Friday, December 31, 2010

Program in DC that has been a sanctuary for people with mental illness for 35 years will close this week

From The Washington Post:

For 35 years, the Green Door Clubhouse has been a sanctuary where those with serious mental illness could be people, not patients, where they learned to meet the world and where they could always return when the world seemed unwilling to meet them.

On Dec. 31, it will be history, after the Green Door's leaders concluded that the clubhouse's mix of social, educational and employment programming could not survive cuts in city funding or, as the District urged, rely on Medicaid reimbursements.

Instead, the nonprofit group's $5 million mansion at 16th and Corcoran streets NW will be sold, with the proceeds going to support the array of other mental health services that the Green Door provides at a clinic in Petworth.

This week, though, the focus was on the clubhouse, as hundreds of people streamed into the elegant four-story structure to say goodbye to a beloved fixture.

They ate, they reminisced and they teared up. On a projection screen in the middle of the room, a slide show of memories played.

"Forever in our hearts, We will never forget you 1976-2010," read the epitaph over the final photo, a shot of the clubhouse.

"This is one place that gives you a sense of pride, a sense of dignity, a sense of self-respect," said Carlos Brooks, 64, who said his bipolar disorder was diagnosed when he was 46 and who has been coming to the clubhouse for eight years.

It is the sort of humanity that the Green Door's founders hoped to foster when they opened the facility more than three decades ago in the basement of a Unitarian church at 16th and Harvard streets NW.

The city's mental health system was in an upheaval. Attorneys for the mentally ill had sued the District, and a federal judge had ruled that the city needed to do more to treat people in the community. But there were few alternatives to St. Elizabeth's, the vast public psychiatric hospital in Southeast Washington.

It was a problem roiling not only the District but also much of the country. One state after another was confronting demands to end the use of large institutions to house the mentally ill and the developmentally disabled.

The Green Door and the notion of a clubhouse emerged as a way to create a safe space for such people. Members, as the clients were called, worked together with the staff to run the clubhouse and its programs.

The idea was pioneered in New York, and today about 150 clubhouses are spread nationwide. After bringing the clubhouse model to Washington, the Green Door soon outgrew its space and moved a mile or so south, to 16th and Corcoran. The mansion, which is more than 11,000 square feet and was built in 1886, has remained its home since then.

In the education unit, members learned skills that would help them in a literacy class or a GED program. In the communications unit, they published the Green Door's monthly newsletter, the Emerald News. In the employment unit, they explored job opportunities at such places as Target, Giant and CVS. And in the basement, they ran a little cafe.

"Many organizations, they just want to feed you and let you sleep all day," Brooks said. But not at the clubhouse, he said. The computer skills he learned helped him land a delivery job for a catering company, where he has been working for two years. "They help you become self-sufficient."

Harriet Walker, 35, only recently discovered the clubhouse, after being evicted from her home in New Jersey and moving in with a relative in the District. At the clubhouse, she met Annette Harvey, an employment counselor, who has helped her regain her pharmacy technician certification and find a job at a Giant.

It was more than the employment assistance, though, that appealed to her when she came through the green door earlier this year. "I liked the interaction between the staff and the members," said Walker, who asked that her diagnosis not be disclosed. "It was something I hadn't seen before."

The employment and educational programs will move to the Green Door's Petworth location. But for the 150 or so people who regularly visited the clubhouse, the socialization and the collaboration that are so much a part of the culture will no longer have a home, said Judith Johnson, who has run the Green Door for 25 years.

"There's no replacing the program, and there's nothing else like it in the community," she said as she walked among the many visitors this week.

Among them were more than a few former staff members, such as Don Dixon, who was a case manager at the clubhouse a decade ago and came back to say goodbye to a place he considered special.

"A lot of places remind you of what your illnesses or issues are," said Dixon, a director at the nonprofit So Others Might Eat. "Here they encourage you to leave your mental illness at the door."

The Green Door is not alone in facing hard choices. Many private mental health providers in the District are trying to navigate fast-shifting currents, said Shannon Hall, head of a group representing local providers.

The city is cutting social services budgets by millions of dollars. The District's Medicaid program, which funds much of the public mental health-care system with local and federal money, is in the early stages of significant changes, Hall said. And the far-reaching health-care legislation Congress passed this year promises many more changes.

"It's a very difficult time," Hall said.

The $900,000 needed to operate the clubhouse came from an annual contract with the city that isn't being renewed, Johnson said.

The D.C. Department of Mental Health said that funding the clubhouse through local and federal money was the responsible course of action and that the agency worked closely with the Green Door to make it work.

Ultimately, the Green Door concluded that it wouldn't work. "We couldn't bring in enough money," Johnson said.

In a statement, Phyllis Jones, the mental health agency's chief of staff, said the District is not giving up on a clubhouse. "We are disappointed with Green Door's decision and we are working to identify another community provider to operate a Clubhouse in the District."

New study: Ecstasy may help those with PTSD or autism

From The NY Daily News:

The club drug ecstasy may help people who have trouble connecting to others, according to a new study.

The drug, also known as MDMA, has long been known to encourage feelings of happiness and playfulness in people - despite its dangers. But now doctors say, in addition to encouraging casual hookups, it also can help increase sociability in people with a variety of conditions, according to the study published in the Biological Psychiatry Journal.

"These 'empathogenic' effects suggest that MDMA might be useful to enhance the psychotherapy of people who struggle to feel connected to others, as may occur in association with autism, schizophrenia or antisocial personality disorder," the journal's authors said in a press release.

The latest study isn't the only one to praise the use of ecstasy in medical situations.

It can also help treat post-traumatic stress disorder, according to another study published in July, the Chicago Sun-Times reported.

But the drug also comes with some life-threatening side effects, the study and most drug experts note. While it might make people more social, it also impairs a person's risk-assessment and can quickly dehydrate users.

And the effects might not be that long-lasting. While it can increase sociability, the drug doesn't increase empathy, according to the December study.

"Within the context of treatment, these effects may promote intimacy among people who have difficulty feeling close to others," Dr. John Krystal, editor of Biological Psychiatry, said in the press release. "However, MDMA distorts one's perception of others rather than producing true empathy. Thus, MDMA may cause problems if it leads people to misinterpret the emotional state and perhaps intentions of others."

NC school won't let parents walk autistic son to classroom to ease his anxiety


WILLOW SPRING, N.C. — A Johnston County couple has pulled their special-needs son out of school after the principal refused to allow them to walk him to class to ease his anxiety.

Kenneth and Christy Dawson said their 7-year-old son, Jake (pictured), suffers from a form of autism known as Asperger's syndrome. He also has been diagnosed with attention-deficit and hyperactivity disorder.

This fall, the third-grader developed severe separation anxiety, and getting dropped off at school and having to walk in by himself set him off, his parents said.

"He had such severe anxiety making that transition. It was manifesting physically," Christy Dawson said.

"He did have episodes of vomiting (and) severe diarrhea," Kenneth Dawson said.

After about a month, Jake's teacher at Dixon Road Elementary School suggested that his mother or father walk him to the classroom to ease his separation anxiety. Principal Dawn Alligood approved the idea.

"He knew he wasn't going to have to jump out of the car and face the world by himself," Christy Dawson said.

The process worked well for several weeks until other parents started complaining.

Alligood then told the Dawsons that the school doesn't allow parents to walk their children to class to maintain school security. Other parents didn't like the special treatment given to the Dawsons, so Alligood said Jake could no longer get a daily escort to class.

The Dawsons said Alligood asked for a note from Jake's pediatrician, but when the doctor explained that getting walked to class would help reduce Jake's anxiety, they said the principal refused to budge from the policy.

"Who's getting affected? Jake," Christy Dawson said. "You can only imagine the anxiety level increasing in him. It got so bad that he's seeing a gastroenterologist."

Alligood couldn't be reached for comment.

Johnston County Schools Superintendent Ed Croom declined to comment, citing student privacy laws.

In an e-mail to the Dawsons, Croom wrote, "It is simply not good practice to allow parents to walk children to class. It limits the ability to know who is in the building and, frankly, creates a safety issue for students."

School district spokeswoman Terri Sessoms said Croom deals with parental issues on a case-by-case basis.

The Dawsons now home school Jake.

"Where has the compassion gone?" Christy Dawson said. "Something as simple as walking through a door and getting my child where he needs to be can alleviate so much for him, and they deny him that? I think that's very sad."

