Friday, June 20, 2014

June 22 marks 15th anniversary of Supreme Court’s Olmstead decision

From the National Disability Institute. In the picture, President Barack Obama looks at a painting presented to him by artist Lois Curtis, who was an Olmstead plaintiff, center, in the Oval Office 2011.

On June 22, one of the most historic legal decisions affecting the civil rights of people with disabilities will celebrate its 15th anniversary. On this date, in 1999, the U.S. Supreme Court rendered the landmark decision in the Olmstead v. L.C. case requiring states to eliminate the segregation of people with disabilities while at the same time, ensure people with disabilities receive services in the most integrated setting appropriate to their needs.

The groundbreaking decision not only helped plaintiffs Lois Curtis and Elaine Wilson of Georgia and countless people with disabilities leave institutions and live in the community, but also continues to be applied beyond community living to employment services and supports. In fact, the recent settlement between the U.S. Department of Justice and the state of Rhode Island cited a violation of the Americans with Disabilities Act (ADA) and Olmstead in the segregation of people with disabilities through the state’s reliance on sheltered workshops and facility-based day programs.

National Disability Institute (NDI), as the nation’s first non-profit exclusively dedicated to building a better economic future for all people living with disabilities, joins the chorus of like-minded organizations, disability advocates and allies and the entire disability community in celebrating the Olmstead decision and reaffirming the right for individuals with disabilities to live life in the community on their own terms.

Join in the conversation online, and get more news and information on Olmstead via NDI’s Facebook: RealEconImpact or on Twitter: @RealEconImpact. The LEAD Center will also feature an upcoming blog post on the Olmstead decision. Finally, the U.S Department of Health and Human Services (HHS), the U.S. Department of Justice (DOJ) and the U.S. Department of Housing and Urban Development will host an event celebrating the 15th anniversary of Olmstead on Friday, June 20 from 1:00 p.m.- 2:30 p.m. (EST). For more information and to watch the entire program online, click here for HHS’ live stream video of the event.

Father devises 'bionic pancreas' to help son with diabetes

From NPR:

An alarm sounds on Ed Damiano's night stand in the middle of the night. He jumps out of bed and rushes into his son's room next door. (The father and son are pictured.)

His son, David, has Type 1 diabetes. The 15-year-old sleeps hooked up to a monitor that sounds an alarm when his blood sugar gets too low. If it drops sharply, David could die in his sleep.

"The fear is that there's going to be this little cold limb, and I screwed up. It's all on me," Damiano says.
But when he touches David's hand, he's warm. He's OK. Damiano says, "That's the moment of relief."

The father has been doing this night after night since his son was diagnosed with when he was 11 months old.
But Damiano has done more than nightly monitoring to try to protect his son. He's an associate professor of at Boston University, and has shifted the focus of his career to developing a better way to care for people with Type 1 diabetes.

"It's intimidating when you start considering the list of things that influence blood sugar," he says. "Emotions and physical activity, if you're healthy. You can't possibly take into account and balance all those things. And sometimes you get it right. And often you get it wrong."

Damiano has developed a system he calls a "bionic pancreas" designed to help people better manage their blood sugar. He's racing to get it approved by the Food and Drug Administration before his son leaves for college in three years.

In tests with 52 teenagers and adults, the device did a better job controlling blood sugar than the subjects typically did on their own. The were reported Sunday at an American Diabetes Association meeting in San Francisco and also in the New England Journal of Medicine.

At the moment, Damiano's system is basically a sophisticated app that runs on an iPhone. The iPhone is connected wirelessly to the kind of that many people with diabetes wear taped to their abdomens.

The app analyzes the data from the monitor and sends signals wirelessly to two pumps that are similar to many diabetes patients wear to infuse themselves with insulin. In this case, one pump contains insulin and the other contains glucagon, a different hormone that raises blood sugar when it gets too low.

"The bionic pancreas is a device that automatically takes care of your blood sugars 24/7," Damiano says. "It's a device that comes to know you."

He is not the only one working on something like this. Several groups in the United States and elsewhere are testing similar systems. But Damiano's system is one of the most advanced. For example, it is one of the few that uses both insulin and glucagon.

Diabetes specialists at the National Institutes of Health and the Juvenile Diabetes Research Foundation, both of which have provided funding for Damiano's research, say his system is promising. But it remains unclear which approach will work best, they say. Damiano's could, for example, turn out to be too complicated.

"Because it's more complex, using a pump for each hormone, it may also make it more challenging for the people using it if there is a failure of the system," says , a program director at the National Institute of Diabetes and Digestive and Kidney Diseases. In the worst-case scenario, someone could die from severe hypoglycemia if the device failed.

Based on the results of the last round of testing, Damiano has gotten approval to launch a new round of testing. Dozens of adult and adolescent volunteers will use the system on their own for 11 days. The first volunteers start Monday.

"This thing is going to take the worries about my blood sugar off my hands," says Ariana Koster, 24, one of the volunteers. Koster has been struggling with diabetes since she was 11.

During a recent dry run for the new study, Koster tried the system for three days. For the first time in years, she says, she did not have to obsess over her blood sugar. She even snuck a cookie in the middle of one night, and indulged in her favorite food: pad thai.

"I can already see how awesome it is," Koster said.

There are not yet companies involved in developing the device. Damiano hopes to win the FDA's approval just in time for his son David's first night alone in his dorm room. For his part, David is confident his dad's bionic pancreas will be ready in time.

"My whole life I've just known — just had this knowledge that my dad is going to have this bionic pancreas out when I go to college," David says. "I'm confident in him. He works really hard — really hard."

Tuesday, June 17, 2014

Disability Visibility Project: A community partnership with StoryCorps in San Francisco, Atlanta, Chicago

From the Disability Visibility Project:

To mark the upcoming 25th anniversary of the Americans with Disabilities Act, StoryCorps in San Francisco is reserving a number of sessions from July 2014 – December 2014 for members of the disability community to record their stories. 

