Disability News Service, Resources, Diversity, Americans with Disabilities Act; Local and National.

Saturday, August 30, 2014

ALS patient and advocate Eric Valor with paralysis, finding freedom via brain-wave tech

wanted to share interesting article by Ben Fox Rubin, for CNET | Aug 30, 2014

ALS patient and advocate Eric Valor is part of an experimental project to test out a brain-wave-reading headset, technology that could one day give paralyzed people more independence.

Eric Valor, 45, at his home in Aptos, Calif. He uses an eye-tracking camera to help him communicate and a sensor taped to his cheek to alert an attendant.

All of a sudden, Eric Valor struggled to surf.
His left foot started dragging while he tried to pop up on his board, causing more wipeouts than normal for the avid wave rider. What started as a visit to the foot doctor resulted in an eventual diagnosis of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's Disease, an incurable neurodegenerative condition with few known causes that bit by bit takes away a person's ability to control muscle movements and leads to death.
"The gravity of that day," he said of when he was diagnosed, "of the terrifying fear, volcanic anger, the inconsolable sorrow for the loss of the perfect life my wife and I had built -- still remains as a stark and adrenaline-inducing memory."
Valor -- a 45-year-old former information technology professional living outside Santa Cruz, Calif., who is now paralyzed -- built a new life as an advocate for the ALS community. That calling led him to take part in an experimental project this year developed by consultancy Accenture and tech firms Royal Philips and Emotiv. Using Valor as their first trial case, the companies successfully used Emotiv's wireless brain-wave-reading headset to allow him to request medical help and control the lights or television simply by thinking commands.
This kind of technology could in the future help people paralyzed by diseases or injury to communicate with others, control different facets of their homes without someone else's help and gain mobility by operating a wheelchair.
"We're just excited about the potential of what this product can provide," said Tan Le, CEO of Emotiv. "We're just scratching the surface."
ALS is relatively rare, with roughly 400,000 people worldwide affected, which means the battle for a cure or treatment is sometimes overlooked in favor of more well-known afflictions. But over the last month, awareness of the disease has gone mainstream thanks to a viral campaign called the Ice Bucket Challenge -- you might already have been called out by someone on your social network to dump ice water over your head.
The Emotiv project, which isn't connected to ALS charities, is one of several efforts in researching brain-computer interfaces, which capture electric signals in the brain and translate them into specific commands. These technologies could be used to solve the complex problem of giving paralyzed patients a means of communication and independence even when they can't type or speak or provide any other physical inputs into a computer.
The technology would be especially useful in later stages of ALS, when some patients lose all ability to move, unable even to blink or move their eyes. Such patients are locked into their bodies despite maintaining alert minds. The effort also offers a window into the potential of wearable consumer technology and so-called smart-home devices for a higher calling than their current uses such as fitness tracking and email alerts.
Still, the teams at Emotiv, Philips and Accenture cautioned that their work remains in the early days of development. "It's far, far too early to even know whether this has a potential to be a product," said Anthony Jones, a marketing executive in Philips health-care business. "We're at step one of a very lengthy, multistep process, but a significant step."

Valor and ALS

In 2005, Valor was 36 years old and working as an IT professional for car maker Daimler's North America research and development operations. He had a house by the beach, near his current home in Aptos, Calif., where he could surf regularly, and he was happily married. At the time, he said, he was ready for the next step of his life, looking forward to becoming a dad. "All that was taken away," Valor said.
His first symptoms were visible muscle twitches. Then, he found he had trouble surfing, a regular hobby along with snowboarding and scuba diving. An evaluation by a foot doctor led to a trip to an orthopedic surgeon, followed by a referral to a neurologist, then to UCSF Medical Center hospital. Valor hoped for cancer or another illness that might be cured. His ALS diagnosis came soon after. By 2008, he couldn't control a computer mouse and he retired as a network operations manager overseeing several US offices for Daimler.
Valor at his home, where he keeps a T-shirt of Team Gleason, an advocacy group created by former NFL player and ALS patient Steve Gleason that uses the motto "No White Flags."James Martin/CNET
Valor transitioned to using an infrared camera that can track his eye movements across his computer monitor to allow him to write. He wears a sensor taped to his cheek that, when he twitches, can activate a buzzer to call an attendant. His meals are served to him via a feeding tube. He is hoisted onto a rolling transport chair for showers. A machine helps him breathe. Despite his condition, he discusses how he refuses to "go away," now writing a blog chronicling his life with ALS, participating in drug trials, and advocating for the ALS community.
Writing to CNET using eye-tracking technology on his computer, he said he keeps busy socializing online, helping other ALS patients with their computers, and managing different projects involving the ALS community. "I am fulfilled in this new career," he said.
The monitor and infrared camera setup at Valor's home.James Martin/CNET

