AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Wednesday, 23 October 2013
HIGHLIGHTS
Mark Perriello, President and CEO of AAPD, quoted in article, Beyond a gadget: Google Glass is a boon to people with disabilities. USA Today (10/22)~(Marco deila Cava)Researchers are working hard to harness the hands-free nature of Google Glass to improve the lives of those with compromised mobility, vision and hearing.
SANTA CRUZ, Calif. — Autumn in Northern California can bring out the shutterbug in anyone. Leaves morph from green to gold, seals and otters dot the blue Pacific. Tammie Lou Van Sant loves to head out on such photo safaris, sometimes posting dozens of shots a day to social media sites.
No big deal — unless you consider that Van Sant, 52, is paralyzed from the chest down, possesses no digital dexterity and has been waiting nearly two decades since breaking her neck in a car accident to do something seemingly as simple as snapping a picture.
"I think I've taken a photo of everything in Santa Cruz," says Van Sant, her grin stretching ear to ear. "It is just awesome."
The "it" in question is Glass, Google's wearable computer that last summer found its way onto the faces of about 8,000 Glass Explorers, people who, like Van Sant, wrote the search engine juggernaut with a compelling reason why they should be among the first in the world to acquire the $1,500 invention.
Although a number of scientists have been toiling in obscurity since the 1970s on glasses that harness computing power, Google was first out of the commercial gate with a lightweight, voice-controlled device that features a small square prism just off the right eye and a touch-sensitive temple. Through voice and touch, Glass can shoot pictures and video, make and receive calls and texts, and access the Web.
Glass has an expected on-sale date sometime in 2014. As a product still in its infancy, it recalls the iPhone's early days as a smartphone with promise and woefully few apps. But while Glass' full potential will be determined down the road, it already has distinguished itself as a potentially life-changing tool for the disabled.
Researchers in a range of disciplines are looking into ways to leverage Glass' inherent advantage over the smartphone — its hands-free nature — to help those who navigate life with compromised mobility, vision and hearing. There's even work being done to assist those with autism, using facial recognition software to help identify the emotions of others.
Perhaps not since the invention of text-to-voice and other speech-recognition software has a tech invention had such potential to help the disabled.
"Glass will be revolutionary for the disabled," says Rosalind Picard, founder of the Affective Computing Research Group at Massachusetts Institute of Technology's Media Lab, whose focus is autism and communication technology.
"With facial analytics, it's possible to, with the subject's approval, have Glass scan a face and put up a green light if the person is intrigued, yellow if they're confused or red if they're bored," she says. Then, chuckling, she adds, "It could even whisper at you during that date, 'Hey, she's losing interest.'"
Picard says speech recognition is getting so good that a deaf person soon could see a real-time transcript of what a friend is saying in Glass' prism. A person with limited vision could take walking directions from Glass through its bone-conducting speaker housed in the right temple.
"One day soon, we'll look at regular glasses the way we now look at old phones," she says. "It will change things so much."
What pleases Mark Perriello is that, thanks to the feedback-intensive Explorers program, Glass is being developed with input from the disabled.
"All too often, technologies are created and then people ask, 'OK, what if people with disabilities need to use it?'" says the CEO of the American Association of People with Disabilities, a Washington, D.C.-based advocacy group founded in the wake of the 1990 Americans with Disabilities Act.
"From taking a picture with ease to helping those with low vision redefine their world," Perriello says, "this has the possibility to level the playing field."
A GLASS ACT
Wearable computers have always been about increased accessibility, says Thad Starner, who has been toting around computerized glasses of his own design since 1993. In 1998, he demonstrated his creations to a pair of Stanford University students named Larry Page and Sergey Brin. Google's co-founders contacted Starner three years ago and made him Glass' lead designer.
"I could cite academic papers for you, but Larry says it best, 'With Glass, we are reducing the time between intention and action,' " Starner says. "Glass keeps you in the flow of what you're doing, and for people with disabilities, that's even more vital. Suddenly someone isolated at home is more fluent with (text) messages than their friends with a mobile phone. It really can change lives."
For many scientists, the thrill is in trying to turn sci-fi dreams into today's reality. But for some, the quest is personal.
Catalin Voss has a cousin with Asperger syndrome, a high-functioning form of autism; that has led the precocious German-born Stanford University sophomore to found Sension, a company whose missions include developing Glass software that turns the expressions of others into on-screen keywords like "happy" and "angry."
"Emotional recognition (software) is still in its early days, at about the state of a 3-year-old, but I still felt passionate about trying to do something meaningful," says Voss, whose software maps 78 points on the face. "From my personal experience, I know that the issues (for my cousin) are recognizing an expression, and then smiling back. Glass is good for the first, and can help with the second."
As a youngster, Kim Xu used to attend Girl Scout meetings at the home of a girl whose brother was deaf. Fast-forward to last year, when the Ph.D. candidate in human-centered computing at Georgia Tech co-created SMARTSign, an app that pushes out short video tutorials on American Sign Language.
"For my Ph.D., we studied how six families with deaf children used the app," which is also available for Android phones, says Xu, who now works for tech consulting firm Tin Man Labs in Huntsville, Ala.