Disabled man says Central Ohio Transit Authority buses discriminate

From NBC-4 in Ohio:

COLUMBUS, Ohio -- A bus rider who is visually and hearing-impaired said the Central Ohio Transit Authority is failing in its obligations to the disabled.

Christopher Cooley (pictured) and his attorney, Avonte Campinha-Bacote, filed a federal lawsuit against COTA saying its ADA compliance is a systematic failure and COTA discriminates towards riders with disabilities.

Cooley said, "COTA drivers are suppose to announce their bus numbers, routes and stops if the automated PA doesn't work, or if a rider is disabled."

He said he has been dropped off at different bus stops than his intended ones-- and then with his guide dog Sam, forced to find their own way to their intended destination.

"I didn't know where I was at. I was nervous what bus I was catching and whether it was going back to Broad and High streets," said Cooley.

Cooley said he's made multiple complaints to COTA and he was transferred around without getting his issues resolved.

In an e-mail response, COTA Spokesperson Beth Berkemer said, "It is our policy to comply with any and all regulations under the federal Americans with Disabilities Act of 1990 (ADA).

"COTA is committed to providing superior transportation services to all customers, including riders with disabilities. "In addition, COTA addresses all customer concerns and complaints. When we become aware of incidents where customers have experienced service that does not measure up to our commitment, steps are taken to immediately and effectively correct the situation."

As for the lawsuit, Berkemer said, "it's not our practice to comment on pending litigation."

"COTA's position is that they are complying with the ADA and they are are doing a good job of it. We have multiple records showing the complete opposite," said Campinha-Bacote.

This is not the first time COTA has faced a lawsuit. In 2001, a group filed a Class Action lawsuit against COTA for ADA violations.

According to Campinha-Bacote, the group called the National Federation of the Blind of Ohio, et al and COTA reached a settlement agreement and COTA made promises to develop a system to address the problems.

COTA would not comment on the 2001 lawsuit, either, because Berkemer said, "they did not want to influence the pending case."

"There are numerous provisions in there that they have breached and not followed through and not kept their promises on," said Campinha-Bacote.

"I'm standing out there on the street, and this is 2010, and I'm thinking, 'What's taking so long,' (for COTA to comply with the ADA law)," said Cooley.

Both sides will meet Jan. 10 in U.S. District Court to talk about Cooley's lawsuit and see if it can be mediated.

Australian teen with autism allowed to transition from male to female

From Press Trust of India:

MELBOURNE, Australia -- In an extraordinary case, a 16-year-old autistic schoolboy has been allowed by a court in Australia to become a woman on the condition that he gets his sperm frozen in case he wants to have children in the future.

A female judge in a Family Court has given her nod to the schoolboy, who was given the pseudonym "O", to begin drug treatment to become a woman before puberty fully takes hold, 'The Daily Telegraph' in Sydney reported.

Justice Linda Dessau said that the boy, who suffers from mild Asperger's syndrome, was mature enough to know what he wanted. She said her decision was backed by his parents, six specialists and the boy's independent lawyer. After hearing that the boy comes from a loving family who "adore and respect him", the judge said he's so desperate to become a girl that he had become suicidal and once took the extreme step of swallowing a lead solder at his school.

The court, however, said the boy would have his sperm collected and stored because of concerns the female hormones would affect his ability to have children. The judge has held the case in unprecedented secrecy to protect the boy's identity. She has not only suppressed his name but also those of his lawyers, his doctors, the hospital where he'll have treatment and the city in which the court sat.

It's not the first time that an Australian court has created controversy by allowing a minor to start hormone treatment to change sex. Six years ago, the Family court allowed 13-year-old girl "Alex" to begin hormone treatment to become a man. And, in another case, a 12-year-old girl was also allowed to take hormones to live life as a man.

Tajikistan nears end of polio epidemic

From Central Asia Newswire:

If no new polio cases are detected over the coming week, Tajikistan will be able to declare an end to the epidemic that broke out last summer.

The country’s Deputy Health Minister Azam Mirzoev said authorities confirmed the last polio case on July 4,Radio Free Europe/Radio Liberty (RFE/RL) reported on Wednesday.

According to international medical standards, an epidemic is considered to be over if no new polio cases are detected over a period of six months. The six-month period will be up next Tuesday.

The polio epidemic killed 29 children while 458 cases were confirmed by laboratories, the World Health Organization (WHO) reported.

Around 110 children who survived the disease, which damages the nervous system and causes paralysis, have been left permanently disabled.

WHO reported that 709 cases of acute flaccid paralysis, the primary symptom of polio, had been recorded during that period. Laboratory tests confirmed that 458 of those were of the wild poliovirus type 1.

Nusratullo Amirov, the official medical representative of Healthy Life Center in the southern Khatlon province, the epicenter of the epidemic, told RFE/RL that at least eight in 10 cases could have been avoided if parents had vaccinated their children as advised.

Polio was previously detected in Tajikistan in 2007.

Family dog chews off toes of Illinois girl with spina bifida

From the Chicago Sun-Times:

CRETE TOWNSHIP, Ill. — Authorities investigated a “bizarre” incident last week in which a 10-year-old girl’s toes were chewed off by the family dog while she slept.

Around 7 a.m. Dec. 22, the girl yelled her foot was bleeding when her mother came into her room to wake her up for school. The woman saw all of the toes were missing from the girl’s left foot and administered first aid while her husband called paramedics.

Crete firefighters and Will County sheriff’s deputies responded to the scene and the victim was transported to St. Margaret Mercy Hospital in Dyer, Ind. According to reports, the girl has spina bifida which “causes numbness in her lower extremities (and) has basically no sensation beneath the waist.”

She has also had a sore on her left foot for more than a year that will not heal, despite being examined by several doctors and specialists.

The girl’s father told police nothing was out of the ordinary and the girl’s foot was intact when she’d gone to bed around 9 p.m. the night before. The family’s 2-year-old black Labrador retriever has always slept at the foot of the girl’s bed.

Crete firefighters had the 44-year-old man check the dog’s mouth and muzzle, but did not find any blood.

The family said the dog has never been aggressive toward the girl or other people and sheriff’s deputies noted the animal “showed no aggression” toward them while they were in the house.

A Will County Animal Control Center officer examined the dog. On Tuesday, they reported the animal had been brought in for a 10-day observation since records showed it was overdue for vaccinations.

Animal control “determined that the dog was acting true to its nature by removing the wound from the victim as it would in the wild” and the incident was not a violation.

The dog was described as nonthreatening and will not be put down.

The Department of Children and Family Services was also notified to document the incident, but told sheriff’s police they did not plan to investigate.

Nevada caretaker charged with punching wheelchair user in the mouth

From The Associated Press:

A caretaker has been accused of punching and knocking out the tooth of a wheelchair-bound man with cerebral palsy in Douglas County.

The Record-Courier of Gardnerville reports that 32-year-old Barry Paulison of Yerington was booked Tuesday on a gross misdemeanor charge of abuse of a vulnerable person.

Paulison had been hired as temporary help for the Gardnerville man through a state program that provides full-time caretakers a short break from their daily routine.

The victim's parents say Paulison took their 21-year-old son to a bowling alley and fast-food restaurant on Dec. 20.

They say they noticed his face, arms and legs were bruised and he was missing a tooth after he returned about five hours later.

Paulison is accused of hitting, striking and punching the man.

Utah researchers find that few award-winning children's books feature characters with disabilities

From the Deseret News in Utah:

PROVO, Utah — If you're the parent of a young Samoan boy with a reading disability, it may be difficult to find an acclaimed children's book with characters he can relate to.

A new BYU study found that Newbery Award and Honor books from 1975 to 2009 feature a disproportionately smaller percentage of children with disabilities and ethic diversity than actual classroom numbers.

In fact, BYU graduate Melissa Leininger and professors Tina Dyches and Mary Anne Prater found that specific learning disabilities were depicted in only two literary characters (8 percent), yet occur in American classrooms in 45 percent of students.

"That's totally understandable because Newbery Books are judged on their literary merit, not necessarily (because they are) dealing with hot topics," said Dyches, who teaches special education. "But we would like to see a better representation of the kinds of kids that students in our American schools will typically encounter."

The group decided to evaluate Newbery Award and Honor books because they are found in nearly every school library across the country. And 1975 was a good year to start tracking the annual literary award because that was when the government passed the Education for All Handicapped Children Act, which required public schools that received federal funds to provide equal educational opportunities for children with mental or physical disabilities.