Using Insight

Valor's ALS outreach led him to the Emotiv project, and his background in IT made him an obvious fit for the test.
Emotiv, founded in 2011, is among a handful of companies, including InteraXon and NeuroSky, working to take electroencephalography, or EEG, technology -- which has been used by doctors and scientists for decades to study brain activity -- and bring it into the consumer world. These commercial devices, which use EEG sensors to decipher the brain's electrical activity along the scalp, offer users a way to track brain health and provide a new form of gaming.
Emotiv currently sells a wearable headset called the EPOC, which starts at $399, that's used for research, and it plans on coming out with a second headset called Insight for consumers in early 2015, starting at $299. Both devices are simply worn on a user's head and don't require any implants or surgery, so they can be removed about as easily as a hat.
CNET's Kara Tsuboi is fitted with a version of Emotiv's Insight during a demonstration at Accenture's San Jose, Calif., office.James Martin/CNET
The battery-powered Insight, which Valor used in the experiments, is intended to be a wearable device for everyday use by anyone to assess brain health and well-being. The device can interpret brain signals, allowing a user to perform a handful of commands on devices compatible with the headset, including flying a toy helicopter, using only their mind.
Valor could use the Insight headset to send commands by thinking certain words, such as "down" or "right." Those commands were then transmitted over to a tablet computer and processed through Accenture and Philips software to control a handful of Philips products, including the Lifeline medical alert system, a television, and lighting. The commands also appear on an eyeglasses display device, providing feedback to Valor.
Valor said there were obvious advantages to the Emotiv headset. He noted that the headset seems to work in sunlight, when the infrared eye-tracker could be more challenging. In more serious cases, two of his friends lost the ability to move their eyes, and thus their last mode of communication.

Brain-wave headsets

Valor and others affected by ALS have a spectrum of technologies available so they can function as much as possible like they did before the disease hit. Once a patient loses more motor abilities, they can transition to another type of technology, such as switching from tapping on a tablet to visual inputs with an eye-tracking sensor. However, once full paralysis takes place, there often is no way to reach out anymore. Jacquellyne Hengst, director of development at the Philadelphia-based ALS Hope Foundation, said that for those patients served by her organization, she will sometimes simply sit with them, hold their hand and look into their eyes.
For those cases, brain-computer interfaces, or BCIs, hold promise, though the technology remains mostly in the research phase. Such technologies could allow people with extreme physical disability -- including those with ALS, brain-stem strokes or cerebral palsy -- to type out an email, operate a robotic arm or wheelchair, or move a cursor by using their thoughts.
Sara Feldman, a physical therapist and assisted-technology professional at the MDA/ALS Center of Hope clinic, which is funded by the Philadelphia foundation, said many patients most fear losing the ability to interact with others. Any technology, she said, that could provide a channel of communication for patients who can't move would be life-changing.
"It is so important, because communication is so important to people," said Feldman, who wasn't involved in the Emotiv project. While her organization takes part in projects involving brain-computer interfaces, she noted, "That's taking a lot of time and research."
So far, the next step for Philips, Accenture and Emotiv is unclear. The team said they were able to prove their idea works and wanted to talk about it publicly to draw in more ideas and attention to see if that concept can one day reach the market. But there remain more questions, including how to ensure the system can function for patients at differing stages of ALS. Also, converting Emotiv's Insight headset into a medical product would require substantially more reliability and stress testing, Emotiv CEO Le said.
"There's definitely a lot of excitement about what we've built," she said. "It makes all the work really humbling and very worthwhile for our team."
Valor called the system the team developed "revolutionary and technologically ahead of its time."
He added that there was great potential for a brain-wave-reading headset like the Insight, saying the technology could offer a path for scientist Stephen Hawking, who has lived with ALS for decades, to continue producing works.
"The potential for this technology to reawaken and restore multiple beautiful minds to this world is staggering," he said. "We are writing the pages of science fiction becoming fact. It is amazing to be a small part of it."