"Seeing them learn at a faster pace was so satisfying. But it was clear that by using (the app with) Glass, people were able to learn at a more constant pace," she says. "With a phone spending so much time in your pocket, you don't really have it out in front of you as much as you think."
Shaun Kane can appreciate the merits of Glass perhaps a bit better than most researchers. His own physical disability limits him to the use of one arm while he works on ways to help the visually impaired through technology.
"One of the most basic challenges for many disabled folks is just getting around every day carrying stuff, getting things out of pockets and things like that," says Kane, assistant professor in the department of information systems at the University of Maryland in Baltimore County. "If I have something in one hand, that's it for me."
Kane has been using Glass daily since August, mostly to snap photos on the go. But he's bullish on the device's potential to vastly improve quality of life for the blind. "Having something on your head that is pointing naturally in the direction you are looking is invaluable," he says.
Jeff Bigham, who conducts research in the same area, agrees. "Imagine this," he says, excitedly. "A blind person with Glass walks by a store and Glass recognizes it and announces what it is. Maybe that person didn't notice that it changed from a restaurant to a dry cleaner, but now he knows. These are things the rest of us take for granted, but for a blind person, it's truly powerful."
Bigham, an assistant professor at the Human-Computer Interaction Institute at Carnegie Mellon University in Pittsburgh, has developed software that in fact can do such things. A video he posted on YouTube shows a blind man wearing glasses walking through a room filled with equipment, and each time a piece comes into Glass' view it describes the apparatus to the wearer.
Glass' other big score comes in a simpler form. Bigham's VizWiz is a smartphone-based project that has seen 5,000 blind users ask more than 70,000 visual questions ranging from "What's this spot on my baby's head?" to "Do I look nice?" — questions and photos that are then sent out to the Web and answered in less than a minute by live respondents working through Amazon Mechanical Turk.
Where smartphone-based VizWiz users have to contend with the inherent hassle of "using a handheld device while blind, Glass offers the chance to provide continuous, hands-free visual assistance," Bigham says.
When Larry Kaplan wrote in to Google's #ifihadglass contest, he wasn't looking to use them himself. Instead, Kaplan, who sells discounted sneakers online, wanted to make Glass available to the ALS patients he has befriended as a local volunteer over the past 15 years.
"When you have ALS (also known as Lou Gehrig's disease, which cripples motor functions) you often don't feel like a part of full society, and I thought maybe wearing Glass could help," says Kaplan of West Chester, Pa. "It's been amazing. Some patients have no use of their hands, and others are losing their vocal abilities. But they talk to Glass and it understands them."
One of the beneficiaries of Kaplan's gesture is Gary Beech, a retired IRS tax examiner from Philadelphia. "It's very comforting to know that people in my position can still experience some things they might not be able to in life," Beech writes in an e-mail. "Glass can be worn by somebody outside watching a soccer game, and I can watch it all happen at home on a computer. Truly amazing."
STILL A WAYS TO GO
One blind Glass Explorer says the potential for greatness lies just beyond the product's initial limitations.
"I'm a little frustrated with (Glass), not because it's something I can't use, but because with trivial modifications I would use it all the time," says Sina Bahram, founder of disability-focused Prime Access Consulting in Cary, N.C., and a Ph.D. candidate in computer science at North Carolina State University. "It's not pie in the sky. For me, Glass could be an amazing conduit to the outside world."
Among his complaints are a volume control that is "embedded too far deep in the menu," a hypersensitive temple touch pad and a "ban on facial recognition (out of privacy concerns) that really hurts those of us who are blind."
Bahram is at least hoping for object recognition to become a reality. "Think about what it's like for me to hail a cab," he says. "Now, picture me wearing a device that sees a cab heading my way, and alerts me to it. That's a paradigm shift."
For Columbia University law school student Alex Blaszczuk, Glass didn't need to deliver a seismic boost but rather just lift her occasionally sagging spirits.
Two years ago, she was on the verge of graduating with her law degree when an oncoming car hit hers while she was traveling in Vermont, leaving her paralyzed from the chest down. With great effort, she has returned to Columbia, where she uses Glass to help her research and communicate with friends and social networking circles.
"My life now is about learning to accept that some things are not available to me," says Blaszczuk, 26, a Chicago native who is fluent in Polish and focusing on international transactional law. "But when I took my first picture with Glass, I smiled and thought, 'That's one less thing I have to be OK with not being able to do.'"
She says an eventual improvement in voice-command technology should make using a device such as Glass even more beneficial, cutting valuable and frustrating time off chores that the non-disabled take for granted, whether answering an e-mail or responding to a text message.
But in the end, the biggest gift Glass gives her is that of feeling normal.
"People with disabilities often are seen either as tragedies or heroes," she says. "But when I'm using Glass, I'm just like anyone else. I can post a stupid cat picture or a shot from a tour of Brooklyn that I took. That kind of self-expression means I'm not limited to being a stereotype."
Santa Cruz's Van Sant is all about self-expression this time of year. Her modest home that she shares with her mother is overrun with Halloween decorations, including three fake graves on her front lawn and a skeleton that writhes in electrocuted pain as you make your way up her wheelchair ramp.
Inside, there's more of the same festive ghoulishness, along with an overly friendly Labrador service dog named Robby who can open doors and windows but is far more interested in being caressed.
