Thursday, December 31, 2009

Montana Supreme Court upholds physician-assisted suicide as legal

From Bloomberg News:

Physician-assisted suicide is legal in Montana, and doctors who help terminally ill patients die are shielded from prosecution, the state Supreme Court ruled.

The case was filed by Robert Baxter (pictured), a retired truck driver from Billings who was terminally ill with leukemia, according to court filings. Baxter sought a lethal dose of medication prescribed by his doctors, who joined Baxter in the case challenging whether they could be prosecuted under Montana law for helping mentally competent, terminally ill patients to die.

A lower court ruled last year that Montana’s constitutional privacy and human dignity rights allow a terminally ill patient to “die with dignity.” The court ruled the patient may use a doctor’s prescription, and that the physician is protected from prosecution under Montana’s homicide laws. Montana appealed the lower court ruling to the state’s high court.

“We find nothing in Montana Supreme Court precedent or Montana statutes indicating that physician aid in dying is against public policy,” the high court said in its opinion.

Montana law “explicitly shields physicians from liability for acting in accordance with a patient’s end-of life wishes, even if the physician must actively pull the plug on a patient’s ventilator or withhold treatment that will keep him alive,” according to the ruling.

The court reversed the lower court’s award of attorney fees to Baxter.

Kathryn Tucker, a legal director at Compassion and Choices, a group that advocates end of life free choice which joined the case, said today’s decision is the first from a U.S. state high court to protect the choice to end one’s life.

The opinion “makes clear that in Montana, patients are able to make this choice and physicians can provide this care without risking sanction,” Tucker said in a statement. Baxter died before today’s decision, according to the statement.

Judy Beck, a spokeswoman for Montana Attorney General Steve Bullock, didn’t immediately return a call seeking comment.

The case is Baxter v. Montana, 09-0051, Supreme Court of Montana (Helena).

Science fiction likes disabled characters to walk again

Thanks to Jesse the K for the tip about this article, "20 Science Fiction Characters Who Got Their Legs Back," at The article is reprinted below. It's inspired by the current huge hit sci-fi film, "Avatar," which features a wheelchair-using soldier (played by non-disabled actor Sam Worthington, pictured) who gets to "walk again" by being turned into a remote-controlled forest-dwelling blue man? (Sorry, I haven't seen the film yet.)

All the glowing reviews of "Avatar" have used many of those terms we despise: "Wheelchair-bound," "confined to a wheelchair," etc. Patricia E. Bauer's blog has a nice roundup of many of the references.

Here's the list of 20 sci-fi characters who walk again from (It also includes those disliked references to wheelchair users. Beware!):

In Avatar, Jake Sully's in a wheelchair, until a magical brain tech turns him into a running, jumping, soaring blue dude. The disabled character who regains the use of his legs is a science fiction mainstay. Here are 20 examples.

Chances are, you've come across lots of SF stories where a disabled person regains the ability to walk in some fantastical way. Usually it's a guy, and his ability to stand up on his two legs is portrayed as a reclaiming of his virility and power. Often times, the disabled hero regains full mobility along the way towards becoming super-powered — or as part of a package of superpowers.

Oftentimes, the regained mobility comes from some kind of fancy assistive technology. And yet, these stories always draw a really sharp distinction between the wheelchair (which is also assistive technology) and this other tech, which is better or more natural. Or more rugged and manly, perhaps. (Both Jake Sully and John Locke defiantly say something along the lines of, "Don't tell me what I can't do.")

So here are 20 characters from science fiction who regained the ability to walk:

Star Trek gives us Captain Christopher Pike, who's stuck in a wheelchair and unable to express himself other than by flashing a light "Yes" or "No." (As Evan Dorkin tweeted yesterday, "Nice 23rd cent tech there, btw. Beep. Boop. Stupid Star Trek.") Captain Pike's mind is still alive in there, but nobody's figured out a way for him to use Morse code, or translate his brain activity into speech. So Spock takes matters into his own hands, risking his own career and Captain Kirk's command to help Captain Pike return to Talos IV, the planet of the obscene craniums. There, Captain Pike can live in a kind of dreamworld for the amusement of the sterile Talosians, but at least he'll be perfectly healthy.

Doctor Who has had lots of wheelchair-bound characters, including the evil Davros and the vicious Collector. But the first character to rock a wheelchair in Who was actually one of the good guys — Dortmun, one of the leaders of the anti-Dalek resistance in "Dalek Invasion Of Earth." Dortmun is confined to a wheelchair due to one of his many failed attempts to devise an anti-Dalek explosive. And not coincidentally, he's a terrible leader whose super-explosives never do what they're supposed to. But then Dortmun finally redeems himself, confronting the Daleks and buying time for the others to escape — by climbing out of his wheelchair and standing to face the Daleks at last. His redeeming act of heroism is clearly linked to his abandonment of the chair. (Skip to about 2:30 in the video.)

Batman gets his spine broken in the Knightfall crossover, by the supervillain Bane. Throughout the extremely long Knightquest storyline that follows, Bruce Wayne walks with a cane or travels in a wheelchair. He searches for Tim Drake's parents, despite the warnings of a spinal surgeon that he's only making his spine damage worse and more incurable. Luckily, his new girlfriend, the altruistic Dr. Shondra Kinsolving, turns out to have magical healing powers, and she heals Batman, giving herself irreparable brain damage in the process. There's a lot of lightning involved, okay? We're all so glad to see Bruce smack around the blond imposter, we don't really care how Bats got his back back. I actually bought the novelization of Knightfall for $1.00 because I was curious to see if Denny O'Neil would make Batman's recovery make any sense whatsoever. Here's how O'Neil writes it:

"Shondra, we've got to get away from that window," Bruce said. "I can't move, so you'll have to —"

"Don't worry," Shondra whispered. "You'll be fine."

Her hand slipped over his, and her fingers tightened slightly. He felt as though she were touching every cell of his body at once — soothing, quieting, healing. The world went away, then, ebbed away from him, and he was left alone with Shondra's touch in a place where there was no pain and terror.

And that's it. The next time we see Bruce in the novelization, he's "shirtless, barefoot, moving as easily and gracefully as he ever had in his life," with the sun on his shoulders.

The X-Men's leader, Professor X, is in a wheelchair — except for all the occasions in which he's been able to get out of it. At one point, Professor X gets the Starjammers' physician, Sikorsky, to clone him a new body with no disabilities. At another point, the mysterious Xorn "heals" Professor X using his special powers over metal — until it turns out that Xorn is really Magneto, and he's just been dicking Professor X around.

Gallilee by Clive Barker features a first-person narrator, Maddox, who's been in a wheelchair for 150 years, ever since he was maimed in an accident. An apocalyptic vision causes Maddox to realize time is running out, causing him to write down his family history — and then he has a spiritual epiphany, which in turn causes him to realize he can walk once more.

The Animorphs freak out after their identities are discovered by the evil Yeerks — and they decide to recruit some more kids to join their team, in case the original members all get captured. So they decided to recruit disabled kids to be the new group of Auxillary Animorphs, because they figured the Yeerks wouldn't have bothered to infest a disabled kid. (So the Animorphs could skip the three-day screening period for new recruits.) And they figure the morphing powers would cure any disabilities. The leader of the Auxillary Animorphs, James, is paralyzed, until he becomes and Animorph and regains full mobility.

The Doom Patrol features its own version of Professor X, the disabled scientist Niles Caulder. And just as Grant Morrison got Professor X out of his wheelchair, Morrison did the same for Niles in the early 1990s. In one issue, Robotman rushes to tell Niles that somebody's shot Joshua. Niles Caulder says (from off panel) "Cliff, Cliff, Cliff. Isn't it obvious?" And as you turn the page, you discover that Niles is standing up, and revealing that he's the one who shot Joshua. It turns out that nanotechnology cured Niles, although later he winds up as just a severed head — and finally, he's back in the wheelchair, with a complete body again.

The Talents by Anne McCaffey includes a character named Peter Reidinger, whose spine is damaged after a wall falls on him, paralyzing him for life. Until Peter realizes he's actually a powerful telekinetic, and he teaches himself to walk by moving his own limbs telekinetically.

Star Wars: Commenter db4dbms points out that Darth Vader is basically a torso inside a robotic exoskeleton, since Anakin had his arms and legs chopped off.

Robot Wars Book 5: Final Battle by Sigmund Brouwer features Tyce, a 14-year-old whose damaged spine has been hooked up to a device that lets him control robots. Tyce thinks about having an operation that would restore his ability to walk (at the cost of his ability to control robots). But then his toes start to wiggle all on their own, after he kills the first woman president of the United States (by accident, I think.)

Green Lantern John Stewart left the Lantern Corps after his wife got killed, and winds up joining the Darkstars, who have much less cool uniforms. Unfortunately, John gets badly injured defending the planet Rann, and becomes disabled. Until Hal Jordan, in his identity as Assclown — I mean, Parallax — heals John Stewart on his way to reignite the sun and save everyone.

Dark Angel gives us Logan Cale, a steely eyed cyber-journalist who's secretly known as Eyes Only. After Logan is injured in an accident, he's paralyzed from the waist down, and hires a live-in physical therapist named Bling. (Who, I'm just guessing, teaches Logan the healing power of giant medallions?) And then Logan meets a guy named Phil, who has an exoskeleton and agrees to give Logan one. The exoskeleton allows Logan to walk, and say goodbye to Bling!

