Monday, October 31, 2011

In Armenia, disabled people stage protest to illustrate failures, frustrations of capital municipality

From ArmeniaNow:

Last week, a group of wheelchair-bound citizens showed the public and the authorities that in Yerevan neither public transportation, streets nor even state offices are accessible for about 4,000 people who are affected by the slight.

During a campaign Oct. 26, initiated by a number of NGOs dealing with the rights of the disabled, and the Ombudsman’s Office of Armenia, a group of disabled people tried to reach from the Metro’s Republic Square station to the Yerevan Municipality building, in order to pass their letter to Mayor Karen Karapetyan.

In the letter, referring to the UN Convention on the Rights of Persons with Disabilities (enforced in Armenia since 2010) and the RA Law ‘On Social Protection of the Disabled People’, they ask to make the public transportation and constructions, roads, the entrances of open-air and closed institutions, including schools, residences, medical institutions and offices available for the disabled.

Members of Empyray rock band, showman Egor Glumov, editor of ‘Yes’ (I) magazine Ani Kochar, who accompanied her husband, sitting in a wheelchair, joined the campaign.

“Whatever is available for everybody must be available for the disabled. But in Armenia cinemas, cultural institutions, a great part of state buildings, are not for the disabled, there is no accessible transport. So many laws, constructional norms were adopted, government decisions were made, however, no headway was made in the matter, and we feel no changes in our life yet. We will stay dependent on our assistants as we were before, unless real steps are taken,” says head of Unison NGO Armen Alaverdyan who, himself, use a wheelchair.

Member of the campaign, 34-year-old Shushan Nahapetyan (paralyzed since age 12 when a balcony collapsed), who lives in one of Yerevan suburbs, told ArmeniaNow that there are few places in Yerevan, which are available for her, and in case of attending those places she is always accompanied by someone to help her.

“Even if there is no problem in an institution I attend, I meet obstacles outdoors. I hope that the issue of transport will finally be settled. We are not tired of repeating that all people have equal rights, and available environment is for everybody,” says Nahapetyan, who has no independence outside her home.

Alaverdyan says that adjusting the public transport to the disabled does not need as much money and much time as authorities say. He brought London’s example, where in 2000 the adjusted transport made only five percent of public transpiration, whereas in 2006, thanks to the enforced law, the last unsuitable bus was removed to a museum.

“You may say that Great Britain is a rich country, and Armenia is not, but if we compare the transpiration parks of London and all of Armenia, we will see that they are incomparable. So it is possible to do that, it is simply necessary to have a will and definite laws,” Alaverdyan says.

The attempt of the disabled to travel freely failed immediately, as the steep, narrow ramp to the central station of Yerevan was unsuitable and even dangerous for their use.

Ombudsman Karen Andreasyan pointed at the steep ramps saying that even fully-capable person would be challenged by them. Andreasyan accompanied a wheelchair-bound person, in an attempt to board a city bus, only to find that the bus door was too narrow to let the wheelchair in, nor was there a place to store it.

The disabled also tried to enter the office of Prosecutor General, and found that there was no ramp. The demonstrators found a ramp at the reception hall in Yerevan Municipality; however, the participants of the campaign were not invited inside.

Head of the Department of Transport at Yerevan Municipality Henrik Navasardyan came out instead and said that 66 busses which will be imported to Yerevan in mid-December are also not adjusted to the disabled. He promised that they would be adjusted to disabled people by the municipality’s funds next year.

Navasardyan said that as of now there are only two trolleybuses accessible to the disabled in Yerevan. Head of Unison NGO Alaverdyan is not sure that the imported busses will be available for them.

“The municipality’s answer was not something new for us. Let’s understand correctly – common buses will be imported, however, we hope that some of them will be adjusted [to the disabled], and we must actively participate in this process so that the adjustment is not formal and buses become really usable,” he said.

Need for home health aides growing and growing

From the San Antonio Express-News in Texas. In the picture, direct care worker Maria Mullenax prepares lunch for Sooner Bell.

Without her home health aide, Sooner Bell, 34, would be forced to live with her family or in a nursing home or assisted living facility.

Disabled since birth with spina bifida, a congenital neural tube defect, Bell uses a wheelchair and needs help with essentially every facet of her life — getting in and out of bed, dressing, bathing, going to the doctor's office.

Since 2006, she's used in-home care to unhook herself from daily dependence on family or institutions.

“Having a home health aide has given me a tremendous sense of freedom,” she said. “I have a lot of medical issues and I need a lot of care. This just makes me feel like I'm worth something.”

More than 3.8 million “direct-care” workers — home health aides, personal care attendants and certified nurse aides — provide close to 80 percent of all paid, long-term, hands-on care for seniors and the disabled in the nation.

Experts worry there won't be enough workers willing to take on these hard, low-paying jobs that offer few benefits, such as health insurance, and have high turnover rates.

It's estimated an additional 1.1 million, or 35 percent more, direct-care workers will be required to meet this demand by 2018, when caregivers in the home will outnumber those who work in facilities by nearly two to one.

That represents a 52 percent increase in direct-care workers compared to 1998.

Several trends will drive this demand — an aging populace, advances that keep those with chronic conditions living longer and continuing efforts to keep people out of more expensive nursing homes.

Home health aides must demonstrate a certain level of training in basic nursing skills in addition to providing mundane daily living tasks. Personal care aides provide largely unskilled services such as meal preparation, bathing and cleaning. Both work in clients' homes.

In Texas, most direct-care service is provided by government-funded Medicaid programs.

Given the state's low Medicaid reimbursement rate of $9 to $10 an hour, agencies pass that austerity along in the form of low wages. Medicare typically doesn't cover personal care attendants or home health aides unless skilled nursing also is required; private insurance often doesn't cover such care. Families that can afford to tend to purchase such help on their own.

“These are the fastest-growing jobs in the nation, but they're really poor-quality jobs,” said Deane Beebe, spokeswoman for Paraprofessional Health Care Institute, or PHI, an advocacy group for direct-care workers. “What concerns us is that the quality of the care dispensed can really be impacted negatively by quality of the job.”

In addition to being low-paid, direct-care jobs often can involve physically and emotionally demanding work with a frail, vulnerable and challenging population, she added.

Since March, Bell has depended on Maria Mullenax, a home health aide she hired through a local home health agency who works for her 36 hours a week for $261 and is paid for by Medicaid,

She cooks Bell's meals, cleans her house, shops for groceries, takes out the trash.

Perhaps more important, she provides regular companionship, a listening ear, a loving touch.

For Mullenax, 29, who discovered her love of care giving at 15 when she helped tend to an ill grandmother, her current job provides many intangible benefits. She relishes the hands-on care she can provide Bell, and the fact they've developed a close, companionable relationship.

It's the tangibles that are problematic.

She only makes $7.25 an hour — she could get that flipping burgers —and she lacks health insurance for herself and her three children. She has to work holidays. She gets no vacation.

“And if Sooner should get sick and have to go into the hospital for any amount of time, I basically won't have a job” during that time, said Mullenax, who has a high school diploma but is working on an online medical assistant degree.

Still, she loves her work, even the somewhat unpleasant or arduous parts, she said.

Not all direct-care workers are as dedicated, said Halbert Brown, who runs Universal Nursing Services of Texas, one of the some 400 home and community support agencies in San Antonio and 5,000 in Texas.

“The old adage that you get what you pay for is true for a lot of cases,” said Brown, who employs about 60 workers and is constantly having to recruit and hire. “Many people who (apply for a direct-care job) have heard that this is a job where you just get to sit around all day and watch soap operas. Then they find out they actually have to work. Some of them just leave. It's a continual human resource nightmare, basically.”

If he could pay his direct-care workers “even $12 or $15 an hour, then I wouldn't have a turnover problem,” Brown said.

And then there's the problem of workers who abuse, neglect or steal from their clients.

Recently in San Antonio, a paid in-home caregiver of an 82-year-old man was found to have allegedly bilked her client out of more than $30,000. Police completed their investigation and have referred the case to the district attorney's office for prosecution.

For the most part, safeguards are built into the system.

Home health agencies are licensed and monitored by the state, said Cecilia Fedorov, spokeswoman of the Department of Aging and Disability Services.

