Legally blind woman hopes to "run" onto Ellen DeGeneres show

From The Missoulian in Montana:

Rhonda Copeland is running to “The Ellen DeGeneres Show” in Burbank, Calif. - without ever leaving Missoula.

Copeland, who is legally blind and calls herself the Vision Runner, carries a white cane while she runs around town racking up 1,222 miles, the distance to the daytime talk show's studio.

Her route in Missoula runs along South Avenue to Big Flat Road, where she turns around.

Copeland calls hers a virtual run because, for safety and logistics reasons, she cannot actually jog to California.

She wants to average 36 miles per week for 34 weeks to complete the distance by mid-December, hopefully in time to make it on the show; already, she has run more than 20 percent of the mileage.

Copeland chose “The Ellen DeGeneres Show” because she has watched it for years, and she is an advocate of DeGeneres' style of motivation.

DeGeneres is proactive, Copeland said. “If you want something, go out and do it.”

Copeland's goal for her run is to help others by raising $30,000 along the way for Guide Dogs for the Blind.

A Missoula native, Copeland was diagnosed 12 years ago with retinitis pigmentosa, a genetic eye disease, and she has gradually been losing her eyesight.

Copeland has been running since 1992, and she refuses to give it up. Running is supposed to be one of the easiest sports, she said. But with her deteriorating vision, it now takes her 15 to 20 minutes to get ready to run with the flashers and road identification she wears.

She's not discouraged, though. Two years ago, she ran in the first Missoula Marathon, but she worried she would get lost because she had found herself off course in other races. But with volunteers at every corner, she successfully navigated the route.

“It was great - a blind person couldn't get lost,” Copeland said, laughing.

Copeland had to give up driving, reading novels (unless the type size is enlarged on a computer), bike riding, photography and making crafts.

“Sometimes I rely on the help of strangers, and they're more than willing to help,” she said. “It says a lot for humanity, I think.”

Over the past six months, she has been using a white cane, enabling her to walk and run without animal assistance.

Others with vision impairment do require more assistance, however, which is why Copeland has chosen to raise money for Guide Dogs for the Blind, an organization entirely dependent on private donations. It pairs guide dogs with the visually impaired for free.

“To me, it's hugely important to be independent,” Copeland said. “Everyone wants to have a sense of independence.”

Copeland thinks her goal of $30,000 should be achievable through grass-roots fundraising. She emphasizes the importance of a donation of $1, which would mean 30,000 people would need to contribute.

“It's a lot of people donating just a little money to make a huge difference in the world,” Copeland said.

People can make donations at the Web site RunOverToEllens.com. Through blogging and shooting videos daily, Copeland keeps her progress up-to-date for followers, and those who make donations gain access to special videos and information.

Copeland also hopes the blog can be an inspiration for people. After visiting the site, she said they might decide to make the changes they need to improve their outlook on life.

“You can envision a new reality for yourself,” she said.

Rather than looking at her loss of vision as an impairment, Copeland looks at her situation as opening up an opportunity - if she hadn't lost her eyesight, she wouldn't be running for charity, she said.

With Guide Dogs for the Blind and empowering others in mind, Copeland has been working on contacting “The Ellen DeGeneres Show” staff by e-mail, Twitter and sending in a package with video and news clips. If the show recognizes her project, she is confident the fundraising will take off.

Copeland's goals are short term, because of her vision. If she loses one important cell, certain activities, such as running, could suddenly become unsafe for her, limiting her future plans.

Meanwhile, she is shooting for exposure for her cause, and running around Missoula helps.

“I'm visible,” she said. “Hopefully people will say, ‘Oh, there's that Vision Runner.' ”

Disabled people in Utah press Transit Authority to reconsider paratransit rate hikes, lessening of van services

From the Salt Lake Tribune:

Some disabled bus riders and advocates who are trying to fend off a paratransit fare hike rode a FrontRunner train from Salt Lake City to Ogden on June 2 looking for a sympathetic ear.

Frustrated by the Utah Transit Authority's plan to bump paratransit fares from $2.50 to $4 and to halt van service beyond three-quarters of a mile from regular bus routes, 13 riders went to the office of Robert Hunter, UTA board member and United Way of Northern Utah president.

They chose Hunter, according to Barbara Toomer of the Disabled Rights Action Committee, because they believed his role with the United Way would make him sensitive to the concerns of the neediest Utahns.

"We feel it's a definite problem," Toomer said, "when he gives to the poor as United Way chair and then takes away from the poor with the UTA."

Reached after the meeting, Hunter said it was inappropriate to link his duties with the United Way and UTA. "They're two separate things."

Nonetheless, Hunter said he appreciates the difficulties the riders face, especially given that some had to negotiate the trains and buses for several hours to reach his office.

Hunter said he has not decided how to vote, though he found the meeting constructive. At first he felt "blindsided," he said, because he had expected only a couple of people. By meeting's end, though, he said he had gained perspective on their individual transportation challenges.

Toomer said several who met with Hunter have mental or traumatic brain disabilities and normally need dispatched paratransit vans to deliver them. They reached Hunter's office by train and then bus with the larger group's assistance.

UTA's board could vote on the paratransit proposal June 24 or July 22, spokesman Gerry Carpenter said. The agency is seeking to fill a budget gap created by declining sales-tax revenues -- money that the disabled riders propose could come instead from a 10-cent fare hike on all riders.