Van Sant takes Glass off only to sleep, preferring to have her device handy for that unexpected amazing-pets video or perhaps a breathtaking sunset. The device may seem like a wacky cyborg-like gadget to many on this planet, but for this woman, it has brought a sense of joy that was long banished after a truck hydroplaned, flipped and crashed into her car on a rural highway south of here.
"I'm out more doing stuff since I got Glass, interacting with people and the world," she says. "Sure, sometimes people see me talking to Glass and assume I'm weird. But most times they come up and go, 'Oh, I've heard of those, can I see them?' "
Robby suddenly bounds out of his dog bed over to a visitor with puppy energy; Van Sant apologizes and asks the dog to lie down.
"I waited almost 20 years to be able to take a picture," she says softly, shaking her head in quiet amazement. "I simply can't imagine anything more useful to me."
Robby stands up again. Van Sant sighs.
"Well, other than an invention that would make my dog mind me," she says, laughing. Then, smiling at a contrite Robby, she commands: "Glass … take a picture."
~~~
Tech breakthroughs for people with disabilities. USA Today (10/22)~(Marco deila Cava)
Other innovations blazed the trail for Google Glass.
Google Glass is just the latest technological leap that promises to greatly improve the lives of the disabled. Among past innovations that have made a difference:
• Smartphones: Apple's iPhone broke new communication ground in 2007, with Android versions following in its influential wake. Suddenly, a device that once was used only to make phone calls could connect users to data and each other with a minimum of keystrokes, making it especially useful for those with limited digital dexterity.
• Voice-recognition and text-to-speech software: The continuing refinement of speech recognition technology has evolved to the point where the visually impaired can hear a computer speak the words in a document or hear an incoming text message or voice mail from a friend. The great British cosmologist Stephen Hawking wouldn't be the household name he is without this invention.
A GLASS ACT: Harnessing hands-free power
• Social media platforms: Whether it be Facebook or Twitter or myriad other social networking sites, all serve to connect people who otherwise might remain out of touch — a service with immeasurable emotional value to those whose disabilities limit their time out of the home.
• Motorized wheelchairs: Although rudimentary motorized wheelchairs have their historical roots in the desire to help disabled veterans returning from World War II, the technology is immeasurably more sophisticated today, with these computerized, land-roving conveyances being operable with just a tube controlled by a disabled user.
Sources: American Association of People with Disabilities, American Foundation for the Blind and USA TODAY research
~~~
NATIONAL
Biden to attend mental health forum in Mass. USA Today (10/23)
Vice President Biden plans to attend a two-day mental health event in Boston.
BOSTON (AP) — Vice President Joe Biden planned to join Health and Human Services Secretary Kathleen Sebelius and former U.S. Rep. Patrick Kennedy for a forum on policies that affect people with mental illness, intellectual disabilities or addiction.
The two-day event marks the 50th anniversary of President John F. Kennedy's signing of the Community Mental Health Act. The legislation, the last signed by Kennedy before his assassination, helped transform the way people with mental illness are treated and cared for in the United States.
Chelsea Clinton and Chicago Bears wide receiver Brandon Marshall, who's been treated for a personality disorder, also plan to attend the opening night gala.
Biden, Sebelius and Marshall are expected to speak at the event.
Clinton, vice chair of the Clinton Foundation, will moderate a conference panel on public health and community approaches to addressing behavioral health disorders.
Patrick, the late president's nephew and a longtime mental health advocate, said he hopes the forum will help remove the stigma surrounding mental illness.
The Wednesday night gala will be followed by a daylong conference Thursday at the Westin Copley Place in Boston.
The forum also will include a discussion of the importance of stemming suicide among veterans and improving mental health care for a generation of veterans returning from a decade of war.
The law signed by Kennedy in 1963 aimed to build mental health centers accessible to all Americans so that those with mental illnesses could be treated while working and living at home, rather than being kept in state institutions that sometimes were neglectful or abusive.
Recent deadly mass shootings, including at the Washington Navy Yard and a Colorado movie theater, have been perpetrated by men who were apparently not being adequately treated for serious mental illnesses.
Those tragedies have renewed public attention on the mental health system and areas where Kennedy's hopes for the treatment and care of those with mental illness were never realized.
Copyright 2013 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
~~~
STATE/LOCAL
Lake County parents, lawmakers target dyslexia. Chicago Tribune (10/22)~(Kristy MacKaben)
Kathi Keane of Grayslake says she's been fighting for years to get help for her 10-year-old daughter Grace's dyslexia.
By the end of the third grade, Grace was placed on an individualized education plan, but Keane said the interventions didn't work.
"They didn't want to recognize the dyslexia problem," Keane said of her daughter, who's now in fifth grade.
Dyslexics struggle with the mechanics of language and are unable to make the connections needed to decode words, according to advocates.
Keane and a group of about 20 other local parents have joined a burgeoning national movement—Decoding Dyslexia—which launched last year in New Jersey and has spread to 38 states. The mission is to pass legislation to secure more services for dyslexia and raise awareness of the learning disability, and a few Illinois legislators have joined the cause.
