of that word, once used medically and professionally but now viewed by the special-needs community as a derogatory term, is growing throughout the country. On Aug. 16, Gov. Chris Christie signed a bill removing all usage of the word from state law.

Instead, the terms "intellectual disability" or "developmental disability" are to be used, according to the governor's office.

The terms "mentally retarded," "mental retardation" and "feeble-minded" are also to be changed to "developmentally disabled" and "developmental disability," according to the bill.

"Using antiquated, degrading terms to describe individuals with disabilities is an affront to the integrity of the person and their family, and below our common decency as a people," Christie said in a statement.

In addition to removing the offending language, another component of the legislation stresses the importance of "people first" language, referring to "people with disabilities" as such, rather than saying "disabled people."

The Arc of Monmouth is a nonprofit organization that supplies support, resources, education and job training and opportunities to people in Monmouth County with intellectual or developmental disabilities.

It is a local branch of the Arc of New Jersey, and larger, the Arc of the United States, which was once called the Association for Retarded Citizens, but dropped that name in 1991 because of complaints from members.

At the Arc of Monmouth's Work Opportunity Center in Long Branch, where about 150 people perform subcontracted work for hospitals and local manufacturers from Monday through Friday and receive a small wage for their work, a group of adults said the bill was important.

"We don't like to be called retarded," said Diana Donato, 54, of Ocean Township. "Some people do that, and they can hurt somebody else's feelings."

Matthew Nepper, 42, of Middletown recently attended a rally at Rutgers with Arc vocational counselor Heather Warner to speak out against the offensive word.

"It's a curse word to us," Nepper said.

Donato and Nepper are both members of an Arc-affiliated self-advocacy group, along with Craig Goldenthal, 50, of Marlboro, the group's president.

"I think it should be banned; I think it's not nice," Goldenthal said of the word. "That word should not be used at all. People should think twice before they talk."

Celine Fortin, associate executive director for the Arc of New Jersey, said the passage of the bill resulted from a largely grass-roots campaign organized by people with disabilities and their communities throughout the state, going back several years.

The N.J. Statewide Self Advocacy Network consists of more that 110 advocacy groups throughout the state, Fortin said.

For the 2007 general election, the network succeeded in getting a question placed on the ballot that asked to have the words "idiot" and "feeble minded" removed from the state constitution. The question ultimately passed.

From there, the network set forth on an even bigger goal, writing letters to legislators and newspapers, and visiting communities and schools, as members did with the ballot question, to limit the offending language even more, Fortin said.

Around that time, national discussion grew about the use of derogatory language to refer to those with special needs, Fortin said, spurred by the release of the movie "Tropic Thunder," which contained material offensive to some disability advocacy groups.

Through those discussions, it was revealed that many people did not realize they were causing harm through their choice of language, Fortin said.

"Words are critically important," said Renay Zamloot, a special education advocate based in Annandale, Clinton Township in Hunterdon County. "When people in a position of authority eliminate the use of derogatory language . . . it has the effect of trickling down into other areas of life."

Zamloot said she never hears the word "retarded" used professionally anymore. However, it is still prevalent in bullying cases, meaning young people are still using it as a slur to refer to their peers.

She hopes that the new legislation will set a trend to dispel offensive language against all forms of disabilities, she said.

"It's an important step in creating a more accepting atmosphere and also of understanding that we're speaking about people," she said.

Fortin said the next step is to remove the offensive language from federal legislation. The advocacy network has been speaking out in the community and continues to work with legislators to accomplish this goal, she said.

"With the passage of this bill, it's great because it's very visible, very public, and it makes everyone think about their language," she said. "We take that and we keep moving."

Still no answers from years of research about Alzheimer's

From The NY Times. In the picture, Elise Schoux has been more careful to exercise regularly and eat right as preventive measures since her husband, Bill, learned last year that he has Alzheimer’s.

BETHESDA, Md. — The scene was a kind of science court. On trial was the question “Can anything — running on a treadmill, eating more spinach, learning Arabic — prevent Alzheimer’s disease or delay its progression?”

To try to answer that question, the National Institutes of Health sponsored the court, appointing a jury of 15 medical scientists with no vested interests in Alzheimer’s research. They would hear the evidence and reach a judgment on what the data showed.

For a day and a half last spring, researchers presented their cases, describing studies and explaining what they had hoped to show. The jury also heard from scientists from Duke University who had been commissioned to look at the body of evidence — hundreds of research papers — and weigh it. And the jury members had read the papers themselves, preparing for this day.