India sees an increase in polio cases

From Indian Express:

NEW DELHI -- Though India has reported double the cases of virulent Wild Poliovirus type 1 (WPV1) this year as compared to last year — while there were only five cases of P1 virus last year till this time, as many as 18 cases have come to light this year — the India Expert Advisory Group (IEAG), an expert body to the Government of India on polio, had projected that transmission of the virulent virus could be “stopped” by mid-2009, provided its recommendations were implemented.

“If recommended activities are implemented, the IEAG expects only sporadic cases of WPV1 to be detected in the next six months and considers that WPV1 transmission in India could be interrupted by the end of the low transmission season in 2009,” the IEAG had said.

Among the various recommendations which the IEAG had made at their meeting in November last year was to give injectable polio vaccine (IPV) in the high-risk districts of Uttar Pradesh. Six months on, the recommendation is yet to be implemented.

Officials in the Union Health Ministry, however, maintain a study by the Indian Council of Medical Research (ICMR) is going on in the most endemic areas. “The ICMR is in the process of doing comparative studies of vaccines among children who have been given MOPV1, a high titre MOPV1, IPV full dose and fraction dose of IPV. The blood samples of the children have already been taken. However, the ICMR is yet to give the go-ahead,” said a senior official in the ministry.

Minnesota legislator receives a hero's welcome for saving disability services from more budget cuts

From The Daily Globe in Minnesota:

WORTHINGTON, Minn. — Dist. 22B Rep. Rod Hamilton (right in picture) got a hero’s welcome June 1 — and a Superman cake, too.

Area disability providers, along with other citizens and clients, were present at the Client Community Services Inc. building, surprising Hamilton with an event coordinated to thank him for his efforts to reduce funding cuts for people with disabilities and their caregivers.

“We’re here to thank our hero, Rod Hamilton,” said CCSI Executive Director Marty Rickers, who helped organize the event.

“I thought I was coming down to have a cup of coffee and visit about a couple of things going on at the Legislature,” said Hamilton, R-Mountain Lake.

Hamilton described how he took an abandoned amendment to the House Health and Human Services Funding Bill offered by another legislator and moved it forward.

“As I’m listening, I’m thinking, ‘I’m absolutely going to support that,” Hamilton recalled of the amendment, which was withdrawn shortly afterward. “I then resubmitted the exact same amendment, and put ‘Hamilton’ on that.’”

The chair of the Ways and Means Committee, however, said the amendment wasn’t in balance, so Hamilton decided to withdraw the amendment and do the research necessary to fiscally restructure it. In the end, an amendment that reduced funding cuts for disabilities and caregivers by 2.58 percent passed.

“It’s all about setting priorities,” said Hamilton, who was visibly emotional upon starting his remarks. “I’m not the most educated person up there, not the smartest person up there, but I do what I can to get involved, and gather as much information as I possibly can to make the right decision.

“One of the biggest benefits of this was when I went to Windom … and met a number of individuals,” added Hamilton, who recognized numerous caregivers and clients by name. “Just to hear the stories of the people who provide the services and why they do it, those folks that I’ve met have made a huge impact.”

Hamilton called the representation of the disability services sector at the Capitol during the legislative session “phenomenal.” He also urged those same individuals to be active, as the looming budget unallotments by Gov. Tim Pawlenty could result in significant budget changes in several areas.

“I would really stress the position the House and Senate took on the 2.58 percent, and to get engaged and do it now,” he said. “l’d be contacting the governor’s office ... and sending letters to the Department of Health and Human Services. It’s (unallotment) going to happen in July or before, so get started right now.”

Hamilton also reflected on the just-completed session, acknowledging the frustrations he said both legislators and Minnesota citizens feel from the outcome.

“The unallotment process, I absolutely hate it,” Hamilton said.

“Regardless of whether or not you agree with Gov. Pawlenty, what he had said early on is, one, it’s constitutionally required to balance our budget, two, we need to live within our means, and three, we don’t raise taxes in the worst recession in 60 years. You have five months to get it done,” Hamilton continued. “It can be argued that we did collectively have the chance. … We didn’t take that for whatever reason, and now we have unallotment.”

Hamilton noted he was upset by Republicans’ receipt of a 40-page budget package 10 minutes before the legislative session was scheduled to expire, leaving no time to read the proposal and ask questions. He also was disappointed with other components of the session.

“Where I was extremely upset ... I found it extremely difficult that were passing bailouts for Xcel Energy and building trails versus funding other needs,” he said. “It’s extremely difficult to be building hockey arenas ... the list goes on and on.”

Hamilton added that an override to Pawlenty’s budget veto never gained momentum because of the “quiet” of citizens this time around — in comparison to the push by the Minnesota Chamber of Commerce and other entities to override last year’s transportation bill, when Hamilton was one of six House Republicans to vote against his same-party governor.

CCSI’s Rickers was one of the many who offered thanks to Hamilton Monday afternoon.

“I think you are the most responsive person I’ve met in your position, and I really appreciate that,” Rickers said.

Also attending Monday’s event was Robert Vanasek, a former DFL legislator from New Prague who served as House Speaker during gubernatorial terms of Rudy Perpich and Arne Carlson.

