Wednesday, November 26, 2014

U.S. Supreme Court justices to decide rights of mentally disabled people during arrests

From USA Today:

WASHINGTON — The Supreme Court will decide whether police need to take a person's mental disability into consideration when making arrests.

The justices agreed Tuesday to hear a case involving a decision by San Francisco police to use force against an armed, mentally ill woman resisting arrest.

The city appealed a ruling from the U.S. Court of Appeals for the 9th Circuit, which said the Americans with Disabilities Act required police to act less aggressively in an effort to defuse the situation. The city argued that officers must put safety considerations before disability accommodations.

Some other federal appeals courts have given law enforcement officials a wider berth in dealing with armed and violent individuals with disabilities. Recognizing a split among appeals courts, the justices agreed to hear the case next spring.

The case involved a woman with mental illness living in a community-based group home. Her social worker asked police to help detain her for further evaluation at a hospital after she threatened him with a knife. In forcibly arresting her, two police officers shot and wounded the woman rather than taking more time to try to talk her into complying.

"Police officers regularly encounter, and often detain, mentally ill individuals," the city's brief said. It cited a study that showed in medium- and large-sized police departments, 7% of all contacts with the public involved people with mental illnesses.

"When mental illness manifests in unpredictable, violent behavior as it did in this case, officers must make split-second decisions that protect the public and themselves from harm," the city said.

Lawyers for the woman, Teresa Sheehan, argued that police "failed to reasonably accommodate her disability when they forced their way back into her room without taking her mental illness into account and without employing tactics that would have been likely to resolve the situation without injury to her or others."

Sunday, November 23, 2014

Theaters pledge to improve movie access for deaf, hearing-impaired people

From The LA Times:

The nation's theater owners have agreed to make their cinemas more accessible to deaf and hard-of-hearing patrons.

The National Assn. of Theatre Owners has reached an agreement with the the Alexander Graham Bell Assn. and other advocacy groups on a new set of recommendations to the Department of Justice, which is conducting a review of guidelines under the Americans with Disabilities Act.

Among other things, the recommendations would require all digital movie theaters nationwide to install closed-captioning and audio description equipment.  The agreement also establishes minimum closed-captioning device requirements and a system for tracking how many patrons use the equipment.

The agreement followed weeks of discussions and represents a compromise over an issue that has sparked clashes in the past.

Over the years, advocacy groups have sued theater chains, alleging they were not doing enough to make their theaters accessible to the deaf and hard-of-hearing community. For their part, theater owners have previously complained about the high costs of installing the equipment, which can range from $3,000 to nearly $40,000, depending on the size of the theater.

“These joint comments are the result of decades of efforts from A.G. Bell’s members and other deaf advocates to attain captioning access in movie theaters," said John F. Stanton, chairman of the public affairs council of A.G. Bell.  "Today is truly a landmark day in captioning access history."

Anna Gilmore Hall, executive director of the Hearing Loss Assn. of America, called it a historic agreement that is a “'Welcome Back' banner for people who had given up going to the movies simply because they could no longer hear.”

The Assn. of Late Deafened Adults and the National Assn. of the Deaf also were part of the agreement with the theater owners' trade group.

More than 38 million Americans live with some sort of hearing disability, and only one third of them go to a movie theater at least once a year. That compares with about 70% of Americans overall who went to the movies at least once in the last year, according to industry surveys.

The nation's largest theater chain, Regal Entertainment, has invested more than $10 million in glasses developed by Sony Electronics Inc. that use holographic technology to project closed-caption text that appears inside the lenses, synchronized with the dialogue on the screen.

“This partnership between deaf and hard-of-hearing advocates and the movie theater industry has been remarkably productive and promises to yield results that will benefit our patrons and expand access to movie theaters in a real, practical and measurable way,” said John Fithian, president of the National Assn. of Theatre Owners.

Tuesday, November 18, 2014

People with communication disabilities speak out about needed technology

From Public Source:

Her voice and hands sapped by ALS, Mount Lebanon resident Mara Sweterlitsch (pictured) uses a speech-generating device to write and print out questions for her next doctor’s appointment.