From the 131 award-winning or nominated books, the researchers found 31 books that featured 41 main or supporting characters with a disability. They then reviewed how that character was depicted, as well as how they interacted with siblings, parents and the community.

The study, published in December's issue of Education and Training in Autism and Developmental Disabilities, found that of the 41 characters with a disability, 24 were between the ages of 6 and 21 and were most commonly depicted with mental retardation, orthopedic impairment, autism or multiple disabilities. Only one character was depicted with a speech impairment.

However, the most common disabilities in American classrooms today are learning disabilities, speech or language impairments and mental retardation, explained Leininger, who wrote the paper as her thesis for her education specialist degree and now works as a school psychologist for the Davis School District.

"If children are not seeing their disability, I think it's a lot harder for them to feel like, 'Oh, this is something I can relate to,' or 'I feel like someone else understands,'" she said.

"Children like to feel recognized and included," she continued. "When they don't see those (self-reflective) books, it minimizes their sense of importance or acceptance within the school environment."

In addition to discrepancies in disabilities, Leininger said she was also surprised by the lack of ethnic diversity of characters with disabilities.

Of the younger characters with disabilities, 20 were white, three were black and one was Hispanic. There were no Asian/Pacific Islander or American Indian/Alaskan Native children depicted.

Such diversity is important in literature, she said, because it allows children with disabilities to see themselves through the characters and gain strength from the characters' good decisions and successes. It also helps classmates become more understanding and appreciative of others' differences.

Yet despite what may be lacking, the team is encouraged by what they see as continual improvement in the literary portrayal of individuals with disabilities.

"A lot of the (earlier) depictions were more, 'Here's this kid, he has a disability and that's all we'll focus on,'" Dyches said. "Now, we have kids who are so much more multi-dimensional. It's not just the disability that the authors are focusing on. It's just one part of that individual. It may be a significant part, but it's not the only part."

Adaptive Action Sports gets amputees onto slopes for snowboarding

From ESPN:

Amy Purdy (pictured) was 19 when bacterial meningitis stole her legs. She was a competitive snowboarder back then, and a good one. She started riding at 15, after struggling for a few years on skis and deciding the sport just wasn't for her.

But snowboarding was different. It came easily to her. She spent every weekend and break from school traveling to the mountains around her home in Las Vegas. She couldn't get enough. After graduation, she worked as a massage therapist with one goal: make enough money to ditch Vegas and travel the world with her snowboard.

Then she got sick. She spent three weeks in a coma. Her spleen was removed. She lost kidney function. Both of her legs were amputated below the knee and she was given a single-digit chance of survival.

Miraculously, Purdy lived, becoming the first person in Las Vegas in more than 20 years to survive after contracting Neisseria meningitis. "But I didn't know if I would ever snowboard again, or how," she says. "No one I talked to knew of an amputee snowboarder. They knew skiers. But I wanted to do what I loved."

Purdy spent the next two years working with her prosthetist and prosthesis manufacturers to create legs that would allow her to snowboard. There were running legs on the market, and skiing legs, cycling legs and swimming legs. But nothing for snowboarding. She needed legs with ankles that bent well enough to allow her knees to bend properly, which would allow her hips to move correctly. "Without the right ankles, you feel like you're in a full-body cast," she says.

After much trial and error, Purdy had her legs. And once she was back on her snowboard, she slowly continued to perfect them. When she discovered how difficult it was to make a turn on her toe edge -- imagine making a toeside carve without the ability to control the more than 100 muscles in your ankles and feet -- she added wedges under her heels. She never left the house without a roll of duct tape, an amputee snowboarder's best friend.

Over the next few years and in the course of many hours of research, Purdy met another amputee snowboarder and exchanged notes. She began receiving a lot of local attention and publicity for pioneering a new sport for amputees. Then, in 2005, she co-founded Adaptive Action Sports, an organization that helps amputee and paralyzed athletes learn and compete in action sports, including snowboarding, motocross and skateboarding.

AAS partnered with the USA Snowboarding Association to create an adaptive division within the organization with the hopes of becoming part of the international sports scene. "When I was looking for a way to snowboard again, I couldn't find anything," Purdy says. "But there were so many resources for skiing. Every resort has an adaptive skiing school, and if you want to compete, there is a pipeline straight to the Paralympics. I remember thinking, 'If snowboarding is ever part of the Paralympics, I will be there, 100 percent.'" Thanks to Purdy and the efforts of those she's inspired, that could happen as soon as 2014.

For the past few years, Purdy and AAS co-founder Daniel Gale have been working with the USASA and World Snowboarding Federation to apply for inclusion in the Paralympic Games. Last year, they got their first break when the World Snowboarding Federation and the International Paralympic Committee signed a memorandum of understanding to further develop the sport of para-snowboard -- a version of boardercross featuring only single-man time trials -- during 2010 and 2011 with the intention of putting the sport up for a vote to be added to the 2014 Games.

With a global governing body's recognition and three World Cup races planned for 2011, the sport's organizers feel confident it will be accepted to the 2014 lineup in Sochi, Russia. "We're where able-bodied snowboarding was 10 years ago," Gale says. "But we believe we'll get the thumbs-up, and it will change the landscape for the adaptive community." (According to the U.S. Paralympic Committee, a vote on snowboarding is not yet on the agenda for the IPC meeting in June, but it is believed it will be added and possibly voted on at that time.)

The current Winter Paralympics lineup consists of Alpine and cross-country skiing, biathlon, curling and sled hockey. Not the most youthful, or compelling, schedule. And just like the able-bodied Olympics, the Paralympics and its organizers know they need to youth-anize their event. But more than a boon to Paralympic ratings, the addition of snowboarding will surely spark a growth in the sport by creating a new option for adaptive athletes wanting to compete.

Until recently, amputee athletes were all but forced onto two planks, simply because there is more support and infrastructure around adaptive skiing, as well as more knowledgeable coaches and a direct pipeline to competition. "There is going to be a paradigm shift," Gale says. "People will realize it is possible for amputee athletes to snowboard."

That shift will start this January, with the creation of AAS's Pipeline camps. The first set of three-day camps will be held at Sierra at Tahoe Jan. 21-23 and Feb. 24-26, 2011. The camps are designed to create a pathway -- a pipeline, if you will -- for beginner athletes to learn the fundamentals of snowboarding, progress to an intermediate knowledge of the sport and then learn to ride boardercross and compete within the USASA organization.

The first camp is designed for beginners and the second for intermediate training, so an athlete -- whether he or she is learning to snowboard for the first time or re-learning to snowboard after losing a limb -- can jump in wherever is most appropriate. "If we are officially invited to the Paralympic Games, there will be a high demand for athletes who want to participate," Gale says. "These camps will provide them with the necessary training."

Then, at January's Winter X Games 15 in Aspen, Colo., Adaptive Stand-Up Snowboarder X makes its exhibition debut. Purdy, who is also the U.S. women's hopeful for the Paralympic team if her sport gets the nod, plans to pre-run the course before the men-only race. Next year, she hopes she has some competition.

Indian author with CP tells of her survival and success in her new book, One Little Finger

From Indian Express. Congrats to Malini, who I met in August 2010!

Malini Chib’s birth was extremely traumatic. The doctors shook their heads and regretted the decision of a normal delivery. One of them even predicted that she won’t live more than 72 hours. But 44 years later, her first book One Little Finger is an inspiration for thousands and her story worth a read.

Chib (pictured), fondly called Molly, has cerebral palsy. At ADAPT, Spastics Society of India located in Colaba, she moves around in her electric wheel chair. Dressed in a blue kurti and black skinny jeans, Chib uses a Lightwriter to communicate with people who find it difficult to understand her speech.

At times, her mother Dr Mithu Alur, plays interpreter and says, “She is a talker, a definite talker.”

Malini is exhilarated at the mention of her book and says, “My friends say I am an open book.” Simply told and extremely honest, Molly’s story is touching and inspiring with dabs of humour splashed across the pages. The book is a peek into her life — the friends she made and lost, the time spent with her cousins, family vacations, education, some rude shocks and freedom.

The just-released One Little Finger, published by Sage Publication, derives its name from the fact that Malini uses one of her fingers on the left hand to type her 50,000-word story on her laptop.

She talks about the painful childhood experience of visiting Indian doctors who treated her like a vegetable. However, the highly-trained medical professionals in the West were more caring. And that helped in her upbringing/education.

“Things have improved here but it can get a lot better. Doctors and teachers in the West have a background in disability studies which is what is missing in India,” Malini says.