Cambodia's government vows to enforce new disability law

From The Phnom Penh Post in Cambodia:

The government's construction office has not yet assessed the impact on the sector of a new disability law passed last week but a senior ministry official said the law would be enforced.

"We must be responsible," said Im Chamrong, director general of the construction department at the Ministry of Land Management, Urban Planning and Construction.

"The Ministry of Land Management will require that all buildings have disabled access for disabled people."

He acknowledged Monday that he was not aware the law had been passed May 29 by the National Assembly but said he was confident that most developers already considered disabled access. It was also among the criteria considered by the ministry when approving developments, he said.

However, Ngin Saorath, executive director of the Cambodian Disabled People's Organisation (CDPO) told Prime Location last month that 95 percent of public buildings in Cambodia did not have disabled access. There are more than 550,000 persons with disability in Cambodia, according to the CDPO.

The law, which was passed after more than 10 years of discussion, requires equal access to public places, including buildings, for people with disabilities.

Public places are defined as "areas, buildings, premises and transportation means owned by state, public or private entities which are open to general public such as ministries, departments, institutions, roads, resorts, cultural centres, sporting places, recreational places, educational establishment, hotels, hospitals, health centres, restaurants, transportation systems, etc".

Handicap International said in a media statement it was pleased to see the goverment was taking its responsibilities to protect and promote the rights of persons with disability seriously.

"This legislation is a landmark accomplishment that will serve to improve the lives of hundreds of thousands of Cambodian persons with disability and, by extension, improve the lives of all Cambodian people," the statement read.

Ngin Saorath said CDPO would keep a close eye on the government to ensure the law would be followed.

"We will observe the government to ensure it implements the law," he said.

"If not, we will give the government more ideas for protecting the rights of disabled people to a better life."

One in three women arrested has a mental illness, new study says

From The Herald-Tribune:

A new study published June 1 found 31 percent of women enter jail with serious mental illnesses, making them more than twice as likely to need treatment as men.

The Council of State Governments Justice Center and Policy Research Associates studied 20,000 people entering jails and found that 17 percent of them had a serious mental illness. That is up to six times higher than the general population.

"While there are people with mental illnesses that need to be incarcerated, the findings confirm that more needs to be done to address the large numbers of men and women who would be more effectively treated in the community to stop the cycle of contact with the criminal justice system," the justice center said.

Media watchdog group says "Britain's Got Talent" producers should have provided better support for a vulnerable Susan Boyle

From The Telegraph in the UK. In the picture, Susan Boyle is photographed going into her home in Scotland. A NY Times op-ed discusses Boyle in the context of disability, low expectations and performance, and a Reuters article calls the Boyle phenomenon a cautionary tale for our celebrity obsessed society.

The makers of Britain's Got Talent are facing a possible Ofcom inquiry into their handling of Susan Boyle after she was admitted to the Priory clinic amid fears for her mental health.

Producers only provided a counsellor for Boyle at the beginning of last week, despite the strains of the media spotlight mounting far earlier in the show.

The 48-year-old, who suffers from learning disabilities as a result of being starved of oxygen at birth, became an international sensation after her first audition was televised on April 11.

Matters came to a head after Boyle lost Saturday night's final and was reported to have thrown water over a producer backstage. On Sunday, she was seen by a private GP at her hotel before being taken by ambulance to the north London clinic, suffering from "emotional exhaustion".

Ofcom, the media watchdog, has received a number of complaints about Boyle's participation in the show. John Whittingdale MP, chairman of the Commons culture, media and sport committee, said the programme-makers had questions to answer about their duty of care to such a vulnerable contestant.

"There is at the very least an argument that it could be investigated by Ofcom as a potential breach of the broadcasting code - that they failed to protect her. If such things are not part of the code, then perhaps they should be. When you are dealing with people who find it difficult to cope with media pressure, then the programme-makers who have brought it about have a responsibility to ensure they are properly looked after," Mr Whittingdale said.

"Susan Boyle has a tremendous talent but plainly she has had the most extraordinary degree of exposure, to an extent which nobody has had before. It is perfectly understandable that somebody like her, who lives alone and comes from a very humble background, would find it hard to deal with. I would expect that the programme-makers help her as much as possible.

"It is a sad story. But the fact that somebody from her background can demonstrate this extraordinary talent is a positive story. But should Susan Boyle have had the chance to sing? Yes."

Mencap, the learning disability charity, said the makers of Britain's Got Talent should have provided Boyle with extra support.

"Anyone who shoots to international fame would need support, whether they have a learning disability or not, but if you have a learning disability you would need extra help in dealing with the new situations that Susan found herself in. From the reports we have seen, that bit of extra support would probably have helped her through," a spokesman said.

Britain's Got Talent and Syco, Simon Cowell's company, are paying for Boyle's medical treatment. A programme spokesman said: "We provided Susan with a counsellor in the last week when it became evidence to us in the run-up to the final that she needed support. The attention which has surrounded her is absolutely unprecedented and overwhelming. Susan is now taking a few days out to get some rest and recovery out of the spotlight."

Youth athletes with disabilities prepare for National Junior Disability Championships in July

In the picture from TampaBay.com,

Heather Haynie, 17, of Zephyrhills, Fla., winds up for a discus throw at All People's Life Center in Tampa.