How It Works
  • Two people who know each other come to one of 3 stationary booths, located in San Francisco, Atlanta and Chicago, to record a meaningful conversation with each other, in any format and language that they choose. For the Disability Visibility Project, feel free to share your stories about the disability experience. What was life like before and after the ADA? How did it impact your life? What do you see in the future for people with disabilities? For more information on StoryCorps, visit http://storycorps.org/about/
  • After a 40-minute recording session, each participant pair goes home with a broadcast quality CD of the conversation that just took place and, with their permission, a copy of the conversation also gets archived in the American Folklife Center at the Library of Congress. For more on what to expect: http://storycorps.org/what-to-expect/
  • All reservations at the booth are free, although a donation is always appreciated.
  • Depending on community response, more sessions will be added in 2015 for the SF Bay Area disability community.

Saturday, June 7, 2014

MotionSavvy tablet app understands sign language

From TechCrunch:

There are plenty of things to take for granted in this life, and the ability to hear is one that most of the population does.

But not the team at MotionSavvy. MotionSavvy, which emerged from the Leap Motion accelerator AXLR8R, is building a tablet case that leverages the power of the Leap Motion controller in order to translate American Sign Language into English and vice versa. The entire 6-person team is deaf.

The MotionSavvy case embeds the Leap, and the MotionSavvy software leverages the Leap’s 3D motion recognition, which detects when a person is using ASL and converts it to text or voice. The software also has voice recognition through the tablet’s mic, which allows a hearing person to respond with voice to the person signing. It then converts their voice into text, which the hearing-impaired receiver can understand.

Founders Ryan Hait-Campbell, Wade Kellard, Jordan Stemper and Alex Opalka met at the Rochester Institute Of Technology, which includes a deaf-education branch, and built the prototype over a year ago.

The original MotionSavvy won third place in the ZVRS competition, which is what convinced Hait-Campbell that the product could eventually have consumer legs.

Right now the prototype only understands about 100 words, but Ryan and Alex hope to eventually crowdsource the “massive” number of signs necessary to make this an effective tool. There are many thousands of signs in ASL alone, and various different “accents” or ways it is spoken.

Over 800 deaf people have signed up for the beta test, and Hait-Campbell hopes that a consumer-facing product will eventually hit the market in September 2015.

He is playing around with a $600 price tag for the case itself, which includes a Windows tablet and a $20 per-month subscription for the software. MotionSavvy eventually wants to build apps on Android, iOS and Windows Phone, and have the hardware work with any mobile phone.

“This will allow a deaf individual to feel as if the product is an extension of her/himself,” Hait-Campbell says.
Hait-Campbell views this pricing as competitive with that of an average interpreter, at around $60-$100 an hour, but doesn’t think MotionSavvy will put interpreters out of a job. In fact, Hait-Campbell argues that MotionSavvy will create more jobs for ASL translators, as many more deaf people will apply for higher-level jobs because of the increased ability to communicate with colleagues who don’t know ASL.

This is especially poignant for international users. The Americans with Disabilities Act mandates a certain level of accessibility for U.S. workplaces and public utilities. Many countries do not have such an act, and thus deaf citizens do not get the services they need.

“This will give deaf people the power over their lives, the power to lead the lifestyle they want to have,” Hait-Campbell explains. “That is all accomplished by being able to communicate. Being deaf is very similar to moving to a foreign country but never being able to learn the language of that country (and doing that for your whole life).”

MotionSavvy is in the process of raising a $1.5 million seed round, with SOS Ventures (through the LEAP.AXLR8R) being its only current investor. Despite immense demand, it is still taking beta sign-ups here.

Friday, June 6, 2014

In Britain, six-wheel-drive ATV gives easy access to countryside for wheelchair users

From Farmers Weekly in the UK:

An electrically powered six-wheel-drive ATV that allows wheelchair users to get actively involved in the countryside has been developed by a farmer’s son from north Wales. Simon Wragg explains

There are plenty of ATVs on the market but you won’t have seen anything like this. Sion Pierce, a mechanical engineer from Nantglyn, near Denbigh, describes his HexHog as a “quad bike on the outside and wheelchair on the inside”.

Powered by lithium-ion rechargeable batteries, the vehicle has joystick control, weighs just 275kg and has a range of 8-12 miles, depending on terrain. That allows it to tackle conditions that able-bodied persons would find arduous.

Launched at the Naidex Show at the NEC, HexHog uses two 36v motors to provide independent drive to all six 20x10-10 wheels via low maintenance gearboxes and driveshafts.

The machine was conceived as part of Mr Pierce’s degree in mechanical engineering at Harper Adams. “I was inspired having read of a former student’s brother who felt left out when everyone was helping on the farm due to limitations of his wheelchair,” says Mr Pierce.

Centipede-like grip is achieved by mounting wheels each side of the chassis from a pivot (situated between the second and third wheel) from which front and rear wheels float on trailing arms.

“This patented flexible chassis allows for excellent articulation and ground contact,” explains Mr Pierce.
“HexHog easily copes with 50% slopes. The operator remains comfortably upright over terrain as the seat adjusts with the position of each axle via a series of linkages. Forward speed is governed to 8.5mph but can be altered.”

What’s it like to drive?

The demonstrator we tested was smaller than the on-line video suggested at roughly 1.8m x 1.2m (5ft 9in x 4ft). It’s fitted with an optional electric retractable seat allowing side-by-side transfer from a wheelchair and a rally-type bucket seat and four-point harness keeps the operator secure. 

Paddle switches on the armrest alter the seat ride height, allowing you to place your feet comfortably on the aluminium chequerplate floor. A car key sends power to the motors and the HexHog is “driven” with a right hand-mounted joystick.

Pushing the joystick forward releases the brakes in the 36v motors before moving off. “It’s one of the beauties of the system; if you aren’t happy at any time crossing terrain you just let go of the joystick and HexHog comes to a halt.”

Off-road

The sensitivity of the joystick control can be adapted to suit individual users. On all surfaces HexHog can easily leave able-bodied persons behind but especially where ground conditions are damp, wet, slippery or undulating under foot.

According to wheelchair user Vincent Ross (pictured), whose company will assist in the HexHog’s manufacture, it’s a major step forward. “You feel in control all the time. There’s no sudden sensation of tipping forward or pitching as it moves over the ground. Once you’re used to it you get a strange feeling of security,” he explained.