Alur further adds, “A lot of people use terms like ‘these people’ or ‘you people’ for the disabled. There is a lot of ignorance and cultural oppression.” It was this attitude towards the disabled that led Alur to start a revolution of sorts. In 1972, she set up ADAPT Rights Group that promotes inclusion of the disabled in the society and advocates the need for disability-friendly infrastructure. Now, the group has spread to 20 Indian states.

Over tea and dhokla, the conversation with Malini touches many subjects: potholed Colaba Causeway pavements; shopping at Linking Road; her old friend Zubin who she has lost touch with, a Christmas invitation, disastrous family vacations and her brother Nikhil Chib, owner of Busaba restaurant in Colaba. She also shows the papers she had written while pursuing her masters in Women’s Studies, one of them being ‘Does she take sugar in her tea?’. A famous BBC radio programme by the same name was the inspiration behind this paper.

“Even in a place like London, I have come across people who would question me if I moved out of home alone. If I am with my carer, they would talk to that person instead of directing a question at me, as if I can’t hear anything,” she says. One of the things that Chib writes about extensively in the book is ‘inclusiveness’. “I support inclusive education — a child with special needs must spend a lot of time with others. It helps in the person’s growth. We need to address diversity and celebrate it,” says Alur.

Malini is planning a book-reading and talk at St Xavier’s College, where she spent four years completing her bachelor’s degree. In the book, she mentions how the infrastructure in the college was not disability-friendly. Lack of ramps and lifts at the college was a big problem. Years later, the situation remains the same.

Budget cuts in California may mean demise of education-related mental health services

From the Los Angeles Times:

A week before Christmas, Judy Powelson was awaiting her son's first visit home in nine months with a mix of excitement and trepidation.

Earlier in the year, the 17-year-old's mental illness had spiraled out of control to the point that he attacked her, kicked a teacher in the groin and was hospitalized for psychiatric treatment. But since he entered residential treatment funded in part by the state, she'd seen him go through marked improvements — getting a 3.11 GPA and being voted MVP in soccer.

Now Powelson's son, identified in court papers as T.G., is one of 20,000 students across California whose mental health services may be in jeopardy in the new year because of a line-item veto by the governor. In October, Gov. Arnold Schwarzenegger slashed $133 million in funding for what are known as AB 3632 services, a 25-year-old program that requires state and local education and mental health agencies to jointly provide education-related mental health services.

Families with children who suffer from mental illnesses ranging from depression to schizophrenia and who depend on these services have been thrown into chaos, parents and advocates say. Several counties, including Orange and Alameda, have sent out notices indicating that the services will be discontinued in January, attorneys representing the parents said.

"If my son loses this treatment, I will lose my son," Powelson said, her voice quivering. "I will lose him to mental illness, I will lose him to the criminal justice system, to drug abuse, to suicide."

She has filed a declaration about her son's situation as part of a federal class-action lawsuit seeking to block cutbacks to or discontinuation of the services. This month, a federal judge in Los Angeles heard arguments from attorneys representing the families and various state and local agencies but said he would wait until the new year before considering whether to issue an injunction.

In Japan, Mark Yamazaki pioneers importing wide variety of wheelchairs

From The Japan Times:

"You can't keep a good man down" is the darkly applicable phrase that springs to mind when listening to Yasuhiro "Mark" Yamazaki (pictured). The energy, conviction, sense of mission and utter absence of self-pity in this soft-spoken man is humbling.

In 1979, the Tokyo-born Yamazaki, now 50, was attending high school in Massachusetts. It was about a year into his studies, and the students had opened the dorm windows to let some air into the building after curfew on an unseasonably warm February night.

Yamazaki was sitting on the low ledge of the hallway windows, a place students often gathered. But when he leaned back against the window grate, it broke and he fell three stories to the ground, breaking his back, fracturing his skull and severing his spinal cord. Unconscious for 10 days, Yamazaki awakened to find himself paralyzed from the waist down.

At a time when such an accident in Japan would have likely meant a three- to seven-year hospital stay, he was out and about in just four months. Unbowed by fate's blow and determined to live as full a life as he could, Yamazaki remained in the U.S. and went on to complete high school and college before returning to Japan.

It wasn't until his return in 1985 that Yamazaki realized how different the years following his accident would have been had he spent them in Japan instead of the U.S. "When I came back from the United States after college, I was surprised to find that such an advanced country as Japan had such poor wheelchairs. There was no assistive technology, no pressure-relieving cushions, seating devices, nothing," he said.

The counseling he had received soon after his accident had helped him maintain a positive outlook and focus on what he could do, not what he couldn't.

An avid swimmer, Yamazaki had immediately asked if he would ever be able to swim again. "They told me, 'Sure!' and told me that many paralyzed people lead very active lives," he said. Such counseling, or even an honest briefing on one's condition, was virtually nonexistent in Japan at the time.

Realizing the need to help others with similar conditions, Yamazaki in 1990 started Access International Corp. Today, the company mainly imports and sells a wide variety of wheelchairs, from simple manual models to lightweight, sports chairs, state-of-the-art power models and standing chairs, as well as other seating goods and assistive technology products.

In the early days, with his business slow to take off, Yamazaki made full use of his double major from Boston College in marketing and computer science and produced and sold computer software.

"I couldn't profit just from selling wheelchairs. No one would buy them at first so we had to concentrate on educating people," he said.

That education focused on what was, at the time, a severe lack of understanding of how seating and positioning could greatly affect a wheelchair user's health and mobility.

Today, Access International is considered the pioneer of seating in Japan, and thanks to it many people have realized huge improvements in their lives. A simple diagnosis and minor adjustment are often all that is needed for a person to avoid undue suffering and expense and significantly raise the quality of life.

Yamazaki was familiar with the pain from his personal experience. After six operations for pressure sores, he went to the U.S. for surgery. "The surgery itself wasn't much different from in Japan," he said. "But what was different was that after surgery there was a person called a 'seating specialist' who checked my pelvis, said it was tilted and that was the reason I was getting the pressure sores.

"They changed the balance of the cushion and also the back support and cured it."

Since then, Yamazaki has been free of such problems, and now travels regularly to the United States to learn the latest in seating and import the knowledge to Japan, where he holds seminars and seating clinics and gives seating trials and consultations nationwide.

Surprisingly, Yamazaki's work was often met — and is still met — with animosity, largely from hospitals and doctors. The reasons for this are manifold, one being the "close relationships" he says often exist between hospitals, wheelchair companies, dealers and local governments. Long-term ties are given priority and outsiders are shunned.

"In the beginning, some local governments outright refused to use imported products," Yamazaki said. "Some people are also simply afraid to use new products or just don't want to change."

Sadly, the resistance to change, for whatever reason, comes at the expense of those who need help the most. "The history of my company has been one of fighting this resistance," he said.

In the early years, when Yamazaki found so many doors shut, he decided to start approaching only those who were receptive to the help he offered. With no advocate to speak for him and no media coverage of the industry, the going was rough. But with time, satisfied clients whose lives had been drastically improved by his assistance and products helped to spread the word. Eventually, more and more hospitals opened their doors to him and an ever-increasing number of doctors and therapists stepped forward to learn. This, he points out, is happening just in time.

"Everyone is worrying now that in about 10 years, the number of caretakers needed in Japan is going to double. This is crazy!" Yamazaki emphasizes that the right products and proper seating can enable people to comfortably stay in wheelchairs the entire day, not just a few hours. "Too much time and manpower is still spent carrying people back and forth from their wheelchairs," he said.

Today, Yamazaki works not only on a one-on-one basis with clients but also as an adviser, committee member and consultant for universal design. The author of two books, this year he will act as a consultant in the construction of two buildings to make them more accessible to the physically disabled. "For the past 25 years I've been working to bring the level in Japan up to at least what it was in North America," he said.

"I want to tell people, 'Come out, get out of your home more.' If there's something you can't do, because of the wheelchair or the environment, we can change that."

Another of Yamazaki's projects is the promotion of parking permits for the disabled. Though designated areas exist in Japan, they are often taken by able-bodied drivers. Starting in Saga Prefecture, Yamazaki set out to establish permit systems and has now succeeded in implementing them in 16 prefectures and two other cities. "It's great!" he exclaimed.

Yamazaki is also eager to see Japanese permits recognized in the U.S., which would enable Japanese to take advantage of the wide choice of rental cars abroad that are equipped with hand controls. "When I drive in the U.S., I just reserve such a car on the Internet, but I still don't have a handicapped parking permit because they are only available to people living in the U.S.," he said.