A plethora of regulations govern their operations, including the requirement to perform criminal background checks and other employee misconduct registry searches before hiring a direct-care applicant. Infractions are investigated and penalized. Still, Brown said, the unsavory can slip through. (It's unclear if the caregiver in the recent alleged theft case worked for an agency.)

Agencies must test home health aides in basic nursing skills and provide any additional necessary training; personal care attendants must prove they are competent in providing basic “activities of daily living” for clients before being placed in client homes. Most agencies require a high school diploma or GED of prospective direct-care employees.

Some consumers or their families opt to bypass agencies altogether, finding in-home workers on their own via the Internet or other search methods — a strategy fraught with danger, said industry experts: Without agency safeguards, it's hard to know exactly who you're welcoming into your or your loved one's home.

But the newest nationwide trend involves “consumer directed services” — programs in which individuals hire, train, set the pay for and schedule their own direct-care workers.

In Texas, users of state-funded consumer directed services report that going this route, instead of relying on agencies, allows them more freedom and satisfaction, Fedorov said.

Even with consumer-directed services, clients still get help from specific agencies when it comes to paying employer taxes, conducting background checks and handling other issues.

Such services give consumers a greater degree of autonomy in how they receive home-centered care but with the added protection an agency can provide, Fedorov said.

But Steven Edelstein, national policy director of PHI, said more revolutionary changes are necessary if the nation is to handle the coming tidal wave of need for direct-care workers.

“We don't want to think about aging and disability, but so many families are already struggling with this right now,” he said. “People are just doing what they can for their loved ones, but we need to look at direct-care as a larger public policy issue. This impacts such a huge percentage of the population.”

In Sweden, founder, artistic director of Mooms Theatre for actors with intellectual disabilities, Kjell Stjernholm, moves on to new challenges

From Mooms Theatre press release and information from Kjell Stjernholm. Pictured is a performance directed by Kjell Stjernholm in 2003.

The internationally known Mooms Theatre of Sweden is undergoing a reorganization.

“The founder and artistic director Kjell Stjernholm have after 25 years decided to leave the Mooms Theatre," according to a Mooms Theatre press release. "The new artistic director will be Per Thornqvist, who has worked as a producer, director and scriptwriter of Mooms since 2002. Per Thörnqvist will step in February 2012.

"Manager Suzanne Hedstrom Hellberg stays at the theatre. Kjell Stjernholm will remain at Mooms Theatre in 2012, as director of the show 'I want to be a mother,' in collaboration with the Gothenburg City Theatre," the theatre reports.

Media dis&dat profiled the Mooms Theatre in June 2010.

Stjernholm says he is leaving because he has reached the goals he had for the Theatre.

"To some it may sound strange that I - as I do now - choose to leave a place you love working," he said. "For me it's about reaching my objectives. I always wanted to create a theatre where the actors are the identity, and where social links, as the one to me, is given less importance.

"After 25 years we have a theater where actors with developmental disabilities are working professionally on an equal level with normative colleagues. Where the actors, despite their intellectual disabilities, have received training at the Theatre Academy and gained a special place in Swedish Arts politics.

"Our ensemble has achieved both artistic success and audience appreciation. Equal pay, high standards and personal influence is granted and achieved. Mooms is today an international leader in its niche, something I am extremely proud of. I've reached my goal," Stjernholm said.

"When I started the theater in 1987, I formulated a goal for myself. That I would continue as long as I knew that there were new challenges - artistically and organizationally - in which I and my combination of skills was optimal. The journey was longer than I thought.

"I couldn’t in my wildest imagination anticipate that we would get here, where we are today. When Mooms began to fight for employment with market wages and equality for our actors, I knew I started walking towards my own expiry date. Either we would fail - and the theatre would close. Or we’d succeed - and my final organizational objective would be reached. It was the latter.

"I am extremely pleased that Per is taking over my role and Suzanne decide to stay.It is the best of possible scenarios. Continuity of the staff, continued security of leadership and innovation in the artistic work," he says.

Future artistic director Per Thörnqvist says, "In 2012, I’m celebrating my 10th anniversary as an employee of Mooms. I was hired as producer, but in the last five years, my main activity has been directing and script creation. My curiosity about what is possible to create with my colleagues here at the theatre, will now have free reign and I promise that we will surprise and surprise again. "

Theatre manager Suzanne Hellberg explained, "I was asked by the board and the theater's next artistic director if I could reconsider my earlier decision to leave the theatre at new year. After discussions with the Board and Per Thörnqvist I see it as I accept a new job when Mooms is now entering a new phase. I look forward to being involved in the theatre that builds on a new artistic motivation and ambition. "

Stjernholm says he will now fully focus on directing another groundbreaking project - Mooms co-production with the Gothenburg City Theater (premiered April 20) involving cooperation on equal terms with one of Sweden's most recognized institutional theatres.

His last collaboration will be to work with the Mooms actors on the play "I want to be a mother" by Ann-Sofie Bárány, which will have its last show in Malmo October 2012.

Friday, October 28, 2011

People with disabilities are now doing worse economically than they were at height of unemployment crisis brought on by Great Recession

From The Post-Gazette in Pittsburgh:

People with disabilities are doing worse now than they were at the height of the unemployment crisis brought on by the Great Recession.

The U.S. Bureau of Labor Statistics just started tracking the employment of people who are disabled in June 2008. And in the post-financial crisis, that community is still in crisis.

Using statistics that are not seasonally adjusted, the bureau has found that the unemployment rate for people who do not have disabilities was 8.5 percent in September compared to 16.1 percent for people with disabilities.

While unemployment for the non-disabled population dropped a full percentage point, from 9.5 percent to 8.5 percent, since June 2009 -- when the recession ended -- the unemployment rate for people with disabilities is higher than it was at the end of the recession: 16.1 percent in September versus 14.3 percent in June 2009.

The percentage of people with disabilities who are counted as unemployed does not tell the whole story. While nearly 70 percent of the non-disabled population of the U.S. takes part in the labor force, only 21 percent of the disability community does.

Despite the passage of the Americans With Disabilities Act in 1990, advocates for people with disabilities say they still face discriminatory hiring practices because of mistaken notions that they will cost the company money.

"The truth is most accommodations are very low-cost," said Susan Henderson, the executive director of Disability Rights, Education and Defense Fund in Berkeley, Calif.

For employees who are blind or have impaired vision, she said, the accommodation can be as inexpensive as screen reading software and a clear aisle to the bathroom.

People who use wheelchairs usually just need a desk that is adjusted to the right height.

Chaz Kellem (pictured), the manager of diversity initiatives for the Pittsburgh Pirates, uses a wheelchair but said the accommodations he needed for work were already there when he joined the Pirates in 2005.

"I do have a keyboard tray and mouse tray at my desk," he said, "but the person before me also had a keyboard tray and mouse tray."

PNC Park, where his office is located, was designed to be wheelchair accessible.

"The truth is most businesses are already employing people with disabilities," Ms. Henderson said, noting that disabilities can include diabetes, cancer and Crohn's disease.

"There are probably people in most work places that have a disability, but no one knows it," she said.

When people think of disabilities, they usually picture someone who is obviously disabled. For instance, the U.S. Department of Labor's Office of Disability Employment Policy's brochure on diversifying work forces by recruiting, hiring and retaining employees with disabilities has a photo on the front with the usual diversity buffet: some women, some minorities and the obviously disabled person -- the only white man in the photo -- is sitting in a wheelchair.

Jill Houghton, interim executive director of the U.S. Business Leadership Network in Washington, D.C., said rather than talk about "accommodations" for people with disabilities, she prefers to use the term "productivity tools," which she credits to Kathy Martinez, the assistant secretary of the labor department's Office of Disability Employment Policy.

Ms. Houghton said that is what any changes are all about: making workers more productive.

The reality, she said, is many people with disabilities start their own businesses when they can't get traction in the labor force.

A boost to those business owners is recent federal legislation that recognizes businesses owned by people who are disabled as minority-owned businesses, making them eligible for various government programs.

At the Three Rivers Center for Independent Living in Wilkinsburg, executive director Stanley Holbrook said the organization can work with employers and employees to make sure accommodations are reasonable so that employees with disabilities perform up to the expectations in place for other workers.