Range is up to 12 miles, with a display on the left-hand armrest showing battery life. A recharge from a normal 13A socket takes a little over two hours.


It’s made from off-the-shelf components, so most vehicle electrical engineers would be able to maintain it.
It’s also nil rated for VAT, can be driven on the highway on a car licence (it has ATV-style road lights) and can be transported on a lightweight single axle trailer without the need to take a statutory trailer test. A remote control unit for unloading is available.

Development

It’s taken well over a year of development – aided by an investment from an off-road vehicle component manufacturer Safety Devices to get HexHog to production, explained Mr Pierce. “If it gives wheelchair users a chance to be involved in the countryside then I’ve achieved my objective.”

Prices start from £18,000. “On and off road mobility scooters cost around £12,000-20,000 and many are severely limited once outside the urban environment,” explained Mr Pierce, who will manufacture the HexHog with adaptive equipment company Da Vinci Mobility of Liverpool.

Wednesday, June 4, 2014

Actress Lauren Potter takes a stand to make a difference in the world

From actress Lauren Potter in The Hufffington Post. The Take a Stand campaign: http://wecelebratedifferent.tumblr.com/


I'm Lauren Potter. I'm just a 24-year-old girl who is working hard to live my dreams and make my difference in the world.

In order to do that, I've had to face challenges. Sometimes even seemingly simple things, like walking and talking, have been a challenge. But I never let that stop me. I have always continued to dream big and to fight hard to pursue those dreams.

When I was young, my dream was to be an actress. Sure people told me I'd never be able to do it, but I replied, "Just watch me!" Now they are watching me, but this time on the big screen. I filmed my first movie when I was 16 years old, and I am currently an actress on Fox's hit TV show Glee that just celebrated its 100th episode.

As a girl who has accomplished things that many didn't think were possible, I know that people can be wrong when they judge someone else just because they are different. We are all different. And that isn't bad, it's just, well, different!

Because of Glee I have been given a chance to pursue another dream of mine -- to make the world a more welcoming place for people who are different -- especially for people like me who have always been told "you can't" instead of "you can." I want to live in a world where everyone can live, go to school and go to work without having to be afraid. Afraid of being judged, afraid of being bullied or cyber-bullied. Afraid of new things. Afraid of failure. Afraid of dreaming. In fact, I want to live in a world where people are actually celebrated for their differences, just as I celebrate mine!

Do you want to live in that world? Do you want to join me in "being the change"?

I believe we can be the generation that makes it happen! That's why I'm taking a stand for acceptance and inclusion. And I'm hoping that everyone will join me.

Special Olympics is an organization that celebrates differences and gives people of all abilities the chance to be a champion and a star. At the Special Olympics World Games Los Angeles 2015, the whole world will have a chance to show that they too stand up for acceptance and inclusion of all people by celebrating the joy, courage and determination of the 7,000 athletes who will participate. I am so proud and honored to be a part of this wonderful mission as a World Games Ambassador. I will continue to cheer on the athletes and stand with them as we tell those who still may say or think we can't do it, "Just watch me!"

Friday, May 23, 2014

Maryland to be first state to have disabled people train all law enforcement about people with intellectual disabilities, developmental disabilities

From The AP:

— Maryland will be the first state to teach all law enforcement officers about people with intellectual and developmental disabilities in training sessions led partly by disabled people, the chairman of a commission developing the program said.

Timothy Shriver, who also chairs the national Special Olympics, said lessons taught by those whom the program aims to serve will have more impact "because they don't just teach it with words, they don't just teach it with exercises, they teach it with relationships."

Panel members met Thursday in Sykesville to begin shaping the training regimen. They plan to produce a curriculum for use in police academies and in-service training for all 17,000 veteran officers starting in 2015.
The panel aims to involve people with disabilities in every lesson, either in person or through videos.

"We want the training to be conducted by people with intellectual and developmental differences," Shriver said in a telephone interview Wednesday. "To our knowledge, no state has accepted that challenge as a statewide challenge."

Shriver's mother, Eunice Kennedy Shriver, founded the Special Olympics, and his aunt Rosemary Kennedy had an intellectual disability.

The training, mandated by the 2014 General Assembly, stems from the death in custody of a man with Down syndrome. Robert Ethan Saylor (pictured), 26, of New Market, suffered a fractured larynx and suffocated as three off-duty Frederick County sheriff's deputies, moonlighting as mall security officers, tried to forcibly remove him from a movie theater in January 2013. They were summoned to remove Saylor because he hadn't purchased a ticket for a repeat viewing of "Zero Dark Thirty."

The death was ruled a homicide, but a grand jury declined to indict. Amid an outcry from Saylor's family and national Down syndrome advocates, Democratic Gov. Martin O'Malley appointed a panel to make recommendations for greater inclusion of intellectually and developmentally disabled people in all aspects of society. Mandatory police training is the panel's first goal.

The commission says California, Delaware, New Jersey, Indiana, Louisiana and New Mexico have laws requiring some or all first responders to be trained in interactions with people with intellectual and development disabilities. But Maryland would be the first to have people with disabilities as teachers in mandatory police training statewide.

The Maryland counties of Baltimore, Howard and Montgomery already offer some such training through Crisis Intervention Team programs. The programs, in place in about 2,800 police agencies nationwide, teach officers to calm excited subjects instead of automatically using force.

The CIT model was developed at the University of Memphis mainly for dealing with the mentally ill, but the same techniques work with intellectually and developmentally disabled people, said Randolph Dupont, a criminologist and clinical psychologist at the school.

Dupont said the 40-hour CIT training regimen includes a day spent with the mentally ill. He said no state to his knowledge has mandated CIT training for all law-enforcement agencies.

Read more here: http://www.kansascity.com/2014/05/22/5039028/md-panel-focuses-on-police-disability.html#storylink=cpy

Read more here: http://www.kansascity.com/2014/05/22/5039028/md-panel-focuses-on-police-disability.html#storylink=cpy

Thursday, May 22, 2014

Rep. Tammy Duckworth: ‘I’m not surprised’ by allegations against VA

From The Washington Post:

Rep. Tammy Duckworth (D-Ill.) — an Iraq war veteran, double amputee and former assistant secretary at the Department of Veterans Affairs — said Monday that allegations facing the VA mirror chronic problems she witnessed at the sprawling department where she served from 2009 to 2011.