Friday, August 29, 2014

Phone Calls continue to falsely claim that AARP is providing “free” medical alert devices - FRAUD ALERT

as posted by AARP article by Sid Kirchheimer 

AARP Fraud Watch Network logo
Robocalls continue to falsely claim that AARP is providing “free” medical alert devices (I got one just yesterday, with a displayed caller ID number belonging to a local swim club), and now there’s a new ruse faking the AARP name.
This time, live representatives claim to be calling on behalf of “AARP Member Advantages,” asking you to “verify” personal information based on the lie that it’s a requirement of the U.S. government if you want to continue participating in AARP-related services such as insurance.
Nonsense! But more important, providing or confirming information such as your name, address and date of birth to unknown callers can be risky. These pieces of data could be used to open fraudulent credit accounts in your name.
Don’t be fooled. AARP calls its members with important legislative alerts, invitations to community events or telephone forums, and requests member opinions through scientific surveys. But AARP does not call members asking to verify sensitive personal and financial information that could be used for identity theft.
In this case, another sign of the scam is the incoming number displayed on caller ID: 202-653-8000, a nonworking number.
But that doesn’t mean these scammers haven’t done some homework. “The call came for my father who has Alzheimer’s, and he was asked for by his name,” says one Fraud Watch Network member, who tipped us off to this new scam. “But the phone number called is listed in my name – not his – since I’m my parents’ caregiver and they live with me.”
Because the member realized the caller’s claim - that her father’s personal information was “required by the U.S. government” to continue enjoying AARP benefits and programs - was completely bogus, she ended the call quickly. If you get a similar call, take the cue and hang up just as fast.
AARP is often the target of impostors behind scams that, unfortunately, attempt to prey on our members. Since this scheme surfaced last month, we continue to hear from members receiving robocalls claiming that AARP is providing medical alert devices - sometimes on the advice of their doctors and/or with the promise of $3,000 in coupons.
This ploy, which never addresses recipients by name (or those of their physicians), seeks your credit card information for shipping or activation fees for the “free” device. As the FTC and others bring some perpetrators of these illegal robocalls to justice, other crooks eagerly take their place.
“I received one ‘free’ alert robocall claiming to be from AARP on June 19 and another on July 19. I can’t wait until what happens on Aug. 19,” quips AARP member and Fraud Watcher Eleanor of Cedar Rapids, Iowa. “Both times, a demanding voice urged that I push 1 to accept the ‘free’ offer or push 5 to refuse it.”
She wisely did neither and hung up. Pushing any button on the phone keypad just alerts the scammers of your working number for future calls.
In reviewing our files, we’ve noticed that summer seems an especially popular time for AARP name-dropping. Coincidentally, it was this week two years ago when AARP was spoofed in another scam that sought personal information, claiming it was needed for the targeted victim to receive a free gift card.
For information about other scams, sign up for the Fraud Watch Network. You’ll receive email alerts with tips and resources to help you spot and avoid identity theft and fraud, and gain access to a network of experts, law enforcement and people in your community who will keep you up-to-date on the latest scams in your area.
For the American Association of Retired Persons, visit: http://www.aarp.org/


Labor Day 2014 Note: End Subminimum Wages in Sheltered Workshops that employ Disabled!

as shared by Access Living (cil) in Chicago...