Xenocide by Orson Scott Card shows Miro, who's been disabled and unable to speak normally, discarding his old body and creating a new one by teleporting Outside. The new body is intact, and allows Miro to do all the things he could do before his accident. (Thanks, TVTropes!)

The X-Files episode "All Souls" features a wheelchair-bound girl, who's able to walk out of her house miraculously. Then she's found dead, in a "praying position" with her eyes burned out — and the same thing may be coming for two other similar girls, unless Scully can work out the whole faith-vs-science thing pronto.

M.A.N.T.I.S., Sam Raimi's short-lived superhero series, features a scientist who's confined to a wheelchair — until he puts on his exoskeleton and becomes the crime-fighting dynamo M.A.N.T.I.S.!

Alpha Flight features Roger Bochs, a double amputee, who can "phase" into giant robot armor, allowing him to walk around and do superhero stuff. Later on, a healer gives him actual fleshy legs. But then it turns out that the healer harvested the legs from corpses, and the graft fails.

The Cure by F. Alexander Brejcha is unusual, in that it's a story about a disabled person being cured, written by an actual disabled person. Brejcha writes, in an author's note, that he's paraplegic, while his main character is quadraplegic. Not surprisingly, it deals a lot more with the main character's insecurity and adjustment problems after nanotech restores his mobility.

Dr. Strangelove regains the ability to walk, thanks to the awesomeness of setting off a doomsday device that ravages the globe.

Lost's John Locke is confined to a wheelchair for four years after his con-man bio-dad tosses him out a window. Locke will never walk again... until he goes to the Island, where he's suddenly healed, and becomes the awesome, rugged outdoorsman he always dreamed of being. In one episode, "The Man Behind The Curtain," Ben taunts Locke that the "old" Locke was so ineffectual, he got kicked off a Walkabout "because you couldn't walk." Locke's regained ambulatory status is linked to his virility and is proof that the Island has chosen him as a special person. Ben, meanwhile, is stuck in his wheelchair for a long time, because he's evil and the Island doesn't like him as much. (Although Ben, too, gets to walk eventually, thanks to Locke's presence.)

The Rampaging Hulk features Geoffrey Crawford, a former teacher of Bruce Banner's, who's suffering from a degenerative nerve disease that has him confined to a wheelchair. Bruce visits his old mentor, seeking a cure for his Hulk-itis, and Dr. Crawford has a complicated plan, involving mapping Bruce's DNA and using a teleporter to separate him from his Gamma radiation — but it's actually a scheme to steal Bruce's powers, so Crawford can Hulk out and escape from his wheelchair. Crawford becomes the monstrous Ravage, and puts the beatdown on the Hulk. Including the great sound effect, "Snap!". Also, in Incredible Hulk, Bruce Banner suffers from ALS, but then Reed Richards miraculously cures him. Then Banner turns to the reader, breaking the fourth wall, and explains there's no cure for ALS in real life and you should donate to research charities. Also, in an episode of The Incredible Hulk TV show, Banner is paralyzed from the waist down, until he Hulks out, which soon heals him.

Heroes' Arthur Petrelli is a rare example of an evil person who overcomes disability, thanks to the power of evil. I've blotted out the events of season three from my mind, but as near as I can tell, Mama Petrelli poisons Papa Petrelli, but he survives — except that he's totally paralyzed and unable to move. Until he absorbs the healing power from Adam/Kensei and becomes an unstoppable evil-eyebrow machine. Also on Heroes, Daphne has cerebral palsy and is unable to walk... until her mutant ability kicks in and makes her the fastest runner in the world, because irony.

Post-polio survivors work to stay fit

From the York Daily Record in Pennsylvania:

As a baby, John Breach (pictured) couldn't crawl as quickly as his fraternal twin brother could. That alerted his doctors to his poliomyelitis.

Breach contracted the disease shortly before a preventive vaccine reached the Harrisburg area, where he was born.

"In my case, it's obviously been an issue my whole life," Breach said. "You're always compensating. I wear a lift in my shoe to try to make up the difference, but you don't have the strength."

As a kid, he underwent several surgeries and wore a leg brace to correct problems caused by polio.

But he hasn't let polio stop him from doing what he wants. Breach, 54, of Windsor Township is a project manager for commercial properties in the construction business.

"I actually played baseball as a kid. . . . They'd put a runner in for me," he said. "I was just trying to fit in."

He said his wife of 36 years, Marjorie, and his mother never let him use polio as an excuse.

"I think having strong women in my life has been a good thing for me," said Breach, who has three children and two grandkids.

Breach said he's unaware of any local support networks for polio survivors.

"It's like you're on an island. . . . When you're the dinosaur, it would be nice to interact with others," he said.

Breach said he's concerned the disease could reactivate.

"No one seems to know . . . what is going to happen. What should I be looking for when I'm 65 or 70?"

York Hospital spokesman Barry Sparks, 60, was 5 years old when he was diagnosed.
"I remember that I was having trouble walking up the steps," he said.

Sparks spent several months in the hospital and wore a leg brace. At that time, he lived in Dorchester County, Md., where six children were known to have polio. Three of them died from the disease, he said.

"As a result (of polio), my right side today is a lot stronger than my left side," he said.
Like Breach, Sparks said polio didn't keep him from being active.

"I played Little League baseball. I still swim," Sparks said. "I've been fortunate."

Joel Rodney, chancellor at Penn State York, said doctors misdiagnosed his muscle weakness when he was a child. He wasn't diagnosed as a polio survivor until he was an adult.

"What concerns me is finding doctors in the U.S. who know what they're dealing with," said Rodney, who uses leg braces to help him walk.

His wife, Judy, was diagnosed with polio as a baby. Today, she battles post-polio syndrome.

"I have deteriorated over the years," she said of her physical strength. "Now, I use . . . a wheelchair most of the time."

Mary Ann Keenan -- a professor, vice chairwoman of the Department of Orthopedic Surgery and chief of neuro-orthopedic services at the University of Pennsylvania -- saw Judy Rodney as a patient.

It can take 30 years on average for a polio survivor to decline physically, she said.

"Post-polio syndrome is when they begin to lose more function," she said.

Eric Barr, a physician at Family Medicine Associates of York in West York, said he has about 2,500 patients and knows of just one who's a polio survivor.

"It's pretty rare," he said. "We don't see the active disease . . . because of the vaccine."

Although polio is believed to be eradicated in the U.S., children should still be vaccinated against it, he said.

"We don't want to become lax," he said. "You run the risk of allowing (resurgence of) the disease."

Sufferers risk developing post-polio syndrome, which is a reactivation of the disease and usually affects the survivor's previously unaffected limbs or muscles, Barr said.

"I guess, you're kind of never out of the woods in a sense," Barr said of polio survivors. "We don't have an active way to combat it."

University of Tennessee sued over arena, stadium access

From the Knoxville News Sentinel:

A Tennessee man and a South Florida advocacy group for people with disabilities are suing the University of Tennessee in federal court over what they say is a lack of equal access for disabled people to events held at Thompson-Boling Arena and Neyland Stadium.

Michael McGrath, identified as having muscular dystrophy with limited use of his upper and lower extremities, requires a wheelchair for mobility.

The lawsuit was filed Dec. 21 by McGrath, whose hometown is not specified, and Access Now Inc. in U.S. District Court in Knoxville by Birmingham, Ala., attorney Edward Zwilling.

"The main thrust of the complaints regarding these two venues has to do with sight lines - there simply is not enough wheelchair accessible seating and that provided does not provide sight lines of the same quality afforded to able-bodied patrons," Zwilling wrote in an e-mail. "Further, the accessible seating provided in these venues are not adequately dispersed to afford the same options for tickets for wheelchair users and their companions."

UT officials in Knoxville could not be reached because the campus is closed this week for the holidays.

The lawsuit also alleges wheelchair accessibility is lacking for toilet rooms, parking and concessions as well as sidewalks and curb ramps at intersections throughout campus.

The suit states that McGrath would like to use UT programs and services and visit UT facilities, but he "continues to be denied full, safe and equal access due to violations of the (Americans with Disabilities Act) and Rehabilitation Act that continue to exist and due to his disability."

Zwilling said McGrath is a member of Access Now Inc., and "in order that issues affecting other members of Access Now can be adequately addressed, Access Now joined the case with Mr. McGrath."

The suit seeks to have UT review access to its facilities. It also seeks attorneys fees but no damages.

"(McGrath) is only interested in obtaining equal access to and enjoyment of the arena and the stadium (including the routes necessary to get there) for himself and others similarly situated," Zwilling wrote.

New MS treatments hold great promise

From Business Week:

When Thomas Bullock (pictured) was diagnosed with multiple sclerosis in 2001, several new treatments for the incurable, nerve-destroying condition had just hit the market. The automotive worker from Ontario spent two years on Bayer's blockbuster Betaseron, an injectable drug that can suppress a hyperactive immune system. But instead of getting better, Bullock endured constant flu-like symptoms and numbness in his limbs. When he developed severe nerve damage, he ditched the injections. "My body just couldn't handle it," recalls Bullock, now 41.