Yamazaki is also approaching domestic rental car companies to try to increase the number of vehicles available for disabled drivers.

In 1995, Yamazaki started Active Japan, the country's first magazine for disabled athletes. He himself competed in the Barcelona Paralympics as a swimmer, and although he failed to win a medal, he made the finals in the 100-meter breaststroke.

During that time, Yamazaki was struck by the fact that there was no Japanese media coverage of the games. "There were maybe three lines in the newspaper," he said.

After Barcelona, his magazine and numerous television and radio interviews helped change that for the 1998 Nagano Paralympics, which received a lot of attention from Japanese media. "I didn't start the magazine just to print sports notices. I wanted to really change disabled people and the people around them," Yamazaki said.

Unfortunately, the now-defunct magazine ultimately became a source of disappointment for Yamazaki. He did not want to see it used to sing the praises of people who, he thought, did not serve as appropriate role models of living well-rounded lives and continuing to do so long after their competitive career.

"Some (former Japanese athletes) have no vocational skills and are living in nursing homes on a pension." A lack of income means they can't afford good wheelchairs and are at the mercy of the "kaigo hoken," or long-term care insurance, which Yamazaki said can lead to a further deterioration in their health.

Yamazaki himself continues to compete in swimming events and, at the end of November, he competed against 20- and 30-year-olds in the national swimming championships for the disabled in Tokyo, winning the 50- and 100-meter breaststroke and setting meet records in both events.

He also goes scuba diving, which he took up while in college. Even losing his bladder and a kidney to cancer recently has failed to keep him down.

"For four years I didn't scuba dive because of the cancer, but now that it's good, I am back scuba diving. Now I can show people who don't have a bladder that you can still do all these things," he said smiling.

"In my years in the United States," he said, "I later realized I never thought of myself as a disabled person. But when I came back to Japan I suddenly felt that I was disabled.

"When I was in a wheelchair in the U.S, people would look at me and say, 'Oh, you're a college student.' Here, when I came back and was a businessman, people would look at me and say, 'Oh, you're a disabled person.' Always the disabled part came first."

Though he believes things are changing: "In Japan, different is bad. I'm telling people, 'Different is not bad, it's just different.' "

Kenyan activist works to change hateful attitudes toward disabled people there

From The Standard in Kenya:

Mantelina Nasieku, 14, knows too well what she wants in life- to be a lawyer. It is a miracle that she is alive to declare her dream.

Being mauled by hyenas, strangulation, suffocation, being snuffed to death by tobacco concoction or being poisoned by desert rose juice are some of the things that might befallen her at birth after she was born partially blind.

But suffering doesn’t end with children with disabilities. Women too have to pay the price of bringing forth such children. The men issue orders; the women do the execution. Objections to such decrees are met with frown, ex-communication, or battery.

Luckily for Mantelina and 500 others, they are alive due to a rescue operation.

Mantelina’s zeal is an embodiment of triumph over cultural oppression.

"She has a big appetite for knowledge," says Grace Seneiya, a woman who defied culture to offer a new lease of life and dignity to the condemned babies. From a ‘rogue woman’ to a celebrated figure in the community, today Seneiya, 37, befuddles even her sharpest critics.

"In Samburu, disability is frowned at. The disabled are viewed as a curse, a burden, a bad omen," explains Seneiya as we take a tour of Samburu Handicap Education and Rehabilitation Programme (Sherp). "With this amount of loathing, such babies are condemned to death," adds as her voice falters.

Here, the disabled are called ngoki, meaning curse, useless or demonic. That is why, Seneiya explains, there are not so many disabled adults in the area nor will you even see albinos. They are killed soon after birth in one of the most horrific cultural acts.

Indeed, treading through the thorns and thistles of this near-barren world, the scrubland shrinks as if in shame of the infamy of the atrocities it has silently witnessed and concealed. There is an eerie feel of death here.

So you think that this is a practice of a bygone era? You are wrong. "Just recently, we have had cases of abandoned disabled babies," Seneyia says after a long silence.

Death designs are as varied as they are many. Babies are tethered on spiky scrubs, abandoned in the bush or left in the goat pens. It is mothers who perform the killing. Men issue orders.

Women who defy such orders are excommunicated from their matrimonial homes. Some commit suicide because of frustrations, Seneiya reveals.

Locals seem to have been sworn into silence and interestingly even though the administration or law enforcement is aware of the practice, no one seems to want put in force the rule of law.

"There was a time some leaders wanted us to be ejected from this ground arguing that disability does not add anything to the growth of the community. No one is taking action against these dehumanising culture," Seneiya mourns.

The turning point came in 2003 when Seneiya’s and five other women in Samburu were engaged in a workshop in Nanyuki by organised by SNV Netherlands Development Organisation.

"We went to Nanyuki and there was a lady called Sabdiyo Dido from SNV who opened our eyes. She empowered us to think critically and to be strategic in resource mobilisation for our cause. It is after that training that I came out like a possessed person. I knew I wanted to help the disabled. That is how I soldiered on," she recalls.

Thankfully, this rescue effort required a brief women empowerment effort to kick-start these changes. In Nanyuki SNV wanted to find solutions on the myriad problems affecting women and children in Samburu, and instantly, Seneiya, herself a special education teacher, knew where to place her cards. It has paid off.

"All these children you see here would either be long dead or living miserably," points out Seneiya.

For instance, Mantelina was born partially blind and was left for the dead in the scrubland. She was rescued and underwent surgery and now she can see.

Maralal is a dusty township with wooden structures fashioned from cedar. Men draped in red shukas sit on one side of the street snuffing tobacco and engaging in small talk. Across the street, women, sitting on the dusty grounds supply the tobacco. The irony is that the much cherished drug is the killer dose here for the disabled.

One old man, Daudi Olekentai, doesn’t think there is anything wrong with killing the disabled. "We the Samburu are always on the move. How do you expect us to carry a disabled adult," he poses, snuffs his tobacco, sneezes and requests if we can buy him more tobacco.

To Seneiya, this is a classic impunity but she is not deterred. She hopes a time will come when the disabled will be accepted in the social circles of the community.

"We’re now moving from rescuing to awareness. At least today, they’d rather dump the baby here than kill it. We want them to appreciate the children and show that they can be productive," Seneiya says.

However, such a bold act was and still is considered a perilous enterprise that fires high emotions, fear and hatred with equal measure.

Indeed, Seneya endured an avalanche of hatred from friends and relatives alike. She was accused of surrounding herself with curses and as such, they swore, she would never get married.

"The nomadic Samburu lifestyle is intolerant to the weak and disabled. As they move for pasture and water, a disabled is considered an extra baggage. During raids, the disabled are usually left behind. A year ago, in one village there was a raid. Everyone fled except two disabled people who were killed," she recalls.

Girls are supposed to bloom to astounding beauties that could attract premium bride price. Disabled girls never attract suitors. The very textile of this society is cut on bravado and bride wealth. Anything that threatens these key rudiments is frowned at and has to be destroyed. Disability, real or perceived, is such a threat.

"For long I used to mount my motorbike and tour the manyattas to inquire about disabled children. At times I would stumble on one abandoned here and another there. Most of the time you find them tethered on a shrub, feeble and shrunk."

"People used to look at me awestruck. They were convinced I was nuts," she says.

Virginia will have to cut programs that help intellectually disabled people live independently

From The News-Leader in Staunton, Va.

Community-based programs that help people with intellectual disabilities live independently rely on Medicaid funding, but for the past decade, the rates have remained stagnant at best, while costs have soared.

With a proposed 5 percent funding cut looming, service providers face even more difficulty helping their clients live in their communities.

In-home services pay for an agency or community services board employee to help a disabled person with a variety of daily living tasks, such as cooking, budgeting and laundry. In-home workers also drive clients to medical and dental appointments, the grocery store or on social outings.

The waiver program depends on funds from state and local mental health agencies and Medicaid — the joint federal-state health insurance system for the poor and disabled. The rate set by the state to pay for in-home service has remained at $18.86 per hour for 10 years.

“That sounds like a lot of money, but you also have to factor in benefits and mileage,” said Jim Hall, Waynesboro branch director for DePaul Community Resources. “Including benefits, you end up paying around $14 or $15 per hour.”

Rising insurance rates and cost-of-living expenses eat into what’s left and then some, making the service a money loser for many agencies. Agencies also have to give employees time to fill out paperwork and complete documentation — time that the agency can’t bill the state, said Hall, who at one time considered offering it.