State Rep. JoAnn Osmond, a Gurnee Republican, and state Rep. Patricia Bellock, a Westmont Republican, filed a bill Oct. 15 requiring public schools provide screenings for kindergarteners who exhibit signs of dyslexia.
"According to my bill, at this point, every child would be checked in kindergarten if there are indications they might be dyslexic," Osmond said, admitting she was unsure what funding would be needed to implement the programs required through the bill.
State Sen. Melinda Bush, a Grayslake Democrat, is expected to soon introduce a resolution declaring the first week of December "Dyslexia Awareness Week" in Illinois.
In January, Bush said, she's also hoping to propose legislation to mandate school districts test students early for dyslexia.
"There's not enough being done. I think there is a problem and I think we can do a better job of identifying dyslexia," said Bush, explaining she wants to make sure she doesn't create an unfunded mandate. "The important piece is making sure there's early detection."
Parents of children with dyslexia say if kids do not receive services early enough, they could fall behind for the rest of their school career.
"Schools don't recognize dyslexia. I don't really understand it," said Angela Baronello of Antioch. "It's not recognized in the school education code, even though it's the most common learning disability."
School officials say, however, they cannot diagnose dyslexia, and they can't provide services unless students are found eligible in one of the 13 categories of learning disabilities in Illinois.
"Before students can receive services, they have to be found eligible," said Ann Scully, director of student services for Antioch Community Consolidated School District 34.
If students are found eligible, an individualized education plan is developed.
"You're looking at present level of functioning. Then you're looking at specific needs. You're looking at strengths and deficits," Scully said. "It's individualized and student-specific."
Baronello said that about 20 percent of people in the United States have dyslexia—a language processing disorder, but the disability is often misunderstood and services are lacking.
Though Lucas showed signs in preschool of dyslexia -- speech delay, trouble learning letters, unhappy at school – he wasn't diagnosed until the end of first grade, his mother said. The Baronellos eventually sought out a neuropsychologist who determined Lucas was dyslexic.
"We were lucky his father and I were persistent. Many don't find out what is going on until third or fourth grade when they are so far behind the school can't ignore it anymore, or worse, they never find out," Baronello said.
The problem in Illinois, parents say, is dyslexia is not listed as a learning disability in the education code. Instead, dyslexia is included under "specific learning disability" for understanding and using language, said Elizabeth Hanselman, the assistant superintendent of specialized instruction, nutrition and wellness for the Illinois State Board of Education.
"It's not identified as a standalone disability," Hanselman said. "It's already counted in the category of specific learning disability."
But parents want more.
Unless dyslexia is listed as a distinct learning disability, they say, it is difficult to get services for children who are dyslexic but high-functioning in other areas, which advocates say is often the case.
"Their brain is fully capable of learning. This is a very high-functioning brain," said Lisa Stankus, director of Road to Learning, a Lake Zurich-based tutoring service specializing in helping children with dyslexia.
Stankus, a special education teacher, started the tutoring program in 2005 for students at Quentin Road Christian School in Lake Zurich. Because of demand in the area, the program was opened up a year later.
"These are incredibly bright people who have contributed to society for many, many years, but there is often a delay in their response when it comes to language," Stankus said.
Dyslexic children are often gifted in other areas such as math, art or athletics, but have difficulty decoding language, advocates say.
"A lot of times students will take tests and they are 140 in math and 98 in reading and the schools will say they're average and that they don't need to provide anything," said Ben Shifrin, member of the executive board for the International Dyslexia Association. "It's very limited because it doesn't fall under a handicap. Some people don't believe in dyslexia."
A regular education program in reading will not be effective, so special services are needed, Shifrin said. Early intervention can make a huge difference because children can be given learning accommodations, often using technology, and, eventually, the children will learn to adapt, he said.
"It's not cheating," Shifrin said. "It's leveling the playing field."
~~~
Disability tax could be on ballot next spring. Chicago Tribune (10/22)~(Stephanie K. Baer)
Kane County voters could see a tax increase request on next spring's ballot that would generate about $12 million annually for services for the developmentally disabled.
Advocates are working to educate residents about the need for the money, while opponents say the community cannot afford more taxes.
The proposal would tax property at 0.1 percent of its assessed value, and the money would be distributed by a disability board, made up of people from throughout the county, that would hire agencies to support independent living, jobs, therapy, transportation and supportive care for those with development disabilities.
For the owner of a $182,000 house, the average tax increase would be about $55 a year.
"We're not insensitive to the fact that this is an additional cost, but we balance the additional cost with the enormous good that is done and the lives that are enriched and we say to ourselves that this is the right thing to do," said Patrick Flaherty, vice chair of the Association for Individual Development board of directors.
The campaign, "Show You Care Kane," has collected more than 34,000 signatures — almost two times the roughly 18,000 required to place the referendum on the ballot, said Lynn O'Shea, president and CEO for the association, a Fox Valley nonprofit that provides services to people with developmental disabilities. The group must still formally submit its signatures to the county and survive any possible challenges to them before the measure could appear on the spring 2014 local election ballot.
Last year, the association, along with several other organizations in the county, began collecting signatures after efforts to place the referendum on previous ballots through a county board vote failed.
Several years ago, the association recognized a need to establish a local funding source to provide services for people with developmental disabilities because of a decline in state and federal funding, Flaherty said.
