In Britain, Radio 4 discovers the untold history of disability in 10-part series

From the BBC:

In a new ten-part radio series, journalist Peter White (pictured) uncovers new historical sources revealing what life was like for those with physical disabilities in the 18th and 19th centuries. 

Disability: A New History, starting on BBC Radio 4 on 27 May, is the first major series to explore the history of disability before the 20th century. It draws on a wealth of new research by historians across the country from sources including letters, diaries, advertisements, even jokes – all of which reveal what daily life was like for those with disabilities. This was an age before political correctness, and although some of the language used is robust, attitudes were often surprisingly compassionate.

The series sets out to challenge modern-day attitudes to disability, and the archive sources provide direct access to voices from the past. Throughout the series a rich variety of voices is heard: a man who complains he is the ‘only dwarf in Liverpool’; deaf children writing home from institutions; a wounded soldier, struggling to walk with a wooden leg; a society beauty disfigured by smallpox; ‘freaks’ who exploited their extraordinary bodies on the streets of London – and made a fortune. Dr David Turner from Swansea University is the academic advisor to the series and an expert in disability history. He provides academic insights throughout, in addition to a number of historians from across the country.

Elizabeth Burke, Producer, says: “The great thing about radio is that we can bring these voices to life, and give listeners a chance to hear first-hand sources – many of which have not yet been published. Some of these accounts are very funny, some are moving and inspiring. This is cutting-edge historical research – it amounts almost to a new historical movement. We wanted to explore what daily life was like for people with physical disabilities, but also to look beyond that, to ideas of beauty and deformity, wider concepts of what it means to be ‘able-bodied’ - which had an impact on real people, then as now."

For presenter Peter White there is a strong and genuine sense of personal discovery. As a blind man he has always wondered, where were people like him in the past? “I never realised disabled people had a history. History was what happened to everyone else,” White says.

Gwyneth Williams, Controller BBC Radio 4 and Radio 4 Extra, says: “I am so pleased that Peter White, one of our most distinguished presenters, has decided to take up this unexplored area of history. I am looking forward to a challenging and original series which adds to Radio 4’s proud history coverage.”

Notes for Editors
Disability: A New History runs for 10 consecutive weekdays at 1.45pm over a two-week period from Monday 27 May, with an hour-long omnibus edition on Friday nights at 8pm. It was commissioned by Jane Ellison for BBC Radio 4. The producer is Elizabeth Burke for Loftus.

Academic Advisor: Dr David Turner of Swansea University, who recently published the first book-length study of physical disability in 18th-century England, Disability In Eighteenth-Century England: Imagining Physical Impairment.

Historians featured: David Turner, Stephen King, Joanna Bourke , Judith Hawley, Amanda Vickery, Tim Hitchcock, Julie Anderson, Irina Metzler, Naomi Baker, Chris Mounsey, Vivienne Richmond, Caroline Nielsen, Mike Mantin, Selina Mills.

Actors bringing life to the archived first-hand accounts: Gerard McDermott, Euan Bailey, Emily Bevan, Jonathan Keeble, Madeleine Brolly.

New closed-captioning glasses help Deaf people go out to movies

From NPR:

There will be a special attraction for deaf people in theaters nationwide soon. By the end of this month, Regal Cinemas plans to have distributed closed-captioning glasses to more than 6,000 theaters across the country.

Sony Entertainment Access Glasses are sort of like 3-D glasses, but for captioning. The captions are projected onto the glasses and appear to float about 10 feet in front of the user. They also come with audio tracks that describe the action on the screen for blind people, or they can boost the audio levels of the movie for those who are hard of hearing.

This is a big moment for the deaf, many of whom haven't been to the movies in a long time. Captioned screenings are few and far between, and current personal captioning devices that fit inside a cup holder with a screen attached are bulky, display the text out of their line of vision to the screen, and distract the other patrons.

Randy Smith Jr., the chief executive officer for Regal Cinemas, says he has worked for more than a decade to find a solution to this problem. He tells Arun Rath, host of weekends on All Things Considered, that it has been his goal since 1998 "to develop a technology that would allow accessibility to the deaf and blind for every show time, for every feature."

Luckily, he had his own "personal guinea pig" at home, he says, in the form of his deaf son, Ryan, now 23. Smith said that as the tech companies would send him new prototypes, he and Ryan would test it out at the movies together, with Ryan giving him feedback along the way.

"We'd do that until we got to a point that we felt it was comfortable enough," Smith says.

Smith says he couldn't put into words what it felt like to finally be at this point, but after announcing the new device, he received a letter from a parent. Smith said that letter described the feeling perfectly:

"I've attempted to enjoy a movie with my son so many times over the last 26 years, but to no avail. After watching a movie I would try to discuss it with him. The comments he would make would in no way relate to the plot of the movie and at one point he finally confessed that as he watched the screen, he simply made up the story in his head. He didn't really know what was going on. The fact that I can take my son to a movie when he visits at the end of June is literally bringing tears to my eyes. It would seem silly to most people but I would imagine you understand what it feels like."

Smith says he can't express it any better than that.

Disabled married couple fights to live together in NY group home

From the Asbury Park Press in N.J.:

PORT JEFFERSON, N.Y. — With the beaming smiles of newlyweds, Paul Forziano and Hava Samuels hold hands, exchange adoring glances and complete each other’s sentences. Their first wedding dance, he recalls, was to the song “Unchained ...” ‘’Melody,” she chimes in.

They spend their days together in the performing arts education center where they met. But every night, they must part ways. Forziano goes to his group home. His wife goes to hers.

The mentally disabled couple is not allowed to share a bedroom by the state-sanctioned nonprofits that run the group homes — a practice the newlyweds and their parents are now challenging in a federal civil rights lawsuit.

“We’re very sad when we leave each other,” Forziano says. “I want to live with my wife, because I love her.”

The couple had been considering marriage for three years before tying the knot last month, and they contend in their lawsuit that they were refused permission from their respective group homes to live together as husband and wife. The couple’s parents, also plaintiffs in the lawsuit, said they have been seeking a solution since 2010.

“It’s not something we wanted to do, it’s something we had to do,” said Bonnie Samuels, the mother of the bride.