Tuesday, October 25, 2011

First study shows promise for tablets to become key teaching tools for people with autism

From CBS News:

Ten-year-old Nuno Timoteo, an autistic child who does not speak, was thought to have the intelligence and attention span of a two-year-old until teachers put an iPad in his hands and learned he loved opera and classical music. Joshua Hood, 27, also non-verbal and autistic, was thought to understand much of his world, but his lack of speech frustrated him and all around him until he began communicating freely with a touch-screen tablet computer.

Nuno, Joshua and others whose autism prevents normal speech have made these breakthroughs with the help of tablet computers and special applications that allow them to communicate, some for the first time. Lesley Stahl reports on this new tool for understanding autism for a "60 Minutes" segment to be broadcast on Sunday, Oct. 23 at 7 p.m. ET/PT.

Ian Stuart, a special education teacher at the Beverley School in Toronto, works with Nuno and participated in a University of Toronto study to determine how effective the tablet computers can be with autistic students. He believes the touch-screen technology is fast becoming a crucial tool. He used a vocabulary app on the iPad to prompt Nuno with images that Stuart soon learned to his surprise the child knew by name: he could point to the soldier, the saxophone and wind chime when prompted by the words for them. Stuart says he "had no idea to the extent of his vocabulary." But Nuno was even smarter than that. Shown a group of images with an apple and a few sweet treats and asked to point to the healthy snack, the child picked the apple.

Stuart says not every student takes to the device, but for others like Nuno, it's almost a miracle. "Not all of them are going to be engaged by it the same way, but the ones who are engaged by it, it's really...amazing," he tells Stahl.

Another Beverley teacher, Sabrina Morey, says teachers sense there is more going on in their autistic students minds than they are able to communicate. "[Tablet computers] are giving us a tool to really prove that there is more happening."

There was never a doubt that Hood knew many things, but his non-verbal manner made him dependent on others, who often did not know what he wanted or was thinking. With an iPad in his hands and the right applications, Stahl watches him order food in a restaurant, tell him his feelings toward his brother, or say he's happy to be featured on "60 Minutes." Says his mother, Nancy Hood, "The day he started using [the iPad], it blew me away...I wouldn't have known he preferred Coke to Pepsi. He's part of the community...communication is the essence of being human and here he is communicating fully now," she tells Stahl.

Stahl's story also features an interview with a University of Pittsburgh neuroscientist who is delving into the mystery of why more than 30 percent of autistic people cannot speak.

Sony 'subtitle glasses' could give better access to deaf moviegoers

From Digital Trends in August 2011:

Note: The technology is called Dubbed Entertainment Access Technology (DEAT), eyewear that deaf and hard of hearing audience members can use to view movies. It was unveiled at ShowEast 2011 in Miami this week.
For deaf people who like to enjoy films on the big screen, choice is often limited when it comes to the offerings of the local movie theater.

It’s usually only foreign-language movies that have subtitles, leaving the hard of hearing with little choice but to wait for the DVD release of other movies they want to see. And even then, who wants to watch a blockbuster on a small TV screen?

In a short film on the BBC website, reporter Graham Satchell talked to Brit Charlie Swinbourne, who is hard of hearing, about the problem.

“One in six people have some level of deafness and currently that audience isn’t being served well,” he said, adding: ”If you did serve them well, you could well be making more money out of them so there’s good reason for improving the service.”

The solution could come in the form of a special pair of glasses being developed by Sony in the UK. Sony’s Tim Potter, who is helping with the design of the ‘subtitle glasses’, explained what they’re about.

“What we do is put the closed captions or the subtitles onto the screen of the glasses so it’s super-imposed on the cinema screen, [making it look] like the actual subtitles are on the cinema screen,” he said.

After trying them out, Charlie Swinbourne seemed pretty pleased with the effectiveness of the special specs. “The good thing about them is that you’re not refocusing. It doesn’t feel like the words are really near and the screen is far away. It feels like they’re together.”

He continued: “It was a great experience. I think it’s a massive opportunity to improve deaf people’s lives and I think there’s great hope that this would give us a cinema-going future.”

According to the BBC report, the glasses should become available in UK movie theaters next year, with presumably wider availability in the near future if they prove popular.

Sunday, October 23, 2011

Texas Tribune: Gov. Perry and his staff downplayed abuse allegations at Texas institutions for disabled people

From The Texas Tribune:

MEXIA, Texas — At the Mexia State Supported Living Center, on the sun-bleached site of a former World War II prisoner of war camp an hour east of Waco, residents with profound disabilities and behavioral problems spend their days doing repetitive chores: sticking paper into shredders, folding towels, sorting nuts from bolts. And, in some cases, being physically abused, despite a sweeping federal settlement signed in 2009 to prevent it.

In the last two years, a Mexia worker was caught on video pushing down a disabled resident and stepping on his throat while other employees looked on. A staff member goaded one resident into hitting another with a belt, causing bloody wounds and resulting in a trip to the emergency room. A direct-care worker showed residents pornographic pictures and tried to get them to perform oral sex on him. Another sexually abused two residents.

This pattern of abuse appears pronounced in Mexia, where roughly half of the disabled residents are alleged criminal offenders and nearly a third are under 21.

But two and a half years after Texas officials signed an agreement with the United States attorney general’s office aimed at improving conditions in the state’s 13 institutions — following a Justice Department investigation that found avoidable deaths, civil rights violations and systemic abuse — a Texas Tribune review of facility monitoring reports and employee disciplinary records shows that mistreatment is still relatively common.

Although there is some evidence of improvement, the state’s federally designated disability watchdog group, Disability Rights, said that halfway into the five-year settlement agreement, not even a quarter of its requirements have been met.

“It’s all just as bad,” said Beth Mitchell, Disability Rights’ supervising attorney. “The numbers suggest less physical abuse, but we still see a lot of really significant cases. I can’t tell you that there’s one shining example of a wonderful facility, because there’s not.”

Officials with the Department of Aging and Disability Services, which oversees the state-supported living centers, point to evidence of compliance, from advances in security to improvements in staffing.

Nearly 3,500 security cameras have been installed in Texas’ institutions for the disabled. Each facility has an independent investigator to monitor abuse. Potential employees are now fingerprinted and run through background checks before they are hired, and existing employees are subject to random drug tests.

Today, 94 percent of facility jobs are filled, a marked improvement over past years, even with the influx of more than 1,000 new positions established under the settlement agreement. Staff turnover has dropped. And there are now more than three employees for every resident, in part because the census at the state-supported living centers has dropped by nearly 800 residents since late 2008.

But despite more consistent staffing and annual spending that has grown by nearly 50 percent since 2006, abuse allegations have continued to rise steadily, with confirmed allegations hovering at 9 percent. The agency attributes this to better investigations: in the last fiscal year, 375 workers were fired or forced to resign because they abused or neglected disabled residents, more than in any of the previous three years.

Justice Department officials declined to comment on Texas’ efforts thus far. But Cecilia Fedorov, a spokeswoman for the Department of Aging and Disability Services, said that meeting the terms of the agreement is intended to be a long-term process and that “milestone dates” laid out in the agreement are guidelines, not deadlines.

“While progress toward and achievement of substantial compliance has been slower than anticipated by the state, efforts continue to be sustained in every facility,” Ms. Fedorov said in a statement.

Federal investigators have a lengthy history with Texas’ state-supported living centers, formerly known as state schools. The Justice Department sent a team into a Lubbock facility in 2005 and released a highly critical report in 2006 that cited more than 17 deaths at the institution in the previous 18 months.

Despite some improvements made by state leaders, in 2008 the Justice Department announced that it would examine conditions in all 13 Texas institutions. Four months later, investigators published a scathing rebuke, saying residents’ constitutional rights had been violated, and threatened legal action if Texas did not resolve the problems.

In May 2009, four years after the initial investigation in Lubbock, state leaders signed a five-year, $112 million settlement agreement with the United States attorney general’s office, pledging to improve standards of care, increase oversight and monitoring, and enhance staffing.

On a recent visit to the 500-acre Mexia facility, many of these efforts were visible, from paper signs listing the telephone number of an abuse-and-neglect hot line to strategically placed surveillance cameras to the nondescript dormitory office that is home to a state abuse investigator. A sign at the entrance to the property read “Now hiring!”