Since then, advocates say, the need has only grown and will continue to grow.
The campaign estimates that special education programs in the county serve about 16,000 children and that about half of them will later in life need the types of services the referendum would fund.
"Kane County has, like many other counties in this state, an enormous unfunded and unmet need for services," Flaherty said. "The federal and state funding is declining and is erratic from year to year. There is no stable reliable source of funding that service providers can count on."
Allen Skillicorn, an East Dundee village trustee and spokesman for Kane Cares About Taxes, said the group has not officially come out against the referendum. But he opposes the tax because he thinks it would be an inefficient use of money in a county that already has some of the highest taxes in the nation.
"I just think that it's probably not the best use of our resources to increase property taxes," Skillicorn said.
He cited a report by the nonpartisan, nonprofit Tax Foundation that found the county's property taxes are 30th highest in the nation.
"I'm not against helping people, but it doesn't seem appropriate to add another layer of government," Skillicorn said. "Even though I am sympathetic and compassionate to people with disabilities, I'm also sympathetic and compassionate to people who can't afford to stay in their homes."
Skillicorn said that instead efforts should go toward lobbying the state to change the tax code.
But that's an unrealistic goal, supporters of the referendum say.
"Illinois just doesn't have the resources to do it," St. Charles District 303 board member Corinne Pierog, who is a member of the campaign's Community Leadership Team.
More than 1,000 Kane County residents are currently on the waiting list for state's Prioritization for Urgency of Need for Services, a database of individuals with developmental disabilities who are connected to services when funding is available, according to the state Department of Human Services website.
Flaherty said thousands more aren't even on the state's radar.
"We don't want to be in a county in which we warehouse people with disabilities," Flaherty said. "We want to have services and facilities and opportunities that give people with disabilities a chance to live a life of dignity and purpose and that's our responsibility as a local community to do that."
sbaer@tribune.com
Twitter @skbaer
Twitter @skbaer
~~~
INTERNATIONAL
Mental Health Education Still Gets a Fail. Huffington Post (10/21)~Susan Inman)
All kinds of well-meaning mental health messages are now offered during October. Nevertheless, too many parents don't realize that this next year is going to bring terrible news into their lives. Almost 4 per cent of the population develops schizophrenia or bipolar disorder and these disorders mostly appear in youth and young adults.
Because these disorders usually throw families into chaos, parents deserve to know much more about these illnesses than they are learning during any of the current mental health campaigns. They need to see educational materials about the signs of psychosis and information about the early psychosis intervention programs that can offer the quickest access to necessary services.
The trend in mental illness education is to emphasize the stories of people who have recovered a good quality of life. These are important messages that were ignored for too long and are one of the best contributions of the Recovery Movement, a social movement that increasingly dominates mental health policy. Unfortunately, many aspects of this movement, like not educating the public about what is known about mental illnesses from a science-based perspective, make recovery more difficult.
Even though official education campaigns in October haven't told the public what they need to know about psychotic disorders, the media increasingly is producing very useful messages. The Vancouver Province, for instance, ran the kind of story that more newspapers are covering; "Family Fury Over Mental Health Care" describes the outrageous mishandling of the treatment of a man with bipolar disorder and an addiction.
Bloggers coping with severe mental illnesses also provide valuable information. One of the most popular in North America is Natasha Tracy who lives with bipolar disorder. Natasha responded to trends in mental illness awareness campaigns by writing that:
... it's our job not to whitewash mental illness. It's our job to stand up for it, warts and all... true mental illness awareness means educating about, and acknowledging, all of it.
Even television dramas are becoming legitimate sources of useful information for the public. The CBC's series Cracked focuses on a police officer and a psychiatrist working together to solve crimes related to mental illness. In their recent episode "The Valley," many key issues for families coping with schizophrenia were examined.
The parents can't get their ill son's caseworker to communicate with them. He stops taking medications, becomes very psychotic, ends up homeless and victimized, and eventually kills himself. He leaves behind a deeply caring family who are devastated by their son's illness and the limits imposed on them as they tried to help.
One of the best educational events of the month was on CBS's 60 Minutes. "Imminent Danger" exposes the disastrous consequences of the misguided mental health policies that have dominated the U.S. mental health system in recent decades. These demedicalized policies emanate from the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) whose slogan actually proclaims that "Prevention is Possible." Neuroscientists do not say that schizophrenia and bipolar disorder can be prevented.
The title "Imminent Danger" refers to the overly strict standards that SAMHSA has supported which limit the role of involuntary treatment in responding to severely psychotic people. SAMHSA and the numerous like-minded groups its billions of dollars have nurtured never acknowledge the reality of anosognosia, the brain based inability of most psychotic people to understand that they are ill.
SAMHSA's policies have led to the catastrophic proliferation of people with untreated mental illnesses ending up imprisoned. It's this tormented population that 60 Minutes is focusing on.
The public might expect the 60 Minutes expose to be heralded by the numerous national groups claiming to represent the best interests of people with mental illnesses. They will discover, instead, that a large coalition of these groups banded together to castigate CBS for stigmatizing people with mental illness. They are insisting on a program focused on people who are doing well.