The lawsuit contends Forziano’s facility refused because people requiring the services of a group home are by definition incapable of living as married people, and it says Samuels’ home refused because it believes she doesn’t have the mental capacity to consent to sex.

Legal experts are watching the case closely as a test of the Americans With Disabilities Act, which says, in part, that “a public entity shall make reasonable modifications in policies, practices, or procedures … to avoid discrimination on the basis of disability.” The group homes are licensed as nonprofits by the state and receive Medicaid funding on behalf of their clients.

“This is a case that is moving into uncharted territory,” says George Washington University law professor Jonathan Turley. “If a state licenses the couple to be married, they are afforded all of the protections and privileges of marriage. The most fundamental right is to be able to live together as a married couple.”

 The couple’s attorney, Martin Coleman, says he has not come across any similar court cases. “What the group homes are saying is that for this class of people, you shouldn’t be married. … What point of intellectual disability is too low for someone to be married?”

Sara Gelser, an Oregon state legislator and member of the National Council on Disability board of directors, says Americans have increasingly come to recognize the rights of the disabled to choose to live their own lives, and marriage and sex is part of that.

She says the couple’s sex life is nobody’s business.

“No one has a right to tell an adult what they can do,” Gelser says. “Sex is a healthy and full part of the human experience. I know it makes some people uncomfortable to think people with intellectual disabilities are engaging in sexual relations, but I don’t understand that.”

A spokeswoman for the Catholic Health Systems, which runs the Maryhaven Center of Hope, has declined to comment, citing pending litigation. Maryhaven has 2,000 clients, ranging in age from 5 to 80, in facilities across Long Island. The facility in Manorville where Samuels lives is for women only.

David Arntsen, attorney for the Independent Group Home Living program in Manorville, where Forziano lives, says that it doesn’t have facilities for married residents and that there is no specific legal requirement forcing the home to house them. The program’s residences have between three and 12 men and women; the home where Forziano lives is coed, according to his attorney.

The lawsuit cites a letter from the director of program services at Independent Group Home Living, saying its homes “are not staffed or designed to house and supervise married couples or assist married couples with the dynamics of their relationships, sexual or otherwise.”

Also named in the lawsuit is the state Office of Persons With Developmental Disabilities, which the couple claims sided with the agencies in refusing to accommodate their wishes and has not done enough to find a solution. The office has declined to comment on the lawsuit.

 Experts say it is difficult to estimate how many mentally disabled people are married, since states ask no questions about a person’s mental capacity on marriage licenses.

Tiffany Portzer, a spokeswoman for the state developmental disabilities office, says the agency does not keep data on the marital status of its clients. “I can tell you that we know it’s a small minority of everyone in a group home, she says.

The couple’s parents say they have reached out to other state-certified group homes to see if they had space. They were told that although other facilities welcome married couples, nothing was available anytime soon, according to the lawsuit. Their attorney says the couple needs to live near their parents on eastern Long Island, as well as the Maryhaven Day Program, which each has attended for years.

Forziano, 30, is classified in the mild to moderate range of intellectual functioning, with recent IQ scores of 50 and 58. He has limited reading and writing skills and cannot manage money.

Samuels, 36, is in the moderate range of intellectual functioning, with recent IQ scores of 50 and 44. She has a significant expressive language disability, which can make it difficult sometimes for others to understand her.

The Social Security Administration offers disability benefits when a person’s IQ is below 70.

The couple met several years ago while attending the performing arts education program for mentally disabled adults, which teaches the basics of staging and set design, and offers singing and acting lessons.

“She’s very beautiful and she helps me,” Forziano says of his new bride.

Samuels says she fell for her future husband because he was funny; she particularly liked his “knock-knock” jokes.

But her eyes begin to well up with tears when asked about her current living situation. “I’m not happy,” she says. “We live apart.”

Bonnie Samuels says she never envisioned her daughter would ever be married, let alone become embroiled in a court fight over it.

“It does make me very angry,” she says, “that people say they want the best and the most for these individuals, or want them to have the type of life that they would like to have and let them grow as much as they can, and yet they’re being told no.”

Today's life with Down syndrome is full of possibilities

From Liz Szabo at USA Today:

Tim Norton was devastated when his daughter was diagnosed with Down syndrome shortly after her birth in 2006.

He envisioned her growing up tragically disabled. The years ahead seemed filled with darkness.

A chance encounter on a ski slope, just a few months after his daughter was born, changed Norton's outlook on Down syndrome and the prospects for his daughter's happiness.

While skiing near his home in Massachusetts, a gifted teenage skier with Down syndrome, Melissa Joy Reilly (pictured), glided past him at the crest of a hill.

Norton had noticed Reilly earlier in the day but said nothing.

"Melissa stopped in front of me and said, 'Hello, how are you?' " says Norton, of Westford, Mass. "I said, 'Great. What a great night to be skiing.' "

And, just like that, Norton's life was changed.

"Without her even knowing it, without her even trying — it was quite remarkable — I got just the positive lift that I needed," says Norton, whose daughter, Margaret, is now 7.

"She opened my eyes to what the possibilities could be for my daughter," says Norton, a ski instructor. "It was like, 'Wow, this isn't a big black hole. This is a girl who can walk and talk and ski.' "

Like Norton, many people are surprised to learn of the dramatic improvements in health and quality of life for children and adults with Down syndrome.

Advocates for people with Down syndrome feel a new urgency to spread the word about these advances, as more women undergo prenatal tests for Down syndrome and other genetic conditions.

The lives of the 250,000 Americans with Down syndrome today are radically different than a generation ago, says Brian Skotko, co-director of the Down syndrome program at Massachusetts General Hospital.

People with Down syndrome now live to an average of 60 years, according to the national society. Just a generation ago, they lived to an average of only 25.

Many graduate high school. Some take college classes. Some get married. About one in five has a job, says pediatrician Kathryn Ostermaier, medical director of the Texas Children's Hospital Down Syndrome Clinic.

On May 5, 36-year-old named Karen Gaffney will receive an honorary doctorate from Oregon's University of Portland. University officials believe she may be the first person with Down syndrome to receive such a degree.