Dear Access Living friends and allies,
As we head into Labor Day weekend, we wanted to take the time to remind you that people with disabilities are still fighting against the practice of using sub-minimum wages to pay people with disabilities in segregated employment. Yesterday, several national disability organizations staged a protest in New York against the company SourceAmerica.
Here is a summary from John Pare of the National Federation of the Blind (NFB):
“Yesterday ADAPT, APSE, LPA, NCIL, NFB, and TASH conducted a very successful protest regarding SourceAmerica’s (formerly NISH) practice of paying people with disabilities less than minimum wage.
“Special thanks to NCIL and APSE for their terrific participation and inspiring remarks.
“On this Labor Day weekend, let’s pledge to redouble our effort to phase out and repeal section 14(c) of the Fair Labor Standards Act. This provision was wrong in 1938 and it is even more egregious today!
“With over 400,000 of our disabled brothers and sisters toiling away in sheltered subminimum wage employment, on this Labor Day, let’s remember that it is sadly no time to celebrate.
“SourceAmerica will undoubtedly launch a new wave of publicity to promote its programs, but no matter how much money it spends, subminimum wages will still be wrong.
“Yesterday, at our protest, the passion for high expectations, the demand for equality, and the call for fair wages were palpable.
“There is no place for subminimum wages in the lives of disabled Americans. We will live the lives we want. We will not stop our advocacy until all disabled Americans have the same wage protection as their non-disabled peers.”
We in Illinois are fortunate that Governor Quinn signed the Employment First Act to help make sure that people with disabilities are tracked into competitive, integrated employment FIRST before sheltered subminimum wage workshops. However, this is a national fight and one important way to help is to speak out if you or your family member is paid sub-minimum wage in sheltered workshops. Please see below my signature for a call from the NFB for people who are willing to speak out. The labor struggle will not be over until we right this injustice.
Amber Smock
Director of Advocacy, Access Living
Disability Advocates:
The National Federation of the Blind is actively seeking individuals who are currently competitively employed, but who have worked in sheltered subminimum wage work environments in the past. If this has been your experience, we would greatly appreciate it if you would answer the following questions:
•                   What type of work did you perform for subminimum wages?
•                   What type of work do you do now?
•                   Is it competitive?
•                   Do you earn the federal minimum wage or more?
•                   What has changed in your life since you started earning the minimum wage or more?
•                   What is your opinion of the Presidential Executive Order to raise the minimum wage for federal service contract employees to $10.10 per hour?
•                   Would you be willing to speak to a reporter about your experience?
Please send your responses, along with your contact information, to cdanielsen@nfb.org as soon as possible. You may also respond by telephone by calling (410) 659-9314, extension 2330.
Thank you,
Chris Danielsen
Director of Public Relations

Public Transit survey to identify both barriers to and best practices for participation from people with disabilities - Easter Seals Project ACTION

as shared by Easter Seals Project ACTION http://www.projectaction.org/

We'd like to hear from you!
In an effort to increase the participation of people with disabilities in the coordinated public transit-human services transportation planning process, Easter Seals Project ACTION is conducting a survey to identify both barriers to and best practices for participation from people with disabilities. We invite responses from both organizations that have and that have not participated in the transportation planning process as well as from individuals with disabilities who have or have not been involved in the transportation planning process.

Please take a few minutes to complete this survey based on your knowledge of the current transportation plan(s) in your state, region, or local area and/or your experience with the transportation planning process in your community. Also, please provide any suggestions you have both for organizations to better involve people with disabilities and for individuals with disabilities to become involved in the transportation planning process.
The survey will be active until the end of the day on Monday, September 15, 2014. Thank you so much for your time.

If you have questions, please contact Kristi McLaughlin at kmclaughlin@easterseals.com or (800) 659-6428.

Easter Seals Project ACTION (ESPA) is funded through a cooperative agreement with the U.S. Department of Transportation, Federal Transit Administration and is administered by Easter Seals, Inc. This document is disseminated by ESPA in the interest of information exchange. Neither Easter Seals nor the U.S. DOT, FTA assumes liability for its contents or use.

Wheelchair Tennis 2014 World Championships

ST. LOUIS (KTVI) – While many felt like they were baking in today’s sun, that didn’t stop the back and forth in Forest Park today.
‘I play with gloves and I had to switch them many times,’ says Stephane Houdet, a French player ranked 2nd in the world.  ‘But I think it was worse for my partner because you can have blisters with the humidity here.  It’s very hard to push.’
But these pros pushed through the humidity and hot temperatures for the start of the USTA U.S. open wheelchair championships.
The top 100 players in the world are in town through Sunday and chances are they’ll be checking in with Harlon Matthews for a tune up.
‘That is 85 percent of this game is wheelchair mechanics,’ says Harlon Matthews, a technician with Eagle Sports Chairs Repair.
Mathews is a technician and player in the A division, so he understands what these athletes need to compete.
‘If you’re playing shortstop, feet shoulder length apart in the ready position, that’s what we are,’ says Mathews.  ‘That 20 degree camber makes the chair very responsive so that you maneuver a lot easier on the court. ‘
While the wheels are at a 20 degree angle, the tires take up to 140 psi.
Today they lowered the pressure to 110 as temperatures reached the upper 90’s.
Play this morning started at 9:30 because of the heat, but these players didn’t miss a beat with this world competition.
‘Just because you have a disability doesn’t mean you can’t do something and tennis is a sport that I recommend for anyone to get involved in,’ says Lucy Shuker, a Paralympian athlete who has competed in Beijing and her native London.