The workers on duty that morning — many of them veterans with decades of experience — helped residents with their daily tasks, from planting carrots in a garden to removing staples from paper for shredding. They showed off squeaky-clean cement- and linoleum-floored dormitories, an on-site hair salon, a cafe with a jukebox and old movie posters. They shuttled residents between bedrooms and bathrooms and therapy sessions, interacting with a familial warmth that made the facility’s confirmed abuse allegations seem hard to fathom.

Yet records show that awful abuse continues, and not just at Mexia. In the years since the settlement agreement was signed, a staff member at the Lubbock State Supported Living Center beat a resident he was trying to shave and slammed his head into a cabinet. An employee at the Richmond State Supported Living Center was captured on video kicking a resident in the legs, punching him in the neck and chest, and striking him on the head. And a staff member at an Abilene center kicked a resident in the head eight times.

At Mexia, an employee started a romantic liaison with a resident, sending the resident nude photos and calling the resident’s cellphone 452 times. Another worker there failed to supervise a resident, who attempted to construct a Molotov cocktail.

In late spring, seven staff members at a Corpus Christi center were fired for undisclosed abuse allegations. That is the same center where dozens of employees were fired in 2009 for forcing disabled residents into staged fights. Five were convicted of crimes.

Ms. Fedorov, the Aging and Disability Services spokeswoman, said the agency had zero tolerance for abuse and neglect. She said that for the most part, the workers at these facilities are amazing — but that with any public entity, from a school district to a hospital system, there will be some bad apples.

“You have good days and bad days anywhere,” she said. “No matter what you do, from fingerprints to employment history, bad things sometimes happen.”

But watchdogs say that is not an acceptable explanation. Whether the Justice Department will acknowledge it, they say, Texas is not living up to its end of the bargain — as evidenced by the results of frequent status reports released on each center by independent monitors.

Ms. Mitchell said the federal settlement directed facilities to come into compliance with 171 provisions by the end of the agreement in 2014 — and that they should have made substantial progress on at least 150 of them so far. On average, she said, the state-supported living centers have met only 20 percent of those 150 provisions, according to a Disability Rights analysis of facility monitoring reports. The Richmond and Corpus Christi centers have not even broken 13 percent, Ms. Mitchell said.

Ms. Mitchell said that despite reductions in staff turnover, keeping qualified people in their direct-care or nursing jobs is still a major problem. She said that breakdowns in communication still prevent residents from getting the proper therapy and treatment they need. And while security cameras have reduced abuse, it still happens outside their view. In some cases, Ms. Mitchell said, facilities will come into compliance with certain standards — and then fall back out again.

“As much as the department wants to continue to say they have fixed their problems, we don’t see that, and I don’t think the monitors see that,” Ms. Mitchell said. “The fact that we’re still seeing a lot of abuse cases that are pretty significant — the only lucky thing is that now they’re being caught on camera.”

Elyn Saks memoir about schizophrenia spurs others to come forward

From The NY Times:

Researchers have long wondered how some people with schizophrenia can manage their symptoms well enough to build full, successful lives. But such people do not exactly line up to enroll in studies.

For one thing, they are almost always secretive about their diagnosis. For another, volunteering for a study would add yet another burden to their stressful lives.

But that is beginning to change, partly because of the unlikely celebrity of a fellow sufferer. In 2007, after years of weighing the possible risks, Elyn R. Saks (pictured), a professor of law at the University of Southern California, published a memoir of her struggle with schizophrenia, “The Center Cannot Hold.” It became an overnight sensation in mental health circles and a best seller, and it won Dr. Saks a $500,000 MacArthur Foundation “genius” award.

For psychiatric science, the real payoff was her speaking tour. At mental health conferences here and abroad, Dr. Saks, 56, attracted not only doctors and therapists, but also high-functioning people with the same diagnosis as herself — a fellowship of fans, some of whom have volunteered to participate in studies.

“People in the audience would stand up and self-disclose, or sometimes I would be on a panel with someone” who had a similar experience, Dr. Saks said. She also received scores of e-mails from people who had read the book and wanted to meet for lunch. She told many of them about the possibility of participating in a research project.

She now has two studies going, one in Los Angeles and another in San Diego, tracking the routines and treatment decisions of these extraordinary people. The movie producer Jerry Weintraub has optioned the book.

It has been a remarkable response, considering that the book was almost abandoned. Dr. Saks surveyed friends and colleagues for years before publishing it and got very mixed advice. Her husband was against it; the risks were too high. Academic colleagues warned her that coming out with a disorder as serious as schizophrenia could only harm her. “You want to be known as the schizophrenic with a job?” one said.

Her friend Stephen Behnke, director of ethics at the American Psychological Association, was supportive of her decision. “I remember talking about it just on the cusp of when she was going to send off the manuscript,” Dr. Behnke said. “I said that we needed to sit down and make sure she was ready for this. It was like she was about to jump off of a cliff.”

Jump she did. With the MacArthur money, she founded the Saks Institute for Mental Health Law, Policy and Ethics to study mental health and society. She is now working on another book, “Mad Women: A Most Uncommon Friendship,” with the author Terri Cheney, who has written about her struggles with bipolar disorder.

“I was very lucky, being in academia, where people have been very accepting of this,” Dr. Saks said. “Most people struggling to manage a severe mental illness do not have the luxury to do what I did.”

Saturday, October 22, 2011

“Lives Worth Living” review: Documentary to be broadcast on PBS’ Independent Lens Oct. 27, 2011

“Lives Worth Living” review:
To be broadcast on PBS’ Independent Lens Oct. 27, 2011
By Beth Haller ©

Note: Please spread this review far and wide. I would like this documentary to be used in high school and college history curriculum across the USA. I fear that a few showings on PBS and among disability groups are not enough. This film can educate students nationwide about disability history, which is not included in most curricula.

The documentary “Lives Worth Living” places the history of the disability rights movement where it should be – front and center in American culture. As someone who has been studying news media representation of the disability community since 1989, I thought the film might just be an overview of information I already knew. It isn’t. I am completely wowed by this powerful documentary that packs 50 years of disability rights history into 54 minutes.

The documentary comes from filmmaker Eric Neudel, who has produced, directed, and edited numerous award-winning films such as “Eyes on the Prize,” “AIDS: Chapter One,” “LBJ Goes to War,” “Tet 1968,” “Steps,” “After the Crash,” “The Philippines and The US: In Our Image,” and “Body and Soul.”

In “Lives Worth Living,” the audience is taken on a linear journey from World War II to the 1990 passage of the Americans with Disabilities Act (ADA), which is correctly called the “20th century Emancipation Proclamation” for people with disabilities by Sen. Tom Harkin, who co-sponsored the ADA.

The documentary truly lives up to its description as an oral history because it weaves together a fabulous narrative from disability activists, politicians, and independent living advocates. Filling the film with multiple perspectives are people like Judith Heumann, who is now special adviser for international disability rights at the U.S. State Department, activist Fred Fay, Judi Chamberlin, psychiatric rights activist, California congressman and ADA sponsor Tony Coehlo, Bob Kafka of ADAPT, Dr. William Bronston, who helped get Willowbrook closed, and I. King Jordan, the first deaf president of Gallaudet University.

Fred Fay, who became disabled by a spinal cord injury as a teenager, takes center stage to discuss his life as a disabled person who wanted the same rights as everyone else. (Sadly, Fay died August 20, 2011, and the filmmakers dedicated the film to him.) That theme of equal rights and equal access is embedded throughout the film.

He began his activism in the early 1960s, as he says: “when disability and rights were not two words that went together.” I think this is a significant point that the film explores – how disabled people formed a strong, engaged rights movement when most of American culture saw people with disabilities as “patients.”

Fay makes the point that because people with disabilities had little access to society or were locked in institutions, their “lives were being wasted.”

The documentary makes wonderful use of historic images, some of which are unsettling, such as those of abused and demoralized people with intellectual disabilities trapped in the Willowbrook State School on Staten Island. Dr. Bronston, a long-time advocate of closing all these institutions who let TV newsman Geraldo Rivera into the facility to expose the atrocities at Willowbrook, said he went to work there because he thought he would “go serve in hell and see what he could do.”