And the best may be yet to come, Skotko says. Thanks to early intervention, better therapies and educational opportunities, the generation of children with Down syndrome today may be the most accomplished ever, he says.

In March, a 15-year-old Oregon boy became one of the first people with Down syndrome to climb to a base camp on Mount Everest — a height of 17,600 feet.

Research by Skotko and others finds that life with Down syndrome is far happier — for parents, siblings and children themselves — than most imagine.

One of Skotko's studies showed that among more than 2,000 parents on the mailing lists of Down syndrome organizations, only 4% of parents regretted having a child with the condition.

Nearly 99% of people with Down syndrome say they're happy with their lives, and 96% say they like how they look, Skotko's survey found. Among siblings, 88% say their brother or sister with Down syndrome has made them a better person. There's a chance that these surveys paint an overly sunny picture, Skotko says, because people who belong to Down syndrome groups may be better off than those who lack this connection.

Advances in Down syndrome "need to be a part of prenatal counseling," says Ostermaier, an assistant professor at Baylor College of Medicine. "As physicians, we're supposed to give people accurate information so they can make informed decisions."

Children with Down syndrome do face additional health challenges. They have a greater risk of respiratory problems, certain rare leukemias and are more likely to need surgery to correct bowel and colon problems.

About half of babies with Down syndrome are born with congenital heart defects. In the past, many died at birth. Today, surgeons can repair heart defects.

Children with Down syndrome today also can benefit from a variety of early interventions, she says. These include: physical therapy; occupational therapy; speech and language therapy; and feeding and swallowing therapy, to assist with problems caused by low muscle tone.

Because babies with Down syndrome tend to be "visual learners," they can learn to communicate with sign language months or years before they master speech, Ostermaier says. Boston-area mom Melissa Coe is already teaching her daughter, 14-month-old Lily, to signs words such as "father."

Specialized preschools also can help kids with Down syndrome make the transition to a regular kindergarten class, Ostermaier says.

New therapies may one day help alleviate some of the symptoms of Down syndrome, such as intellectual impairment, Ostermaier says. Preliminary clinical trials are now being done with drugs designed to improve memory and learning.

Reilly, now 26, illustrates what people with Down syndrome can accomplish when allowed to reach their full potential, Skotko says.

She remains an avid skier. In February, Reilly won a silver medal in the slalom competition at the Special Olympics World Winter Games in South Korea.

She often accompanies Skotko as he teaches doctors and medical students about Down syndrome.
Skotko says even doctors often know relatively little about Down syndrome. Surveys show that medical students and residents get little training on the condition.

It's important, Skotko says, for people with Down syndrome to tell their own stories.

Skotko, whose sister has Down syndrome, credits her with teaching him lessons about patience, kindness and perseverance.

While learning to ride a bicycle was easy for him, Skotko says it took his sister three summers.

"She is a life coach for all of us in the family," Skotko says. "She has taught us so many life lessons about how to be patient when the world wants the answer now, how to keep on going when others may quit."

Reilly, who lives with her parents, is more active than most Americans: swimming, bicycling, even kayaking in Alaska.

She volunteers as a teacher's aide once a month. And she volunteers for a state senator one day a week, taking the train into Boston by herself. With her experience handling mailings, making deliveries and answering phones, Reilly is hoping to land a paid, part-time job with the senator this spring.

"I love everything" about her job, Reilly says. "I have a lot of friends at work. They all think of me as part of the office ...

"People with Down syndrome and other developmental disabilities are very can-do people," Reilly says. "They are very able."

Norton, who has gotten to know Reilly and her family well, says she continues to inspire him:
"I hope my daughter grows up to be just like her."

Nevada buses hundreds of mentally ill people to cities around country

Note from Media dis&dat: This practice has been around since the 1980s. When I was a journalist in Texas then, Texas sent mentally ill people from the state via Greyhound.

From The Sacramento Bee: In the picture, James Flavy Coy Brown, who suffers from mood disorders, is reunited with his daughter Shotzy Faith Harrison in Sacramento after a Nevada psychiatric hospital bused him to the capital with no medication or identification.

Read more here: http://www.sacbee.com/2013/04/14/5340078/nevada-buses-hundreds-of-mentally.html#storylink=cpy

Over the past five years, Nevada's primary state psychiatric hospital has put hundreds of mentally ill patients on Greyhound buses and sent them to cities and towns across America.

Since July 2008, Rawson-Neal Psychiatric Hospital in Las Vegas has transported more than 1,500 patients to other cities via Greyhound bus, sending at least one person to every state in the continental United States, according to a Bee review of bus receipts kept by Nevada's mental health division.

About a third of those patients were dispatched to California, including more than 200 to Los Angeles County, about 70 to San Diego County and 19 to the city of Sacramento.

In recent years, as Nevada has slashed funding for mental health services, the number of mentally ill patients being bused out of southern Nevada has steadily risen, growing 66 percent from 2009 to 2012.

During that same period, the hospital has dispersed those patients to an ever-increasing number of states.
By last year, Rawson-Neal bused out patients at a pace of well over one per day, shipping nearly 400 patients to a total of 176 cities and 45 states across the nation.

Nevada's approach to dispatching mentally ill patients has come under scrutiny since one of its clients turned up suicidal and confused at a Sacramento homeless services complex. James Flavy Coy Brown, who is 48 and suffers from a variety of mood disorders including schizophrenia, was discharged in February from Rawson-Neal to a Greyhound bus for Sacramento, a place he had never visited and where he knew no one.

The hospital sent him on the 15-hour bus ride without making arrangements for his treatment or housing in California; he arrived in Sacramento out of medication and without identification or access to his Social Security payments. He wound up in the UC Davis Medical Center's emergency room, where he lingered for three days until social workers were able to find him temporary housing.

Nevada mental health officials have acknowledged making mistakes in Brown's case, but have made no apologies for their policy of busing patients out of state. Las Vegas is an international destination and patients who become ill while in the city have a right to return home if they desire, the state's health officer, Dr. Tracey Green, told Nevada lawmakers during a hearing last month.

She and others insist that the vast majority of patients they are discharging to the Main Street bus station are mentally stable and have family members, treatment programs or both waiting for them at the end of their rides.