Jennifer Lowe, a 46-year-old Brighton Heights woman with cerebral palsy, handles email and phone calls through her communication device to work as an education consultant for students with disabilities.

Isolated in a public housing unit in the North Side of Pittsburgh and paralyzed by ALS, Vaughan Thomas hears about school from his two preteen kids by texting with them from his device. With his eyes, he selects each letter in notes delivered to his children, who live with their mothers.

“Texting, emails, social media, blogs, they make me feel like I'm part of the world,” said Thomas, 46.

For the better part of a year, people who have speech impairment or loss, feared that a sudden, and painfully literal, reinterpretation of Medicare policy would diminish their abilities to communicate. Their advocates and the makers of communications devices also worried about how the changes might affect them.

Since 2001, Medicare has paid for the basic communications device, which costs an average of about $6,000, and the beneficiary could pay for upgrades, like the Internet, phone or functions of a TV remote or thermostat.

Beginning in April, the Centers for Medicare and Medicaid Services (CMS) said beneficiaries could not get upgrades for the devices until after a 13-month rental period.

Then, the agency said that as of Dec. 1 they would no longer approve devices on which these functions were ever possible. In other words, even if the beneficiary wanted to pay for the add-ons, they couldn’t.

Medicare wouldn’t explain why they were doing this, not to PublicSource and not to about 200 lawmakers who sent a letter to CMS in September.

U.S. Rep. Tim Murphy, a Republican who represents parts of Southwestern Pennsylvania and is chairman of a subcommittee with public health oversight, sent a letter Nov. 4 demanding answers for what he called a “cruel and uncompassionate” act.

Two days later, Medicare backpedaled on the tough-guy approach it had taken for several months, calling for a 30-day public comment period as it considers updating the coverage policy to include beyond-speech technology. The comment period ends Dec. 6.

CMS expects to issue revisions to the policy in July.

While some are taking this as a good sign, Lewis Golinker, director at the Assistive Technology Law Center in Ithaca, N.Y., is not as trusting, and he says there are other concerns that are still not addressed, such as routine denials of eye-tracking technology.

“One can view this notice as an attempt by CMS to appear responsive to all the concerns expressed, but to take no action that has any substantive effect,” he said.

CMS’ move may actually extend the confusion. Some manufacturers began sending out devices with the add-ons blacked out months ago as the policy’s meaning was debated.

They didn’t want to give already vulnerable people a preview of what might be quickly taken away from them. Without a definitive answer from CMS, more people with speech loss could be denied opportunities to communicate like any other person.

Someone who already owns their device wouldn’t be affected unless the policy does ultimately change and they have to get it replaced.

‘A lifeline’

Many people with ALS (amyotrophic lateral sclerosis, more commonly known as Lou Gehrig's disease), cerebral palsy, traumatic brain injury, Parkinson’s disease, multiple sclerosis, aphasia and various neurological conditions rely on speech-generating devices.

Medicare has paid for 2,000 to 3,000 devices annually in the United States since it started covering them in 2001.

At that time, gaining the ability to have a face-to-face conversation was a godsend. Many of the technological innovations were available then, but not so ingrained in society as they are now.

Following the 2001 Medicare coverage policy literally would have effectively eliminated any glimmer of independence that many people had become accustomed to.

About 75 percent of people who use speech-generating devices from manufacturer Tobii Dynavox, which has a headquarters in Pittsburgh, unlock their devices. Tobii Dynavox president Tara Rudnicki equated taking away the extras to saying, “You are not important enough to engage in society.”

Andrew Jinks, a speech pathologist at the Center for Assistive Technology in Pittsburgh, said the ruling would force manufacturers to time warp the devices back to the 1980s. “It’s like having a smartphone and taking it back to two tin cans and a string,” he said.

Face-to-face conversation is often too difficult to arrange for these people when a child goes off to college, or when trying to coordinate care through several caregivers and support services. And forget ever having a private phone call; without phone functions on the device, someone else would have to start and end the phone call, and they must talk over the speakerphone.