“It’s not a cost-efficient program for an organization to run,” he said. “The way to make it work is to hire part-timers, but I’ve always had difficulty keeping them because they need more hours or benefits.”

As a result, the few agencies in Staunton, Waynesboro and Augusta County that have offered it in the past no longer do.

Worse, advocates and families are bracing for a 5 percent cut across community-based services, including in-home services, set to take effect in July.

Residents in Staunton, Waynesboro and Augusta County can get the service through Valley Community Services Board or Creative Family Solutions, a Christiansburg-based agency.

Creative Family Solutions specializes in providing in-home services throughout the state, including the Central Valley. It makes the low reimbursement rates work by actively recruiting part-time employees who get benefits from another full-time job or through a spouse, said agency director Scott Worley.

“Many have jobs with other companies,” he said. “We get, a lot of times, people from DSS (Department of Social Services) and (community service boards). Sometimes we’ll hear that a teacher from the individual’s school system did a great job with that person, so we’ll go to the school and try to recruit them.”

VCSB is the local organization through which intellectually disabled residents apply for Medicaid waiver and, once approved, are connected with services. It has one full-time and eight part-time employees who provide in-home services.

For the time being, VCSB doesn’t have a waiting list for people seeking in-home services, said Kathy Kristiansen, director of client services. It receives about one request a month for the service, she said.

“We’re hoping to grow a little bit in the in-home area,” said Karen Belcher, who leads one of four support teams at VCSB for people with intellectual disabilities, mental illness or both. “We are looking at increasing it so that if we get new referrals, we can take them.”

Belcher added that VCSB might look at identifying people in sponsored placement — an adult foster-care program — who might be able to live on their own with support from in-home services.

“We have quite a few individuals already who are living in their own apartments and receive this service,” she said. “Something else we could look at in the coming years is getting people in sponsored placement into an independent living situation with in-home services.”

Advocates say many people now living in group homes, which typically house four to six people, have the potential to live alone or with one roommate if they could get in-home services. But the service will continue to dwindle if it isn’t adequately funded.

“Anytime you have a group situation, it creates some restrictions,” said Christy Collins, who owns and operates CC & Associates with her husband. The agency no longer offers in-home in the Staunton-area because the costs of operating the program have outpaced the reimbursement rate. “In a group-home situation, there have to be some house rules.

“In-home is the least restrictive service,” said Collins, who worked as a advocate for 10 years before starting CC & Associates. “It is what allows the most independence for people.”

Disabled Scottish MP Anne Begg honored with OBE for work on disability rights

From The Daily Record in Scotland:

Annie Lennox and Anne Begg (pictured) lead the Scottish charge in today's New Year's Honours List.

Eurythmics singer Lennox, 56, lands an OBE for her work fighting AIDS and poverty in Africa.

And Aberdeen South MP Begg, 55, makes it a double for the Granite City as she is made a Dame for campaigning work with disabled people.

The first full-time wheelchair user in the Commons is also heralded for putting equal opportunities on the agenda in parliament.

The duo are among hundreds who will receive gongs.

Actors, sports stars and politicians are honoured alongside business leaders, community workers and volunteers in the list.

High-profile recipients include Poirot actor David Suchet, who gets a CBE. An MBE goes to US Open and Ryder Cup winning golfer Graeme McDowell.

Aberdeen-born Lennox, who has sold more than 80 million albums worldwide, now splits her time between campaigning and music.

The peace activist last night said she was surprised to be granted an OBE, because of her anti-authority nature.

The Sweet Dreams singer said: "I'm genuinely honoured to be part of the New Year's Honours list for 2010.

"As somewhat of a renegade, it either means I've done something terribly right - or they've done something terribly wrong.

"In any case, whatever powers that be have deemed me worthy of such a recognition, I'm getting my fake leopard pillbox hat dusted and ready."

Lennox has long campaigned to raise awareness of AIDS in Africa. She was appointed as a UNESCO Goodwill Ambassador for AIDS and has worked with ex-PM Gordon Brown's wife Sarah on several initiatives.

She added: "I was never much of a one to win prizes... and certainly never placed too much value on their acquisition.

"Therefore, I take this as more of an appreciation for the gentle turning of the years for someone who's enormously grateful for being able to breathe more or less freely in a totally insane world."

Brechin-born Labour MP Begg - who becomes Dame Anne - was elected in the party's 1997 landslide and has been a well-known face in parliament for the past two decades.

She has used a wheelchair since 1984, after being born with Gaucher's disease, a rare genetic condition which causes regular bone breakages.

She is now chairman of the Work and Pensions Select Committee, and has chaired the All Party Group on Equalities and the All Party Group on Chronic Pain.

The former teacher, who was educated at Aberdeen University, also headed a one-off parliamentary conference on the representation of women, disabled people and ethnic minorities.

Online Torah class accommodates people with hearing impairments

From The Jewish Chronicle:

The integration of ancient text and modern technology is the foundation of, a website that allows students to learn Torah online via real-time, interactive classrooms.

Now, has made it possible for hearing-impaired people to join in.

Beginning in January, the website will offer its first class for deaf students, called “Jewish Laws of Shabbat: Cooking.”

The upcoming course was a result of interest shown by some potential students for a class to accommodate the hearing-impaired.

The mission of is to “use a portal that can reach as many people as possible to spread Torah and Jewish learning throughout the world,” says Rabbi Yedidya Rausman, who, along with Rabbi Chaim Brovender, co-founded the service in 2007. To date, approximately 6,000 students from 52 countries have logged on.

The new course, which will be taught by Rabbi Gabe Pransky, is currently being offered on a trial basis, and there has already been good feedback; the course will officially start Jan. 16, 2011.

“It’s using modern technology to its utmost,” said Rausman. “There are so many factors that could make it not work. Not only does it work, but it works extraordinarily well. Nothing in the technical world is perfect, but it’s as good as we can hope it to be.”

After much research, Rausman and Brovender found what they believed to be the best videoconference technology that enables the students and teacher to have a dialogue, and enables everyone to see the text and to speak with each other. The only requirements are a computer, cable modem, speakers and web camera. To join in conversation, a microphone is necessary as well.

For the class for the hearing impaired, a sign language interpreter, using American Sign Language, will be viewable in a video box, and a participant can either speak live or send a message through a chat box; the sign language interpreter is there to interpret all of it.

Rausman chose to have a live interpreter rather than close captioning because their market research found that an interpreter to be the preferred method.

“We assumed we’d make a class for the hearing impaired, but after speaking with people, the last thing they want to do is be segregated from the crowd,” he said, “so we took an existing class and made it suitable for the hearing impaired.”

In addition, with close captioning, deaf students’ attention would not have been on the teacher. With an interpreter, a student can focus on both the teacher and the interpreter through the video box.

The course for hearing impaired students is open to everyone. In fact, Rausman said there is no way to discern which students in the class are hearing impaired. The class registration form intentionally omits questions about hearing.

“We don’t want to put up any barriers,” he said. “We want everyone to be part of the community, have the same learning experience,” he said.

(It is therefore not possible to know if any hearing-impaired students from the Pittsburgh area are taking the course.)

Overall,'s worldwide student body ranges in age from 10 to 85. Some are beginners in Torah study while others are experts; some are in the process of conversion. They approach the classes with different degrees of religiosity, levels of education.

The classes are open to men and women.

In other words, it’s a diverse group.

While nothing can replace the real experience of attending a brick and mortar yeshiva, Rausman said, this “social environment on the web” with real-time, give and take discussion, is the next best thing.

And the advantage is, you can attend class in your pajamas, he jokes.

If the first class for deaf students is successful, Rausman said, “Our ultimate goal is to expand it to as many courses as we can, if there’s a demand for it.”

Universal design aids multi-generational living

From The Commercial Appeal in Memphis, Tenn.:

Noél and Stephan Emswiler bought their Bartlett house thinking it would meet their family's every need, current and future.

Then an addition to the household changed everything.

"My mom had a house, but she decided it was becoming too much for her," Noél said. "It was evident that we needed to move her into our house."

There was just one problem: The house's only downstairs bedroom was Noél and Stephan's master suite, and Noél's mom couldn't handle the stairs.

"We obviously had to put her in our first-floor master suite," Noél said.

So in February, the Emswilers consulted Tom Sullivan, owner of Sullivan Home Plans and a certified professional building designer, to help them create a plan for a new third-floor master retreat that took advantage of their copious attic space and provided privacy for them and for Noél's mom.