Family caregivers may wish to avoid the messy issues inherent in mental health policies. However, both families in the U.S. and Canada will soon discover they need to understand the ideas influencing mental health care. Internationally recognized research psychiatrist Fuller Torrey, who is profiled in the 60 Minutes segment, has written a new book, American Psychosis, How the Federal Government Destroyed the Mental Illness Treatment System. Not only does it trace the development of the U.S. mental health system that seems to deny the existence of severe mental illnesses, but it offers ways out of the current chaos.
Families need appropriate education and support to handle the arduous challenges they will endure. However, they will have to confront many mental health clinicians who have never had science-based training on these illnesses since graduate programs have been allowed to avoid updating their curriculum.
Unjustified family blaming remains rampant in mental health services. One of the dirtiest secrets about severe mental illnesses is that families are expected to provide the care that is needed while, at the same time, the mental health system limits their ability to provide this care.
The good news is that new resources are emerging. The Mental Health Commission of Canada released new guidelines for the mental health system to use to support family involvement. These guidelines make it very clear that the system needs to share crucial information that it often withholds from family caregivers.
Recognition of the need for collaborating with families was evident during a recent landmark event held by Vancouver Coastal Health (VCH) Authority. Even though the BC Mental Health Act has always clearly allowed for sharing confidential information in order to provide continuity of care, this hasn't been occurring. At its recent staff training event, VCH emphasized that family caregivers must receive the information they need.
The families who this year will discover the agony of psychotic illnesses need to know that genuine help is available. The path to that help is just much more treacherous than it should be.
~~~
EMPLOYMENT
September Employment Results for People with Disabilities Optimistic for the First Time Since May. U.S. Department of Labor (10/22)
Table A-6. Employment status of the civilian population by sex, age, and disability status, not seasonally adjusted
HOUSEHOLD DATA
Table A-6. Employment status of the civilian population by sex, age, and disability status, not seasonally adjusted
[Numbers in thousands]
Employment status, sex, and age
Persons with a disability
Persons with no disability
Sept.
2012
Sept.
2013
Sept.
2012
Sept.
2013
TOTAL, 16 years and over
Civilian noninstitutional population
28,776
28,701
214,996
217,467
Civilian labor force
6,060
6,005
149,015
149,531
Participation rate
21.1
20.9
69.3
68.8
Employed
5,241
5,218
138,093
139,432
Employment-population ratio
18.2
18.2
64.2
64.1
Unemployed
819
786
10,922
10,098
Unemployment rate
13.5
13.1
7.3
6.8
Not in labor force
22,717
22,696
65,981
67,936
Men, 16 to 64 years
Civilian labor force
2,717
2,720
75,186
75,531
Participation rate
35.4
35.3
82.3
82.3
Employed
2,327
2,330
69,632
70,135
Employment-population ratio
30.3
30.2
76.3
76.4
Unemployed
389
390
5,554
5,396
Unemployment rate
14.3
14.4
7.4
7.1
Not in labor force
4,959
4,989
16,120
16,231
Women, 16 to 64 years
Civilian labor force
2,330
2,349
66,965
66,738
Participation rate
29.7
29.7
70.7
70.2
Employed
1,973
2,012
61,997
62,395
Employment-population ratio
25.1
25.5
65.5
65.6
Unemployed
356
337
4,968
4,343
Unemployment rate
15.3
14.4
7.4
6.5
Not in labor force
5,523
5,551
27,695
28,349
Both sexes, 65 years and over
Civilian labor force
1,014
936
6,864
7,261
Participation rate
7.7
7.1
23.6
23.7
Employed
940
877
6,464
6,902
Employment-population ratio
7.1
6.7
22.3
22.5
Unemployed
74
59
400
359
Unemployment rate
7.3
6.3
5.8
4.9
Not in labor force
12,234
12,156
22,166
23,357
NOTE: A person with a disability has at least one of the following conditions: is deaf or has serious difficulty hearing; is blind or has serious difficulty seeing even when wearing glasses; has serious difficulty concentrating, remembering, or making decisions because of a physical, mental, or emotional condition; has serious difficulty walking or climbing stairs; has difficulty dressing or bathing; or has difficulty doing errands alone such as visiting a doctor's office or shopping because of a physical, mental, or emotional condition. Updated population controls are introduced annually with the release of January data.
http://www.bls.gov/news.release/empsit.t06.htm
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SPORTS
Running blind... with a little help. Boeing (10/22)~(Katie Perdaris)
It was a beautiful fall morning in Washington, D.C. for the 35,000 runners that gathered to run the Army Ten-Miler, but one runner didn’t see the sun shining, or the path he was running.
Thomas Panek went blind in his early 20s, and while some people might give up on extracurricular activities, Thomas wanted to prove he can still enjoy the things he loves to do.
“I didn’t think I could do it,” said Thomas. “Some people, they think that people who are blind, or wounded warriors, can’t get out there, but I’ll tell you the first thing that this does is it motivates you. It gets you out there; it gets you back on your feet.”
Thomas, who works at the National Industries for the Blind, helps find jobs for the blind, and is a supplier to Boeing. It’s this relationship with Boeing that led him to finding his race partner, Nick Abramczyk. Nick, a Boeing employee, offered to guide Thomas through the race. They trained using an elastic tether, and code words for direction.