“To them, it’s not a toy; it’s a lifeline and it’s not frivolous,” said Shelly DeButts, a spokeswoman for United Cerebral Palsy. “It’s difficult for people to understand how restrictive having a disability can be socially and economically.”

CMS hasn’t indicated that cutting these functions is designed to save money.

“[We] have yet to find out the rationale for the change to a policy which, for 13 years, had operated without known fraud and abuse,” said Amy Goldman, co-executive director of the Institute on Disabilities at Temple University.

The potential changes are also affecting the business of speech-generating devices. Tobii Dynavox, one of the largest manufacturers of communication devices in the country, would have to drop two device models that could not permanently lock extra functions.

“Which means a beneficiary does not have the opportunity to have the device that works best for their needs,” Rudnicki said.

Taking devices away

Medicare enacted another policy change in April, creating a 13-month rental period before the user owns the device. They used to become owners right away.

Doesn’t sound so bad, but that means the user can’t get email, text or other upgrades for 13 months. Valuable time for someone with any of these devastating conditions.

Another potential consequence has intimidated people who use communication devices: If the user is admitted to a hospital, nursing home, hospice or any other assisted living facility while it’s still a rental, the device will be taken away.

“Those are critical moments to express what kind of care they need,” said Marie Folino, director of care services at the ALS Association’s Western Pennsylvania Chapter.

Sweterlitsch, 47, said her device was crucial to communicate what she needed and what she was feeling during her last hospital stay. “When I was in the hospital, I needed to speak up about errors,” she said.
Medicare provides a fixed payment to facilities, and the facilities are expected to provide equipment during the person’s stay there.

However, a communication device is often customized to work especially well for that one person and it takes time to make the adjustments and for the user to learn to use it. Plus, many facilities don’t have the budgets to provide them.

They generally range from $5,000 to $12,000 retail. Medicare pays for the devices at a discounted rate.
CMS spokesman Aaron Albright said few people who use the devices are admitted into facilities. For example, he wrote in an email, only about 300 people who use speech-generating devices are admitted to skilled nursing facilities per year.

Bruce Baker, the founder of Minspeak, a language system used on many devices, said the rental structure has also put a financial strain on his Castle Shannon company, Semantic Compaction Systems. They’re used to being paid for the device outright, which allows them to make frequent technology upgrades. With the payments spread out, Baker said they’re having trouble keeping up with waves of new technology.
Baker is optimistic that an updated coverage policy will reverse that change.

“I just can’t believe the federal government would do something quite as negative,” he said. “I think reason will prevail.”

Eye tracking

Speech-generating devices are needed by people with multiple disabilities.

Some people, like Mara, use a head-controlled mouse. Others may be able to use their hands or even their toes.

And then there are people like Thomas, who is almost completely paralyzed. He can still smile, especially at any mention of his children, but otherwise, he mostly conveys his thoughts by darting his eyes at the appropriate letters or icons.

Eye-tracking technology is one of the most advanced and expensive ways of accessing the communication device.

Though Medicare hasn’t explicitly said it’s not covering eye tracking anymore, manufacturers and assistive technology experts say they’ve recognized a pattern of denials.

In fact, Tobii Dynavox, a leader in eye-tracking technology, has taken at least a $1.6 million hit in the last 14 months because it has not been reimbursed by Medicare for the eye-tracking technology it has provided to beneficiaries, Rudnicki said. “You can certainly see how much we have put in and how much we don’t want the beneficiary to suffer.”

It’s unclear why it’s being denied. Again, CMS wouldn’t say.

But manufacturers have heard the technology has caused CMS to bristle because it is becoming a hot item in commercial products and anyone can use it, so they might wonder if people who don’t need it are jumping to ‘the cadillac’ when they could still be using a head mouse or another cheaper option.

Thomas doesn't see it as a luxury — it bridges the divide between his mind and body.

“It allows me to keep my mind sharp and active instead of dwelling on this disease and sinking into a deep depression.”