Then, in 2007, he joined a clinical trial for an experimental pill, Fingolimod, from Novartis (NVS). His MS hasn't flared up since. "This is the best shape I've been in for years," he says.

Bullock is one of an estimated 2.5 million MS patients worldwide with fresh cause for hope. Fingolimod and a slew of other drugs that attack MS in new ways are expected to become available starting in 2010. With 10 treatments in late-stage development and more than two dozen in early-stage research, some doctors believe therapy for the illness is at a turning point. Although doctors can't say which drugs will succeed, "we are getting closer to stopping the progression of the disease," says Dr. John Richert, a top executive at the National Multiple Sclerosis Society.

Switzerland's Novartis is vying with Germany's Merck to be first with an oral treatment, pursued closely by France's Sanofi-Aventis (SNY), Israel's Teva Pharmaceuticals (TEVA), and Biogen Idec (BIIB) in Cambridge, Mass. If regulators approve any or all of these products, the painful injections and infusions patients endure today may become obsolete—and the global market for MS drugs, currently at $8.8 billion, could double within five years, according to consultants Frost & Sullivan.

When MS strikes, rogue immune cells travel to the brain and spine, attacking and destroying myelin, the protective insulation surrounding nerves. These mysterious attacks produce sclerotic scar tissue and disrupt messages from the brain that control muscle movements, with symptoms ranging from mild numbness to paralysis and blindness.

MS drugs seek to quell these assaults. But any tampering with the body's immune reactions can be dangerous. "There is balance between treating the disease and potentially increasing the risk of infection and cancer," says Dr. Jeffrey Cohen, director of experimental therapeutics at the Cleveland Clinic's Mellen Multiple Sclerosis Center. Consider Tysabri, one of the most potent weapons against MS, which works by confining wayward immune cells in the bloodstream. The drug, made by Biogen Idec and Elan Pharmaceuticals (ELN), has been used by 65,000 patients. Of these, 28 have developed brain infections, and 7 have died.

The new wave of MS drugs face tough scrutiny. Fingolimod, for one, works through an entirely new mechanism: It traps the marauding immune cells in the lymph nodes, keeping them from entering the bloodstream. A two-year study shows it reduced the relapse rate in MS patients by 54%. It also may increase the nervous system's ability to protect itself, as may Biogen Idec's new pill, BG-12, says Richert.

What doctors can't guarantee is that the drugs will suppress the illness without triggering infections. "We desperately need new drugs for MS," says Dr. Mark Keegan, section chair of multiple sclerosis at the Mayo Clinic in Rochester, but "any new medication that alters the immune system needs to be used with caution."

Quadruple amputee to appear in Rose Bowl parade


AURORA, Colo. - In 2002, Manuel Salazar (pictured) lost all four of his limbs during a jobsite accident that sent 115,000 volts through his body - twice. Through years of rehabilitation and determination, he rebuilt his body and his spirit. Now, Salazar wants to share his story with the world.

"I'm nervous," Salazar said. "But it's going to be exciting at the same time."

Salazar was invited to appear on the "Donate Life" float at the Rose Parade in Pasadena, California. He is going on behalf of a Colorado-based, nonprofit organization called AlloSource.

"I feel that it's an honor for me to be able to help them get the word out and let other people know that maybe are in a similar situation," Salazar said.

AlloSource provides skin, bone, and tissue allografts.

For Salazar, the donations helped doctors surgically attach an extension of what he has left of his right arm. Donor bone was used to help build his shoulder joint to support the placement muscle and tissue.

"This extra 6-inch arm has made a huge difference in my life," Salazar said.

He says he can feed himself, scratch his face, and manipulate objects without having to use a prosthetic arm.

He wants other amputees to know of the procedure and he wants others to think about donating organs and tissue.

"Before I was presented with it, I didn't even know anything about bone tissue or that they could do stuff like that," Salazar said.

Two years ago, he started his own custom car shop. He hopes to one day drive again with the use of a joystick and his arm. Salazar downhill skis, water skis, and swims. He wants other amputees to know that they can still chase their dreams.

"As long as I can inspire people and help people, I'll do whatever it takes to do that," Salazar said.

Nebraska mother gets jail time after baby with CP dies from seizures

From The Omaha World-Herald:

An Omaha woman was sentenced Dec. 29 to 270 days in jail on several child neglect charges that stemmed from an investigation into her infant daughter’s death.

Douglas County District Judge Joseph Troia sentenced Crystal Beasley, 25, to the jail term, denying her attorney’s request for probation.

Beasley came under authorities’ scrutiny after her 5-month-old daughter, Precious, died in January of seizures related to cerebral palsy.

Authorities investigating the infant’s death found Beasley’s five other children filthy and with little food, Troia said. Police also found cocaine in the house.

AdvertisingBeasley told the judge that she took the cocaine as an “upper” because she was a single mother trying to raise six young children — three who were in school and three who were in day care.

She said her children weren’t bathed that day because they had planned to stay in the house all day. Then tragedy struck: Her daughter had to be rushed to the hospital.

Beasley has relinquished her parental rights to the children, said her attorney, Assistant Public Defender Steve Kraft. Kraft said Beasley had one of the worst upbringings he has seen — and has suffered from the death of her daughter.

Beasley told the judge that she did not let her children go hungry or unbathed. She said she stopped giving Precious medication for her seizures because the medication wasn’t working and her daughter wasn’t eating. She said she had called her doctor to try to get Precious admitted overnight — and couldn’t get it done.

“I truly loved my kids,” Beasley said. “I would like to get them back one day.”

Black and white photos tell the story of mental illness

From The Jewish Chronicle:

Day after day, the woman diagnosed with schizophrenia walked to and from her treatment center, cutting across the Schenley Park Golf Course.

On her way was a tree — a stately one with a wide canopy of branches. She watched that tree every day and every week, as its leaves changed colors in the autumn and finally dropped to the ground during winter.

To this woman grappling with a serious mental illness, Charlee Brodsky said, that tree became more than a tree (pictured).

“This tree came to symbolize to her stability,” Brodsky said. “It was one of the few constants in her life.”

A stark black and white photo of that tree in the dead of winter is one of the 20 photos to comprise Brodsky’s new exhibit at the American Jewish Museum of the Jewish Community Center.

“I Thought I Could Fly: Photographs by Charlee Brodsky,” which opens Jan. 11 in the Fine, Perlow, and Weis Gallery, and runs through March 31, is based on Brodsky’s book of the same title. It uses a camera lens to capture provocative scenes — ones that invite exhibit goers to learn more about people dealing with mental illness.

Those people need not have been diagnosed themselves, said Brodsky, an author and professor of photography at Carnegie Mellon University. They may have friends or relatives with mental illness, but their lives are affected just the same.

For instance, Brodsky’s own daughter, who posed for one photo in the exhibit, has been diagnosed with mental illness.

After that, “I wanted to understand mental illness more,” Brodsky said.

What she discovered was mental illness is not some dark, exclusive group. “Mental illness is all around us,” she said. “You just have to scratch the surface to find this one is an alcoholic or this one has an aunt who committed suicide, maybe for depression, but maybe for other reasons as well.

“One of the hopes of the exhibit is when people become familiar with mental illness that they can seek help,” she continued. “There are places out there; there are therapists out there; there are psychiatrists out there; there are treatments out there so that people can have very fulfilling lives.”

Melissa Hiller, director of the American Jewish Museum of the Jewish Community Center of Greater Pittsburgh, described the exhibit’s goal more succinctly: “stigma busting.”

The photos in the exhibit — each accompanied by firsthand narratives of people coping with mental illness — are not of people’s faces.

“I don’t think you can say this is the face of mental illness,” Brodsky said. “I don’t think mental illness is something you see when you first look at someone.”

Instead, she shot scenes and things — even mundane things such as a wall outlet or a doctor’s examination table.

Each shot is somehow related to a narrative; it’s meant to entice the viewer to read the related story.

“You see that photograph first and you wonder what does that have to do with mental illness,” she said.

“I wanted you to look at the photograph and be intrigued by the image,” Brodsky added. “For me it’s more interesting to do things that are a little less predictable than more predictable.”

The exhibit is actually the first of two back-to-back exhibits dealing with Brodsky’s work. The second, “India: A Light Within,” opens Jan. 31 at the Berger Gallery and features some of her rare color photography.

Hiller said the museum found two foundations interested in awarding grants for two shows by the same artist — something almost unheard of for the AJM.

“I don’t know if we’ve ever done it,” Hiller said. “This is the first time we’re getting to see this exhaustive view of two bodies of work by the same artist, and they’re incredibly different.”

Investment fraud threatens vital Philadelphia school for kids with learning problems

From The Philadelphia Inquirer:

Among the victims of Joseph S. Forte's investment fraud is a small Main Line private school that means the world to Margaret Cort.

"Hill Top saved Joe's life," said Cort, referring to her son, a freshman at the Rosemont school that specializes in teaching children of above-average intelligence who have learning problems that prevent them from doing well in a traditional school.

Cort said her son now "knows he has to go to college," but she doubts that would have been possible without Hill Top Preparatory School, which was founded in 1971 for children in grades 6 though 12 whose learning disabilities are not predominantly language-based.