The studies included research on nearly everything proposed to prevent the disease: exercise, mental stimulation, healthy diet, social engagement, nutritional supplements, anti-inflammatory drugs or those that lower cholesterol or blood pressure, even the idea that people who marry or stay trim might be saved from dementia. And they included research on traits that might hasten Alzheimer’s onset, like not having much of an education or being a loner.

It is an issue that has taken on intense importance because scientists recently reported compelling evidence that two types of tests, PET scans of Alzheimer’s plaque in the brain and tests of spinal fluid, can find signs of the disease years before people have symptoms. That gives rise to the question: What, if anything, can people do to prevent it?

But the jury’s verdict was depressing and distressing. So far, nothing has been found to prevent or delay this devastating disease, which ceaselessly kills brain cells, eventually leaving people mute, incontinent, unable to feed themselves, unaware of who they are or who their family and friends are.

“Currently,” the panel wrote, “no evidence of even moderate scientific quality exists to support the association of any modifiable factor (such as nutritional supplements, herbal preparations, dietary factors, prescription or nonprescription drugs, social or economic factors, medical conditions, toxins or environmental exposures) with reduced risk of Alzheimer’s disease.”

“I was surprised and, at the same time, very sad” about the lack of evidence, said Dr. Martha L. Daviglus, the panel chairwoman and a professor of preventive medicine and medicine at the Feinberg School of Medicine at Northwestern University. “This is something that could happen to any of us, and yet we are at such a primitive state of research.”

She said, “In the end, we concluded that the evidence is the evidence and we have to say what it is.”

The state of the evidence reflects in part the long time it took before researchers even realized that Alzheimer’s was a disease, said Dr. Richard J. Hodes, director of the National Institute on Aging. Until the mid-1980s, many thought dementia was a normal part of aging, and so serious studies of its causes and prevention did not really begin until then. Scientists have spent the years since searching for factors that might affect risk, checking data from other studies to see if, for example, diet or blood pressure or years of education might be associated with the disease.

In the meantime, doctors are in a bind. Should they tell people to do things like walk briskly or eat vegetables — activities that might someday be shown to protect against Alzheimer’s and that certainly cannot hurt? Or should they wait for absolute proof, confirmation that a diet or a drug or an exercise regimen prevents Alzheimer’s?

The Alzheimer’s Association tells people to exercise, challenge themselves mentally, remain socially engaged and keep their hearts healthy. Such measures can only help, says Dr. Maria C. Carrillo, a senior director of the organization.

But, she said, “The Alzheimer’s Association certainly agrees that there is not enough evidence to say anything definitive about the prevention of Alzheimer’s disease and any kind of intervention.”

Of course, Dr. Hodes said, there are many reasons to follow practices to improve general health. But, he said, researchers have to be careful about implying that any measures will protect against this degenerative brain disease.

“We don’t know that yet,” Dr. Hodes said.

Dr. John W. Williams Jr., head of the Duke group that evaluated the studies, thought the task would not be too arduous. He expected relatively few studies and clear results.

To its great surprise, the Duke group discovered a vast amount of literature on Alzheimer’s prevention. Instead of coming up empty on many topics, Dr. Williams said, “We came up empty on very few.”

The problem, the group wrote, was that “the quality of the evidence was typically low.”

Most studies observed people who happened to use or not use a possible preventive measure and then determined whether they got Alzheimer’s or not.

Such studies, known as observational ones, are not the gold standard, like those in which people are randomly assigned to take a pill or do something like exercise, or not. Observational studies are useful in generating hypotheses but are not proof. Still, if several well-done studies of this type come to the same conclusion, they can be valuable evidence.

In the case of Alzheimer’s prevention, though, the studies tended to have problems, Dr. Williams said.

Often it was not clear precisely what subjects were doing. They might have been using a drug or a supplement at the start of the study but the dose was not specified, nor was it clear whether subjects were taking the same doses, or for how long.

Some studies of drugs to lower blood pressure used self-reports as opposed to, for example, pharmacy data. A 12-year study asked participants about their use of cholesterol-lowering statins at the start of the study but never did again. A nine-year statin study used pharmacy records but included as users those who took the drugs at any time during the study period.

Definitions of conditions, like high blood pressure, tended to vary from study to study.

Descriptions of factors like “strong social support” were vague or idiosyncratic. For example, some studies classified married people as having strong social support for that reason alone, with no evaluation of whether the marriage was good or bad.

Often, there were vague assessments of Alzheimer’s disease. And often studies did not take into account other differences among subjects, like age or family history of Alzheimer’s, that might have independently led some to get the disease and others not.