The double amputee will compete in the National Junior Disability Championships in St. Charles, Missouri, July 25 - August 2.

Haynie has competed in the national championships several times and also represented the United States in the International Wheelchair and Amputee Games. Her personal best is 21.74 meters.

Her coach Andy Chasanoff belives she could qualify for the 2012 Paralympic Games in London.

Here's information about the National Junior Disability Championships: NJDC began in July 1984 as a small meet sanctioned by Wheelchair Sports, USA for wheelchair athletes ages six to twenty-one.

Since that time, the NJDC has grown to include over 250 athletes with cerebral palsy, visual impairments, spinal cord insult, and limb deficiencies from all over the United States and several foreign countries.

The NJDC is sanctioned by Wheelchair Sports, USA and is recognized by Disabled Sports USA and the United States Association for Blind Athletes. Previous locations for the championships include New Jersey, Connecticut, Florida, Oklahoma, Colorado, Arizona, Washington, California and Alabama.

At each National Junior Disability Championships, competitions are held in Olympic-style events including track, field, pentathlon, swimming, archery, table tennis, 3-on-3 basketball, and weightlifting.

A dedicated team carries on the work of a scientist who always believed the Down syndrome gene could be linked to tumor prevention

From The Boston Globe:

It is a scientific riddle that has stumped, and deeply intrigued, specialists in cancer and genetics for decades: Why do people with Down syndrome so rarely develop life-threatening tumors?

The famed Boston scientist Judah Folkman (pictured) puzzled over the question for decades, since encountering it on an exam as a young medical student.

Now, 17 months after he died, researchers in his lab at Children's Hospital Boston have found an answer, and their discovery could provide a beacon to scientists developing treatments and preventive medications designed to be broadly effective against cancer, wherever it resides in the body.

The scientists discovered that the extra chromosome carried by people with Down syndrome - which causes the condition's distinctive features - harbors a gene responsible for starving tumors of the blood they need to survive and flourish.

That had been Folkman's suspicion all along.

"Most people don't appreciate the fact that these individuals with Downs potentially hold a secret that might lead to quite substantial and revolutionary new treatments for cancer," said Dr. David Sweetser, who treats patients and researches cancer at MassGeneral Hospital for Children but was not involved in the Downs project. "The obvious hope is that this is going to give us information to help develop a tool that we could use to treat a whole variety of solid tumors."

In many respects, the discovery, detailed last month in the journal Nature, is a textbook example of scientific serendipity.

As a junior researcher, Sandra Ryeom wanted to better understand a protein called calcineurin - and, more specifically, what controls its activity in humans. It was a subject of intense interest because the protein plays a sometimes lethal role in causing transplanted organs to be rejected by recipients.

Six years ago, Ryeom and other scientists identified the genetic mechanism that acts like an on-and-off switch for calcineurin.

"At that point," Ryeom said, "it was not looked at in terms of cancer, blood vessel growth, or Down syndrome."

That changed soon enough when Ryeom recognized where that gene lives in the human body: on chromosome 21. That is the same chromosome that exists in triplicate in people with Down syndrome. Most people inherit chromosomes in pairs. But it is the third chromosome 21 that produces the external physical features and internal medical problems associated with Down syndrome, including heart defects, respiratory problems, and Alzheimer's disease.

At the same time, experiments were showing that the gene had a significant effect in stanching the growth of blood vessels that nourish tumors.

It was like watching the pieces of a puzzle assemble: Could this gene, found on the same chromosome that defines Down syndrome, be especially bountiful in people with Down and, thus, responsible for depriving tumors of what they need to grow?

Epidemiologic studies of thousands of people with Down syndrome - there are more than 400,000 in the United States - have shown they are less than 10 percent as likely to die from solid tumors as their comparably aged peers, and that has remained true even as scientific advances allow people with the syndrome to live deeper into adulthood. Curiously, though, Down syndrome appears to increase prospects of being diagnosed with leukemia, a blood-borne cancer.

"The way that cancer affects people with Down syndrome is just so intriguing from both perspectives," said Dr. Jeffrey Toretsky, a pediatric oncologist at Georgetown University's Lombardi Comprehensive Cancer Center. "Why do they get more leukemias but fewer solid tumors?"

Ryeom and the other scientists embarked on a series of tests exploring the tumor part of the equation. Test after test, the evidence accumulated.

One experiment confirmed that people with Down syndrome have elevated levels of the gene, which is known by different names, including DSCR-1: Down syndrome candidate region-1.

In another test, mice were bred with three copies of the DSCR-1 gene - meant to mimic the three copies in humans with the syndrome - and then injected with cancer cells. Those mice wound up developing tumors that grew only half as fast and were half as large as in normal mice.

Finally, stem cell pioneer George Q. Daley of Children's Hospital harvested skin samples from adults with Down syndrome as well as from other people. Using genetic technology, the skin was transformed into human stem cells that, in turn, were injected into mice. The potent stem cells divided chaotically, spawning harmless tumors that proved to be ideal models for studying blood vessel development.

The result: The benign masses stemming from the Down syndrome stem cells showed almost no blood vessel formation, a stark comparison with robust vessel growth in the other tumors.