That was not true in Brown's case. His papers from Southern Nevada Adult Mental Health Services read: "Discharge to Greyhound bus station by taxi with 3 day supply of medication" and provided a vague suggestion for further treatment: "Follow up with medical doctor in California." Brown said staff at Rawson-Neal advised him to call 911 when he arrived in Sacramento.

Nevada Health and Human Services Director Michael Willden told lawmakers last month that while health officials "blew it" in their handling of Brown, an internal investigation found no pattern of misconduct.
But an investigation by the Nevada State Health Division documented several other instances from a small sampling of cases in February in which the state hospital violated written rules for safely discharging mentally ill patients.

Other apparent violations surfaced during The Bee's investigation.

At least two patients from the Nevada system arrived in San Francisco during the past year "without a plan, without a relative," said Jo Robinson, director of that city's Behavioral Health Services department.

"We're fine with taking people if they call and we make arrangements and make sure that everything is OK for the individual," Robinson said. "But a bus ticket with no contact, no clinic receptor, anything, it's really not appropriate."

Robinson said she viewed the practice as "patient dumping," and has reported it to federal authorities. "It's offensive to me that they would show this lack of care for a client," she said.

Practice called risky

Nevada mental health officials did not respond to repeated requests for phone interviews for this story, nor would they address a list of emailed questions about the origins of the busing policy and the safety protocols in place.

Southern Nevada Adult Mental Health Services, the agency that oversees Rawson-Neal, maintains detailed written policies for transporting patients "to their home communities," with the stated goal of providing more appropriate care by the most economical means possible.

The policy includes a special section on "Travel Nourishment Protocol," specifying the number of bottles of Ensure nutritional supplement the patient should receive for the bus trip – essentially six per day.
Staff members are supposed to fill out a "Client Transportation Request" form, which includes questions about whether the patient is willing to go, whether housing or shelter has been verified, and the cost of the trip.

The written policy calls for staff to confirm that a patient has housing or shelter available "and a support system to meet client at destination." They are to provide information about "mental health services available in the home community."

Interviews with health officials in California and numerous other states indicate Nevada's practices are unusual. None of the 10 state mental health agencies contacted by The Bee said that placing a psychiatric patient on a bus without support would be permissible. And none recalled being contacted by Rawson-Neal to make arrangements for a patient coming from Nevada.

In California, where most public mental health treatment is overseen at the county level, agencies contacted by The Bee said they rarely bus patients and that Nevada's practices seem out of step with the standard of care.

Several described the practice as risky, even if patients have someone waiting for them at the end of their journeys.

"Putting someone whose mental illness makes them unable to care for themselves alone on a bus for a long period of time could be absolutely disastrous," said Dorian Kittrell, executive director of the Sacramento County Mental Health Treatment Center.

Patients could suffer relapses during their trips and potentially harm themselves or other people, said Kittrell and others. They could become lost to the streets or commit crimes that land them in jail.

"The risk is just too great," said Dr. Marye Thomas, chief of behavioral health for Alameda County.

Southern Nevada Adult Mental Health Services has had an ongoing contract with Greyhound since July 2009, said bus company spokesman Timothy Stokes.

Stokes said he was unaware of any serious incidents involving mentally ill patients from Nevada. He said Greyhound has contracts with "a number" of hospitals around the country, but declined to identify them.

"We take it on good faith that the organization is going to make certain that patients are not a risk to themselves or others," he said.

Still, officials in several of California's largest counties said they rarely, if ever, bus patients out of state.
"We don't do it, we never will do it, and we haven't done it in recent memory, meaning at least 20 years," said David Wert, public information officer for San Bernardino County. Rawson-Neal has bused more than 40 patients to that county since July 2008.

Los Angeles County officials said they have not bused a single patient out of state during the past year, and when they have done so in the past they have supplied chaperones. In the past five years, L.A. County has received 213 people from the Nevada hospital, according to The Bee's review, more than any place in the country.

Likewise, in Riverside County, sending patients out of state "happens very infrequently upon request of the family," said Jerry Wengerd, head of the county's Department of Mental Health. "A staff member accompanies the client and it is usually by air." Nevada bused 20 patients to Riverside in the period reviewed.

Sacramento County bought bus tickets for five patients during the past year, Kittrell said. In all cases, he said, facility staff confirmed before patients departed that a family member or friend would meet them at their destinations, and provided referrals for treatment.

Organizations that advocate for mentally ill people said Nevada's busing numbers seem unjustifiably high.
DJ Jaffe, executive director of Mental Illness Policy Org., a nonprofit think tank, said his group often hears anecdotally about patients being "dumped" from one county to another.

"Discharging severely mentally ill patients inappropriately is policy in this country," Jaffe said. "But getting rid of them altogether by busing them out of state is, I think, rare. I am shocked by these figures. It seems to be almost routine in Nevada."

After California, Arizona has received the most patients by bus from Nevada, at more than 100 over the five years.

But Cory Nelson, acting deputy director for the Arizona Department of Health, cautioned against drawing conclusions about Nevada's practices based solely on number of bus tickets issued. In many cases, Nelson said, relatives could have agreed to house patients or made treatment arrangements before the clients left Las Vegas.

In rare cases, Nelson said, a hospital can find itself in a Catch-22 situation when a patient no longer needs to be in a hospital but refuses to cooperate with a discharge plan. "It kind of leaves a hospital in a tough situation," he said.

Still, the sheer number of patients bused from the Nevada hospital "does seem pretty high," he said.

'A tsunami situation'

Several people interviewed said the numbers might be explained in part by the unusual nature of Las Vegas.

"As the whole country no doubt knows, Vegas is a pretty unique place," said Dr. Lorin Scher, an emergency room psychiatrist with UC Davis Health System.

The city's entertainment and casino culture draws people from all over the world, Scher noted, including the mentally ill.

"Many bipolar patients impulsively fly across the country to Vegas during their manic phases and go on gambling binges," he said. "Vegas probably attracts more wandering schizophrenic people" who are attracted to the warm weather, lights and action, he added.

Read more here: http://www.sacbee.com/2013/04/14/5340078/nevada-buses-hundreds-of-mentally.html#storylink=cpy

"I am by no means defending their practices," he said. "It certainly gives cause for concern. But it's one possible explanation."