Duckworth, a former Army helicopter pilot, lost both of her legs when an insurgent shot her helicopter out of the skies over Baghdad in 2004. She later ran the Illinois Veterans’ Department, joined the VA as an assistant secretary in May 2009 and left in 2011 to launch a congressional campaign.

In a wide-ranging 40 minute interview Monday, Duckworth recalled the frustrating experience of navigating "silos" that existed between the VA’s two main components: The Veterans Health Administration, which runs the clinics and hospitals and the Veterans Benefits Administration, which deals with claims and doles out payments. (A third component, the National Cemetery Administration, oversees hundreds of military cemeteries nationwide.)

"I’m not surprised because it’s such a large network that you’re going to find problems," Duckworth said.
"There is I think a lack of a sense of accountability almost to central office," or to top officials in Washington, including Veterans Affairs Secretary Eric K. Shinseki, she said.

Duckworth recalled how in several instances, officials in Washington learned of improperly sterilized equipment or delayed treatment for veterans at hospitals across the country only after reading local news reports. Officials in those hospitals "never told central office," she said. "That was frustrating to me, because they were trying to deal with it locally and it would be three, four or five months later. As soon as central office and Secretary Shinseki found out about it, we’d act on it immediately."

Despite her concerns, Duckworth expressed support for Shinseki, who has faced calls for his resignation in recent days because of the allegations.

"I think he should fix it. I’m not putting trying to put words in his mouth here, but I would think that he would want to fix it," she said.

When asked whether the allegations could affect President Obama's legacy of helping the nation's military veterans, Duckworth took a long pause before answering.

"It’s hard, because Mrs. Obama has done so much and Mrs. Biden has done so much and I see that as part of the president’s push," she said, referring to first lady Michelle Obama and Vice President Biden's wife, Jill. "I think [Obama's] relied on Secretary Shinseki, but we could use his personal attention at this point."

"I think he’s done a lot," she added later. "I don’t know what more he could have done. He appointed Eric Shinseki, it’s been one of the top things on the first lady and Dr. Biden’s agenda. That has been going gangbusters. I don’t know any other president who’s done more than that. But now that we have this crisis, we need more."

While recovering from her Iraq war wounds at Walter Reed Medical Center in 2005, Duckworth met then-Sen. Obama, who visited her several times. She became an outspoken critic of the Bush administration's Iraq policy and eventually was recruited by then-Democratic Congressional Committee Chairman Rahm Emanuel to run for a House seat in suburban Chicago. She lost that 2006 race, but this year faces a less serious GOP challenge in her first reelection campaign. In recent months Duckworth has been talked about as a potential candidate to challenge Sen. Mark Kirk (R-Ill.) in 2016.

Triple amputee becomes TV host in Nepal

From ABC in Australia:

Kamala Shrestha (pictured) greets audiences with a confident smile every Friday and Sunday on Himalaya Television, a private Kathmandu-based station. 

The 29-year-old has only been in the presenter's chair six months but is already proving to be a natural talent.

What sets Kamala apart from other television news anchors is that she is a triple amputee.

Himalaya Television has welcomed her to the airwaves, she says.

"My disability was not an issue."

At age 10, Kamala lost both her arms and a leg after suffering an electric shock while retrieving a kite that was entangled in power lines.

"I survived an 11,000 watt electric shock. I am fortunate."

Before appearing on screens, Kamala hosted a radio program that focused on people with disabilities.

"I love expressing myself so radio presenting came very naturally to me," she said.

"I don't remember being nervous when I first went on air, either on radio or television. There was nothing to be nervous about."

When Kamala was 17, Rotary Australia flew her to Australia for treatment. It was her first trip abroad and, she says, a life changing experience.


She also loves music and singing, and even has an album to her name.

The album was released two-and-a-half years ago and she is currently working on a second.

"I sang about cultivating a positive attitude in my first album but in my second album I will be singing about love."

Kamala says she is grateful for her family's support.

"My mother and father have been great pillars of support. I cannot favour one over the other".

The Nepalese government says there are more than 500,000 people in the country who live with a disability.

Most cannot afford prosthetic or artificial limbs and government support is minimal.

Like many people, Kamala relies on the support of non-government groups.

Tuesday, May 20, 2014

Computer program advises autistic adults heading into job interviews

From the Wall Street Journal:

Knowing what an employer wants to hear can make all the difference during a job interview.

For adults with an autism-spectrum disorder, those answers can be harder to come by. And without work, they face the prospect of a much less independent life.

But early evidence suggests some job-training programs geared for these individuals appear to improve interview skills and self-confidence.

Much of the focus on autism, a developmental disorder characterized by social deficits and repetitive behavior, has centered on the diagnosis and treatment of young children. But for parents and experts, the question of what happens when these patients grow older and age out of social services looms large. More than half of adults with autism in the U.S. are unemployed, according to studies.

Parts of the job-seeking process can be missed or misinterpreted by people with autism. They may not engage in small talk to ingratiate themselves to colleagues or employers. Networking can make them anxious. Many need to hear that they should write a cover letter even if a job description only asks for a résumé, says Lydia Brown, a former project assistant at the Autistic Self-Advocacy Network and an Arabic and Islamic Studies student at Georgetown University.

Scientists from Northwestern, Vanderbilt and Yale universities are studying whether interview skills can be improved through a computer-based program that uses a virtual-reality interviewer dubbed Molly.
On screen, Molly is a young but professional-looking brunette whose voice comes from an actress who recorded 2,000 questions and answers related to job interviews.

Technologically, she is based on sophisticated person-simulation software originally designed to train FBI agents to interrogate witnesses, says Dale Olsen, who developed the initial technology in 1995 when he was a scientist at Johns Hopkins University's Applied Physics Laboratory. He is now the chief executive of a Columbia, Md.-based company called Simmersion, which sells training systems using the technology.