The findings led researchers to conclude that having the extra supply of DSCR-1 genes was a significant - although not complete - factor in preventing tumor blood vessel formation in people with Down syndrome. They also mined evidence that a second gene out of the 231 on chromosome 21 impedes vessel growth.

Researchers from Children's, as well as independent specialists, predicted that the discovery could guide development of drugs to mimic the effect of Down syndrome in patients stricken with cancer. But they went further, suggesting that one day, healthy adults might regularly take a pill to prevent the rogue blood vessels from forming and, thus, stop microscopic tumors from turning into something dangerous.

But any drug to prevent cancer would have to clear a far steeper safety hurdle than medications given to patients who already have life-threatening tumors.

"Cancer prevention strategies are really the holy grail, but they're tricky because you have to use an approach that is nontoxic and that people can be exposed to for years and years," said Dr. Crystal Mackall, chief of pediatric oncology at the National Cancer Institute.

The discovery emerges at a time when much of the cancer research world is obsessed with developing personalized treatments, rather than approaches to more broadly defeat the disease. To his last day, the charismatic Folkman subscribed to a vision of cancer treatment that could help the greatest number of patients. His work, scorned for years until being embraced in many corners, provided the blueprint for drugs such as Avastin, a medication shown to choke off the blood supply to tumors and slow vision loss in patients with leaky blood vessels in their eyes.

Folkman's death in January 2008 occurred as the Down syndrome researchers were about to begin tumor experiments in mice.

"He never got to see it come to fruition, which is really unfortunate," Ryeom, one of his scientific progeny, lamented. "But somehow, I just think he knows."

Pennsylvania disability advocates rally at state capital

From the Pittsburgh Post-Gazette:

HARRISBURG -- A group of disabled people railed against a state Senate-passed budget proposal May 31, saying that deep cuts to key programs would force more disabled people out of their homes and into nursing homes.

"This is a prison sentence for people with disabilities," said Sandi Weber of the North Hills, a member of the Disability Budget Coalition. "This budget makes no sense."

The coalition wants $435.1 million spent on key programs such as personal assistants for the disabled, long-term care for elderly and short-term equipment loans. The $27.3 billion Republican budget, which still needs House action, would cut that request by 10 percent. Coalition members called that fiscally and morally irresponsible.

June 30 is the deadline for approving a new state budget on time. The coalition's rally highlighted the large divide between Democratic Gov. Ed Rendell and Senate Republicans as they stare down a revenue shortfall of at least $3 billion. Mr. Rendell has proposed spending $29 billion in fiscal 2009-10, considerably more than the GOP.

Rendell aide Chuck Ardo and Johnna Pro, spokeswoman for Rep. Dwight Evans, D-Philadelphia, agreed that cuts to social services would affect some of the state's most vulnerable citizens.

"Local taxpayers [somehow] will end up picking up the cost if the state cuts funding," Ms. Pro said. "Practically speaking, a small increase in the [personal income tax] would help us to lessen the impact of the financial crisis. Politically speaking, that's a little more difficult."

Some spending cuts, federal stimulus money and part of the state's Rainy Day Fund also would have to be included in the budget, she added.

But Senate Republican spokesman Erik Arneson said the severe revenue shortfall meant that many "important and worthwhile" budget items had to be cut to balance the budget without any new taxes. Mr. Arneson said GOP senators are "overwhelmingly" hearing their constituents call for spending cuts, not tax increases.

But coalition co-chair Linda Anthony said the cost to the state would ultimately increase if the cuts are made. Some disabled people might be placed in "germ-infested" nursing homes and the state would end up paying more to support them there, she claimed.

"There are those that say 'no tax increases,'" Ms. Anthony said. "We say, 'If it means we will live free, if it means we will get to keep working and paying our taxes, and if it means we will get to grow old beside the one we love, then taxes we will pay.'"

Members said they supported the Rendell budget proposal, which roughly maintains funding for key programs in their agenda.

In recent years, the state has invested in home and community-based programs that have improved access to services and created greater independence for those with disabilities, coalition spokeswoman Terry Roth said.

Intellectually disabled people stuck in psychiatric hospitals in Scotland because of shortage of community care, report says

From The Scotsman in the UK:

People with learning difficulties have been "bed blocking" in the city's psychiatric hospital for up to nine years, a charity said today.

There are at least 15 people in Morningside's Royal Edinburgh Hospital who are ready to go back into the community but have nowhere to go. As a result they are either staying on learning disability wards, or being placed alongside people who have far more profound psychiatric conditions.

Capital organisation Powerful Partnerships said it had 15 clients who had been waiting in the hospital for anything between six months to nine years in the most extreme case. That patient has serious learning disabilities and does not have the mental capacity to make his own decisions.

He has been a "voluntary" resident at the hospital for nine years, even though he is clinically ready to rebuild his life outwith hospital grounds, because a care package cannot be agreed for him.

He is one of many, according to Powerful Partnerships, an organisation that offers advocacy to people with learning disabilities.

The charity's project worker Daniel Curran said recent headlines saying there were no cases of long-term bed blocking in Edinburgh did not paint a true picture of the position.

He said: "It's costing the health board thousands, it means there aren't enough beds for those who come in with learning disabilities, and means other people are placed inappropriately in other wards where the nurses aren't trained to deal with them.