Fortunately for the Cort family and others connected to the 81-student school, Hill Top limited its use of the endowment Forte managed to capital projects, such as the installation of thermal windows in its main school building, which was built as a summer residence.

Forte was sentenced last month to 15 years in prison in a Ponzi scheme that resulted in $35 million in losses to Hill Top and other investors.

"At least I don't have a huge line item on the income side of my budget that isn't going to be there any more," Hill Top's headmaster Thomas W. Needham said.

But he still misses the cushion that an endowment, even a small one, provides. "If we were all fat and happy in terms of the general economy, then I wouldn't be as nervous or as concerned as I am," Needham said.

Figuring out exactly how much money Hill Top lost in Forte's fraud is difficult.

The endowment was started early this decade by several donors who had money in Forte's investment fund.

Income from a portion of those investments with Forte, who joined the board of Hill Top in the year ended June 30, 2002, was put into a separate account in Forte's partnership. After about two years, sometime between June 2003 and June 2004, the principal was given to the school as well, but kept in Forte's fund.

As of June 30, 2006, the value of Hill Top's stake in Forte's fund was $1.59 million, according to the school's tax form for that year.

Forte's link to Hill Top was John N. Irwin, chairman of Hill Top's board from 1995 until his resignation in February. Irwin, whose youngest daughter graduated from the school in 1991, was one of Forte's original investment partners.

As a board member, Forte "was very quiet, asked good questions at the board meetings, came to all the meetings, showed up at the events," said Needham, who became Hill Top's headmaster in 2007.

Beyond the loss of the endowment, Hill Top's annual giving campaign has been hit by the loss of contributions from Forte and Irwin, as well as from the Thornton D. and Elizabeth S. Hooper Foundation in Wayne, whose money was in Forte's fund, Needham said.

Needham said he has been the head of schools without endowments before, but to have one disappear the way Hill Top's did was "a shock." However, because the school gets almost all of its revenue from tuition, operations are steady, he said.

An endowment-funded program that reimbursed some of the expenses for teachers pursuing advanced degrees was discontinued, but financial aid for families that cannot afford the school's $34,400 annual tuition is unaffected because it has always been paid for out of the operating budget, Needham said.

"There's no huge hardship story," Needham said.

That means students such as seniors Kevin McLaughlin, Matt Lake, and Zac Gotlib can finish their careers at a school that, they said, has made a huge difference in their lives. "Hill Top was able to teach me the way I learn," said Lake, who started at Hill Top in ninth grade and plans to study art in college.

Ninth-grader Natasha Hubbard Blatt said she is really happy at Hill Top. "My old school was so wrong for me," she said. "Too bad" was the message she got from teachers at her old school when she had a hard time. At Hill Top, "they let me play with Silly Putty because it helps me pay attention," she said.

Needham said the notoriety of getting caught up in a Ponzi scheme has not been good, but he is confident in Hill Top's future.

Once things settle down, the board will start a new drive to establish an endowment, "and we'll probably be a little more careful about who we select to manage the funds for us," Needham said.

Parents in Uganda ask for more special education teachers

From The New Vision in Uganda:

JINJA, Uganda — Parents of children with learning disabilities have asked the Government to train and recruit more teachers for special needs. Under the Jinja Network of Parents Support Groups, they said many children with mental disorders missed out on adequate education due to lack of specialised teachers.

"We have tried to sensitise parents about the rights of these children. Many have been enrolled in school, but special needs teachers are few," said the chairperson of the groups, Mikaya Tenyhwa. This was during the Christmas and New Years celebrations for children with learning disabilities at the Soft Power Education Centre in Bujagali village on Sunday.

WWII conscientious objectors who worked at state mental hospitals come forward with documentation of abuses there

From Joe Shapiro at NPR:

In September of 1942, Warren Sawyer, a 23-year-old conscientious objector, reported for his volunteer assignment as an attendant at a state mental hospital. The young Quaker was one of thousands of pacifists who had refused to fight and instead were assigned to work in places few outsiders got to see — places like Philadelphia State Hospital, best known as Byberry.

"Byberry's the last stop on the bus here in Philadelphia," Sawyer recalls. "Any young man on the bus, other people knew that we were COs working at the hospital. And they'd make different kinds of remarks, supposedly talking to each other, but hoping that we hear. And you know: 'Yellowbellies, slackers.' "

Those slurs were harsh. But not nearly as harsh as what awaited the young men inside the gates of the chaotic and overcrowded hospital for people with mental illness and intellectual disabilities.

The young pacifists would be changed by what they saw in places like Byberry, and then become a force for change themselves.

Ten million men were drafted into the military during World War II. But more than 40,000 refused to go to war. These conscientious objectors came from more than 100 religions. But most were from the traditional peace churches: people from the Church of the Brethren, Mennonites and Quakers. Still, they wanted to serve their country. Many did serve in the military in noncombatant roles. Others did alternative service, like the 3,000 who were assigned to 62 state mental hospitals around the country.

"Well, I called them hellholes," says Sawyer. "Terribly overcrowded. All we did and all we could do was just custodial care. Because when you have three men taking care of 350 incontinent patients with everything all over the floor, feces and urine and all that kind of thing."

The smell got into his clothes and was so strong that even after he washed them, the smell lingered. "In the incontinent ward," he says, "it took a few weeks before you got used to eating supper with the smell all through your clothes and everything."

The "incontinent ward" was what the men called A Building. It was a large open room with a concrete slab for a floor. There were no chairs. There were no activities, no therapy, not even a radio to listen to. So hundreds of men — most of them naked — walked about aimlessly or hunched on the floor and huddled against the filthy bare walls.

Nearby was B Building; it was called the "violent ward" or the "death house," because angry men sometimes violently attacked one another. In one room, rows and rows of men were strapped and shackled to their bed frames.

Sawyer wrote frequent letters home, and those letters provide some of the best surviving historical record of the conditions in those grim wards and of the work of the conscientious objectors at Byberry.

"It was in B Building, the death house," he started in a letter written in September 1944 that explained one day of violence. "Due to the shortage of cuffs and straps and restraint locks that has prevailed in B Building for some time, one of the patients was able to get himself loose. He was a very dangerous fellow. He only had one cuff and strap on and he got out. He had a spoon that had been broken off at the end and was sharpened almost to a knife edge."

"After he was loose, he went to another patient and jabbed him in the side of the neck on top of his shoulder and drove the spoon down about one inch deep, just missing the jugular vein."

Sawyer is 89 now. He lives with his wife (who also worked as a volunteer at Byberry) in a Quaker retirement community, in Medford, N.J., outside Philadelphia.

Among Sawyer's neighbors are other former conscientious objectors, including Evert Bartholomew and his brother John, and Neil Hartman. In Sawyer's living room, they tell stories of the horrific conditions there. They talk about the young sailor who climbed to the top of a building and jumped off to commit suicide and of the time Sawyer made checkerboards for the patients but administrators took them away because they feared the thin boards could be used as weapons.

"Our work was to try to get attendants to realize these were ordinary people with a little problem and they needed help," says John Bartholomew.

Working in such a brutal and chaotic place tested the men's own ideals of nonviolence.

"But I found out there, the difference between violence and force," says Hartman, who at the time was a young Methodist. "We used force. We'd grab a man and we'd pin him. And then maybe get a nurse if we could to give him a shot. But we didn't use violence. And the difference was: It wasn't unusual next day for the patient to come around and thank us for not using violence when we could have."

There was lots of violence at Byberry. Many of the regular attendants were drunks who'd get fired at one state hospital and just move on to a job at the next. Some kept control by hitting patients with things like sawed-off broom handles or a rubber hose filled with buckshot.

Hartman says the patients came to appreciate the gentler manner of the conscientious objectors. "Cause they knew, the regular attendants, one of their tricks was to use a wet towel and put it around their neck and squeeze it. It, of course, choked them awful, but it didn't make any mark on them so no state inspector could catch up with them," he says.

Still, the young pacifists worried that it wasn't enough simply to show kindness. With the end of the war nearing, the conscientious objectors soon would be gone, but they didn't want to leave behind a place where untrained and underpaid attendants ruled patients by brutality and violence.

So the conscientious objectors came up with a daring plan. Sawyer wrote about it in one of his letters home:

"We are working on a carefully laid out plan to blow this place open in two months," he wrote. In secret, they went to newspapers, with details of the scandal inside the institution. "If we COs do nothing about this place to improve it," Sawyer continued, "our stay here has been to no avail and we have accomplished nothing. Two other fellows and I are heading up this thing to launch a campaign and gather material."

One of those other fellows was a conscientious objector named Charlie Lord.

Today, Lord, 89, lives in another Quaker retirement community, this one in Tennessee. In the living room of his brick bungalow, he flips through old yellowed photographs. "Here's the original one. Here, 1946. This is the day room with dozens of naked men along the left wall."

At Byberry, Lord sneaked a small Agfa camera in his jacket pocket. It was the camera he'd borrowed to take on his honeymoon. But he'd dropped it in a lake and then felt he had to buy the damaged camera from his friend. Now he could use it to take pictures to show conditions in the A and B buildings.