Stuart Ghertner, former director of Southern Nevada Adult Mental Health Services, cited other possible reasons.

He said Rawson-Neal has been under siege for years because of state budget cuts, a steady increase in poor people needing mental health services in the Las Vegas area and a revolving door of administrators.

He noted the city had a disproportionate number of people displaced by the housing and mortgage meltdown of a few years ago.

"The casino boom was over, people were losing their jobs and their homes. They were stressed and they wound up in a mental health crisis," Ghertner said.

Between 2009 and 2012, Nevada slashed spending on mental health services by 28 percent to address budget deficits, according to data collected by the National Alliance on Mental Illness. Even before those cuts, Nevada fell well below the national average in spending on mental health services: In 2009, it spent $64 per capita on such services compared with a national average of about $123, according to the study.

"You're looking at a tsunami situation," said Ghertner, a psychologist who resigned last year after five years as agency director. "There is more pressure to turn patients over faster, and fewer programs (in which) to place them. Perhaps busing them became the easier solution."

It also is cheaper, he noted. Southern Nevada Adult Mental Health Services spent a total of $205,000 putting patients on Greyhound buses during the past five years, according to The Bee analysis. The state hospital admits about 4,000 patients a year to its inpatient unit, and inpatient care runs around $500 per day per client, Ghertner said.

He said he was aware during his tenure that Rawson-Neal was busing patients out of state but that he thought the practice was rare.

At the time, "I had 800 employees and a $106 million budget," he said. Ghertner regularly reviewed numbers pertaining to admissions, length of stay and other issues at the hospital, but patient busing was never on his radar, he said.

"I'm embarrassed to say that this practice was going on to this degree under my leadership," he said. "I had no idea. It just never came up."

Ghertner said the state mental hospital has been under stress since it opened in 2006, turning over five hospital directors since that time. That instability has taken a toll, he said.

"This busing issue is a symptom that reflects that the care there is not quality care," he said. "Things clearly are being missed."

Willden, Nevada's Health and Human Services director, said during last month's legislative hearing that policies have been tightened and disciplinary actions taken to ensure that patients are discharged only after the hospital confirms care and treatment at their planned destinations. The hospital administrator, Chelsea Szklany, now must approve all bus discharges ordered by medical staff, he said.

"Southern Nevada Adult Mental Health Services is committed to providing quality mental health services to its patients," said spokeswoman Mary Woods in an emailed statement.

But investigations continue into the agency's practices.

Rawson-Neal could lose vital federal funding pending an ongoing probe by the federal Center for Medicare and Medicaid Services. California state Senate President Pro Tem Darrell Steinberg has written a letter expressing outrage to U.S. Secretary of Health and Human Services Kathleen Sebelius.

The hospital's discharge practices also have prompted a call for action by a member of the U.S. Commission on Civil Rights. Commissioner David Kladney called for a broad investigation by Nevada's governor and Legislature.

"As a Nevadan, I am ashamed that my state is failing in its duty toward the neediest residents," Kladney said. Nevada, he said, appears to be "simply hoping that other states will shoulder the responsibility."

Read more here: http://www.sacbee.com/2013/04/14/5340078/nevada-buses-hundreds-of-mentally.html#storylink=cpy

Issue of mental illness draws an A-list of talent to Lifetime project, "Call Me Crazy"

From USA Today:

For Academy Award-winning actress Octavia Spencer (pictured) and Golden Globe nominee Bryce Dallas Howard, who worked together on the hit 2011 film The Help, Lifetime's Call Me Crazy: A Five Film was a chance to collaborate again.

For Brittany Snow, Call Me Crazy was an opportunity to work with Spencer, Howard and other accomplished women including Jennifer Aniston — one of the project's executive producers — and Oscar winner Jennifer Hudson.

Still, the all-star ensemble cast isn't the only reason these actors have come together in Call Me Crazy, five interwoven stories that focus on mental illness and its impact on those it affects, their friends and families (Saturday, 8 ET/PT).

"Aside from the fact that I loved all the people involved as well as the message behind the film, this is very close to me, because it's about something that I felt I had some understanding of," says Howard. She went through what she calls "extreme clinical depression" after the birth of her first child.

"Being part of something that will help to shed light on the nature of depression, bipolar disorder, schizophrenia or post-traumatic stress disorder," says Howard, is "very moving to me."

The film's message, in part, says Spencer, is that "mental illness is non-discriminant. It crosses all racial categories, all socioeconomic levels, all educational levels, all genders.

"I just thought it would be best to be part of something that would enlighten people," Spencer says, "and show that people can live productive lives with the right medication and therapy."

Call Me Crazy is a follow-up to the Lifetime's 2011 original movie Five, whose cast included Patricia Clarkson, Rosario Dawson and Bob Newhart. With the focus on breast cancer, Five, like Crazy, told interconnected stories on a single subject. Directors of those five shorts included Aniston, Demi Moore and Alicia Keys.

Each of the Call Me Crazy stories is named for its title character, and the directors, like the actors, are stars in their own right.

• Lucy, directed by Howard, stars Snow as a law-school student struggling with schizophrenia. Spencer is her psychotherapist, and Jason Ritter is a friend she meets after being institutionalized.

• Grace, directed by Laura Dern, stars Sarah Hyland (Modern Family) as a teenager whose mother (Melissa Leo) is struggling with bipolar disorder.

• Allison, directed by Sharon Maguire (who directed Bridget Jones's Diary) continues Lucy's story as her younger sister Allison (Medium's Sofia Vassilieva) resents the attention Lucy receives from their parents (Jean Smart and Richard Gilliland).

• Eddie, directed by Helen Hunt, stars Lea Thompson as Julia, whose husband Eddie (Mitch Rouse) struggles with depression.

• And Maggie, directed by Ashley Judd, stars Jennifer Hudson as a war veteran struggling with post-traumatic stress disorder; Snow's Lucy also plays a key role in Crazy's final short.

"This film is so great because its not a PSA telling you about what to do and what the signs are," says Snow. "This is a film about people who are family and friends of ours, maybe even ourselves. It sheds some hope on a subject that isn't talked about that much."