"There are all kinds of reasons for it, sometimes the NHS and council can't agree on a care package depending on what nursing would be required, sometimes they are waiting for a social work assessment. Some feel they have to stay there because they've never been given any other option."

The council said last month that targets on bed blocking – 'delayed discharge' – had been met for the first time. But these didn't include psychiatric patients.

Mr Curran said: "We had one man who was ready to leave but hadn't been assessed, and by then the prospect of staying in the ward had concerned him so much that his mental health worsened."

A document produced jointly by the health board and city council said: "The Royal Edinburgh is experiencing a high level of impending delays caused by the temporary accommodation of between six and ten learning disability patients per month.

"This situation has been compounded by delays in the opening of new supported accommodation units.

"In the meantime we are exploring options to expedite the pace of discharges for learning disability patients who do not require acute mental health beds, into more appropriate placements."

U.S. Supreme Court approves new hearing in Ohio over death row inmate's MR status

From The New York Times:

WASHINGTON — Elaborating on its 2002 decision banning the execution of the mentally retarded, the Supreme Court unanimously ruled on June 1 that prosecutors in Ohio should have a new opportunity to prove that a death row inmate there was not retarded and thus was eligible to be executed. The prosecutors were not bound, the court said, by statements in court decisions issued before 2002 saying that he was retarded.

The inmate, Michael Bies, was convicted in 1992 of kidnapping and murdering a 10-year-old boy. At the time, mental retardation was a factor that juries could consider in deciding on the proper sentence.

During the sentencing hearing in Mr. Bies’s case, the jury heard testimony from a psychiatrist who said Mr. Bies was “mildly mentally retarded to borderline mentally retarded.” The psychiatrist said that Mr. Bies’s I.Q. was in the “65 to 75 range” and that he “carries out the activities of daily life fairly independently.”

The jury recommended a death sentence without indicating what role the evidence about retardation had played in its decision, and the trial judge accepted that recommendation.

In affirming Mr. Bies’s conviction and sentence, state courts in Ohio said he suffered “mild to borderline mental retardation” that warranted some weight in determining the proper sentence. But they found that other factors were more important and justified a death sentence.

When the Supreme Court banned the execution of retarded offenders in Atkins v. Virginia in 2002, it did not specify how states were to determine retardation. The Ohio Supreme Court later ruled that defendants claiming retardation must prove three things: “significantly sub-average intellectual functioning,” which would be presumed if the defendant’s I.Q. was under 70; a lack of two or more fundamental social and practical skills; and that both conditions were present before age 18.

Last year, a unanimous panel of the United States Court of Appeals for the Sixth Circuit, in Cincinnati, said prosecutors had “litigated and lost the issue of petitioner’s mental retardation” and could not reopen the question. The court ordered that Mr. Bies be “resentenced to receive a sentence other than death.”

But Justice Ruth Bader Ginsburg, writing for the Supreme Court in the case, Bobby v. Bies, No. 08-598, said the state courts had not “devoted detailed attention to the issue of mental retardation.”

“No court found, for instance,” Justice Ginsburg wrote, “that Bies suffered ‘significant limitation in two or more adaptive skills.’ ”

Mr. Bies’s lawyers argued that requiring a new hearing on the question of retardation would subject their client to a form of double jeopardy. Justice Ginsburg said double-jeopardy protection was unavailable to Mr. Bies because he had not prevailed at his trial and because the court determinations concerning retardation were not necessary to the outcomes in the earlier proceedings.

The lower federal courts should have allowed the state court to go forward with a hearing on whether Mr. Bies was indeed retarded, Justice Ginsburg concluded. “Recourse first to Ohio’s courts is just what this court envisioned,” she wrote, “in remitting to the states responsibility for implementing the Atkins decision.”

New study shows antidepressant doesn't help children with autism

From the Los Angeles Times:

An antidepressant commonly prescribed to help autistic children control their repetitive behaviors is actually no better than a placebo, according to a report published June 2.

Roughly a third of all children diagnosed with autism in the U.S. now take citalopram, the antidepressant examined in the study, or others that are closely related. The results of the nationwide trial, published in Archives of General Psychiatry, have some experts reconsidering the appropriateness of antidepressants and other mind-altering drugs used to treat children with autism spectrum disorders.

"There are tons of things being advocated as treatments for autism, some with appropriate caveats and careful explanations, others without any of that," said David Mandell, associate director of the Center for Autism Research at Children's Hospital of Philadelphia, who wasn't involved in the study.

An estimated 1.5 million Americans have autism, a group of poorly understood developmental disorders characterized by problems with communication and social interaction. One of the hallmarks of the disorder is obsessive, repetitive behavior such as flapping one's arms or hands or memorizing car makes and models. When those routines are interrupted, severe tantrums can result.

Only one medication -- the antipsychotic drug risperidone -- has been approved by the Food and Drug Administration for the treatment of irritability and aggression in children with autism. But doctors, frustrated by their limited options, haven't shied away from giving other pharmaceuticals a chance. Worldwide spending on drugs to treat autism is estimated to be $2.2 billion to $3.5 billion annually.

Because very few medications have been tested on autistic children in large, rigorous studies, doctors have looked to drugs that treat similar symptoms in other conditions, such as obsessive-compulsive disorder or attention-deficit hyperactivity disorder.