When no one was watching, he'd quickly shoot a picture without even looking through the viewfinder. "I'd try to fill the frame," he says. "You know, not just have little people far away. I'd get up as close as I could. I was aware of composition. But the main thing was to show the truth."

Over a few months, Lord filled three rolls of film, with 36 exposures each. His pictures showed the truth, in black and white. In the past, reformers and journalists like Dorothea Dix and Nellie Bly sneaked into institutions and wrote exposes about the horrific conditions there.

But Lord was one of the first to ever expose institutions by using the power of photography. "I just thought this would show people what it was like. It's not, not somebody writing to describe something," he says. "They can use flowery words or you know, do whatever they want. But if the photograph is there, you can't deny it."

One of the first people to see the photographs was Eleanor Roosevelt, in September 1945. A meeting was arranged between Roosevelt — whose husband, President Franklin Roosevelt, had died just a few months before — and a couple of the conscientious objectors from Byberry. They brought along Lord's disturbing photos. But Roosevelt at first doubted them.

According to Steven Taylor, a professor of disability studies at Syracuse University, Roosevelt assumed these were photos from some institution in the South. She said she knew about those kinds of conditions in Mississippi or Alabama. When told that they had actually been taken at an institution in Philadelphia, Roosevelt then promised to support the reform campaign and wrote about what she'd seen to government health officials and journalists.

Lord's photographs would have their biggest impact several months later, when they were published in Life magazine in May 1946.

Taylor says the images of thin, naked men lined against walls echoed some other disturbing images Americans had just seen. "The immediate reaction by many people to these photographs were that these look[ed] like the Nazi concentration camps. People could not believe that this was the way we treated people with mental illness and intellectual disabilities in our society," he says. "So it created a kind of mass uproar, nationally."

Of course, one can't equate the conditions in American mental hospitals back then — no matter how inhumane — with the extermination of more than 6 million Jews and others. In fact, among those killed by the Nazis were up to 250,000 people with disabilities. They were mainly people with mental illness and intellectual disability, the same disabilities as the people who lived at American institutions like Byberry.

Still, Taylor, who has written a new book about the World War II conscientious objectors called Acts of Conscience: World War II, Mental Institutions and Religious Objectors, says the photos punctured a national sense of American superiority.

"We saved the world. We stood for human rights; we condemned the Holocaust," he says. "America's confidence was soaring in the immediate post-World War II era. We were morally superior; we were militarily superior. And I think this was a stark reminder that America wasn't perfect. America had its shortcomings."

In postwar America, the country turned to righting those shortcomings. Conscientious objectors from Byberry started a national association that helped train and professionalize workers at state hospitals. And, most of all, they helped improve the lives of the vulnerable people who lived in those state institutions.

The COs from Byberry continued to work for social change, in political activism and in the jobs they chose.

Charlie Lord became a professional photographer and a social worker. The Bartholomew brothers both went into social work. John Bartholomew worked for a mental health group that moved people out of institutions and into small group homes.

Neal Hartman was a teacher. Warren Sawyer sold real estate and is proudest of the way he helped integrate neighborhoods.

Sawyer says what he saw at Byberry — and what he saw could be changed — fortified his dedication to work for human rights. His work at Byberry, he says "changed my life in terms of appreciation of people who are forgotten. It makes me want to make people aware of the many things that need to be done, that people need to be involved in doing things."

Disabled Coloradoans sue over cuts to Medicaid benefits

From The Denver Post:

A group of disabled Coloradans who say their Medicaid benefits were cut without warning is suing the state, claiming the reductions strapped their budgets for in-home health care just before the holidays.

The complaint against the state Department of Health Care Policy and Financing is the second filed this month alleging the Medicaid program is treating disabled people unfairly.

The latest lawsuit isn't focused on the cuts in benefits — the entire Medicaid program was slammed with budget reductions this fall — but the lack of notice.

Up to 750 disabled residents rely on monthly Medicaid benefits to pay nurses and caregivers to help them bathe, dress, cook and take medications in their homes. They are enrolled in a program that lets them hire, fire and manage their own attendants instead of working through a home-health agency.

Some of those in the program received letters in October informing them of a 1.5 percent cut in their allocation — retroactive to Sept. 1 — without explanation or, they claim, legally required notice that they were allowed to appeal.

Other patients received no notification at all.

The lawsuit, which seeks to represent the whole class of Medicaid beneficiaries, alleges the cut was more than cuts levied on other people who receive home-health services.

Additional rate cuts came in December.

The state contracted with a new company to dispense payroll checks for nurses and caregivers working in the homes of Medicaid recipients, increasing the new company's cut to 11 percent of those Medicaid allocations instead of the previous 10 percent.

The extra 1 percent came out of beneficiaries' checks, this despite assurances last spring that the new contract would not affect services, according to the Colorado Cross-Disability Coalition, which is organizing the lawsuit.

Also, the state cut an additional 1 percent out of the Medicaid budget. Yet that December round of reductions for Medicaid beneficiaries in the home-health program varied widely — in some cases more than 4 percent.

"Nobody knows what that money is and where it's going," said Kevin Williams, an attorney for the coalition. "Well, somebody knows. But there is no explanation for it.

"What happened was just an unbelievable mess."

Officials with the state Medicaid department would not comment on the lawsuit but said rate cuts are made across the board for services — not set individually for beneficiaries.

"We can't discuss what's in the lawsuit," said department spokeswoman Joanne Lindsay.

The department's rate-reduction schedule shows a 1.5 percent cut Sept. 1 and an additional 1 percent cut Dec. 1.

It's unclear then why some disabled Medicaid clients were hit with cuts totaling up to almost 6 percent.

Among those patients is Julie Reiskin, who has multiple sclerosis and lives with two other disabled people.

"We help each other best we can, but I have a paid person come at least five days a week," she said.

Reiskin received a letter Oct. 13 informing her that her Medicaid benefits were reduced 1.5 percent — to $1,460.66 — retroactive to Sept. 1. A second letter Dec. 2 informed her of an additional reduction — a drop to $1,410.30 — effective Dec. 1.

The total cuts to her monthly benefits were more than 4 percent.

Even single-digit rate reductions are huge to disabled Medicaid patients, who often budget every penny of their allotment to pay for in-home help, Williams said.

The disability coalition also sued the state Medicaid department this month on behalf of a disabled woman denied increased in-home benefits after receiving a tracheotomy. The lawsuit claims the state wanted to put her in a nursing home rather than bump up her in-home care budget.

The Medicaid department also has been embroiled in a stalemate with the only two long-term health care facilities in Colorado that had accepted paralyzed patients on ventilators.

The two centers provide less expensive care than hospitals, but the state has cut reimbursement to the point where the centers lose money on each patient.

The program that allows disabled Medicaid patients to live at home — instead of in nursing homes — is designed to save money, but the cuts could actually force patients into nursing homes.

Some of the disabled people in home-based Medicaid programs "are expensive, but they would be more expensive elsewhere," Reiskin said. "At some point, as a society, we have to take a stand and say that people should have a right to be alive."

China probes trafficking, murder of people with intellectual disabilities

From Xinhua:

CHENGDU, China -- Chinese police have arrested nine people suspected of trafficking mentally disabled people from Leibo County in southwest China' Sichuan Province to other areas and then murdering them in coal mines to blackmail the mine owners, police said Dec. 30.

The nine have been arrested in Leibo County in connection with the murders in nine provinces including Hebei, Fujian, Liaoning and Sichuan, said Ye Jianhua, head of the Leibo County’s Public Security Bureau.

This was the first time the police revealed the cases.

One of the suspects surnamed Feng allegedly colluded with another two to batter Zhang, a mentally disabled person, to death with a stone in an iron mine in eastern Fujian Province on April 28.

By making the murder look like an accident, Feng asked for compensation from mine owners saying he was the victim's "relative", police said.

Feng was arrested on May 13.

Leibo police did not provide details of other cases as they were out of their jurisdiction.

"Police in the nine provinces were investigating the cases," Ye said. Leibo police would cooperate with the police in the other provinces to find out more about the crimes, he said.

In a separate case, a mentally disabled miner called Huang Suoge died in a coal mine on November 23, two days after he began working in the Chengui Mining Group in Daye City, central China's Hubei Province.

The company decided to pay 200,000 yuan (29,000 U.S. dollars) to three men who came to Daye and claimed to be Huang's relatives. But when the company was checking their identities, the three men fled without the compensation or the cremains.

"More surprisingly, we got the news from Leibo County that the real Huang Suoge committed suicide three years ago," said Li Yunbao, board chairman of the company.

The Daye city police were checking the identities of the dead and trying to arrest the suspects.

Wednesday, December 30, 2009

British deaf, visually impaired woman begins to use one of country's first "dual purpose" dogs

From the South Wales Argus in the UK:

They say a dog is man’s best friend.

And for a Newport teenager who is deaf and partially sighted, Border Collie pup Kim is becoming a vital lifeline as she is trained to be one of the country’s few “dual purpose” dogs.

Eighteen-year-old Elinor Scott (pictured) was born deaf and is now losing her sight due to Usher's syndrome - a condition damaging cells in the retina of the eye.