Detroit-Area Man Zafar Mehmood, Indicted for Attempting to Conceal Evidence in $30 Million Medicare Fraud Scheme

Department of Justice
Office of Public Affairs
Thursday, August 28, 2014
Detroit-Area Man Indicted for Attempting to Conceal Evidence in Connection with Upcoming Trial for $30 Million Medicare Fraud Scheme

A Detroit -area man was indicted today for obstruction of justice in connection with his alleged attempts to conceal evidence relevant to his upcoming trial for an alleged health care fraud scheme with estimated losses exceeding $30 million.

Assistant Attorney General Leslie R. Caldwell of the Justice Department’s Criminal Division, U.S. Attorney Barbara L. McQuade of the Eastern District of Michigan, Special Agent in Charge Paul M. Abbate of the FBI’s Detroit Field Office and Special Agent in Charge Lamont Pugh III of the Department of Health and Human Services Office of Inspector General (HHS-OIG) Chicago Regional Office made the announcement.

Zafar Mehmood, 48, of Ypsilanti, Michigan, is currently awaiting trial for his alleged role in a health care fraud scheme involving, among other allegations, the submission of fraudulent claims to Medicare for services that were medically unnecessary or never provided.   Mehmood allegedly used at least four home health agencies in the Detroit area, including Access Care Home Care Inc., Patient Care Home Care Inc., Hands On Healing Home Care Inc. and All State Home Care Inc., to perpetrate his fraud.

According to today’s indictment, on July 25, 2014, and again on July 28, 2014, Mehmood attempted to alter and conceal records and documents, which included several patient files, with the intent to impair their integrity and availability for use in his upcoming trial.

An indictment is merely an allegation, and the defendant is presumed innocent unless and until proven guilty beyond a reasonable doubt in a court of law.

This case is being investigated by the FBI and HHS-OIG and was brought as part of the Medicare Fraud Strike Force, under the supervision of the Criminal Division’s Fraud Section and the U.S. Attorney’s Office for the Eastern District of Michigan.  This case is being prosecuted by Trial Attorneys Nathan Dimock, Niall O’Donnell, and A. Brendan Stewart of the Criminal Division’s Fraud Section.

Since its inception in March 2007, the Medicare Fraud Strike Force, now operating in nine cities across the country, has charged nearly 1,900 defendants who have collectively billed the Medicare program for more than $6 billion.  In addition, the HHS Centers for Medicare and Medicaid Services, working in conjunction with the HHS-OIG, are taking steps to increase accountability and decrease the presence of fraudulent providers.

To learn more about the Health Care Fraud Prevention and Enforcement Action Team (HEAT), go to: www.stopmedicarefraud.gov  


# # #

In Illinois McHenry County families struggle to find Disability Services

as posted Aug 28, 2014 by Northwest Herald, article By EMILY K. COLEMAN

CRYSTAL LAKE – Even a trip to the grocery store can be difficult for the Diana family.

Andrew Diana moved back to his parents’ house in Crystal Lake three weeks ago after aging out of Heartspring, a center for children and young adults with special needs in Wichita, Kansas.

The 22-year-old’s diagnosis of severe autism and a seizure disorder means that he requires 24-hour care, and so his mother, Dianne, has taken a leave from her job to care from him.

“To put it in perspective, he’s like a 2-year-old in a 22-year-old’s body,” said his older brother, named Kenneth after his father. “It’s like when you see a kid at a checkout register ask for candy and they don’t get it and they scream until they get it. In essence, that’s the kind of behavior you see, but in an adult’s body. It’s very unusual from an outsider’s perspective, and we’ve had to deal with that countless times.”

The hope is that Dianne can go back to work once Andrew’s placement at a group home comes through, but lots of people across McHenry County are waiting for a spot.