The trainees start by filling out an application processed by the program to determine the most appropriate questions for applicants. For instance, if people have gaps in their work history, Molly may ask applicants to explain them.

In addition, Molly can be programmed to three levels, from nice to brusque. Trainees learn to navigate these situations by choosing from a set of responses to each question. After each selection, they hear feedback about how well they answered.

The feedback is intended to help trainees build rapport with an interviewer. For instance, when asked if they have experience, some trainees initially may respond "no," without realizing that such a response may hurt them. Gradually, they may learn a more effective response, like, "No, but I'm a fast learner."

In the study, 26 adults ages 18 to 31 were assigned either to work with Molly on up to 20 trials over a 10-hour period, or to their usual treatment. They all were also interviewed by researchers at the beginning and end of the study.

The data showed that those who worked with Molly reported better self-confidence and better performance scores in the mock interviews over time. A preliminary data analysis, still unpublished, suggests that those who received training with Molly were more likely to get competitive positions than those who didn't, says Matthew Smith, research assistant professor of psychiatry and behavioral sciences at Northwestern. He is also first author on the study, which was published in the Journal of Autism and Developmental Disorders.

Kat Wyand, 25, was diagnosed with Asperger syndrome, a mild form of autism, when she was 16, and told by teachers and therapists that her deficits with social skills would prevent her from getting a job. Ms. Wyand was devastated. She went on to get a bachelor's degree in audio arts and acoustics at Columbia College in Chicago, but had trouble finding work. She says she sent out a number of applications but received few interviews and doesn't know why.

When she heard about the study at Northwestern, she immediately got in touch. She says she learned what to say to start an interview, and to condense her answers, since she had a tendency to ramble. However, with the computer program, she says she wasn't able to get feedback on her body position or tone of voice, which is something she has trouble with.

Since then, she has found a part-time job as a bookkeeper at an art gallery where she had been volunteering. Now she is considering teaching guitar, something she previously wouldn't have considered.

"I've lifted myself from the depression, but it's taken years," Ms. Wyand says. "Now I'm feeling hopeful that I actually have talents that I can use and get employed."

Other programs with research evidence behind them include JobTIPS, a Web-based service that includes videos, printable guides and assessments. In a randomized study, 22 teens between 16 and 19 years old completed the training, while another group didn't. Those who went through JobTIPS exhibited more effective interview skills after the training, according to the paper published in the Journal of Autism and Developmental Disorders in 2013.

Other programs take a more traditional, internship-based approach to job training. At Virginia Commonwealth University, Paul Wehman has been running a trial since 2009. It assigns six to eight high-school students with autism each year to a nine-month internship program at area hospitals, with others getting treatment as usual in school.

Trying to take advantage of some of the skills of people with autism, such as attention to detail, internships have included ambulatory surgery rotations where students sterilize surgical equipment. Students have also worked in the pharmacy, where they fill bottles of medication.

Two years after the internships, of the 20 who were employed after graduation, 17 are still at the job, two were terminated and one moved away, Dr. Wehman says.

Marsha Mailick, director of the University of Wisconsin-Madison's Waisman Center, which helps teens with autism move into adulthood, says that she supports any program that increases the likelihood of employment. But interview training hasn't been demonstrated as the most effective strategy, she says.

She suggests that parents network and think creatively to help their children obtain, as soon as possible, jobs that give gratification and occupy many hours a week. A job is "therapeutic," she says.

Monday, May 19, 2014

New York ruling demands better access to voting booths

From Public News Service:

NEW YORK - The Second Circuit Court of Appeals just affirmed a decision that advocates for people with disabilities say sends a message for the fall elections: New York City needs to provide improved access to voters who have trouble navigating some polling places.

Stuart Seaborn, senior staff attorney, Disability Rights Advocates, says this latest ruling sends a clear message to the City Board of Elections that it has not been providing equal access to the polls and changes need to be made.

"We're talking about 70 percent to 80 percent of the city's poll sites that are inaccessible to people who use wheelchairs, or to people with vision impairments. The court is going to require the city to fix those barriers," Seaborn says.

This latest decision, by a federal appeals court, upheld a 2012 ruling that found the city failed to provide people with disabilities meaningful access to more than 1,300 polling sites.

Margi Trapani, director of communications and education, Center for Independence of the Disabled-New York (CIDNY), says this ruling goes to key issues, including a person's rights to privacy during the process of voting.

"It's a victory for people who couldn't get to the voting area because of debris in their pathways or dangerous ramps," Trapani says. "And it's a victory for people who wanted to vote privately and independently, like everyone else, and couldn't do that."

Trapani says CIDNY spent more than a decade documenting, and trying to resolve, all the hurdles faced by people with disabilities each year who simply wanted to cast their vote.

"It has taken a lawsuit and an appeal, but we're finally there - to the point where we can concentrate fully on remedying the barriers that we found, and putting New York City in compliance with civil rights law," she adds.

Trapani summed it up as a "good day" for people with disabilities and civil rights.

 
NEW YORK - The Second Circuit Court of Appeals just affirmed a decision that advocates for people with disabilities say sends a message for the fall elections: New York City needs to provide improved access to voters who have trouble navigating some polling places.

Stuart Seaborn, senior staff attorney, Disability Rights Advocates, says this latest ruling sends a clear message to the City Board of Elections that it has not been providing equal access to the polls and changes need to be made.

"We're talking about 70 percent to 80 percent of the city's poll sites that are inaccessible to people who use wheelchairs, or to people with vision impairments. The court is going to require the city to fix those barriers," Seaborn says.

This latest decision, by a federal appeals court, upheld a 2012 ruling that found the city failed to provide people with disabilities meaningful access to more than 1,300 polling sites.

Margi Trapani, director of communications and education, Center for Independence of the Disabled-New York (CIDNY), says this ruling goes to key issues, including a person's rights to privacy during the process of voting.

"It's a victory for people who couldn't get to the voting area because of debris in their pathways or dangerous ramps," Trapani says. "And it's a victory for people who wanted to vote privately and independently, like everyone else, and couldn't do that."