Although Elinor communicates using British Sign Language and lives at the family home in Glasllwch, her mum Catherine knew that she would soon want more independence.

Guide dogs trained to look after blind and deaf people are available, and charity Hearing Dogs for Deaf People said it has so far trained 12 dual dogs in partnership with Guide Dogs for the blind.

But Mrs Scott found her daughter does not qualify for one because she does not live independently, and decided to take matters into her own hands.

Six month old border collie Kim moved in with the family in August, and is now being trained to help Elinor with both her disabilities by Newport dog trainer John Bills.

A former police dog handler with 30 years experience, Mr Bills has just finished Kim’s basic training, teaching the puppy to respond to a vocabulary of 20 sign language commands such as “sit” and “stay”, as well as guiding skills to help Elinor find her way around safely.

The second stage of Kim's training, due to start in January, will involve agility training.

But over the next two years, Kim will also be taught to alert Elinor to sounds, such as an alarm clock or a ringing smoke detector, through touching her.

The whole process is expected to cost in excess of £300.

But if the training is successful, Mrs Scott hopes her daughter will eventually be able to move out into sheltered housing, where she can live independently with Kim.

She said: “Kim is giving Elinor some independence and the companionship is great because as a deaf person who is losing your sight, it can be very isolating.

“Elinor has found it hard to come to terms with her deteriorating eye sight and the puppy has given her a new lease of life.”

Britain works to develop testing system to classify Paralympic athletes with intellectual disabilities

From UKPA:

British academics are working to create a computerised testing system to help classify athletes with a learning disability, it has been announced.

The London 2012 Paralympics will be the first time athletes with an intellectual disability have been allowed to compete at an international multi-disability sports event since the 2000 Sydney Paralympics.

Loughborough University researchers led by Dr Stephan Bandelow have so far developed an automated touch screen test. They are currently working with sports scientists in analysing data taken from 700 athletes who used the system during competition and training.

Dr Bandelow said: "The programme tests reaction times, reasoning abilities, memory and concentration and is designed to measure problems with information processing that are prevalent amongst individuals with a learning disability.

"We also aim to develop sport-specific testing for sports including athletics, swimming and table tennis, based on the cognitive demands associated with each discipline."

Medical records, IQ tests and in-competition assessments in addition to psychometric testing will also be used as part of the developing process, a Loughborough spokesman said.

New iPhone app allows people with MS to manage their health care

From PR Newswire:

MECHANICSBURG, Pa. -- A Pennsylvania-based company has just released a healthcare management application that targets Multiple Sclerosis (MS) patients to the App Store.

David Warden, who was diagnosed with Multiple Sclerosis (MS) in 2008, created an application called i-Inject that allows fellow patients to manage details of their healthcare. The application provides a place for users to track their rotation of injection sites, set medication reminders and run various reports regarding their medication inventories and use.

"By using your iPhone® or iPod touch®, you don't have to organize and carry paper journals. You can track your injections and oral meds and even e-mail records to your doctor, all on a device you already use every day," David says. The application helps the user log the times and dates of drug administrations, reactions to medications and how many doses the patient has left in their inventory.

David owns Elite Circle Computing, an Information Technology (IT) consulting company, and collaborated with an application developer to bring his vision to life. Since being diagnosed and having to organize several medications and dosing schedules, David dreamed of a more technically streamlined and accurate way to manage his healthcare.

i-Inject is available for download to any iPhone or iPod touch mobile digital device for $14.99. For additional information about i-Inject, visit

Canadian mom launches "medical daycare" for disabled children who need extra care

From the Regina Leader-Post:

REGINA, Canada — The whole idea started with Hope — a little girl who spent her entire life, from birth to early death, in a hospital ward.

Hope was one of Jacque Tisher's foster daughters, born with spina bifida, a dangerous birth defect of the spine. She was 10 months old when she died.

Her death led her grieving mother to wonder — why does society do such a splendid job of caring for very ill children, then cut their families loose with few supports when they're released from hospital? Wondering led Tisher, a nurse and mom to a 16-year-old special needs child, to launch Hope's Home in Regina, the first medical daycare in Canada.

"This little girl who only lived 10 months really is changing how we care for medically fragile children in our province and in our country," said Tisher.

Hope's Home was started out of Tisher's home in November 2005. Tisher wanted to fill the gap in community care for families with medically fragile children, who are dependent upon medical technology to survive.

These children no longer live in hospitals and often require 24-hour care.

Their families are not only under great financial strain, but they might not be able to go to work or school or even get a break from the round-the-clock pressure of caring for a sick child.

Hope's Home offers respite and a licenced daycare — which also cares for the siblings of medically fragile children — through the Saskatchewan Ministry of Education. A few months ago, the home increased its available spaces from 30 to 41. Today it's full, with a waiting list.

Parents of medically fragile children pay a regular daycare fee, said Tisher.

"I don't believe a parent should be punished because they have a child that has high needs," she said. "Being a mom of a child with special needs, I don't think it's fair to expect parents to pay more."

The response to Hope's Home has been tremendous, Tisher modestly said. But it's been tough getting to this point. As Hope's Home is the first of its kind, it's been a struggle to find money.

The provincial government provides funding, but the facility still relies on fundraising efforts and community support.

"We've had to do a lot of fundraising to prove the need and pay for the staff at the same time," said Tisher. "Again, being the first, there's no model that you fit into for funding."

In addition to donations from Ronald McDonald House Charities of Canada, Affinity Credit Union, Tim Hortons and Maxwell House — which recently donated $10,000 to Hope's Home — a local non-profit organization, the Fraternal Order of Eagles 4126, decided to take up the cause.

Led by Tami Running, the group raffled off Saskatchewan Roughrider gear throughout the season and donated the proceeds to Hope's Home. By Grey Cup, they had raised about $6,200 for the home.

"I just cried," said Tisher. "This little group . . . just really took it on themselves, and Tami especially, to recognize a community cause and look at them — they raised over $6,000!"

"It's such a fantastic organization," said Running. "And I believe that it's something that definitely needs everyone's help to keep going."

Asked where she gets her stamina from, Tisher immediately responded: "the kids."

"It's just like no matter how tired you are, you walk in the front door and they're like, 'Hi, Auntie Jacque!' and they run and give you hugs," she said.

"I really believe each child is — and each person that is born — is a gift from God and that we all have a passion and a purpose, even if a child only lived 10 months."

Texas study confirms lower rate of autism among Hispanics

From Reuters:

NEW YORK -- Hispanic kids are less likely than their non-Hispanic white counterparts to be diagnosed with autism, and socioeconomic factors don't seem to explain the difference, according to a new study in Texas schoolchildren.

"These findings raise questions: Is autism under diagnosed among Hispanics? Are there protective factors associated with Hispanic ethnicity?" Dr. Raymond F. Palmer of the University of Texas Health Science Center in San Antonio and his colleagues write in the American Journal of Public Health.

Other research has shown a lower risk of autism among Hispanic individuals, while one study found that Hispanics with autism were typically diagnosed later than autistic children of other ethnic backgrounds. Autism could be under diagnosed among Hispanics, Palmer and his team note, given that these children are less likely to have health insurance and more likely to have trouble accessing medical care.

To investigate the factors behind the difference in prevalence, the researchers looked at data on 1,184 schools in 254 Texas counties, calculating the number of children in kindergarten through 12th grade in each district who had been diagnosed with autism.

For every 10 percent increase in Hispanic schoolchildren in a given district, the researchers found, the prevalence of autism decreased by 11 percent, while the prevalence of kids with intellectual disabilities or learning disabilities increased by 8 percent and 2 percent, respectively.

The reverse was seen as the percentage of non-Hispanic white children in a district increased, with the prevalence of autism rising by 9 percent and the prevalence of intellectual and learning disabilities falling by 11 percent and 2 percent.

The observed relationships remained for Hispanic children after the researchers accounted for key socioeconomic and health care provider factors, although "urbanicity" of a district, median household income, and number of health care professionals did explain the increased percentage of autism among districts with more non-Hispanic white kids -- a finding the researchers call "curious."

Whether lower autism prevalence in Hispanics is attributable to other, still-unexamined socioeconomic, health care delivery or biological factors "remains a crucial area for further research," Palmer and colleagues conclude.

U.S. hacker with Asperger's pleads guilty to theft of card numbers

From Reuters:

BOSTON -- A 28-year-old college dropout pleaded guilty on Dec. 29 to charges that he stole tens of millions of payment card numbers by breaking into corporate computer systems.

Albert Gonzalez (pictured) told a federal judge in Boston that he engineered electronic heists at companies including payment card processor Heartland Payment Systems (HPY.N), 7-Eleven Inc and the Hannaford chain of New England grocery stores.

Gonzalez has previously pleaded guilty to computer break-ins at retailers TJX Cos Inc (TJX.N), BJ's Wholesale Club Inc (BJ.N) and Barnes & Noble (BKS.N).

He faces 17 to 25 years in prison when he is sentenced in March in the largest case of identity theft in U.S. history. The two judges responsible for doling out the punishment have considerable leeway in sentencing.

"You face a considerable amount of time in jail as a result of your plea," U.S. district Judge Douglas Woodlock told Gonzalez. "All aspects of your life are to be affected."