The waiting list for residential services of the kind Andrew needs has 387 names on it, according to the Crystal Lake-based nonprofit Options and Advocacy. Another 174 people need residential services, but without the 24-hour care.

About 10 people are moved off those lists each year, Options and Advocacy Executive Director Cindy Sullivan said.

“We have all these needs, and we’re not able to even come close to meeting them,” she said. “We try to do the best we can. We try to provide as much support to our families as we can. We try to secure all the funding from the state that we can. And it’s not easy to tell a family that we couldn’t, but it’s not for a lack of trying.”

The state of Illinois ranked among the bottom 10 in a study recently released by United Cerebral Palsy. It has consistently remained at the bottom since 2007.

The report looks at the services people with intellectual and developmental disabilities – people like Andrew Diana – receive and judges the quality and inclusive nature of them. It places a large emphasis on getting people with disabilities out of state-run institutions and into group homes.

McHenry-based Pioneer Center for Human Services has 10 group homes, one of which is for children diagnosed with autism, said its director of intellectual and developmental disability services, Sam Tenuto. The plan is open another home that will house four people in the next couple months.

Tenuto hopes to get Andrew Diana in the next group home the nonprofit develops.

“The [waiting] list is incredible,” he said. “There are so many people looking for support that it’s to the point where if I had 50 percent more homes, ... it would barely make a dent.”

Expanding more quickly just isn’t possible, though, with the group’s fragile finances, Tenuto said. Between the low funding levels from the state’s Department of Human Services – which are always the first item on the chopping block come budget time – and late or inconsistent state payments, it’s hard for Pioneer Center to put together three-year or five-year plans.

It’s even more difficult to provide services for high-need individuals like Andrew Diana who require lower staff-to-client ratios, he said.

The lack of services reached a critical point for Dianne and Kenneth Diana who decided about five years ago to send their son to Heartspring in Wichita.

“We looked all over the country, and we were really hoping for something close by, possibly in Illinois or Wisconsin,” Dianne Diana said. “There just wasn’t anything available that would really meet his needs like Heartspring. Nothing really compared.”

But looking out of state isn’t an option for Andrew’s next stage, she said. In order to receive funding, the group home must be in Andrew’s primary state of residency.

“We hope that he gets into a really good group home, and that he can transition to that and be comfortable and enjoy going out and doing things in the community, going bowling, going to the movies, going to restaurants,” she said.


David Tom 'RIP', an Asian immigrant, 31 years in Illinois mental institutions: When Illinois chewed up a life

as posted Aug 29, 2014 by the Chicago Tribune as a Editorial

The story of David Tom and a cruel mistake

David TomDavid Tom, an Asian immigrant, was locked up from 1951 through at least 1982 in Illinois mental institutions largely because no one in authority ever spoke to him in his native Chinese. His horrifying experience cemented the case against institutionalizing the mentally ill and developmentally disabled.

Tom died Aug. 16 at the estimated age of 84. It has been a long time since he was in the headlines, and likely few people remember his case. It's worth a telling.

Tom won his freedom through a high-profile legal campaign waged by then-Cook County Public Guardian Patrick Murphy, who is now a circuit court judge. The Tribune ran one of its stories on the case under the headline, "State chews up a life, then spits victim out."

A federal jury awarded Tom $400,000 after his release. Still, his prospects looked bleak. Being locked up and unable to say much more in English than, "Me no crazy," had driven him, in a word, crazy. He needed constant supervision and care.

Tom's saviors were San O, Peter Porr and others associated with the South-East Asia Center, a community organization on Chicago's North Side.

O said that over time, living in a settlement-house setting among supportive companions since 1983, Tom regained some of his lost social and communication skills. He responded positively to people around him, enjoyed shaking hands and loved to sing. His favorite tune, she said: "Que Sera, Sera," its title a phrase that means, roughly, "What will be, will be."

O, a social worker, suspects that language was only part of the reason for Tom's 31 years in institutionalized care. Testing methods were culturally biased, she said, and prone to exaggerate the "minor" issues that Tom likely exhibited when he was first placed in a Cook County sanitarium after contracting tuberculosis. Further, she said, "In those days they locked up all the so-called mentally ill."

These days, across the country, the "insane asylums" of yore mostly have given way to group homes in community settings. There is a place for high-quality institutions, but it is limited.