Trapani says CIDNY spent more than a decade documenting, and trying to resolve, all the hurdles faced by people with disabilities each year who simply wanted to cast their vote.

"It has taken a lawsuit and an appeal, but we're finally there - to the point where we can concentrate fully on remedying the barriers that we found, and putting New York City in compliance with civil rights law," she adds.

Trapani summed it up as a "good day" for people with disabilities and civil rights.
- See more at: http://www.publicnewsservice.org/2014-05-19/disabilities/ruling-demands-better-access-to-voting-booths/a39445-1#sthash.NUHLXmQC.dpuf
NEW YORK - The Second Circuit Court of Appeals just affirmed a decision that advocates for people with disabilities say sends a message for the fall elections: New York City needs to provide improved access to voters who have trouble navigating some polling places.

Stuart Seaborn, senior staff attorney, Disability Rights Advocates, says this latest ruling sends a clear message to the City Board of Elections that it has not been providing equal access to the polls and changes need to be made.

"We're talking about 70 percent to 80 percent of the city's poll sites that are inaccessible to people who use wheelchairs, or to people with vision impairments. The court is going to require the city to fix those barriers," Seaborn says.

This latest decision, by a federal appeals court, upheld a 2012 ruling that found the city failed to provide people with disabilities meaningful access to more than 1,300 polling sites.

Margi Trapani, director of communications and education, Center for Independence of the Disabled-New York (CIDNY), says this ruling goes to key issues, including a person's rights to privacy during the process of voting.

"It's a victory for people who couldn't get to the voting area because of debris in their pathways or dangerous ramps," Trapani says. "And it's a victory for people who wanted to vote privately and independently, like everyone else, and couldn't do that."

Trapani says CIDNY spent more than a decade documenting, and trying to resolve, all the hurdles faced by people with disabilities each year who simply wanted to cast their vote.

"It has taken a lawsuit and an appeal, but we're finally there - to the point where we can concentrate fully on remedying the barriers that we found, and putting New York City in compliance with civil rights law," she adds.

Trapani summed it up as a "good day" for people with disabilities and civil rights.
- See more at: http://www.publicnewsservice.org/2014-05-19/disabilities/ruling-demands-better-access-to-voting-booths/a39445-1#sthash.NUHLXmQC.dpuf

In South Africa, Oscar Pistorius TV channel a massive viewership success for DStv

From Channel 24 in South Africa:

CAPE TOWN, South Africa – MultiChoice's Oscar Pistorius Trial TV channel (DStv 199) is a massive viewership success story for DStv – lifting ratings on the South African satellite pay-TV platform to unprecedented levels and making the channel the 4th most watched TV channel on pay-TV in South Africa since the channel launched on 2 March.

The phenomenal viewership feat makes the Oscar Pistorius Trial TV channel, which has already earned millions, the most successful pay-TV channel launched in South African television history.

That's due to the short amount of time in which the Oscar Pistorius Trial TV channel has been able to amass thousands of riveted viewers, get them to watch television for longer –  and during timeslots usually suffering from anemic ratings.

The channel has successfully also managed to grow a brand-new social media community and following around a specific topic of interest – people who then also watch the channel and interact with the various TV presenters.

The sensational court trial in the North Gauteng High Court of the paralympic athlete who shot and killed his girlfriend Reeva Steenkamp on Valentines Day last year, managed to push news coverage of Nkandlagate and South Africa's general election during March and April off of the front pages of newspapers and lifted viewership of the Oscar Pistorius Trial TV channel to unprecedented numbers.

The court trial since 2 March received major coverage from global media with print and electronic media who have dedicated journalists covering the proceedings.

It's now likely that the upcoming murder trial of Shrien Dewani, now in South Africa, will likewise be televised in a similar fashion, fueling South African TV viewers' obsession for dramatic, televised court room drama.

A staggering 90% of viewers of the Oscar Pistorius Trial TV channel said they would want to watch the Shrien Dewani murder trial of his wife Anni.

Channel instantly in top 5 most watched list

During mid-March the Oscar Pistorius Trial TV channel, produced by Combined Artistic Productions for MultiChoice's DStv platform, lured more viewers than any other pay-TV channel, taking fourth place on the most-watched channels list, only behind the free-to-air channels SABC1, SABC2 and e.tv which remain the perennial front-runners.

The Oscar Pistorius Trial TV channel proved more popular than premium pay-TV channels like M-Net, Mzansi Magic and kykNET which are supplied to MultiChoice by M-Net, and instantly shot up to the coveted top 5 list of most watched TV channels on DStv.

In a phenomenal performance and ratings boost for DStv, the Oscar Pistorius Trial TV channel managed to pull at certain periods, the same viewership and even slightly surpass it, of a show like for instance Carte Blanche on M-Net – the premium pay-TV broadcaster's number one rated show and which is broadcast during prime time when a bigger possible audience is available.

Even more astounding is that the channel managed this during morning and afternoon timeslots when overall daytime TV viewership in South Africa is usually extremely low.

Lifting the overall available TV audience in SA

It means that the Oscar Pistorius Trial TV channel not only brought thousands of viewers more to DStv and during times like mornings and afternoons when they wouldn't have been watching before, but also helped to lift the overall available TV audience in South Africa available to advertisers during those timeslots.

The Oscar Pistorius Trial TV channel has also been a spontaneous upsell driver to prompt DStv subscribers to upgrade to higher and more expensive DStv bouquets in order to follow thetelevised court trial.

DStv subscribers like Cherise de Wet – a practising attorney from George, who decided to upgrade their TV household to a higher DStv bouquet for just a month in April in order to follow to murder trial – has remained on a more expensive package solely to get the TV channel and follow the proceedings.

Oscar Pistorius channel exceeded best expectations

"The Oscar Pistorius Trial: A Carte Blanche Channel has exceeded our best expectations having gained a large and dedicated audience in South Africa and around the world," Aletta Alberts, MultiChoice's head of content tells Channel24.

"The channel features consistently as one of the top 5 most viewed TV channels on the DStv platform since its inception in March 2014, unusual for a pop-up channel".