The architecture of the Rehab Act and the subsequent protests to get it enforced are explored fully. Heumann explains how the rights movement reconfigured early on to become a cross-disability movement.

The documentary shows the links between the returning World War II disabled veterans, the Rehab Act, the Willowbrook closure, the Deaf President Now movement at Gallaudet, the ADA and even compassionate conservative politics. This is significant because even audience members familiar with these events learn more about how they interconnected and built up the cultural force that finally led to the ADA being passed.

The stakes for equal rights and equal access were so high because as Fred Fay explained, cities like Washington, D.C. didn’t even have accessible sidewalks – “It was like the Berlin Wall on every corner.” The documentary sizzles with enlightening comments like this, which show an audience who might be unfamiliar with disability rights just how insurmountable the fight for justice seemed.

The film spends a good bit of time on the political wrangling behind the proposing of and eventual passage of the Americans with Disabilities Act. It details the story behind the famed crawl-in up the U.S. Capitol steps in the efforts to get the ADA passed. And it even discusses the controversy among ADA supporters about whether it was a prudent idea to stage the crawl-in at all. But as Congressman Tony Coehlo explained, “I loved it because it inconvenienced those Senators.”

Although the film’s focus is history, it still brings to mind how disability rights play out in current times. It reminds the audience how much better America is when people with disabilities live and work in their local communities. In 2011, a 31-year-old man with Down syndrome in Minnesota now lives in his own home thanks to a home security system that assures his family that he is safe. He is building independence and confidence, and his neighbors learn more about independent living and people with intellectual disabilities.

Former Galluadet President I. King Jordan summed up the passage of the ADA this way: “That was the day you guys saw us as your peers.”

And if this film can be shown to high school and college history classes nationwide, maybe a whole generation of people will understand the vibrant history of rights for disabled Americans.

Friday, October 21, 2011

In Britain, disabled people plan Hardest Hit campaign rallies in 11 cities from London to Edinburgh

From BBC news:

Disabled people are due to take part in protests planned in cities across the UK against government spending cuts.

Organisers of the Hardest Hit campaign say rallies or marches will take place in 11 cities from London to Edinburgh.

The demonstrators object to cuts in disability living allowance, benefit changes and local service cutbacks.

Ministers say the welfare system is currently failing people and that reforms will see benefits go to those who need them.

The planned protests, organised by the UK Disabled People's Council and the Disability Benefits Consortium, follow on from a demonstration in May in central London.

The events are taking place one year after the government's comprehensive Spending Review, in cities including London, Cardiff, Edinburgh, Leeds, Nottingham and Manchester.

Protesters at the events will carry messages of support sent by disabled peopled who cannot attend in person, organisers say.

Steve Winyard, co-chairman of the Hardest Hit coalition, says the "one single achievement" of disability minister Maria Miller is that she has united the disability movement.

He said: "The proposed cuts have brought together disability charities and disabled people's organisations into a single united force where previously we've had a difficult relationship with differences on policy and ideology."

Fellow chairman Jaspal Dhani said the government had broken its promise to protect disabled people from spending cuts.

"The last 12 months have seen a string of cuts that have hit disabled people the hardest, from benefits changes to local authorities slashing social care budgets and axing concessionary bus passes.

"Disabled people can't be squeezed any further, that is why so many of us will be joining the Hardest Hit protests in cities across the country and online."

Demonstrators are calling on ministers to:

-- ensure changes to disability living allowance - which helps many to live independently - do not make disabled people worse off

-- make sure employment and support allowance, the successor to incapacity benefit, has a fair assessment, does its job and supports disabled people

-- stop cuts to services which are essential to disabled people's quality of life, such as day care, transport and respite care services

-- make sure that the welfare system supports people with the additional costs of living with a disability

A spokesman for the Department for Work and Pensions said the government was "absolutely committed" to supporting disabled people and would spend "more than £40bn a year on disabled people and their services".

He said: "However the current benefit system is not always reaching those who need it most, which is why we are introducing the new personal independence payment to ensure people get the right levels of support.

"And our reforms are more than just changes to benefits. The Sayce Review is looking at how we can use the protected budget for disability employment services more effectively, to get an extra 35,000 disabled people into work."

He added that the government was aware that local council spending care is under pressure and will provide an extra £7.2bn over the next four years to local authorities to help protect services.

"We also know that social care needs urgent reform and that is why the coalition government acted quickly to establish the Commission on Funding Care and Support, chaired by Andrew Dilnot. Now that he has completed his report, we have started an engagement exercise ahead of a Social Care White Paper in the spring," he said.

Organisers say the Hardest Hit campaign is supported by some 40 charities and organisations including Scope, Leonard Cheshire Disability, Mencap, the RNIB and Sense.

Thursday, October 20, 2011

Longtime national, international disability rights advocate, former Deputy Commissioner for Disability and Income Security Programs of Social Security Administration, Susan M. Daniels, dies

Andy Imparato, former President & CEO of AAPD, reported the death of Susan M. Daniels, former Deputy Commissioner for Disability and Income Security Programs of the Social Security Administration, on his Facebook page. She died in D.C. Oct. 20.

AAPD press release from 2003 when Susan Daniels received the AAPD Henry B. Betts Award:

WASHINGTON, DC - The American Association of People with Disabilities (AAPD) proudly announces that The Henry B. Betts Award Committee has... selected Susan M. Daniels, Ph.D., Principal of Daniels and Associates, a firm that focuses on transforming disability policy into practice at the state and local levels, to receive the 2003 Henry B. Betts Award.

An extraordinary longtime national and international disability rights advocate, Dr. Daniels' many accomplishments on behalf of people with disabilities include, while Deputy Commissioner for Disability and Income Security Programs of the Social Security Administration (SSA), laying the foundation for the landmark Ticket to Work and Work Incentive Improvement Act. According to people who know and have worked with her, everything that she has done throughout her life has been with the goal of improving the lives of people with disabilities.

Dr. Daniels was born in New Orleans, Louisiana, and contracted polio at six months of age. Though she spent much of her young life in rehabilitation institutes and hospitals, her parents strived for her full independence, also ensuring that she attended a mainstream school. She went on to graduate summa cum laude from Marquette University (before campuses were accessible), and received her Masters of Psychology from Mississippi State University and her Ph.D. in Psychology from the University of North Carolina.

As Chair of the Department of Rehabilitation Counseling at the Louisiana State University Medical Center, early in her career, Dr. Daniels developed a program to train individuals working with people with intellectual disabilities in community-based settings, which subsequently was a core element in that state's deinstitutionalization efforts. During this same period, she wrote extensively, lectured internationally on disability issues, served as Board Chair of the Louisiana Protection and Advocacy Agency, and co-authored Who Cares: A Handbook on Sexuality and People with Disabilities, the first book ever published in the U.S. on disability and sexuality.

Dr. Daniels went on to hold a number of senior Federal positions, including Deputy Commissioner of the Rehabilitation Services Administration and Associate Commissioner for the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services. In the latter position, she initiated the Home of Your Own program to assist people with disabilities in becoming homeowners and also supported a national Home of Your Own technical assistance center to expand home ownership opportunities for people with disabilities to other states. Home of Your Own networks have since expanded to 27 states.

But perhaps Dr. Daniels' greatest accomplishment is the Ticket to Work and Work Incentive Improvement Act (TWWIIA). As Deputy Commissioner for Disability and Income Security Programs of SSA, where she directed programs that serve more than 11 million people with disabilities, she worked tirelessly to lay the groundwork for TWWIIA. This groundbreaking legislation creates employment incentives for people with disabilities and removes the systemic barriers that have placed too many of this country's citizens with disabilities in the position of having to choose between health coverage and work.

Dr. Daniels' disability-rights advocacy has also reached internationally. She has spoken about disability policy at international conferences and research forums in Europe and Asia; served as President of the US Council of International Rehabilitation and is currently Rehabilitation International's Deputy Vice President for North America; and in 1998, orchestrated efforts to convene the International Women with Disabilities Leadership Forum. Also in 1998, she was the recipient of a citation by Congress and was honored with The 1998 Good Housekeeping Award for Women in Government.