The pieces show "what these people are going through and the strength that they have," says Snow, "but I also think people who have mental illness can watch and hopefully connect with these characters."

The film's primary message, says Spencer, is enlightenment.

"If we get one person to seek help. If we get one family to open their doors to a person who's afflicted and offer them solace and help, then we've done our job," says Spencer. "I hope that we somehow strike a chord and that people learn as much as they can about these illnesses."

Autistic Self-Advocacy Network launches "Listen Up," first of two PSA's created for Autism Acceptance Month

From ASAN:

Dear Friends,

We are thrilled to announce the launch of Listen Up, the first of two public service announcements that we've created for Autism Acceptance Month. Listen Up features Henry Frost, Amy Sequenzia, and Kevin Barrett telling the world that the Autistic community can speak for itself.

Listen Up is on YouTube right now. We encourage you to watch it, share it, and help us make it go viral. If you want to see Listen Up on television, you can email acceptance@autisticadvocacy.org or visit the Autism Acceptance Month website for detailed information and instructions.

Help us change the national conversation on autism from one that largely occurs without autistic people to a conversation that frames our voices as central. Acceptance is an action, as we've been saying all month, and now it's time for us to take action and reclaim our seat at the table.

We're very excited about Listen Up, about autism acceptance, and about the prospect of seeing our PSA aired on television and virally online. So listen up! Together, we can change the national conversation on autism!

Regards,

Ari Ne'eman

President

Autistic Self Advocacy Network

McDonald's pulls mental illness parody ad

From USA Today:

McDonald's is not lovin' it.

Following consumer complaints, a regional ad for its Big Mac that parodies mental illness -- featuring a familiar photo of a woman who appears to be crying with her head in her hand -- has been yanked by the fast-food giant from Massachusetts Bay Transportation Authority subway trains. The headline in the ad states: "You're not alone." But the small print underneath says, "Millions of people love the Big Mac."

Worst of all: The ad includes a toll-free phone number that connects consumers to McDonald's customer satisfaction line. A recording asks consumers if they want to share an "experience" that they had at a McDonald's restaurant.

"The worst possible situation is if someone in an emotional crisis were to see that image and call that number," says Bob Carolla, spokesman for the National Alliance on Mental Illness. "It would be a cruel mistake."

Mistake, indeed. The public relations blunder comes at a time other big-name brands have made similar PR miscues. A recent Ford ad in India depicted sexy women tied up in the back of a Ford Figo. Nabisco has received complaints about a Wheat Thins spot featuring a puppet who is so obsessed with the savory crackers that it must be tied in a straitjacket by mental health workers. And now this McDonald's ad, which appeared on subway trains in the Boston area.

One PR expert is baffled by the McDonald's ad. "This is honest-to-goodness God-awful," says Katharine Delahaye Paine, chief marketing officer at News Group, a social-media monitoring company. "You don't make fun of ads for non-profits."

McDonald's has apologized, blaming its regional agency for posting an ad that it did not approve. "We can confirm this ad was not approved by McDonald's," the statement says. "As soon as we learned about it, we asked that it be taken down immediately."

Pam Hamlin, president of the Boston office of the ad agency Arnold Worldwide -- which remains McDonald's regional agency -- also apologized, in a statement. "Arnold apologizes for its mistake to McDonald's and to anyone who was offended by the ad," she says. "We've addressed the issue and have improved our approval process."

But the damage has been done.

Paine, the PR specialist, says McDonald's needs to be more transparent and not just finger-point at its ad agency. "In an ideal world, they would be more transparent about the approval process" that was not obeyed by the agency, she says.

Carolla, the NAMI spokesman, says that advertising agencies tend to be the worst offenders in perpetuating mental illness stereotypes. "Either they don't think," he says, "or they just don't care."

The Little Couple's Jennifer Arnold, Bill Klein see their adopted son for first time

From People magazine:

They waited years for this moment. And in the new season of The Little Couple, Dr. Jennifer Arnold and Bill Klein finally get a glimpse of their first child.

In this sneak peek from TLC, the couple meet with an adoption expert, who soon shows them photos of the child they will eventually go on to adopt – a 3-year-old boy named Ben from China who, like them, has a form of dwarfism.

"Oh, he's so cute!" Arnold says as she sees the photos for the first time. "He's a happy guy. He looks so happy."

Arnold adds: "The moment I saw him, I knew that I wanted Ben. I could just envision myself taking him home and having him running around the living room and him being part of our family."

It's been a long road to parenthood for the couple. They have been trying to use a surrogate to have a baby because of the challenges a pregnancy can pose to Arnold's health. (She and Klein both have skeletal dysplasia, a bone-growth disorder that causes dwarfism.)

Two years ago, they were able to transfer an embryo to a surrogate, but the surrogate later miscarried.

Along with their recent foray into adoption, Arnold and Klein say they are continuing to explore surrogacy as a way to expand their family.

The new season of the show premieres April 30 (10 p.m. ET) on TLC.

At Towson University in Maryland, performer teaches others with autism the art of comedy

From The Baltimore Sun:

For many people living with autism, it takes years to carve a place in life where they can thrive.

But for Matt Kaiser (pictured), it took more than three decades for the diagnosis to come. Finding his niche was a much simpler journey.

"I've found that when I perform on stage, I'm a different person than when I'm not performing," said Kaiser, who has found his passion as a comedian since being diagnosed with Asperger syndrome, a type of autism. "When I'm not performing, I tend to be a little bit off to the side and to myself, and that's kind of gotten me in trouble. … A lot of people were misconceiving me in every way possible. Being in the dark for 35 years, I didn't know why."

It wasn't discovered that Kaiser, 39, had Asperger syndrome until he was 35. Since then, the Towson University graduate has honed his comedic skills and recently began teaching them to others in a new program at Towson's Hussman Center for Adults with Autism. His goal is to open doors of self-discovery for others who live with autism.

Autism is a developmental disorder that appears early in life, and affects the brain's normal development of social and communication skills. The effects of autism are different for each person with it. Though symptoms can include cognitive and physical impairments, people living with autism also typically excel at something.

The comedy program, which began in March, has eight registered participants and meets once a week in the center's space at the newly renovated Towson City Center. There, too, the Catonsville resident is far from the man who used to stand on the periphery.