Sullivan, who has been designing houses for four decades, said the Emswilers' situation is becoming increasingly common, and home design is starting to reflect it.

"Doorways, hallways and turnaround spaces are getting wider," he said. "People who don't have a need for wheelchair access are planning ahead. They figure this is the house they plan on staying in, so one day they're going to need it. It's a very wise thing to do."

It's called "universal design," and it's the wave of the home-planning future.

As of 2008, 16.1 percent of Americans were living in a household with at least two adult generations of family members, or a grandparent and at least one other generation, according to a Pew Research Center analysis of census data.

The rise in multigenerational households has a variety of causes, ranging from the overall aging of the population and the economy to cultural trends. Some aging parents are moving in with children. Some young college grads are moving in with parents, or recently divorced or unemployed children are moving in with parents -- and bringing young children with them.

It means more families are finding themselves in need of homes that serve family members at all ages and stages of life -- the hallmark of universal design.

"Families need areas for kids to play, areas for homework, areas for bills to be paid or work to be done, areas for grandparents to relax away from the kids," said Leslie Shankman Cohn, a registered interior designer with Jill Hertz Interior Design and a specialist in universal design.

Those needs are resulting in changes -- some subtle, some overt -- in the way we live in our homes, but also in the homes themselves.

"We're living more in our homes now," said architect Joey Hagan, a principal with Memphis-based Architecture Inc. "People are spending more time at home, particularly with the economy where it is. And that requires differences in design."

An example is the wide-open kitchen-slash-family room that is a staple in newly built houses and a popular focus for renovations.

"Families want to get together and entertain," Shankman Cohn said. "But along with that, you've maybe got two or three different cooks living in the house, and you're feeding larger amounts of people, so you need a larger kitchen."

Multiple master suites are another design trend that reflects the changing nature of modern households.

"We're seeing a lot of baby boomers whose kids have graduated from college and gotten married and had their own homes, but they've run out of space in Cordova," Sullivan said.

"They can't afford to build that four-bedroom, 4,500-square-foot house, but Mom and Dad don't need that space anymore. So they're moving from their Cordova home into the Germantown home and building Mom or Mom and Dad a mother-in-law wing."

In the past two years, the economy has caused not only an upswing in the number of consolidated households, but also a major halt on new home construction. Hagan said he hopes that when the building industry recovers, new houses still will reflect the hard lessons of the downturn.

"Homes are trending smaller and more functional," he said. "I think people are finally getting away from the McMansions. We're being a lot more efficient with our square footage."

And that includes planning for future accessibility, Hagan said.

"Making sure you have proper turning radiuses in the master bath," he said. "Allowing for better clearance in front of the toilet. Putting blocking in the walls for future grab bars, even if you don't put the bars in now. Using 36-inch doorways.

"You have to think through stuff like that when you build or renovate a house."

Hagan's seeing a spike in empty-nesters who, rather than sinking a lot of money into square footage, are investing instead in smart upgrades that will benefit them for years to come.

Those upgrades include storage solutions that take advantage of dead space, eco-friendly features that offer long-term money savings, and accessible, ground-floor amenities that improve resale by meeting the needs of multiple generations.

"I like to tell people to think about these things regardless of what their life situation is," Shankman Cohn said. "Easy access, wider hallways and doors. Better flow. No steps if possible, but at the very least a flex room plus a bedroom and full bath on the first floor."

The Emswilers hope to complete their 825-square-foot addition by mid-May. In the meantime, the couple has moved Noél's mother into the downstairs master suite and themselves into a second-floor bedroom.

"Prior to this (economic crisis) happening a couple years ago, in bigger homes it was almost a no-no to have just one bedroom down," Sullivan said.

It's a not-so-subtle shift. And it's not going away.

"We'll see more of this in the future, 10 years from now or when the economy gets better," said Shankman Cohn, who agrees with Hagan that building smarter doesn't have to mean building bigger.

"It's not the square footage," she said. "It's the quality of the space that counts."

Thursday, December 30, 2010

Internet sensation Zach Anner named one of 10 finalists in Oprah network's "Your OWN Show" competition.

From TIME's News Feed. You can see Zach Anner's hilarious audition and a TIME interview with him here.

Hey Internet, remember Zach Anner?

Remember? NewsFeed knows it seems like a millennium ago, and maybe it is that long Internet time. But for a brief moment, the Internet fell in love with Zach Anner (pictured), a hilarious guy with cerebral palsy ("the sexiest of the palsies") who entered Oprah's contest to get his own program on her new network, OWN. Anner quickly took the lion's share of votes, and NewsFeed even wondered if he was the next Oprah.

Then, suddenly, we lost contact with Anner. He stopped tweeting in September, and no news surfaced of Oprah's competition. Until now.

Anner has officially been named one of 10 finalists in the network's "Your OWN Show" competition. He came back to Twitter to make the announcement, noting, "[I'm] so excited, my legs are twittering! Stay tuned... walking could be next!"

The competition goes on the air January 7. NewsFeed is rooting for Anner to take the whole thing. Remember, Zach, no Atlantis is too underwater or too fictional.

Capuchin monkeys show promise as service animals for people with disabilities

From Der Spiegel in Germany:

Specially-trained Capuchin monkeys in the US are helping physically disabled people with the housework by performing tasks such as removing garbage, fetching the telephone or switching on the microwave. The furry companions are also helping paraplegics cope with loneliness.

It's her small hands that make Minnie especially useful. Hairy and slender, with slim fingers and black nails, the Capuchin monkey's hands are just right for twisting open a bottle of juice or fetching the telephone. And when Craig Cook's head itches, Minnie comes and scratches it until he feels better.

"She is more human than you would think," Cook says. The 44-year-old American, who has been paraplegic for more than 14 years, runs his stiff fingers lovingly through Minnie's fur as she cuddles on his lap, observing his guest curiously with her large, brown eyes. Then the monkey jumps up and crosses the kitchen of Cook's bungalow at a wild run, screeching and leaping, a bundle of energy wrapped up in dark brown fur.

"Pretty amazing, isn't it?" Cook says, his eyes shining. He has shared his bungalow here in La Habra, near Los Angeles, with the 30-year-old Capuchin monkey for the past six years. They watch Los Angeles Angels baseball games on TV together, or enjoy the California sun from the patio. And when Cook has "one of those bad days," it's Minnie who manages to make him laugh.

"It's wonderful to have an animal like that at home," Cook says. A former engineer and American football quarterback, he broke his spine in a car accident. He's very lucky to have Minnie -- there are only 45 Capuchin monkeys like her in the entire US, and Minnie is one of the best.

Minnie spent several years in training at the Monkey College, a facility run by a Boston-based aid organization called Helping Hands. This unusual school trains monkeys as household assistants and life partners for paralyzed people -- with great success. "The Capuchin monkeys provide independence and the gift of joy and companionship to the recipients, says Helping Hands employee Andrea Rothfelder. "These animals are very affectionate and loving; a lot of recipients call it a little miracle when their monkey moves in with them."

Director of training Alison Payne describes the Monkey College as a "mixture of pre-school and zoo." Helping Hands has a total of 180 monkeys, 50 of them currently being trained in Boston. Here in the three-story center, the monkeys practice using light switches, drawers, bottles and CD players. They learn the actions first in a room with only Spartan furnishings; later they practice in a "teaching apartment" outfitted with a wheelchair, bed, bookshelf and kitchenette.

Trainers drill the monkeys on around 30 commands, including "fetch," for retrieving an object, and "trash," for taking something to the garbage can. "Push" might mean the monkey should shut the refrigerator door, while "open" would achieve the opposite. Motivation for learning tasks is provided with peanut butter and spray can whipped cream.

"The monkeys are naturally curious," Payne says. "We try to expand their attention space." Still, the monkeys are also allowed some time off. Today Chichi and Jessica are romping around the playroom, chasing bubbles. For their classmate Tricia, it's bath day. Trainer Jennifer Evans has filled the kitchen sink with a lukewarm bubble bath, where Tricia is splashing about, poking her soaking wet head over the edge. A few minutes later, the trainer comes over to rub her dry.

"They're very much like two-year-olds," Payne says. Actually, the monkeys are between eight and 10, the ideal age range for drilling and training, when they start at the Monkey College. First, they get used to people by living in foster families. Next come two to four years of training. Once they're housetrained, they can move in with a disabled person.