That's what led physicians to a class of antidepressants called selective serotonin reuptake inhibitors, or SSRIs, that help adults with obsessive-compulsive disorder. Their repetitive rituals, such as counting, cleaning or hand-washing, are reminiscent of the behaviors seen in autistic patients.

Doctors were also hopeful about SSRIs because the serotonin system is known to function improperly in people with autism.

But the medications will work only if the root causes of obsessive-compulsive disorder and autistic repetitive behavior involve the same biological pathways in the brain. The new study strongly suggests they do not.

"It just begs for a more careful understanding of the neurological underpinnings of the disorder," Mandell said.

Dr. Bryan King, director of psychiatry and behavioral medicine at Seattle Children's Hospital and leader of the study, said he was shocked to find that citalopram didn't help patients. Not only was the placebo slightly more effective, but the drug's side effects -- such as impulsivity and insomnia -- were at least twice as bad, the study found.

"I personally would have a healthy dose of skepticism about" prescribing citalopram or other SSRIs, King said. Citalopram is sold in the United States under the brand name Celexa.

In the study, King and his colleagues from six academic medical centers, including UCLA, enrolled 149 autistic children ages 5 to 17 whose compulsive behaviors were classified as moderate or worse. After 12 weeks, 33% of the 73 patients who took citalopram had improvements in repetitive behaviors as measured by clinicians and parents, versus 34% of the 76 patients who took a placebo.

If there hadn't been a control group for comparison, King said he would have been impressed by the improvement seen in the children who took the drug. "The decision would most definitely have been made to continue them," he said.

The study underscores the value of evaluating drugs in randomized, double-blind, placebo-controlled studies, which are considered the gold standard of medical research, Dr. Fred R. Volkmar, director of the Yale Child Study Center in New Haven, Conn., wrote in a commentary that accompanied the study. In such studies, neither patient nor doctor knows who is getting the drug and who is getting the placebo until all the results are in.

"We need more studies of this kind to advance research and guide clinical practice," Volkmar wrote.

Placebo-controlled studies are especially important in evaluating medications to treat behavior and mood because patients are typically in a crisis state when they enroll in a clinical trial and could improve on their own in time, Mandell said.

What's more, the attention focused on children when they are in a trial tends to improve their behavior all by itself, Volkmar said in an interview.

The study was funded by the National Institutes of Health. King and several of his colleagues have received research grants and other funding from pharmaceutical firms, including Forest Laboratories Inc. of New York, the maker of Celexa.

Folic acid has even more benefits during pregnancy, new research shows

From The AP:

WASHINGTON — Baby-protecting folic acid is getting renewed attention: Not only does it fight spina bifida and some related abnormalities, new research shows it also may prevent premature birth and heart defects.

Now pregnancy specialists are asking if it's time for the government to boost the amount being added to certain foods to help ensure mothers-to-be get enough. But for older adults, there may be a down side to the nutrient: Extra-high levels late in life just might pose a cancer risk.

"Folate is assuming the role of a chameleon, if you will," says Dr. Joel Mason of Tufts University's nutrition research center, who is researching that possible risk.

Folic acid is an artificial version of folate, a B vitamin found in leafy green vegetables, citrus fruit and dried beans. Everyone needs regular folate because it's important for healthy cell growth yet the body doesn't store up enough of it.

And pregnant women need extra, even before they may know they've conceived. Enough folate in pregnancy's earliest days can prevent devastating birth defects of the spine and brain called neural tube defects, including spina bifida. Those defects have dropped by about a third since the U.S. mandated fortifying certain breads, cereals and pastas with folic acid in January 1998.

Two major studies in the past month suggest the vitamin may be even more protective.

First, Texas researchers analyzed nearly 35,000 pregnancies and found that women who reported taking folic acid supplements for at least a year before becoming pregnant cut in half their risk of having a premature baby. Their risk of having very early preemies, the babies least likely to survive, dropped even more.

Then Canadian researchers analyzed 1.3 million births in Quebec since 1990 to look for heart defects, the most common type of birth defect. They found the rate of serious heart defects has dropped 6 percent a year since Canada began its own food fortification in December 1998.

It's hard to get enough folate for pregnancy through an average diet. So health authorities have long advised that all women of childbearing age take a daily vitamin containing 400 micrograms of folic acid — even if they're not trying to conceive, since half of pregnancies are unplanned. Last month, the U.S. Preventive Services Task Force went a little further, recommending that women take a daily supplement with 400 micrograms to 800 micrograms of folic acid daily.

But because only about a third of non-pregnant women take precautionary folic acid supplements, fortifying foods made with enriched flour ensures everyone gets a modest amount.

"We've seen in the U.S. and Canada dramatic changes in neural tube defects just with fortification. The question now is would a little more fortification, or even twice as much fortification, impact that bottom line, as well as those other potential benefits," says Dr. Alan Fleischman, medical director of the March of Dimes.

His group will call together pregnancy and folate specialists this summer to debate that. Also under way are deliberations by the European Union and Britain on whether to begin fortification there.

Complicating that issue is the question about cancer risk when older people — women well beyond childbearing, and men — take lots of folic acid.