Gonzalez's attorney, Martin Weinberg, has asked for the judges to be lenient, saying his client suffers from Internet addiction, drug abuse and symptoms of a mild form of autism known as Asperger syndrome.

Gonzalez, who appeared in court wearing a beige prison uniform, told the judge that he had abused alcohol and illegal drugs for years. He mentioned marijuana, cocaine, LSD, ketamine and hallucinogenic mushrooms.

"It's one of the reasons to explain why a young man in his 20s did these things," Weinberg said.

A psychiatrist hired by Gonzalez has told the court that the hacker's criminal behavior "was consistent with the description of the Asperger's disorder." Prosecutors have petitioned the court to perform their own psychiatric evaluation of Gonzalez.

Weinberg has sought to block that request, saying it is unprecedented to conduct a psychiatric evaluation prior to sentencing. "He's admitted responsibility. He is remorseful," Weinberg said.

A U.S. federal court in Boston last week sentenced one of Gonzalez's conspirators, Stephen Watt of New York, to two years in prison for developing the software used to capture payment card data. It also ordered him to pay $171.5 million in restitution.

NY researchers show brain waves can be used to type messages on computer screen

From The Business Review in Albany, N.Y.:

Researchers at Albany Medical College have demonstrated an experimental technology that allows people to use brain waves to spell out messages on a computer screen at a faster rate than allowed by other devices.

The findings are part of an ongoing research effort in brain-computer interface (BCI) at the Albany, N.Y., medical school. They were presented earlier this month at the 63rd meeting of the American Epilepsy Society in Boston.

The goal of a BCI system is to allow people—such as those severely paralyzed or “locked in” by amyotrophic lateral sclerosis (ALS), brainstem stroke, severe cerebral palsy or other disorders—to use their brain signals to communicate or manipulate their environment. Past studies have used electroencephalography (EEG)—the recording of electrical activity from electrodes placed on the scalp. The Albany Med method read brainwaves using electrodes placed on the surface of the brain.

“Spelling rates were up to three times faster when compared to using signals from the scalp,” said Dr. Anthony Ritaccio, director of the Epilepsy and Human Brain Mapping Program at Albany Med. “The subject in this study was able to spell with her mind faster than some people can type.”

In the Albany Med study, the subject looked at a monitor that displayed a 6x6 matrix containing alphabetic and numeric characters, and space and backspace commands. Each row and column of the matrix was illuminated randomly and rapidly, at a rate of 16 times per second. The subject’s task was to pay attention to each of the characters she wanted to spell. The computer learned the desired character by interpreting and recording the brain’s responses to the illuminated row and column that commonly contained the desired character.

The subject was able to make character selections at rates of more than 20 characters per minute at or close to 100 percent accuracy.

“These results could further extend communication options, such as e-mail or instant messaging, for people with severe motor disabilities to connect with the outside world,” said Dr. Ritaccio.

Joining Dr. Ritaccio in leading the research team was Dr. Gerwin Schalk, associate professor of neurology at Albany Medical College and research scientist at the Wadsworth Center of the state Department of Health. Over the past decade at Wadsworth, Dr. Schalk has led an international effort to develop a general-purpose software platform for BCIs and brain monitoring. This software is becoming the standard software for BCI research in hundreds of labs around the world.

Stem cells show promise for treating cerebral palsy


ENGLEWOOD, Colo. - Dominic King and Harrison Spiers have so much in common. Best friends for seven years, they are both in the 5th grade at Cottonwood Creek Elementary School. They both love to ride horses. They both love to go to baseball games. And both were born with Cerebral Palsy.

"It's (caused) a lack of oxygen before, during, or right after birth," Dominic's mom, Christina King explained. "With Dominic, we don't know what happened."

Alicia Spiers, Harrison's mother, says he can't feed himself, can't give himself a bath and can't take himself to the bathroom.

"It's just like having a newborn in a 10-year-old's body," Spiers told us.

The families tried everything from therapy to experimental procedures, but nothing seemed to be helping. Then, last year, Harrison's parents asked him what he wanted for Christmas. "I want stem cells," he told them.

His parents knew right where to turn. They had a friend named Jessie Hinkley, a medical student.

"I taught them about a new procedure being done in Germany where they can take stem cells from the bone marrow from that patient and turn them into brain cells, and then go up to the brain and repair sites that were damaged," Hinkley said.

Harrison's father said the procedure is not related to the use of embryonic stem cells.

"There's been a lot of debate on health care, and stem cells. This is not controversial. They are taking it from (Harrison's) own body and putting it back in his own body. It's here and now, not maybe 30 years from now," he said.

But the procedure is not done in the United States, so the boys would have to raise thousands of dollars and travel to Germany. Fortunately, their school and their community stepped up and made it possible.

"It's amazing. I know we keep saying that word, but truly is," Alicia Spears. "(We) hear it everyday on the news…people are being laid off, unemployment numbers are up, money is tight. And yet, people in this neighborhood and this community found a way to write checks."

"It hit me, I started crying in the car and thought this is just unbelievable what people will do," Christina King said.

The boys took the trip to Germany and had the stem cell treatment done in August. They were back in time to start the school year, and their families say they've already started to see the results.

Dominic is starting to read. Harrison is sitting up by himself. Speaking is getting easier. Their parents don't know how much to credit the stem cell therapy, but they are convinced it has made a difference.

"I see things almost every day: (Harrison's) fine motor skills get better, just a little bit more everyday," Alicia Spiers says. "People used to say 'hi' to him and you could count to 10 before he would say 'hi' back. Now it's pretty instant."

Harrison's father hopes other people with other disabilities can take advantage of the procedure.

"There's really no limit to what could happen. That's the part that's intoxicating."

Study shows link between smoking and mental illness

From the Tuscaloosa News in Alabama:

People with mental illnesses are two to three times higher than the general population to be dependent on nicotine, research has shown.

The Alabama Department of Mental Health wants to reduce that percentage, starting with in-patient facilities like Bryce. Effective Jan. 4, the state will ban smoking on all inpatient psychiatric facilities and grounds as part of a new tobacco-free initiative.

“People with a mental illness tend to live 25 years or less than the average citizen,” said ADMH spokesperson John Ziegler. “The main reason for that is not the mental illness, it's the unhealthy lifestyle choices.”

A large percentage of patients who are committed to Bryce Hospital smoke, said Ziegler. According to a 2004 study from the Archives of General Psychiatry, people who smoke often score high on the neuroticism and anxiety scales and may use tobacco to manage their mood, anxiety, stress, anger, social dependence, insecurity or other emotional states.

Smoking also leads to other chronic health problems.

“Our goal is to return 25 years of life to the people we serve,” said John Houston, Commissioner of the ADMH. “Since smoking remains a leading preventable cause of death in the United States, ADMH feels it is essential to take this step toward providing better health and a better quality of life to the community it serves.”

Patients will be provided nicotine management services while being care for by the ADMH. Those services include everything from counseling and group support meetings to anti-nicotine medication, Ziegler said.

New federal voc rehab director talks about her goals

From The News Tribune in Tacoma, Wash.:

Lynnae Ruttledge (pictured), leader of Washington state's Division of Vocational Rehabilitation, is headed to a new job running the $4 billion federal "voc-rehab" program for the Obama administration.

Ruttledge hopes to start Jan. 4 in Washington, D.C., and says she wants to improve the federal program like she is credited with doing for Washington’s after she arrived in Olympia four years ago.

“At the federal level I want to be a part of the economic recovery of the country. I want people with disabilities to be identified as part of the solution and not a part of the problem,’’ Ruttledge, 60, said from her Lacey office this week.

President Barack Obama’s staffers recruited her from Olympia, just as the state Social and Health Services secretary at the time, Robin Arnold-Williams, had recruited her from Oregon. Ruttledge is to serve as commissioner in the Rehabilitative Services Administration, inside the U.S. Department of Education.

In its announcement of her nomination, Obama’s office noted that she worked for 25 years in vocational rehabilitation in Oregon before coming to Washington and that her public service career began in Michigan as a classroom teacher who had herself received vocational rehabilitation aid.

DSHS hasn’t said who will take Ruttledge’s place on an interim basis, and a national search is expected for a permanent replacement. Gov. Chris Gregoire praised Ruttledge’s work earlier this year before the U.S. Senate confirmed the appointment.

“Individuals with disabilities in Washington have had their lives improved thanks to Lynnae’s work. Under Lynnae’s leadership, DVR was able to reduce the waiting list for services from 14,000 to zero, and now provides timely services to Washingtonians with disabilities seeking vocational rehabilitation services,” Gregoire said. Gregoire also gave her the Governor’s Award for Leadership in Management in 2007.

Ruttledge said it took the agency 18 months to erase its backlog, starting with “a real clear vision that we could eliminate our waiting list. When I came in, people had given up hope.’’

Ruttledge said she tried to change the relationship between the agency, clients and vocational professionals. She transferred some jobs from contracted providers to agency staffers, cut spending on contracts and looked for ways “to engage with people with disabilities” and to make sure they wanted to go to work.

An idea from staffers that was put it into practice is now known as WorkStrides. “It’s a way of bringing people with disabilities together with our staff to identify their strengths and to get them focused on what they can do. Through that, it’s a career exploration program. It allowed people with disabilities to identify ways they can be successful. This was really new. We hadn’t done this before,’’ Ruttledge said. “Our staff are really talented people. They just needed new ways to use the talent and skill they had.’’