The Henry B. Betts Award was created by the Prince Charitable Trusts and the Rehabilitation Institute of Chicago in 1989 and is administered by AAPD. It is named in honor of Henry B. Betts, M.D., a pioneer in the field of rehabilitation medicine who started his career with the Institute in 1964, making it the base for his career as an advocate for people with physical disabilities and leader in the field of rehabilitation medicine, and who has devoted himself to improving the quality of life for people with disabilities.

"Susan Daniels has been a leading voice for transforming our country's income support policies and programs to bring them in line with the goals of the Americans with Disabilities Act (ADA)," says Andrew J. Imparato, AAPD President and CEO. "Her vision and hard work are making it possible for more disabled Americans to work, own homes, and participate in the American dream. AAPD is delighted to join with the Rehabilitation Institute of Chicago in recognizing Susan Daniels for what she has done and what she will do in the coming years."

British comedian Ricky Gervais angers Down syndrome groups with tweets

From ABC News:

Did Ricky Gervais cross the line by being his usual, I-could-care-less-what-people-think-about-me self?

The British comedian evoked online ire after posting a series of tweets referencing “mongs,” once a slur directed at people with Down’s Syndrome, and sometimes accompanying them with photos of him making silly faces. “Two mongs don’t make a right,” read one tweet. “Night night monglets,” he told his followers on Oct. 14.

Criticism came quick. Comedians and Down’s Syndrome advocacy groups have called out Gervais for reviving the word, but he claims “mong” now means something else.

“Well done everyone who pointed out that Mong USED to be a derogatory term for DS,” he wrote, referring to Down’s Syndrome. “Gay USED to mean happy. Words change. Get over it.”

Responding to a follower who asked “What is a mong?,” Gervais replied, “A div, a dozy spud headed twonk. I would NEVER use it to mean downs syndrome.” Gervais also circulated a page from decreeing that the definition of mong is “complete idiot.”

Now the “Office” creator has turned the conversation about him into a joke of its own. “The police just came round and confiscated all my awards,” he tweeted today, along with the above photo.

Quandary posed by new Down syndrome blood test

From The NY Times:

A new test was introduced Monday that can determine if a fetus has Down syndrome using a sample of the mother’s blood. The test, and others like it, are expected to reach the market in the coming year and might eventually reduce the need for invasive tests that carry a slight risk of inducing miscarriages.

But some advocates for those with Down syndrome fear the new tests, which can be conducted as early as the 10th week of pregnancy, will lead to more abortions and reduce the population of those with Down syndrome. And they lament what they say is the perception that lives with Down syndrome are not worth living.

Dr. Brian G. Skotko, a specialist in the Down syndrome program at Children’s Hospital Boston, said that the number of babies born annually with Down syndrome in the United States declined 11 percent from 1989 to 2006. This was during a period when the number of such births would have been expected to increase by 42 percent because more women were putting off child-bearing until they were older, when the risk of an affected pregnancy increased.

The reason is that most women who find they are carrying a fetus with Down syndrome, which causes mild to moderate mental retardation, terminate the pregnancy.

Yet most women deemed at a higher-than-usual risk of an affected pregnancy do not get the invasive tests – amniocentesis or chorionic villus sampling – that can diagnose Down syndrome in the fetus.

Marcy Graham, a spokeswoman for Sequenom, the company that introduced the new test Monday, said there were an estimated 750,000 high-risk pregnancies a year in the United States, but only 200,000 invasive tests.

One reason women forgo testing is that many are willing to have a baby with Down syndrome. But there are others who avoid the invasive tests because they have a slight risk – often cited as one in 200 but probably lower – of inducing a miscarriage.

“This is an absolutely every-day occurrence for me that I talk to someone who is 37 years old and doesn’t want a Down syndrome baby but doesn’t want to go through an invasive procedure,’’ said Dr. Stephen A. Brown, associate professor of obstetrics and gynecology at the University of Vermont.

The new tests should eliminate that miscarriage risk, leading to a big upsurge in testing and Down syndrome diagnoses, and possibly more abortions.

“Will we slowly start to see babies born with Down syndrome disappear?’’ asked Dr. Skotko, who has a sister with the condition.

He and some colleagues recently published the results of a survey in which nearly 99 percent of people with Down syndrome said they were happy with their lives.

Parents of such children also said they were happy. About 79 percent of parents said their outlook on life was more positive because of their child.

There is also an upsurge in efforts to develop drugs to improve the learning ability of those with Down syndrome. One of the drug researchers, Alberto Costa, who has a daughter with the condition, told The New York Times Magazine:

“It’s like we’re in a race against the people who are promoting those early screening methods. These tests are going to be quite accessible. At that point, one would expect a precipitous drop in the rate of birth of children with Down syndrome. If we’re not quick enough to offer alternatives, this field might collapse.’’

Youth theater kids tackle topic of bullying, Asperger's syndrome in play they wrote

From The Sheboygan Press in Wisconsin:

Edison Thomas is an interesting guy. So are the young people who brought him to life.

The Theater for Young Audiences Rising Stars Troupe did something a little unusual for its next show, "The Reinvention of Edison Thomas," which will run Friday, Saturday and Sunday Oct. 21-23.

That is, they wrote it themselves.

Led by artistic director Deb Sabol-Williams and TYA parent Sherri Byrand, a group of 15 students spent the month of August turning the book "The Reinvention of Edison Thomas," about a high school student with Asperger's syndrome who tries to find a way to cope with bullies and fit in, into a play.

Tuesday, October 18, 2011

MTV’s next reality star: Gallaudet University series, "Quiet Campus"

From The NY Times:

MTV’s college channel, mtvU, which has taken its cameras and microphones into lectures, concerts and protests at schools across the country, will next attempt to capture university life of an entirely different nature: a campus where nearly all students are deaf.

On Monday, the cable network will formally announce the debut of a short-form series, “Quiet Campus,” that will follow four students at Gallaudet University, the four-year school for the deaf and hard of hearing in Washington, D.C.

In spite of the school’s unique mission, those involved say that the series, which is set to premiere on Oct. 24, will deliver drama characteristic of MTV programming and college life, with footage of class lectures and keg parties alike.

“Students here are just like students anywhere else,” said Catherine Murphy, a spokeswoman for the university. “They’re typical undergraduates.”

Paul Ricci, executive producer of mtvU and creator of the series, said that “Quiet Campus” was inspired by his desire to illustrate the universality of the college experience.

Six years ago, Mr. Ricci took cameras on spring break with two dozen deaf college students to capture their vacation in one short episode. Since then, he said, he had wanted to expand on that piece and follow deaf students in their everyday lives. While his proposal was initially met with skepticism by Gallaudet and its students, mtvU ultimately won its participants over with its emphasis on the normalcy of living life with a hearing impairment.

“Our goal was to get into the school culture and see it through these kids’ eyes,” Mr. Ricci said. “By the end, we want viewers to almost forget these students are deaf.”

To do so, the show chose to focus on common collegiate themes: competition in the classroom and the sports arena; relationships and sexuality; independent living away from home.

The show’s principal characters include a gay Latino student, a charismatic football player and a young woman who lost her hearing in chemotherapy treatment. There is also a young man trying to, as mtvU puts it, “find his way out of the friend zone,” and perhaps kindle a romantic spark with the aforementioned cancer survivor.

Three of the featured students were interviewed via e-mail by The Choice, calling the experience of having a camera trained on them “weird” — in the words of one — but worth it.

“It’s important that the audience can finally realize that we can relate to the same lifestyle as them,” wrote Clayton Lawson, who is now a junior at Gallaudet. “Just because we’re deaf doesn’t mean we don’t have a social life or go through normal, everyday problems.”

With a fused focus on the college experience and the hearing impaired, the show will echo two past MTV series: “College Life,” which featured undergraduates at the University of Wisconsin-Madison, and “True Life: I’m Deaf,” which followed, among others, a young, hard-of-hearing woman who studied at Towson University in Maryland.

“Quiet Campus,” which will include voiceovers and subtitles, will likely resonate with fans of “Switched at Birth,” the popular ABC Family series — launched in June to record-breaking ratings — which follows the fictional lives of two high school girls, one of them deaf and debating enrolling in a hearing school.