Looking over the piles of studies, the group rated evidence as high, moderate or low, depending on how confident they were in the findings.

Low confidence did not necessarily mean the measures did not work — it meant the evidence was so faulty that there was no way of deciding.

In the end, it said it was highly confident in the findings for just one thing, the herb ginkgo biloba. But in that case the evidence pointed in only one direction: it did not prevent Alzheimer’s.

Moderate evidence, not totally convincing but not worthless, applied to only four factors studied.

Two were factors that increased risk. They were a particular gene, ApoE4, which, moderate evidence showed, increased risk about threefold, and menopause therapy with a combination of estrogens and progestins, which doubled risk.

The other moderate evidence indicated that certain things that had been hoped to be protective were not. For instance, there was moderate evidence that vitamin E, found in nuts, vegetable oils, green leafy vegetables and fortified cereals, had no effect on risk. There was also moderate evidence that cholinesterase inhibitors, drugs often used to treat Alzheimer’s symptoms, had no effect.

Other than that, evidence was poor.

There is only poor evidence, for example, that keeping your brain active, having a high level of education or exercising has a protective effect. There is also only poor evidence that eating a Mediterranean diet — high in fruits and vegetables, fish and olive oil — will help stave off Alzheimer’s.

There is only poor evidence that having poor social support or smoking increases risk.

In a way, it is not surprising that many thought the evidence was stronger than it was, says Dr. James R. Burke, a member of the Duke group and director of the Memory Disorders Clinic at Duke.

“You remember the positive studies,” Dr. Burke said. “The ones that are more marginal, you tend to put them out of your mind.”

And many things thought to protect against Alzheimer’s — a healthy diet, vigorous exercise and an active brain — just seem to be common sense. The science jury said it was still possible that those measures might be found to help and urged that better quality studies be done.

But that may not be so easy if studies have to follow people until they get the disease. Alzheimer’s seems to progress silently in the brain for a decade before the earliest symptoms of memory problems surface. It can take another decade until the distinctive signs of Alzheimer’s appear: profound memory loss and an inability to handle the normal activities of daily life like bathing and dressing.

“Once there is even minimal cognitive impairment, the brain is damaged, inflamed, burning like a bonfire,” said Dr. Caleb Finch, director of the Gerontology Research Institute at the University of Southern California.

As a result, high-quality studies of possible factors like diet and exercise or mental stimulation before the disease’s onset might have to last for decades.

In the meantime, patients, like those at Dr. Burke’s Memory Disorders Clinic, and their frightened family members want advice about things they can do now.

He tells them to do all they can to stay healthy: keep their heart disease risk factors under control, eat a good diet, exercise. He tells them that even if good health cannot prevent Alzheimer’s, it might delay its onset.

“We don’t have compelling evidence or proof that this will prevent Alzheimer’s disease,” he says. But those measures, he adds, “would improve quality of life.”

But Dr. Williams, head of the Duke group, said it was also important to keep an open mind; the measures may or may not affect a person’s chances of getting Alzheimer’s.

“Unfortunately, in medicine,” he said, “things that are logical and make good sense don’t necessarily work out.”

The Problem, Personified

Elise Schoux of Washington is facing the prevention problem. She is 53, an age when prevention might make sense — when Alzheimer’s strikes, people usually are in their 70s and 80s — and she is watching her 70-year-old husband’s slow decline into the dread disease.

Bill Schoux’s memory had been deteriorating for years, but in July 2009, when he got the diagnosis, Mrs. Schoux was devastated.

“For two weeks, we were at a loss, we would burst into tears,” she said. “How could this be?”

Mr. Schoux had been an athlete all his life, he ate a healthy diet, he was friendly and outgoing. He had been an expert on foreign aid, traveling around the world, and had certainly had a mentally stimulating career. Mrs. Schoux is not sure how much more her husband could have done to ward off Alzheimer’s. But she wants to do everything she can to protect herself from getting it and to slow the disease in him.

So Mrs. Schoux now unfailingly goes to the gym with her husband several days a week, lifting weights and spending 30 minutes on a treadmill or an elliptical cross trainer.

Her husband always worked crossword puzzles. Now she does them, too. She and her husband have a subscription to a local theater. And they read the newspaper every day.

“It can’t hurt to keep the brain cells moving,” Mrs. Schoux said.

Mrs. Schoux also tries to eat blueberries, salmon, intensely colored fruits and dark leafy vegetables, in case that helps.

She knows that much of what she is trying is unproved but feels that it can, at worst, be harmless.

“I don’t know what the answers are,” Mrs. Schoux said. “I hope they find something. It is a seriously debilitating disease.”