Thursday, November 13, 2014

Contest seeks developers to create transit apps aimed at New Yorkers with disabilities

From NY1:

Like any New Yorker, Quemuel Arroyo knows the ins, the outs, the ups and the downs of mass transit. He rides the subway, after all.

"My MetroCard is the closest I'll get to a driver's license," Arroyo said.

As a rider with a disability, moving around requires more than a little effort to navigate an old system where fewer than one-quarter of the 468 stations are fully accessible.

"Every day, I have to map a route and cross-reference that route with the New York City Transit website to make sure that those elevators are hopefully working," Arroyo said.

So on Wednesday, he joined officials from the MTA, AT&T and Transit Wireless to announce App Quest 3.0, a contest that invites developers to mine the authority's data to create apps for commuters.

"This technology has the potential to revolutionize the way that people use our system, from tourists trying to find their way to people with disabilities to lifelong New Yorkers who want to be in the subway car closest to the exit they use every day," said MTA Chairman Thomas Prendergast.

The contest offers $50,000 in prize money from AT&T, and for the first time, one of the prizes is a $10,000 payout for creating the best accessibility app for commuters with disabilities.

"Developers can come up with helpful ways for disabled communities to find the entrances and exits more easily, to understand where elevators are and where they're not, to understand when you get off a subway, which way to turn to find the nearest exit," said Marissa Shorenstein, president of AT&T New York.

Arroyo said having real-time information in a system where more stations are getting wireless reception would be a huge boon for the 850,000 New Yorkers with disabilities.

"The main challenge is elevators and escalators, knowing when they're out of service and knowing where they are," he said.

The challenge, in turn, for the tech-savvy set is to convert data about the subway system into easy-to-use apps that fit in your hand.

App developers have until February 3 at 5 p.m. to submit their apps for consideration in the contest. Winners are set to be announced in mid-March.

Comcast launches ‘Talking Guide’ for blind people

From Lost Remote:

Comcast announced a new feature to help the blind and visually impaired better watch television and use the Comcast X1 platform.

The “talking guide” will be released over the next few weeks to Comcast customers. Customers don’t have to download anything or buy new hardware; the feature is available just by tapping the A button twice on the remote control. The “talking guide” is a female voice that reads the guide, with program names, networks, and time slots, as well as On Demand and DVR information. It will also read program information and ratings that Comcast features from Rotten Tomatoes and Common Sense Media. They plan to have search functionality included in future versions of the talking guide.

Comcast hired a Vice President of Audience in 2012, Tom Wlodkowski , to specifically focus on increasing usability for people with disabilities. According to Comcast and the United States Census, about 19 million household include a person with a disability, 8.1 million of those with a visual impairment. Cable companies and Smart TVs are a good place to start innovating for them.

Wlodkowski said in a statement: "The talking guide is as much about usability as it is about accessibility. We think about accessibility from the design of a product all the way through production and this feature is the result of years of work by our team including customer research, focus groups and industry partnerships. For people like me who are blind, this new interface opens up a whole new world of options for watching TV."

You can see how the guide works in this video:

Thursday, November 6, 2014

For Russian kids, disability often means life in an orphanage

From NPR. (Note: Vladimir Putin banned Americans from adopting Russian children in 2012, which could mean the early death of disabled children in Russian orphanages.)

Dasha Daunis (pictured) is a lively 15-year-old who loves animals. She talks with her mother, Anastasia, about a recent trip to the circus, where they saw her favorite, bears.

Dasha was born with Down syndrome, and Anastasia says the doctors at the hospital told her that her baby would never thrive.

"Everyone was saying, the most reasonable decision is to abandon the child, because it's a cross you'll have to bear all your life," she recalls. "This child will never even understand that you are its father and mother. And your friends and your family will turn away from you."

Anastasia says she couldn't bear to leave her child behind, and after more than a year, she brought Dasha home from the orphanage. She never regretted her decision.

Instead, she thinks the doctors who advised her were in need of help and better information themselves.
But this Russian habit of placing disabled children in orphanages has changed little over the years, according to a new report highlighting problems with Russia's treatment of disabled kids.