"I'm just a different person when I'm performing — same goes with when I'm conducting a class or a workshop like this," he said. "I'm, in essence, in performance mode."

On Tuesday, April 9, the third meeting of the workshop, Kaiser worked with participants, many of whom are in their 20s, along with university student mentors on improvisation games using props. The participants brought their own props and acted out scenes with creative uses for each.

Before the session started, the participants stood apart from each other and didn't interact much. But as the program progressed, connections were made and smiles grew.

Since the program began, Rhonda Greenhaw, director of the Hussman Center, said she's seen the participants open up and connect with their "artistic selves."

"For so many of the participants, for their whole life they've been told to do things differently," Greenhaw said. "Initially, they feel like … they can't even connect" to what they were watching.

"They can't even connect to something unique and original. They want somebody to tell them, 'What should I do?' Just by providing them with a safe and supportive environment, we've really seen people break out of that, to really connect with it," she said.

As she has seen with participants in the center's other programs, it has taken a while for some of them to open up in a more structured setting.

"A lot of our participants come ... to our programs with this mistrust and this sense that, "Oh, I'm going to come to another place and be told that I need to change, and how much work I need to do and how many deficits I have.' " Greenhaw said. "This is very different. This is all about your strengths and connecting to yourself and using those things to really come into your own, and I think that's really meaningful."

That they're taking their cues from someone who, despite not being diagnosed with autism until his mid-30s, can relate to them and shares their experiences of feeling different from those around them.

'Everything clicking into place'

Kaiser found his niche while in the acting program at Towson University, which he graduated from in 2010. He said some aspects of the program weren't clicking for him, but then an instructor who saw him thrive in mime and movement classes suggested he take a techniques in comedy class.

"Of course, I did, and suddenly everything was clicking into place," Kaiser said.

Now, his repertoire includes the mime, physical comedy, improv, standup and prop work he learned in that class. He's taken three classes at the famed Second City Improv Theater in Chicago, and hones his craft at comedy shows and workshops in the Baltimore/Washington area.

He got plenty of laughs from the participants on Tuesday. After teaching them to use the props, he put on his own prop routine using a collapsible neon yellow tube. He flopped around the floor and used the tube as an elephant trunk, inchworm, a snorkel and Groucho Marx' cigar. He invited participants to show their own ideas during his display.

During the participant's prop routines, he was empathetic and supportive, encouraging applause and pointing out their particularly clever uses of the items.

He participated with the previous incarnation of the Adults with Autism program on campus, before it moved to Towson City Center. After attending a couple of events, he and Greenhaw established a program for him to teach his passion to others on the autism spectrum.

He worked with his job coach, Susan Howarth, on a proposal for a weekly program, and although all parties were apprehensive before the first class, Kaiser was a natural teacher and Howarth has been thrilled to see him thrive in the setting.

"One of the reasons I think he wanted to do this was he wanted to help other autistic people learn other communication modes where they're comfortable," she said. "For me to watch him in this situation — it's just so cool."

Down syndrome dolls get mixed reviews

From Global News:

TORONTO – A collection of dolls with the facial characteristics of Down Syndrome has sparked debate online.

Connie Feda, the mother of a child with Down Syndrome, hopes to launch Dolls for Downs next month.

“We’ve got a lot of pre-orders from Canada,” she told Global News on Wednesday.

Feda claims she has received nearly 500 pre-orders from several countries.

“Considering we don’t have the vinyl version yet, and people are ordering largely by description, we expect that number to double with actual photographs,” she said.

Feda plans to launch a Kickstarter campaign on Friday to raise funds needed to manufacture and market the 12 female and six male dolls. Each sells for $75 plus shipping.

Feda, who lives in Pittsburgh, said her daughter Hannah was frustrated that none of the dolls she saw looked like her.

Feda collaborated with Karen Scott, a doll sculptor in Michigan, to come up with a prototype.

The dolls stand about 18 inches and are available with a variety of skin tones and hair colours and can be customized with a “heart scar,” which many children with Down Syndrome have.

Clothing for the dolls is designed to address sensory issues through the use of Velcro, snaps and large buttons.

The collection includes optional accessories like leg braces and feeding tubes.

Not everyone believes the dolls are a good idea. Calgary’s Krista Flint, former executive director of the Canadian Down Syndrome Society (CDSS), fears the dolls perpetuate the notion that people with Down Syndrome all look alike.

“Not every person with Down syndrome has almond shaped eyes, or a single palm crease, or an exaggerated space between thier (sic) toes, or a flattened nose bridge,” she wrote on her blog, InclusiveHumanity.com.

Feda said she has the “full support” of the U.S. National Down Syndrome Society.

In a statement, the organization said: “Any doll or toy that builds confidence and is fun for a child with Down Syndrome is great.”

Feda said she would welcome an opportunity to speak with the CDSS and other Canadians advocating for children with Down Syndrome.

“My doll is more than a toy,” she said. “It’s a well thought-out therapy aid.”

New feature film biopic about Canadian amputee Terry Fox planned by L.A. producer

From CBC in Canada:

A Los Angeles-based producer plans to bring Terry Fox's story to a global audience with a new film about his 1980 Marathon of Hope.

Toronto-raised Kelly Slattery of Los Angeles-based Therapy Content announced plans for Terry Fox: The Feature Film on Friday, the anniversary of the beginning of Fox’s run across Canada to raise money for cancer research.

She has started a Kickstarter campaign to back the film, saying any proceeds of the feature, to be released in 2014, will go to The Terry Fox Foundation, which supports cancer research.

Fox, who had lost a leg to bone cancer, dipped his artificial foot into the Atlantic Ocean off St. John's on April 12, 1980, and began running across Canada in aid of cancer research.

Fox, 21, ran for 143 days and was cut short in his journey because of the recurrence of cancer. He died on June 28, 1981, but by then he had captured hearts across the country and become a national hero.

Slattery recalled how her father, an Adidas executive, was touched by a letter he received from Fox asking for support.

"Terry Fox was a religion in our home,” said the Toronto-raised producer. “To my family, he represented a selflessness that is rarely seen in the world today."