"We are very excited about the groundbreaking broadcast and social media integration and positive educational feedback we've received," says Alberts.

"The Oscar Pistorius Trial TV channel has been performing incredibly well. It has attracted massive audiences," Chris Botha, the group managing director for leading media agency The MediaShop tells Channel24.

"Most importantly for DStv, it has grown their audience share in non-traditional time channels. DStv's daytime audiences are generally quite small, but the Oscar Trial TV channel has changed it all around. Some of the daytime programmes have performed better than some primetime programmes".

"That is one of the reasons DStv introduced the channel – not to make millions of ad revenue, but to grow daytime audiences that will hopefully stay on the bouquet".

"The channel has done well because the trial is so much bigger than any one media type," says Botha.

"The trial has received massive exposure not only on television, but also on social media like Facebook and Twitter. The interest in the trial then drives TV viewership".

"A lot of clients are still sceptical about advertising on the channel. They don't want to be associated with it, as it polarising to some audiences, and also as it is seen as distateful".

"I don't believe it is a missed opportunity for advertisers," says Botha. "I rather believe it is a grasped opportunity for MultiChoice".

Friday, May 16, 2014

"Mad Men" takes on mental illness, PTSD among Holocaust survivors

From CBS News:

Sunday night's episode of "Mad Men" was filled with plenty of surprises both inside and outside the office of Sterling Cooper & Partners. But for many viewers, none quite compared to the shock Peggy Olson received when she opened a gift box from her increasingly erratic colleague, Michael Ginsberg. Inside she found his severed bloody nipple, which the disheveled and talented copywriter had cut off and presented to his boss as a sort of peace offering.

At that moment it becomes astutely clear that Ginsberg has a devastating mental illness. In retrospect, the clues to his unraveling had been accumulating for some time.

Ginsberg's delusions center around the new computer in the office, a loudly humming room-size machine which has displaced him and his creative team and sent them to a tiny claustrophobic work office. He tells Olson the computer's noise is too distracting for him to work and that the "machine makes men do unnatural things" by turning them all into homosexuals. He tells Olson his nipple is the computer's valve and he's removed it to relieve the pressure.

Ginsberg's psychosis reflects a phenomenon detailed last year in an article that appeared in "The New Yorker."
"Shifts in technology have caused the content of delusions to change over the years: in the nineteen-forties, the Japanese controlled American minds with radio waves; in the fifties, the Soviets accomplished this with satellites; in the seventies, the CIA implanted computer chips into people's brains," explained Andrew Marantz in his story.

In Marantz's reporting he found that today's common delusions frequently recreate the concept of the "Truman Show," in which the person believes they are a star of their own reality television show and cannot escape the scrutiny of cameras and an international around-the-clock broadcast of their life.

In Ginsberg's mind, the fear that computers will change, replace and control humans -- worrisome to many at the time -- is the centerpiece of his psychosis.

Actor Ben Feldman (pictured), who plays Ginsberg, says he was stunned when he first learned of the plot line. "(Mad Men's creator) Matt Weiner and I sat down a few weeks before that episode and he told me everything that was gonna happen and my jaw just dropped to the floor," the actor laughed.

A few seasons ago, when a more stable-seeming Ginsberg first entered the fray, he confessed to Olson that he was a child of the Holocaust, born in a concentration camp during World War II. Now in hindsight, this may also explain much about his current state of health. "That machine came for us," he tells Olson.
Many refugees of the war were plagued by debilitating post-traumatic stress disorder and other forms of mental illness, compounded by the lack of social services provided to survivors who often experienced high levels of paranoia, anxiety and fear of future persecution.

At the end of this week's episode, Ginsberg is wheeled out of the office on a gurney. It's unclear what will become of him. However, it's worth noting the historical context, since the realities for the characters closely reflect the social and political climate in which they live. Ginsberg may be in for an uphill battle, and his copy writing days very well could be over. 
It's currently the year 1969 on "Mad Men." The late 1960s marked a turning point for the rights of mentally-ill people, an extension of the volatile Civil Rights Movement. In 1967, lawmakers in the state of California passed the Lanterman-Petris-Short Act, essentially the first stab at a bill of rights for the mentally ill, which attempted to enforce some protection within the legal system and communities in the state, both for the patient and society as a whole. The legislation, signed by then-governor and future president Ronald Reagan, would later inform mental health policy in other states and on a federal level. But not for a while.
Serious mental illness was still frequently dealt with by institutionalization, although by the mid-1960s the number of people in psychiatric hospitals had started to decline from a peak in the 1950s.

This is not the first time "Mad Men" has addressed the taboo topic of mental illness. In earlier seasons, Don Draper's ex-wife Betty sought help for her clinical depression and weight gain through psychotherapy and pills -- a reference to the plight of suburban moms in 60s and 70s. It was not uncommon for "happy homemakers" of those eras to try to quell their depression with a few pills, or as the Rolling Stones song called them, "Mother's Little Helper."

'Spectrum,' a new documentary about autism, sensory perception

From the filmmakers at  http://www.spectrumthefilm.com/:

“Spectrum” is a documentary about autism and sensory perception. The goal of the documentary is to combine fascinating interviews with stylized, mixed media footage to simulate visual and auditory experiences described by autistic people. 

One of the most well-known and respected individuals in the autism community, Temple Grandin provides a glimpse into her perceptual world and the science behind autistic perception. She believes that sensory issues are the most important subject to research about autism. 

“Spectrum” also features Tito Mukhopadhyay, an esteemed non-verbal autistic author and poet. Tito has been featured on the BBC and “60 Minutes” for his ability to communicate his incredible intelligence by typing on a computer. Tito shares his experiences living in a world of extreme altered perception. 

What is sensory perception?

Sensory perception refers to the way the human brain processes sensory information. We all have a sensory system for vision, hearing, taste, and smells. How our brain interprets this information creates the reality we engage with in every moment. 

Every person has a unique sensory system. Some people are merely sensitive to certain sights and sounds, like the sound of screeching nails on a chalkboard or images from a 3D movie. 