The show will also provide a window into the world of higher education for the deaf, allowing prospective students — hearing-impaired or not — to experience campus reality without an in-person visit.

While “Quiet Campus” will feature deaf students exclusively, Gallaudet, which had an acceptance rate of 75 percent in 2009, enrolls both deaf and hearing undergraduates in its annual class of about 300. Hearing students must have some proficiency in American Sign Language and are limited to 5 percent of the student population unless majoring in interpretation, Ms. Murphy said. They are required to complete a different application for admission along with an in-person interview, not required for deaf students.

Gallaudet’s admissions are rolling, and while the school draws students from around the world, according to Ms. Murphy, there are three feeder high schools from which a large number of Gallaudet undergraduates matriculate: Maryland School for the Deaf, California School for the Deaf and Gallaudet’s own high school in Washington.

“Quiet Campus” will premiere at Gallaudet on Wednesday, and its first episode will air on mtvU on Oct. 24 at 12 p.m. New episodes will continue for four weeks thereafter.

“I really hope this show will not only change people’s close-minded perspectives of Gallaudet,” Mr. Lawson, one of the students in the series, concluded, “but that it also puts the school on the map.”

Great editorial from NY Daily News: Mayor Bloomberg must make the city's taxis 100% wheelchair-accessible

NY Daily News editorial:

On solid ground, the Justice Department has concluded the city's failure to introduce wheelchair-accessible cabs violates the Americans with Disabilities Act.

Manhattan U.S. Attorney Preet Bharara filed court papers Thursday to notify Judge George Daniels that the government agrees with advocates for the disabled who have sued the Taxi and Limousine Commission. Pulling no punches, Bharara wrote that the TLC "should not be allowed to continue to violate the ADA."

He urged Daniels to order the commission to switch to vehicles that can accommodate wheelchairs as cabs are retired and replaced with Mayor Bloomberg's so-called Taxi of Tomorrow.

Bharara's is the strongest statement to date on the city's responsibility to provide reasonably equal transportation to the handicapped. It's time for TLC Chairman David Yassky to set aside frivolities such as the color of off-duty roof lights and bring the fleet into compliance with federal law.

Basics of the taxi industry are now up in the air.

Bloomberg is pressing Gov. Cuomo and the Legislature to enable livery cars to pick up street hails in the boroughs and northern Manhattan - a plan opposed by the yellow cab industry. He has also picked a Nissan van that cannot handle wheelchairs as the city's universal cab for the future.

Cuomo is studying the livery and wheelchair issues. Bharara's finding should settle the latter for him. There are 13,237 yellow taxis; only 231 can accommodate a wheelchair. That's 1.7%, making the chance of hailing one almost impossible.

That tiny proportion clashes with the ADA's requirement of equality of access and cannot be remedied by a sketchy plan for a system of telephone-dispatched wheelchair-accessible cabs. What's more, federal standards mandate that vans must be accessible when they are employed as cabs.

Bharara got to the point, stating, "a ruling by this court now that the city is obligated to ensure that all new taxicabs are wheelchair-accessible is all the more important because it will likely have a significant impact on both the city's implementation of an accessible taxicab dispatch system and its selection of the vehicle that will become the 'Taxi of Tomorrow.'"

At its next meeting, on Thursday, the TLC is set to approve its first vehicle specifically designed to be a wheelchair-accessible taxi. Bloomberg should accept the inevitable and get with the program by moving to 100% accessibility.

In Massachusetts, quadruple amputee receives hand transplants

From the Boston Globe:

A 65-year-old man who lost his lower arms and legs to a terrible bloodstream infection in 2002 received two new hands during a 12-hour transplant operation at Brigham and Women’s Hospital last week.

The Brigham announced the surgery this morning during a press conference, where the patient, Richard Mangino of Revere (pictured), spoke to reporters.

“It’s just like you can fly,” he said. “It’s like a bird that got its wings back.”

While he spoke, his new hands and forearms were visible, propped up on pillows as he sat in a wheelchair.

Mangino said that it took two days after the surgery for him to adjust to seeing his new hands and that at times it is still surreal. He said he’s begun to feel his new wrist and fingers for brief periods, but it will take months of rehabilitation for him to be able to use his arms.

Forty surgeons, nurses, anesthesiologists, residents, radiologists and physician assistants attached the left and right forearms and hands from an anonymous donor below Mangino’s elbows, including bones, skin, tendons, muscles, ligaments, and blood vessels. The Brigham did not reveal the exact date of the operation to shield the donor’s identity. This morning, the surgeons said Mangino was recovering well.

During an interview with the Globe in August, Mangino -- who became a prolific artist after his amputations -- said he wanted new hands so he could experience the sense of touch again, resume playing the guitar and swimming, and “ride a bike without bumping into everybody else.”

Even as a quadruple amputee, he tirelessly taught himself to do many of the things others take for granted, from dressing himself to picking up a dime from the floor. He relishes that he mastered shoveling waist-deep snow from his walkway last winter. But daily life was exhausting.

“I just want arms to be able to change my clothes without having to think how I am going to put them on, everyday,’’ he said. “Everything is a challenge.”

Mangino, who grew up in East Boston, has three grown sons and two grandsons.

His operation was the second double hand transplant attempted by the plastic surgery team at the Brigham, which has so far focused on face transplants. In May, the team transplanted an entirely new face and two hands onto Charla Nash, a Connecticut woman who was attacked by a chimpanzee.

The face transplant was successful, but the hand transplant failed when Nash experienced an unusual cascade of complications that began with pneumonia after surgery. She developed sepsis, a bloodstream infection, and her blood pressure dropped so low that her new hands were starved of blood -- similar to what happened to Mangino a decade ago when he lost his own lower arms and lower legs.

While the Brigham runs the busiest face transplant program in the United States and one of the largest in the world, a number of hospitals in this country and abroad have done hand transplants for years.

Dr. Bohdan Pomahac, director of plastic surgery transplantation at the Brigham, said that worldwide, more than 50 hands have been transplanted onto about 30 patients -- some were double hand transplants. About a dozen of those hands have been transplanted in the United States, he said. Generally, the results have been good, with 98 percent of patients gaining sensation in their new hands. Patients whose amputations were close to the hand, rather than farther up the arm have the best outcomes and often are able to move their new hands and grasp objects.

Aside from Nash, a couple of other patients have lost transplanted hands due to various complications, including one who stopped taking immunosuppresant medications that keep a patient’s immune system from attacking the new tissue, Pomahac said.

Before he got sick, Mangino was in charge of the ground crew for United Airlines at Logan International Airport. He said he had a kidney stone in March 2002, which developed into sepsis. He almost died, but doctors at Massachusetts General Hospital used powerful medications to put Mangino into a coma to help him heal. The infection ravaged his body, however, depriving his limbs of blood.

He remained in the hospital for two months as doctors tried to save his limbs, regularly unwrapping his bandages and rubbing his legs and arms with oil. Their attempts failed and in July 2002, surgeons amputated his legs about 8 inches below his knees, and his arms about 6 inches below his elbows.

Mangino’s eyes well up with tears when he talks about that time. Suicide briefly crossed his mind when he woke from the coma, because he didn’t want to burden his family, but he has since regained his zest for life.

When his prosthetic legs were being fabricated, Mangino was asked how tall he had been. Five-foot-10, he replied, inflating his height by three inches.

“I already lost a lot,” he said during the August interview, flashing an impish grin. “And everybody wants to be taller.”

Mangino is passionate about music -- he played guitar in bands in the 1960s at Revere Beach and still composes music -- and has a keen interest in art. He began painting regularly after his amputations, holding a brush in the prosthesis he attaches to his left arm, and he displays his works proudly on his basement walls and on a website.

He works out at home four times a week for one-and-a-half hours a day, using a treadmill, bike, and weights. His regimen includes between 500 and 1,000 sit ups, he said.

About a year ago, his wife, Carole, saw news stories about the face transplants at the Brigham. She immediately called the hospital and told doctors about her husband.

Over the past year, Mangino has undergone a battery of psychological and physical tests in preparation for the surgery.

Now that he’s had the transplant, he will return to the Brigham for five days a week for rehabilitation for 18 months.