In Illinois, Gov. Pat Quinn set out three years ago to scale back the state's antiquated and expensive network of mental health facilities as well as developmental centers — institutions that care for people who can't live independently because of profound disabilities. Most other states have closed these operations and moved residents whenever it's appropriate to community-based care.

At the end of 2012, Quinn's administration achieved a significant milestone when it closed the outdated Jacksonville Developmental Center — once known as the State Hospital for the Insane — over the objections of government union workers and local officials who viewed this costly, inefficient operation as a taxpayer-funded economic engine.

A federal judge recently swatted down objections to Quinn's plan for closing the Warren G. Murray Developmental Center in Centralia. To his credit, Quinn is moving deliberately to ensure that its residents receive safe and appropriate placements. Republican challenger Bruce Rauner has said he supports keeping Murray open, which mystifies us.

For the most part, the nation has made a welcome shift to cost effective and humane community-based care. Still, the nation, and particularly this state, have tremendous work left to do to properly treat people with mental and physical disabilities. Cook County Sheriff Tom Dart wrote on these pages recently that Cook County Jail, which he supervises, has turned into the state's largest mental health facility.

Could David Tom be consigned today to three decades in an institution until champions came to his rescue? Let's hope not. Let's reflect on his life, and recognize that the dignified treatment of the disabled remains one of the great challenges of American society.

Copyright © 2014, Chicago Tribune

Related Chicago Tribune article:

Thursday, August 28, 2014

Professor Stephen Hawking ALS Ice Bucket Challenge, heartwarming family moment

No one is more aware of how hard it is to live with Amyotrophic lateral sclerosis (ALS) than Stephen Hawking, the world’s most famous physicist who has been suffering from an ALS-related condition for decades now. Because of this, we knew it was only a matter of time before we saw Hawking pop up in an “Ice Bucket Challenge” video of his own to help raise funds for finding a cure for ALS.
Unfortunately, Hawking said that he couldn’t take the Ice Bucket Challenge himself because he had pneumonia last year. However, he did recruit his three children Robert, Lucy and Tim to take the challenge on his behalf, and sure enough, they all enjoyed the wonderful sensation of having cold water dumped on their heads. Hawking also urged everyone who watched the video to donate money to the Motor Neurone Disease Association (MNDA) to help fund research into finding a cure for the disease.

Retailers 'must improve accessibility for disabled people'

Though this article is from the BBC, it's not that much different in Chicago finding accessible shopping in neighborhoods 

Retailers are missing out on income from spending by disabled people owing to a lack of accessibility at stores, the government has said.
BBC News | Aug 27, 2014
Car parked in disabled parking space
The government says businesses can do more to improve accessibility
The latest figure from the Department for Work and Pensions (DWP) suggests that UK households with a disabled person have a combined income of £212bn after housing costs.
Disabled people said that finding accessible shopping was hardest.
This was followed by difficulties when going to the cinema and theatre.
Eating out at pubs and restaurants was the third toughest experience for accessibility.
"We want businesses up and down our High Streets to realise they're excluding more than 12 million customers and their families if they fail to cater for disabled people," said Minister for Disabled People Mark Harper.
"That's the equivalent to the populations of London, Birmingham, Leeds, Sheffield, Cardiff and Manchester combined.
"It's not just about fairness, it makes good business sense to be accessible."
He called on businesses to clear clutter inside and outside their premises, print paperwork such as menus using bigger font sizes, improve staff training and provide specific parking spots for disabled customers.
The campaign comes as a commission on the extra costs faced by disabled people starts its work.
The chairman of the commission, Robin Hindle Fisher, told the BBC News website earlier this month that businesses needed to be smarter and consumers with disabilities needed to be savvier by shopping around.
The charity, Scope, claims that the living costs premium facing disabled people amounts to £550 a month. This, it claims, is not covered by the typical total of £360 a month available to people through the main benefits to which they are entitled.