Autistic people can experience more extreme differences in sensory perception, like extreme over-stimulation or under-stimulation. For some, the sound of a fire alarm can be deafening and scary. Others, like Tito Mukhopadhyay, can experience synesthesia, or cross-sensory perception.

The goal of "Spectrum" is to understand and imagine how others can perceive the world. People with different types of brains experience a different perspective that we need to understand, appreciate, and accommodate.


Wednesday, May 7, 2014

How misunderstanding disability leads to police violence

From The Atlantic:

On April 29, the Senate Judiciary Committee met to discuss law-enforcement responses to disabled Americans. The committee, chaired by democratic Senator Dick Durbin from Illinois, met against the backdrop of the death of James Boyd, a homeless man who had been in and out of psychiatric hospitals, shot to death by police in Albuquerque, and Ethan Saylor (pictured), a man with Down syndrome who suffocated to death while handcuffed by off-duty deputies working as security guards in a Maryland movie theater. They are just two of many people with psychiatric or intellectual disabilities killed by law enforcement.

In the face of these deaths and many others, the senators and witnesses all argued that something must be done. Suggested solutions included increased funding and support for Crisis Intervention Teams (CIT) training and the Justice and Mental Health Collaboration Act, which would improve access to mental health services for people who come into contact with the criminal justice system and provide law enforcement officers tools to identify and respond to mental-health issues.

While the hearing focused on troubling, high profile, and tragic cases such as those of Boyd and Saylor, the scope of the problem extends to virtually every kind of disability. Encounters with police have also taken an unnecessarily violent turn for people with disabilities that are not psychiatric or intellectual, including conditions that are physical or sensory:
  • In 2008, Ernest Griglen was removed from his car by police who thought he was intoxicated. He was subsequently beaten. Griglen was, in fact, quite sober, but he is diabetic and was in insulin shock. Judging by media reports alone, people who are diabetic are often mistaken as threatening or drunk.
  • In 2009, Antonio Love felt sick and went into a Dollar General store to use the bathroom. Time passed and he didn’t come out, so the store manager called the police. The officers knocked on the bathroom door, ordered him to come out, but got no response. They sprayed pepper spray under the door, opened it with a tire iron, then tasered Love repeatedly. Love is deaf.  He couldn’t hear the police. Again, if news reports are any indication, deaf people are too frequently treated as non-compliant and tasered or beaten by police.
  • In 2010, Garry Palmer was driving home from visiting his wife’s grave when a dog darted in front of his truck and was hit. Palmer reported the accident as he should have, but because he was slurring his words and shaking, he was arrested for drunk driving. Palmer has cerebral palsy.
  • In January 2014, Robert Marzullo filed a lawsuit citing battery, excessive force, false imprisonment, unlawful seizure and supervisory liability against the town of Hamden, Connecticut and its police department. News reports reveal that Marzullo was tasered by two police officers while having an epileptic seizure in his car.
While specific details vary by case, the common threads that link these stories together are often disconcerting. Law enforcement officials expect and demand compliance, but when they don’t recognize a person’s disability in the course of an interaction, the consequences can be tragic. Misconceptions or assumptions can lead to overreactions that culminate in unnecessary arrest, use of pepper spray, or individuals being tasered.

Sadly, while incidences of this sort aren’t necessarily new, for many of us, learning about them is. The Internet, social media, and ubiquitous cell phones have helped catapult stories that were once easily restricted to local police blotters to unprecedented national prominence.

As National Council on Disability (NCD) Executive Director Rebecca Cokley wrote in her testimony to the Senate Judiciary subcommittee, “misunderstandings, fears, and stereotypes about disability have led to tragic outcomes throughout U.S. history. During the American Eugenics movement, pseudo-scientific ‘evidence’ gave way to popular myths linking disability and criminality, and the inheritability of both.” As a result, people with disabilities were devalued, isolated from the rest of society, prevented from attending school, getting married or becoming active and engaged in their communities.
Fortunately people with disabilities now enjoy far greater civil rights that have come hard fought in the least 50 years. However, harmful attitudes and assumptions, once established, can be difficult to replace even in the face of evidence to the contrary.

In the latest data released by the U.S. Department of Justice’s Bureau of Justice Statistics, Americans with disabilities are victims of violent crimes at nearly three times the rate of their peers without disabilities. In 2012 alone, 1.3 million nonfatal violent crimes were perpetrated against people with disabilities aged 12 or older. Statistics bear out that people with disabilities are far more likely to be the victims of crimes than the perpetrators of them, and therefore are arguably in greater need of supportive relationships with and understanding from law enforcement.

Disability is varied and complex. Sometimes disability is visibly apparent, making it easier for law enforcement, to see—if not misinterpret. For others, disability is invisible. Whether it is written in the genetic code and is a companion since birth, or becomes a part of one’s experience later because of age, accident, or public service during the course of our natural lifespan many of us will move in and out of states of disability, whether it is due to breaking a limb, becoming diabetic, or conditions related to aging.

The disabled community relies on law enforcement as the first line of defense and protection in countless situations of varying complexity. Strengthening this important relationship could be a step toward preventing the sort of misunderstandings that can result in tragedy.

As Patti Saylor, Ethan’s mother, testified at Tuesday’s hearing:
“When you know someone with a disability and have a relationship with that person, it changes your whole being and perspective. At the local level, we have a real opportunity to build relationships with our local law enforcement and public sector officials, the ones that are on the frontlines serving our communities... Local disability advocacy organizations and providers should build lasting relationships with their local law enforcement and public sector officials. It doesn’t take an act of Congress, federal or state mandate, or even money to make you realize that relationships are everything.”
The recent hearing by the Senate Judiciary Committee is an important first sentence in an ongoing dialogue about how law enforcement officials relate to people with psychiatric, developmental, and physical disabilities. Non-compliance isn’t automatically criminal, and if more police understood that, it could minimize the violence.

At the end of the hearing, Senator Al Franken remarked, “I think we need CIT training for every law enforcement official." CIT training is one component, along with increased community support, public engagement, and funding. These are all steps we can take to try to decrease the likelihood of more mistreatment of those like Saylor and Boyd.

But as long as disability is misunderstood and criminalized, even unintentionally, nearly everyone will be at increased risk.