Slattery has secured film development rights for Terry Fox: The Feature Film and has the co-operation of the Fox family, she said in a press release.

"We are excited by the opportunities offered in a theatre release to share Terry's vision and values with a global audience," Darrell Fox, brother of Terry, is quoted as saying.

"We are very thankful for Kelly's intentions of generating revenue for cancer research, which go hand and hand with Terry's Marathon of Hope intentions of reducing the suffering caused by cancer."

The Vancouver-based Terry Fox Foundation, which sponsors annual runs and other fundraisers in his name, has raised millions for cancer research in the past 33 years.

Slattery said funds raised through crowd-funding site Kickstarter will go towards film production costs, so that more of the proceeds of the film can be put toward cancer research.

Two TV movies have been made about Terry Fox's story — one in 1983 and another in 2005.

NASA scientist reinvents the wheel(chair)

From Smart Planet:

A new wheel design by Salim Nasser — a NASA engineer, inventor and quadriplegic — can reduce the repetitive stress injuries that many wheelchair users face. Popular Science reports.

With standard manual wheelchairs, users have to grasp and push the rim extending from the back wheels. It’s okay for self-propulsion, but it takes a toll on shoulder and arm muscles.

This new wheel reduces the amount of energy expended by targeting bigger muscles: "Using a mechanical device called a planetary gear, Nasser redesigned the wheel hub so that users pull it backwards in a rowing motion to go forward. Planetary gears are used in automatic transmissions and power tools to reverse and reduce motion, but no wheelchair wheels on the market currently use this design."

Pulling uses larger, stronger muscle groups, while pushing a wheelchair uses little muscles in the front of the body (which also hunches over the upper body). This rowing motion reduces wear and tear, and users can stay upright (which improves breathing).

“If a typical user pushes 2,000 to 3,000 times a day, on average, my redesign came out to 330,050 less strokes a year,” Nasser says. The wheel can be fitted onto existing chairs.

He entered the design in the 2010 NASA Tech Briefs “Create the Future” competition, and won.

“Some 1.8 million folks use manual wheelchairs in the U.S. — so there’s a big market out there for these wheels,” says Rimas Buinevicius of Madcelreator, a company that helps early stage firms bring their ideas to market.

Nasser and Buinevicius cofounded Rowheels in 2012 and won the Wisconsin Governor’s Business Plan Contest that June. They hope to bring the wheel to market later this year. One wheelchair will probably cost between $2,000 and $3,000.

The beta design was recently presented at MedTrade in Atlanta and last month at the International Seating Symposium in Nashville.

PBS stations to air "Going Blind" documentary

From Best Movies Ever:

Many people don’t want to think about the possibility of going blind, but image if you were an aware winning director and journalist who learns that they are going blind? 

Peabody Award winning journalist Joe Lovett has this happen to him, and rather than give up, he did what he does best. He made a documentary (Going Blind) about his journey to better understand what was happening to himself along with drawing inspiration from others in his travels.

‘Going Blind’ not only wound up helping Lovett’s journey slow down the course of his disease through medication and surgeries, it’s helped countless others learn how to deal with suffering vision issues and realize that it doesn’t have to be the end of the world. To see when it’s playing in your area you can check out the PBS Going Blind Broadcast link.

Below are some of the stories he followed in the making of this powerful documentary that’s been under the radar but is a must see for anyone with or without vision. It’s also a great push to remind people to get their eyes checked yearly just to be safe. We take our vision for granted, but after watching this film, you won’t. And it’s not a downer either, it’s very inspirational as the sub-title Coming Out Of the Dark About Vision Loss states.

Steve Baskis - Roadside bomb attack

Texas native Steve Baskis was 22 and Private First Class in the Army when a roadside bomb north of Baghdad hit his vehicle. In addition to injuries all over his body, Steve suffered a Traumatic Brain Injury (TMI) when shrapnel from the bomb caused nerve damage to his eyes, leaving him blind. Going Blind documents Steve’s transition from recovery to his new life at his own apartment, designed by himself for independent living as a blind person.

Ray Kornman- Retinitis Pigmentosa
At age 29 while at a routine doctor’s visit to renew his contact lens prescription, Ray Kornman discovered he had retinitis pigmentosa, an incurable eye disease that would leave him blind by the age of 40. In Going Blind, Ray discloses his initial feelings of hopelessness and vulnerability before learning of the various services available for the blind. Now, secure in his condition and content with his life, Ray’s mission is to spread the message about the power of guide dogs.

Emmet Teran – Strabismus
Emmet is an eleven year old [when filmed] with low vision from albinism, a condition he inherited from his father. Emmet works with a comedy troupe after school in Manhattan, and uses humor to dismiss some of the hurts a child encounters from his peers.

Peter D’Elia- Age-related Macular Degeneration

Peter is a New Jersey architect, and has lost vision in his left eye to maculardegeneration. His career was in jeopardy when he noticed that he could not see out of his right eye. His passion for architecture gives him the drive to continue working, and the advent of new medication for wet macular degeneration restored his sight.

Patricia Williams- Glaucoma and Traumatic Injury
Pat is a legally blind woman still struggling with her place in the sighted world, as well as in the visually impaired community. She works as a program support assistant at the VA center in New York City. The enlarged type on her computer screen has helped her flourish in her job. While at times she needs some help getting around, Pat is a fiercely independent woman who does not let her disability define her.

In Britain, Debenhams promotes diversity in new campaign featuring Paralympian athlete

From The Drum:

Debenhams looks to increase its diversity of models in its latest look book campaign, with faces including Paralympian amputee Stefanie Reid (pictured); a 69-year-old model; and the face of the recent Plus Size Fashion Week.

Ed Watson, director of PR at Debenhams, said: “Our customers are not the same shape or size so our latest look book celebrates this diversity. We would be delighted if others followed our lead. Hopefully these shots will be a step, albeit a small one, towards more people feeling more comfortable about their bodies.”

Other faces included in the campaign include alternative model, Kelly, born without her left forearm and discovered when she won TV show ‘Missing Next Top Model’; and Philomena, a size 18 model who wants to be Britain’s first black plus size supermodel.

In 2010, Debenhams ran a campaign banning the Photoshopping of models.