Here's the quandary: Some research shows people who don't eat enough folate have a higher risk of colon and certain other cancers. On the other hand, animal studies show too much folic acid, the pill version, can spur some cancers. There's scant human evidence. But when researchers studied people prone to precancerous colon polyps, those who took high-dose folic acid — 1,000 micrograms a day — for three years had more new polyps than people given a dummy pill. And in March, researchers tracked 640 men from that earlier study and found that 10 years later, the folic acid users were more likely to have developed prostate cancer.

Why? While enough folate usually is protective, if people's bodies already harbor some precancerous or cancerous cells, too much may feed their growth, said Tufts' Mason. Older people are more likely to be brewing colon or prostate cancer.

Fortified foods alone wouldn't be enough to harm, stresses Fleischman: "I don't think it's going to end up being a generational argument."

But Mason worries that some people can rack up the dose with today's multiple sources: A multivitamin with 400 micrograms; some fortified cereals bring another 400 a bowl; many older people take special B-vitamin tablets with 400 more; another 200 or so from breads; more in vitamin-infused bottled water and energy bars.

Don't misunderstand: Everyone should eat enough leafy greens and citrus — good folate from food is important at all ages. But until the issue's settled, Mason says older adults "really ought to think twice about whether you should take a vitamin supplement that contains folic acid."

Nigeria works to try to control increasing polio cases

From AllAfrica.com:

As the 3rd Round of the National Immunization Days (NIDs) end June 2 in Lagos State, the Special adviser to the Lagos State Governor, Pharm. Toyin Hamzat has declared that the statistics on Wild Polio Virus (WPV) in the country is not yet cheering.

Hamzat who spoke in Lagos opined that immunization remains the most cost-effective strategy in disease prevention and health promoting services.

The Special adviser who also noted that the WPV cases dropped drastically from 1,122 confirmed cases in 2006 to 285 cases in 2007 frowned that the improved situation in 2007 Polio Eradication Initiative reversed in 2008 with severe resurgence of polio cases especially WPV1.

His words, "A total 801 cases were recorded for that year. As May 23 2009, 278 WPV cases have been confirmed in 26 states as against 68 WPV cases spread across 20 states and 54 LGAs."

He explained that the 2008 cases represent 90 percent of the confirmed WPV cases in the African region, 50 percent of the cases globally, 76 percent of the global wild polio virus Type 1 cases and 10 percent of wild polio virus type 3 cases.

"Of great concern is the fact that Nigeria indeed has re-infected 14 countries that were previously polio - free," he stated.

Continuing, he pointed out that many people believe that polio was a northern Nigeria problem and only few appreciate the fact that it is still a national dilemma as some states in the southern states which were previously polio -free are now experiencing outbreaks and Lagos is no exception.

Explaining why the state government has decided to do so many rounds of National Immunization Plus Days this year, he insisted that the situation is still not cheering.

"The question may be asked: Why so many rounds of the National Immunization Plus Days this year? Statistics on Wild Polio Virus (WPV) in the country is not cheering. In 2006, Nigeria had 1,122 confirmed WPV cases and this dropped drastically to 285 cases in 2007. The improved situation in 2007 Polio Eradication Initiative, however, reversed in 2008 with severe resurgence of polio cases especially WPV1.

A total of 801 cases were recorded for that year. As of May 23, 2009, 278 WPV cases have been confirmed in 26 states as against 68 WPV cases spread across 20 states and 54 local government areas which I reported during my March 2009 National Immunization Plus Days press briefing. The 2008 cases represent 90 percent of the confirmed WPV cases in the African Region, 50 percent of the cases globally, 7 percent concern is the fact that Nigeria indeed has re-infected 14 countries that were previously polio free,"

He noted that concerted efforts by federal and state governments and partners have led to a renewed drive to ensure effective and quality National Immunization Plus Days in Nigeria adding that as part of efforts to break the transmission of Wild Polio Virus in Nigeria and ensure that the country ceases to be of children immunized with Oral Polio Vaccine since the Integrated Measles Campaign (IMC) implemented in December 2008 with corresponding figures for December 2008 IMC, January 2009 National Immunization Plus Days, February 2009 Special Immunization Plus Days and March 2009 National Immunization Plus Days put 2,806, 207; 3,855,073; 4,141,398; and 4,373,602 children respectively.

He listed the state government's effort at improving routine immunization as including immunization outreach sessions to get to underserved and hard_to_reach communities and communities that are not accessing the Primary Health Care/Immunization services for any reason whatsoever; increasing the number of immunization posts and the number of immunization sessions in the health facilities; training and re_orientation of both public and private health workers on all aspects of immunization to build capacity for quality and ensure that vaccinations result in protection of the child; improved monitoring and supervision at all levels including the private health facilities; and establishment and/or improvement of tracking of defaulters among others.

The Special Adviser then urged parents and guardian to ensure that their children and wards immunized as the immunization campaign offers another window of opportunity to protect children from these vaccine preventable diseases adding that the immunization is free and the vaccine is safe and effective.

He acknowledged the support and contributions of many Development Partners namely WHO, UNICEF, EU_PRIME, NPHCDA, Rotary International, etc. In addition, I wish to state my appreciation of all the personnel of the Lagos State Ministry of Health and Local Governments who have put in a lot of their resources to ensuring that this campaign is successful."