The agency also created a “Say Hey, Olympia,” program, giving people with disabilities, employers, community partners and leaders a chance to meet quarterly and celebrate the hiring of people with disabilities. That program changed relationships and the strategy has been applied to communities in Seattle, Everett, Spokane and Tacoma, Ruttledge said.

Ruttledge said companies like Safeway have a strong corporate commitment to hiring people with disabilities, and so do state agencies including the departments of Social and Health Services, Ecology and Health. Disabilities range from a person recovering from cancer to a person with epilepsy or a spinal cord injury, a developmental disability, or a veteran’s combat injury.

The federal program, which provides money for rehabilitation services, served about 984,000 disabled people in federal fiscal year 2008. A common misperception is that disabled people “require benefits rather than they are an asset’’ to employers, Ruttledge said.

Jim Larson, president and CEO for the Morningside agency that helps developmentally disabled people in the workplace, said Ruttledge’s work to end the case backlog made a big difference for disabled people looking for work. He also said it helps that someone who has a disability, like Ruttledge, is running the agency.

Ruttledge was born with a partial facial paralysis, which left her legally blind in one eye. The federal and state governments paid for books and tuition to help her earn a bachelor’s degree, which got her foot in the door of employment, Ruttledge said.

But Larson said, “the timing is terrible” on the appointment, because the state loses a seasoned leader at a time of a budget crisis.

“I hope someone who is an interim (director) can be a good leader for them and help them through the next legislative session. There are holes in their budget and they have it patched for awhile,” Larson said, noting that the state gets a $4 federal match for every $1 in state funds in voc-rehab. “But it’s not going to last forever.’’

Tuesday, December 29, 2009

Illinois budget cuts leave therapists for disabled children without jobs, children without treatment

From NBC Chicago:

In 2009, Maria Forsell's life was about to get more complicated.

Her husband, downsized out of a manufacturing job, was unemployed. Her job as an administrative assistant in Plainfield earned barely enough to cover expenses. And her son, Grayson (pictured) -- a precocious blonde-haired toddler only two years old -- was diagnosed with autism.

So Maria turned to the state for help. And that's when she found out the state was broke, too.

"Illinois isn't paying its therapists," Maria said, describing how Early Intervention, the Illinois state agency that provides care to families with autistic children ages 1-3, is weeks and sometimes months behind in paying thousands of therapists who care for special needs children.

"The therapists don't get their checks, so they leave to go work another job at, I don't know, McDonald's or something where they can get a steady paycheck," Maria said. "And what happens to my son then?"

Maria's question may not be rhetorical for long.

Early Intervention is, by the agency's own account, up to 12 weeks behind on paying providers. As the state falls behind, therapists say they're being forced to find alternative employment. And as therapists leave the system, families like Maria's worry that their children will be stranded in developmental limbo.

"If we stop now he'll fall greatly behind," Maria says. "But if there's no money, there's no money."

There's no money.

For the uninitiated, Early Intervention works like this: when a physician examines a toddler and notices developmental lag -- little eye contact, lactose intolerance, jerky limb movements, etc -- he/she refers the family to a Child and Family Services (CFC) office. CFC then recommends occupational and speech therapists, and often a social worker to assist the family.

The therapists and social workers bill the insurance companies and the state for their services. The insurance companies pay. But starting around January 2008, the state fell behind.

"Funding was never an issue when I started," says Tammy Johnson, a social worker who owns her own private practice in Plainfield, and who's worked with Early Intervention since 2003. Part of her job is to recommend therapists to families. "But now, at one point, it was 16 checks I was waiting for. That's when I started to see a lot of providers leave."

Early Intervention acknowledged the problem in its most recent update to care providers.

"DHS/Early Intervention, like most other State Agencies, is experiencing severe delays in payments from the State of Illinois," the update reads. The update goes on to explain that providers are not eligible for expedited payments or unemployment benefits, nor will they receive interest on their late checks.

Each of them simply has to wait.

A spokesperson says the office doesn't keep annual counts of active providers, so they say there's no way to know if the budget crisis is affecting the number of providers enrolled in the program.

The program currently counts 6,533 providers with active credentials, but the office has no way of telling whether those providers are actively working.

To help fight for their back pay, providers and their supporters have started a Facebook group called Illinois Early Intervention Providers Need to Get Paid. The group boasts 1,861 members and is organizing for a January 13th rally in Springfield.

Meanwhile, the therapists still working are having a tough time of it. At least one Plainfield therapist, who asked not to be identified by name, reported they've begun concentrating on older children who are covered by private insurance. Unlike government programs, private insurers continue to pay in a timely manner.

As for those who stay in the system, they continue to have a rough time.

"Slowly but surely my savings is dwindling," says Tammy. "If they don't make these payments, I don't have a job."

Chicago honors cabbies who transport disabled people

From the Chicago Sun-Times:

In 1998, after 20 years with the same company, Clifton Plaxico (pictured) lost his job.

Plaxico was devastated. Needing to support his family, which includes two kids with learning disabilities, Plaxico started driving a cab.

"I never thought in a million years I'd do that," said Plaxico, 52.

But soon the job he never wanted turned into a calling, once he began to focus on transporting the disabled.

His devotion to wheelchair-bound passengers has won him recognition from the City of Chicago -- with one of the city's 2009 "Taxicab Driver Excellence Awards." The prize is more than words. Along with the recognition, Plaxico gets a city taxicab medallion -- which goes these days for about $180,000 and gives drivers a chance to start a business instead of making payments to a medallion owner.

The other 2009 medallion winner is Almas Weldingwala, 46, who also specializes in driving the disabled. Both men drive for Flash Cab.

"It has fulfilled my life, in a way, to get close to these people," said Plaxico, who plans to buy his own wheelchair-accessible cab. "I never knew in my entire life there was such a need."

Weldingwala, who has been driving a cab for 20 years, began specializing in handicapped passengers four years ago. He says driving the disabled gives him a feeling of satisfaction.

"When they see me, they know they're being taken care of," said Weldingwala, who also plans to buy his own taxi. "I get smiles."

Plaxico started driving a wheelchair-accessible cab in 2000. It wasn't a good way to make money back then -- disabled people often call a cab for, say, short trips to the doctor, instead of long hauls to the airport that are more profitable for a cabbie. Plaxico has seen cabbies sent to pick up people in wheelchairs decide to skip them and pick up someone with suitcases instead.

But things got better, as Plaxico developed regular clients. One of his regular passengers, Aaron Michael Barg, had cognitive and physical problems, including being deaf and legally blind. For six years, twice a week, Plaxico drove Aaron the 50 miles between his home in Grayslake and the Philip J. Rock Center and School in Glen Ellyn. Aaron died last January at the age of 18.

Aaron's father, Steve Barg, was so impressed with Plaxico's kindness and reliability that he recommended Plaxico for the excellence award.

"He has a huge heart for anyone with disabilities," said Barg.

"I've met so many nice people," said Plaxico, who last year provided service on 294 days with more than 1,000 wheelchair pickups, more than any other nominee. "It's no longer a job -- these are people I know that I'm actually helping."

Weldingwala received 61 nominations last year, the highest of any candidate. He volunteers at the American Red Cross of Greater Chicago and the Jessie Brown Veterans Assistance Medical Center. Weldingwala also is certified to administer CPR and once had to use this skill with a passenger while waiting for an ambulance.

"It was a really, really strange moment," said Weldingwala. "Every second looks so big. You're praying to God."

Weldingwala isn't yet married, but he said having a medallion will make it easier to do that, and also to start a family.

Judge says non-degree disabled student in Michigan must be allowed to live in dorm at Oakland University

From The AP:

ROCHESTER, Mich. - A judge ordered a suburban Detroit university to allow a non-degree student with a learning disability to live in a student dorm, despite a school policy that allows only students pursuing degrees to live on campus.

U.S. District Judge Patrick Duggan wrote in his Dec. 23 decision that Oakland University was breaking federal law by barring 25-year-old Micah Fialka-Feldman (pictured) from its dorms. He noted a deposition by Mary Beth Snyder, vice president of student affairs, "who referred to some unspecified impact on 'study floors' and 'quiet hours."'

"This assessment instead appears to be grounded on prejudice, stereotypes and/or unfounded fear," Duggan wrote.

Fialka-Feldman's attorney, Chris Davis, said his client wants to live on campus because he has to take the bus to school every day but is involved in student government and likes to attend sporting events.

"It's a convenience issue," Davis said.

Fialka-Feldman, 25, has an impairment that affects his reading and writing and has been attending classes at the school since 2003. He's enrolled in a program for students who otherwise wouldn't be at the university that requires them to take at least three classes at a time.

The Huntington Woods resident said in his lawsuit that the university agreed to let him live on campus but later denied the request.

"I think it's pretty awesome," Fialka-Feldman said Monday. "I'm so happy I've made it this far."

School spokesman Ted Montgomery said the university is evaluating Duggan's order. The judge said his decision is a narrow one and does not clear the way for other students in the same non-degree program to automatically get housing.