Alex Schneider, Autistic runner continues to overcome adversity with his feet

as reported by USA Today, By: NINA MANDELL Aug 27, 2014
Courtesy of Robyn Schneider
photo Courtesy of Robyn Schneider

Three to four times a week, Alex Schneider, 24, laces up his running shoes and goes for a run to train for his next marathon.
Always, his longtime coach, Kevin McDermott, runs with him. It’s a partnership that has been going on since Schneider and his twin brother, Jamie, were teenagers. With McDermott, Alex Schneider has run marathons in under 3:20, one-mile races in under 6:30, 10Ks, 5Ks and whatever else he can. Jamie, also a runner, runs mostly for fun.
Without McDermott, Alex Schenider would be lost – literally and perhaps figuratively.
The Schneider twins have autism and are non-verbal. But since the moment their mother, Robyn, first introduced them to a running club that offered volunteers to run with kids with disabilities, they’ve been hooked.
“It just sort of took on a life of its own,” said Robyn. “The boys enjoyed it, so we just kept them involved.”
At first, McDermott remembers Alex would pay no mind to the finish line after races. He would run, McDermott thinks, thinking that would be the last time he would run again.
“He didn’t know it was going to be a routine and he just wanted to go. Now he knows it’s going to be roughly three or four times a week,” he said. “I think that’s made a big difference. He knows he’s going to get to run again, it’s not his last run ever.”
He’s also come up with a system to stop Alex from running up too far ahead. Before runs like mile-repeat runs (where runners have to stop after each mile), McDermott puts tape at the end of each mile so Alex knows to stop.
In addition to loving running, Alex Schneider is incredibly competitive at it. He’s run in more than 150 races including the Boston Marathon and New York Marathon, which he plans on running again in November for a team with the Association for Science in Autism Treatment. He’s also rarely injured.
Michael Rosanoff, the assistant director of Public Health Research & Scientific Review at Autism Speaks, said it makes sense that running appealed to the boys.
He said the aspects of it being an individual sport and repetitive motion makes it easier for people on the autism spectrum to participate than in some other sports.
“But really it’s his passion and commitment that gives him a competitive advantage,” Rosanoff added.
The support the Schneider’s have gotten from the community has been apparent in a recent Runner’s World contest, where Alex is up for a chance to be on the cover of the popular running magazine.
“We were really excited that he was not only came out so incredibly far ahead, but also that he also was the only one on the leaderboard from Long Island and the only one out of the top 10 from New York,” Robyn said.
The cover, McDermott hopes, could help inspire a new generation of runners with autism though he doubts Alex would care about it.
“It would be an opportunity for a little publicity more for the other parents, teachers, people who volunteer and work with autistic children to see … what they can do,” he said.

Wednesday, August 27, 2014

Theater Performances for People with Disabilities in Chicago - Lifeline Theatre #‎audio‬-described ‪#‎Open‬-captioned #Accessibile

as posted by Lifeline Theatre ...


We believe that our Big Stories, Up Close should be accessible to everyone and offer the services listed below.
Patrons wishing to make reservations for any special performance or take advantage of any accessibility service may contact Accessibility Coordinator Erica Foster directly at 773-761-4477 x703 or access@lifelinetheatre.com, or in person at the Lifeline Box Office (6912 N. Glenwood Ave.) Monday-Friday from 9am to 5pm.

•  Curb-to-seat assistance on request
•  Large print and audio format programs on request
•  Pre-show touch tours and audio-described performances for selected dates in our MainStage series:
Jane Eyre
Saturday, October 25, 2014     2:30 p.m. touch tour, 4:00 p.m. performance
One Came Home
Saturday, March 7, 2015     2:30 p.m. touch tour, 4:00 p.m. performance
Soon I Will Be Invincible
Saturday, July 18, 2015     2:30 p.m. touch tour, 4:00 p.m. performance
A touch tour is a chance to visit the set, feel the props and costumes, and meet the characters before the performance. Audio description is a live commentary by trained describers, interspersed with the actors' dialogue.
•  Complimentary assistive listening devices on request
•  Open-captioned performances for selected dates in our MainStage series:
Jane Eyre
Friday, October 3, 2014     7:30 p.m. performance
One Came Home
Friday, March 13, 2015     7:30 p.m. performance
Soon I Will Be Invincible
Friday, June 26, 2015     7:30 p.m. performance
Open captioning is a service for people with any level of hearing loss, featuring a text display of the words and sounds heard during a production.
•  Wheelchair accessible seating and seats without stairs in our theatre
•  Wheelchair accessible restrooms in our lobby
•  An accessible parking space in front of the theatre, available with advance request

For the Lifeline Theatre, visithttp://www.lifelinetheatre.com/