“You know, when you come up to take a turn, it’s not just a right turn. Maybe it’s a 90-degree turn, 70-degree turn,” said Nick. “It’s ‘copy 3-2-1 turn 90 right, copy 3-2-1 turn 90 left,’” added Thomas.
While the process sounds difficult, Nick said Thomas is very easy to work with. “You don’t even realize you’re running with somebody who has a visual impairment,” said Nick.
The pair has become good friends, and with a couple more races coming up this year they have no intention of slowing down. In fact, they hope to qualify to run in the 2014 Boston Marathon.
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CULTURE/MEDIA
During Down Syndrome Awareness Month, These 7 People Remind Us That That Labels Don't Matter. Huffington Post (10/22)~(Eleanor Goldberg)
During Down Syndrome Awareness Month, advocates push even harder to improve inclusiveness, and show just how much potential people living with the condition have. But it’s really the brave unstoppable people with Down syndrome, the ones who keep setting the bar higher and hitting each of their goals, who are showing the world how little they care about labels and how much they can achieve.
1. Artist whose painting is hanging in Will and Kate’s home.
Will and Kate typically shy away from accepting gifts, but they couldn’t turn down a baby present gifted by artist Tazia Fawley, TODAY reported last month. The 43-year-old painter who has Down syndrome, spent six months crafting a bright children’s classic and she, along with the advocacy community, was thrilled when the royal couple accepted her piece.
“In England, there always has been a stigma attached to [Down syndrome], and now that is washed away by the fact that the Duke and Duchess have accepted that painting,’’ Suzie Moffat, director of Heart & Sold, an organization that promotes artists with Down syndrome, told TODAY.
2. Homecoming couple who made history.
Semone Adkins and Travjuan “Bubba” Hunter made history this month when they were the first teens with Down syndrome to ever be crowned homecoming king and queen in Central Florida, the Orlando Sentinel reported. Students at West Orange High School, located just outside of Orlando, said they chose the pair for their bubbly personalities and community members donated their wardrobes, accessories and flashy cars so that the couple could revel in a ceremony fit for royalty.
3. Athlete who proved he’s a superstar.
Owen Groesser hadn’t played all season, but when the eighth grader's coach let the basketball player (who usually serves as team manager) hit the court, he effortlessly sunk two three-pointers, WXYZ-7 originally reported. It was an incredibly inspiring moment that eventually landed him on Sportscenter where he shared his story with the world.
4. Baby who taught her dad she’s perfect just the way she is.
When Heath White –- an avid athlete, perfect student, and FBI agent –- learned that he and his wife were having a baby with Down syndrome, he was devastated, and determined to convince his wife to have an abortion. But she refused and soon after Paisley was born, White quickly realized that his daughter is “just like any other kid," he said in an ESPN E:60 documentary. He now started running competitively with his daughter to let the world see just how proud he is of her.
5. Boy who’s learning to make friends, even if it doesn’t come easy.
Hernán, from Buenos Aires, is painfully shy, to the point that he shirks physical contact. But this toddler clearly is already working on overcoming his fears. Last month, a heartwarming viral video of little Hernan getting used to a sweet dog proved just that -- especially at the 3:12 mark when he reaches out and gives the pooch a hug.
6. Beautiful teen who nabbed a modeling shoot.
Like most teens her age, Karrie Brown, 17, has always dreamed of the glitz and glamour that comes with modeling, but this beautiful girl actually made it happen, KMOV reported. Brown and her mom set up a Facebook support page outlining the teen’s goals to model for Wet Seal and once it reached 10,000 likes, the company flew her down to California on an all-expense paid trip and treated her to a professional shoot.
7. Teen who got a sweet ride from the pope.
When Pope Francis noticed Alberto di Tullio, a 17-year-old with Down syndrome in the crowd at Vatican City, the religious leader stunned onlookers when he went up to boy, gave him a hug and fulfilled his wish to ride the popemobile. "The pope saw him, embraced him,” di Tullio’s emotional dad told the Associated Press. “Then Alberto pointed to the car, and so he brought him up!"
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RESEARCH/STUDIES
Epilepsy opens a new window into brain function. SFGate (10/22)~(Kristen V. Brown)
Arguably one of the greatest contributions to modern day neuroscience was made in 1953 by Henry Molaison, a 27-year-old man who suffered from debilitating epilepsy.
The summer of that year, a surgeon in Hartford, Conn., removed two slivers of Molaison's brain, an attempt to quell the seizures. The seizures subsided, but Molaison was left lacking the ability to record new memories, a case of severe anterograde amnesia that revolutionized our understanding of how memory works and helped establish the science of it.
Epilepsy and patients like Molaison have frequently been at the center of breakthroughs in understanding the mysteries of the brain. It is a window that has allowed researchers unparalleled access to unearth the ways in which the structure and functions of the brain inform its psychological processes.
One of the most common neurological disorders, epilepsy is really a large number of syndromes, all characterized by recurrent seizures. Sometimes medication can keep a condition under control, other times surgery is necessary, removing the brain tissue or lesions responsible for seizing.
Surgery is where epilepsy provides science with unique entry into the brain.
Accidental discovery
Much has been gleaned - often, as in the case of Molaison, unwittingly - from actually cutting into the brain in the course of treatment.