Human Rights Watch, the U.S.-based group, says that nearly 30 percent of Russian children with disabilities live in state orphanages.

"We do believe that people are still being advised to institutionalize their children," says Andrea Mazzarino, a researcher at Human Rights Watch, which recently released its report. "We spoke with several parents who heard that advice within the past two years in Moscow alone."

Instances Of Poor Treatment

Mazzarino says that once disabled children are consigned to state orphanages, there's little chance that they'll be given the attention needed to thrive. In many cases, she says, they face ill treatment.

"We visited 10 institutions across Russia, and in the vast majority, we either heard about, or we witnessed firsthand, severe forms of violence and neglect," she says, including children being tied up and sedated, or beaten, or doused with cold water.

She says children with severe disabilities are confined to so-called "lying down" rooms, where they spend their days in cribs, kept in diapers and fed through tubes. Photos from her report show teenagers with the physical development of preschoolers after years of confinement.

Even in the most developed countries, advocates struggle to obtain civil rights and humane treatment for disabled people, but Russia seems to be moving slower than most.

Andrei Dombrovsky, an activist for the rights of disabled people, thinks the problem dates back to the Soviet period, when the official ideology called for the creation of an ideal society.

"The country was striving toward something very perfect, in which you cannot see disabled person, because he is not perfect," says Dombrovsky, who is based in St. Petersburg. "And that's why all disabled people were living in the institutions."

He volunteers to help young adults make the transition from institutions to life on their own.

From A Children's Institution To An Adult Institution

For most disabled children who grow up in Russian orphanages, the only transition they'll make is to another institution that takes them when they're 18, such as the adult facility outside St. Petersburg.

It's a sprawling labyrinth of hallways with locked wards. Some residents, mostly very old, doze in chairs, or make their way slowly down the halls.

With her pink hair and punky clothes, 18-year-old Anya is a whirlwind of energy in this place, when she's let out of the women's ward to meet visitors. But Anya has virtually no education, and limited prospects for getting out of the institution.

Evgenia Shtil is the founder of a charity called Children of Pavlovsk, which helps young people who have aged out of one of Russia's biggest orphanages.

Russian law actually calls for the state to provide apartments for disabled people who are capable of living on their own. The catch, Shtil says, is that applicants have to prove to a panel of experts that they're ready for life in the community.

"It's really hard for a person like that to prove to the panel that they're able to cope with everyday life," Shtil says. "The only reason for that is that for the first 18 years of their lives, nothing was done to help them achieve that goal."

Russia says it's taking some steps to address these issues and help children in institutions to move into the community. The government has an "action strategy" that it says will bring Russia into compliance with the international Convention on the Rights of the Child.

Advocates like Shtil and Dombrovsky are working to help rescue the young people who are products of Russia's orphanages for disabled children. But they say, and human rights groups agree, that Russia's reforms will need to address the entire lives of disabled children, from the moment a they are born.

Wednesday, November 5, 2014

For month of November, Comcast is including 10 films from The Arc & Sprout Film Festival/Sproutflix free On Demand for all Comcast/Xfinity subscribers

From the Sprout Film Festival. Pictured is "The Girl With the Tuba," in which a young autistic woman details how playing a tuba in the streets of Atlanta has helped her define her voice as an activist.

We are very excited about a new partnership between Comcast and The Arc & Sprout Film Festival.

For the month of November Comcast is including 10 films from The Arc & Sprout Film Festival/Sproutflix free On Demand for all Comcast/Xfinity subscribers.

Two of the films: One Question and Sheri and Paul were made by Anthony Di Salvo through Sprout’s Make-A-Movie Program.

For Online – the films can be viewed at:

For Television - go to On Demand, click into the Specials folder and then click into the folder labeled Disability Awareness. At the top of that page click on the folder labeled Sprout Film Festival.

This is a wonderful opportunity to create awareness with the general public about people with intellectual and developmental disabilities.

Film is a valuable tool to entertain, educate and enlighten. Please help by watching the films.