While Mangino said before the operation that he was eager for new hands, he did not let his disability tear him down.

“There’s a million good things that have happened in my life, my marriage, my kids, we’ve gone to Disney, white water rafting,’’ he said during the interview. “And I am going to let one thing ruin my life?”

Sunday, October 16, 2011

Illinois regulators seek to discipline autism doctor

From The Chicago Tribune:

A Naperville physician featured in a 2009 Tribune investigation into alternative treatments for autism has been charged by the Illinois Department of Financial and Professional Regulation with “unprofessional, unethical and/or dishonorable conduct.”

The complaint against Dr. Anjum Usman alleges that she made false or misleading statements regarding the value of treatments, “demonstrated extreme departure from rational medical judgment” and “abused the patient/physician relationship.” It asks that her medical license be revoked, suspended, placed on probation or otherwise disciplined.

The complaint, filed Wednesday, revolves around Usman’s care of a boy diagnosed with autism whose treatment was described in the Tribune’s series “Dubious Medicine.” The series detailed the many unproven therapies prescribed for the boy and found that many alternative treatments for autism amount to uncontrolled experimentation on children.

According to the complaint, the boy began seeing Usman shortly after he was diagnosed with mild to moderate autism in the spring of 2004. He was not yet 2.

Usman allegedly diagnosed the child with acalcium-to-zinc imbalance, yeast, dysbiosis, low zinc, heavy metal toxicity and abnormally high levels of aluminum, antimony, arsenic, cadmium, copper, lead, nickel, silver, tin, titanium and selenium.

Treatments listed in the complaint include dietary restrictions; nearly three dozen vitamin, enzyme, mineral and other dietary supplements; two antifungal drugs; four chelators or detoxifying drugs; a hormone suppressor, and hyperbaric oxygen treatments, in which the child is shut inside a pressurized bag filled with extra oxygen.

“None of the treatments described above has been proven to influence the course of autism,” the complaint states. And yet Usman “made statements to (the boy’s) mother that the prescribed treatments had positive clinical benefits for children with autism, despite the lack of empirical research.”

At one point, the complaint alleges, Usman prescribed selenium supplements even though the boy’s levels were normal. She “continued to do so even when (the boy) eventually showed a high level,” according to the complaint.

In 2010, the boy’s father, James Coman (pictured), sued Usman and Dr. Daniel Rossignol of Melbourne, Fla., alleging that they harmed his son with “dangerous and unnecessary experimental treatments.” AChicago-area lab, Doctor’s Data, is also named as a defendant in the lawsuit. That case, filed in Cook County Circuit Court, is ongoing.

Both Usman and Rossignol were prominent in the Defeat Autism Now! movement, which has promoted many of the risky and unproven therapies scrutinized by the Tribune in 2009. Both have spoken to parents and physicians at autism conferences, including a large one held in theChicago area each year called Autism One.

Coman’s attorney, David Wilzig, confirmed that Coman filed the complaint that launched the IDFPR investigation into Usman, and that the anonymous child referred to in the complaint is Coman’s son.

Neither Usman nor her attorney immediately responded to requests for comment.

Usman, medical director of the True Health Medical Center, is scheduled to appear before an administrative law judge for the Illinois State Medical Disciplinary Board on Nov. 28.

Canadian film, "How Does It Feel," profiles man with CP who at 58 becomes singer

From The Barrie Examiner in Canada:

Sometimes dreams really do come true.

For Kazumi Tsuruoka (pictured), it began with a passion for music and a life-long desire to sing, even though he had always been told he couldn't.

Singing is a daunting enough task on its own, but Tsuruoka had an added complication — cerebral palsy — which impaired his motor control and speech.

Still, he didn't give up. He sang on his own and at 58 years old, began taking singing lessons. The result had a far reaching impact on both the singer and those who listened to him.

"As soon as I saw it (Tsuruoka's one-man show) it just blew me away," said Lawrence Jackman, who made a documentary film on the singer's journey from learning to sing to creating his own show. "It was an incredible performance."

The film, How Does It Feel, will be shown at the Barrie Film Festival's Director's Brunch next weekend. Jackman and Tsuruoka will both be in Barrie for the screening, the brunch and a question-and-answer session.

The film, which is about 40 minutes in length, takes the form of interviews interspersed with a few songs from Kazumi's one man show and scenes of his work with voice teacher Fides Krucker.

"It kind of recreates the process they went through from when they first started working together to the realization he actually was a talented singer (and) that she could work with him through to putting a show together," said Jackman, adding that Tsuruoka was a natural performer.

The show was called CP Salon and it was staged for the first time in Vancouver, did a run of western Canada and the Yukon two years ago and played at several college campuses in Toronto.

Four songs from Tsuruoka's one-man show are included in the film — rhythm and blues tunes such as Smokey Robinson's Tracks of My Tears.

In the context of the show and the film, the songs take on a different meaning when he's singing them.

Jackman is a Toronto-based director and editor who has worked on many award-winning documentary films. In 2005, he was nominated for a Gemini award for editing the documentary Animals.

Most of his work is for independent films. He also has a long association with the National Film Board of Canada, which produced How Does It Feel. This film also marks Jackman's first time directing for the NFB. While most of his focus is on directing these days, he continues to enjoy the editing process.

"That's when the story comes together," he said. "Anything can happen during the shooting process and then, when you get to the editing stage, you've got all the elements so there's no going back at that point.

"That's where you find the story you actually collected. You have to kind of throw out your expectations and just see what's there to be filmed. It's a very exciting process."

Jackman fell into films when he was looking for work and his first job was in the editorial department of a television show. It was enough of an introduction to appeal to him. The rest he learned from the ground up.

His interest in documentaries has never wavered.

"One of the reason I've always focused on documentaries is that there's always going to be a interest for me — no matter what the subject, who's making it, what the budget is," he said.

"Because you're dealing with real people and real issues, there will always be something that is captivating."

One of his interests is music and How Does It Feel is his second film — the first was about a young saxophone player. With How Does It Feel, Jackman wanted to explore how music affects us both emotionally and physically.

After the film has completed the circuit of small film festivals, it will likely be shown on television before winding upon the NFB website. There is also the hope that How Does It Feel will have a strong educational run, both being shown at and used by schools.

Fonz star Henry Winkler reveals he created 'aaaaay' catchphrase to cover up misery of undiagnosed dyslexia

From The Daily Mail in the UK:

An entire generation will remember the leather-jacketed, bequiffed Arthur Herbert Fonzarelli in Happy Days.

But few would know that one of the most famous catchphrases in seventies television history was created to hide the crippling undiagnosed dyslexia with which Fonz star Henry Winkler was struggling.

Learning lines and reading scripts was a nightmare for the actor, until he came up with a coping mechanism.

The 65-year-old actor told The Times: 'Learning the lines was so hard I reduced an entire paragraph to a sound, "aaaaay".

'And I could use different intonations of "aaaaay" as well. I could make it mean all sorts of things from "Don't mess with me", to "I am hungry".'

Playing the Fonz made Wilder a global favourite in the seventies - but the actor, who was made an OBE by the Queen last month, said that inside he was far from self assured.

Winkler, who spearheads the My Way! campaign which promotes awareness of special needs, said his academic life was miserable.

At school, he says he was ‘the class dunce, someone who was less able, not that bright. Stupid’.

He finally realised at the age of 31 what his problem was when his stepson Jed was diagnosed with dyslexia.

Winkler told The Times: 'The first thing I felt was anger, because I thought, Oh my God, all that feeling bad was for nothing. If only I had known.'

Despite his difficulties, Winkler went on to enjoy incredible success as a much-loved actor.

Happy Days ran from 1974 for ten years, and by the end the Fonz was a global phenomenon, voted the 4th greatest TV character of all time.

His portrayal of the Fonze won Winkler two Golden Globes and three Primetime Emmy nominations.

Winkler is now known to a new generation for his books about Hank Zipzer, a boy with dyslexia, whose experiences are based on the actor's own childhood struggles.

British ambassador Nigel Sheinwald, who presented Winkler's OBE in September, said: 'Through (Winkler), thousands of young people have seen a role model and an inspiration for overcoming their learning challenges.'

The honour was given in recognition of the star's services to children with dyslexia and special educational needs.