The studies of the brain in preparation for surgery, though, have also been crucial to research.
"If you trace back most major findings, it all ends up beginning with patients with epilepsy," said Dr. Josef Parvizi, a Stanford neurologist who specializes in the disorder.
In a paper published last week in Nature Communications, Parvizi was among a team of Stanford doctors to uncover the latest nuances of brain functionality. The study utilized a technique increasingly employed by doctors called intracranial electrophysiology to detect the precise areas of the brain in which seizures begin.
Doctors implant dozens of tiny electrodes under the skull, directly onto a patient's brain. The level of functional detail doctors receive as a result is unmatched.
Parvizi and company were able to pinpoint the pattern of brain activity that occurs when people think quantitatively.
With the technique, researchers can measure the ultrafast and extremely subtle electrical reactions of the brain's neurons as they fire away at an extremely high resolution. So, when, for example, a patient thinks about numbers, researchers can see exactly which areas of the brain are stimulated.
Other methods of recording brain activity, such as functional magnetic resonance imaging or electroencephalography, along the surface of the scalp, don't provide the same level of detail, though those methods have also yielded important discoveries on their own.
Epilepsy patients
Their research was performed on the brains of three patient volunteers already under evaluation for surgical treatment of epilepsy. After all, it is not without legitimate occasion that scientists endeavor to slice into someone's skull.
Parvizi's team took their research one step further, recording patients while they were conscious and going about their business in the days in the hospital prior to surgery.
"Monitoring patients with epilepsy through intracranial recording really is the only direct window we have into the conscious human mind," he said.
An understanding of the brain's activity pattern when engaged in quantitative thought might seem like a relatively small discovery, but such discoveries add up and begin to provide a more complete picture of how our mind is linked to the brain's physical structure.
Another Parvizi study of epilepsy patients published last fall uncovered two nerve clusters in the brain that are critical to perceiving faces. At UCSF, a study published in February mapped the parts of the brain which control lips, tongue, jaw and larynx as a person speaks and showed how those parts of the brain work together during speech.
Behind the research
The motivation for understanding these brain functionalities is to eventually find new ways to fix them when they stop working. For example, the UCSF study paved the way for the potential development of computer-brain interfaces to allow for artificial speech or development of new treatments for varying speech disorders. Parvizi's facial recognition findings could lead to methods of treating prosopagnosia, or face blindness, a condition in which a person is unable to distinguish one face from another.
An increase in the use of intracranial recording - a technique that many say is still vastly underutilized - has been at least in part responsible for a rise in the frequency of such breakthroughs in recent years.
"This is really a window into how your brain is thinking, perceiving," said Dr. Bob Knight, a Berkeley neuroscientist. "In the past 10 to 15 years, its use as a research tool has exploded."
These breakthroughs, said Knight, are in a way just a welcome side effect of treating patients.
"The whole impetus is clinical care, none of the impetus is to figure out how the brain works."
Hippocrates was among the first to assert that epilepsy was a disorder of the brain, though for centuries afterward it was still often treated as a spiritual or mental problem.
John Hughlings Jackson, an influential neurologist at the turn of the last century, predicted the disease would provide keys in understanding and studying the mind. He observed a patient's seizure, noting that it seemed to travel from one part of the body to another. He hypothesized that the disease was affecting different parts of the brain, which in turn affected different parts of the body. It was among the first clues that different parts of the brain perform different functions.
Mapping the brain
In the 1940s and 1950s, Wilder Penfield and Herbert Jasper began to create the first maps of the brain's sensory and motor cortices, after treating epilepsy patients by destroying nerve cells in portions of the brain where seizures seemed to begin.
"Epilepsy has always provided a very unique window into brain function," said Knight.
Gordy Slack, a journalist who is writing a book on the role epilepsy has played in the history of neuroscience, said the disease has perhaps not received due credit for its role in our knowledge of the mind.
"It's under-studied as a disease itself, but its contributions are also under-celebrated," said Slack, whose son had epilepsy. Patients with epilepsy, he said, "should be star players in the telling of the story of neuroscience."
If there ever was such a star, it was certainly Henry Molaison.
When Molaison awoke from surgery in 1953, he was unable to identify his nurses. He couldn't remember his way home or really anything after his surgery on in the year or two preceding it. His case debunked many of the then-existing theories about memory.
At the time, scientists believed that memories existed throughout the brain, independent of any one region. When, during his surgery, researchers removed a portion of Molaison's hippocampus, in the medial temporal lobe, they accidentally unearthed the region's key function in memory.
Molaison's intellect and personality were largely intact, as were most of his memories from before the surgery. He was permanently stuck in the present tense, as Suzanne Corkin described in her book about Molaison.
Molaison was known in scientific literature as only HM until his death in 2008. His brain is now frozen in slices at UC San Diego's Brain Observatory. Decades later, scientists are still studying it, examining and re-examining the brain of the epileptic man who showed science just what it is to remember.
Kristen V. Brown is a San Francisco Chronicle staff writer. E-mail: kbrown@sfchronicle.com Twitter: @kristenvbrown
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American Association of People with Disabilities
2013 H Street NW, 5th Floor
2013 H Street NW, 5th Floor
Washington, DC 20006 United States
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