When Cook began his life together with Minnie, the evening that ruined his life was already several years behind him. On January 12, 1996, the engineer met a colleague for dinner in Los Angeles. The two left the restaurant shortly before midnight. "It was a mild evening, and Tyler wanted to take a drive in my convertible," Cook recalls. As they sped down the highway, Cook's colleague lost control of the 300-horsepower car. The vehicle flipped over and slid down an embankment. Cook's spine snapped instantly; his colleague was barely hurt.

Cook lost everything that day -- his job; his girlfriend, who soon moved out; but above all control over his own body. Unable to adjust to his new life, he found himself sliding into depression. But when a friend heard of Helping Hands, Cook contacted the organization and sent an application video. A couple of months later, Minnie entered his life.

"When the trainers came out here, they stayed for about a week," he recalls. "It was only then that she accepted me as the new king." That's the way of Capuchin monkeys -- they live in groups and choose their leaders with care.

Today, Cook and Minnie are inseparable. "Spoon," Cook says and the monkey fetches one from the silverware drawer. "Sun" -- Minnie turns on the light. "Can you do hand?" -- Minnie hoists her master's arm, which has slipped down from the armrest. He uses that hand to operate his wheelchair.

"Minnie can be lifesaving for me," Cook says. One time, his wheelchair got stuck on the patio as the sun was going down. Cook knew he was facing an entire night sitting in the dark, freezing and getting wet, until his caregiver arrived in the morning. He called Minnie, who brought his telephone. An hour later, help was there. "I had tears in my eyes," Cook says.

"The monkeys can be a lifeline; however, the most important thing of all is the companionship that they bring and this unconditional love," says director of training Payne. "Suddenly you have this little monkey person at home who just thinks that you are the coolest thing ever."

Helping Hands employees tell the story of a veteran who lost both his legs in Iraq. "He says that the monkey is the only one who takes him the way he is and who doesn't notice that he hasn't any legs," Rothfelder says. The monkeys could never take the place of a full-time caregiver, "but they allieviate both the pain and the loneliness of being home alone and also provide some tasks in the house."

It's hardly surprising that the clever Capuchin monkeys are in hot demand, but Helping Hands is only able to provide between six and eight of the monkeys to paralyzed individuals each year. It costs the organization around $40,000 (€30,500) to train a single monkey, all of which must come from donations. The service is free for the patients.

Craig Cook can count himself lucky -- his Minnie has granted him a new life. He remembers clearly the moment when the monkey jumped onto his shoulder for the first time, after five months together. "Suddenly she rubbed her fingers through the back of my hair," he says. "That's the ultimate sign of affection."

Cook estimates Minnie could live another 15 years, but he's loath to think beyond that point. The monkey won a place in his heart long ago.

"Minnie, are you OK?" -- these are the words he'll use to call the monkey tonight, after the caregiver has helped him into bed. And Minnie will answer him, from her cage in the living room, where she rolls herself up beneath a small, light blue blanket.

"And she will go toot toot toot," Cook says. Then he gives a small smile and explains: "That means, 'Everything is all right.'"

NY amputee continues career in U.S. Army

From the Watertown Daily Times:

Sgt. Charles W. Berninghausen (pictured) thought his Army career might be over after an improvised explosive device nearly killed him in Iraq in 2007.

The 27-year-old Brasher Falls native had knocked on the door of a house while leading a night patrol in Ramadi. The blast from an IED planted in a wall next to the door pierced him head to toe with shrapnel and seriously wounded eight others.

His left leg, severely fractured at the ankle, had to be amputated 3 inches below the knee after a series of surgeries and antibiotic-resistant infections that followed.

Nearly four years later, he is the first amputee to have completed the Warrior Leader Course at Fort Carson, Colo.

"It feels good to have done it, but I'm disappointed it took me so long to get to this point," Sgt. Berninghausen said in a telephone interview. "I feel like I'm kind of behind the curve, but it feels good. I got to prove some people wrong."

He said his decision to stay in the Army despite his injury was easy.

While he was recovering at Walter Reed Army Medical Center, Washington, D.C., some colleagues suggested he pursue military intelligence, Sgt. Berninghausen said. He decided to follow their advice.

His choice at first did not sit well with his parents, Mark W. and Barbara E. Berninghausen, Brasher Falls, but they supported him, his father said.

"I was disappointed there were not other opportunities for him in the north country," Mr. Berninghausen said. "But it's not like I could tell him what to do. He doesn't let anything in life hold him back."

Mrs. Berninghausen said her son's decision was easier to take knowing that although he wanted to remain on active duty, he would not return to combat.

"He said he would never put himself in a situation where other people were counting on him to be 100 percent able-bodied," she said. "I think he has opened doors for other amputees. He's done a lot of things that I think he even thought wouldn't have been possible a few years ago."

A review board in June granted Sgt. Berninghausen's request to remain on active duty. He completed the Warrior Leader Course in November.

He said the 36-hour training exercise teaches land navigation and fighting strategies and leadership skills. He had to pass academic challenges and lead a squad in field exercises.

It was his first tactical exercise since his injury. The physical exercise has continued.

"I still have to do PT every morning and train in the field," he said. "It's been kind of a lengthy process from then until now, but I don't generally take no for an answer."

He said the only problem he had was with running, made possible with the help of a prosthesis.

"I fell in some tall grass on the last day and twisted my knee," he said. "It was definitely challenging."

His wife, former high-school sweetheart Megan K. Gendron Berninghausen, daughter of Susan M. Francis and Norman N. Gendron, said she supports wholeheartedly her husband's decision to stay in the military.

"It was hard at first, but seeing how much worse off some of the other people were at Walter Reed made me realize our life wasn't over," she said.

Sgt. Berninghausen has moved on to military intelligence training in Arizona. Once that is finished, he again will be stationed at Fort Carson, where his family awaits the March birth of a second son, a brother for Jacob W., 2.

His wife said he was home for Christmas.

"He'll always, always be my hero and my rock," Mrs. Berninghausen said, her voice breaking. "I don't know where I would be without his strength to get through this. Seeing how determined he was is what really got me through."

Double amputee sues NY strip club over inaccessibility

From Eater NY:

Sometimes a man knows exactly what he wants and fights until it's in his clutches. But sometimes that same man is a double amputee who really wants a lap dance and can't get one because the strip club isn't ADA accessible so he has to file a lawsuit in Federal Court.

Such is the case of one Zoltan Hirsch (pictured), a double amputee who repeatedly tried to visit Lace Gentleman's Club but was not able to enjoy most of their strip club services because it is not wheelchair friendly.

Among other things, Hirsch's lawsuit alleges that Lace doesn't have a wheelchair friendly ramp, lacks a handicapped accessible bathroom, and most importantly, put all of the VIP rooms on a second floor that is only accessible via a staircase, "representing an insurmountable barrier to [Hirsch] and other individuals who use wheelchairs".

The lawsuit only asks that Lace pay all legal fees and make the changes needed to become ADA compliant, because the plaintiff really needs to see some flesh.

NJ eyes legislation that would create inexpensive storage of stem cells

From Town Journal in N.J.:

Filling prescriptions today can be expensive, but imagine being able to remedy 50 to 60 diseases for just $5.

Legislation has been introduced in New Jersey that would add a $5 fee to the cost of a birth certificate for the donation, processing and storage of umbilical cords. The stem cells inside the cords would be used to treat diseases such as leukemia, lymphoma, sickle cell anemia, cerebral palsy, aplastic anemia and various other cancers, blood diseases, hereditary conditions and immune system disorders.

"This promises saving lives," said Assemblywoman Connie Wagner (D-Paramus, pictured), who is the primary sponsor of the bill. "When you've been told nothing else will work, I'd like to know that there is still a chance."

Kate Lee, chair of the Junior League of New Jersey, a women's nonpartisan organization, agrees.

"This is medical waste that can save lives," she said.

New Jersey has always been at the forefront of umbilical cord donations. In 2005, it was the first state with a publicly funded umbilical cord blood and placental stem cell bank and education program in the United States. As of today, New Jersey has one of only 12 programs in the nation for public umbilical cord donations. The New Jersey Cord Blood Bank (NJCBB), located in Allendale, stores the donations.

According to Dr. Dennis Todd of the NJCBB, stem cells are collected from the umbilical cord after the baby's birth, with no danger to the mother or the child. The blood is collected and then delivered to the NJCBB facility to be processed within 48 hours. It is then stored in liquid nitrogen freezers.

Collecting samples of blood cells from umbilical cords isn't a new phenomenon. In 2007, a bill was passed through the Senate that required hospitals and health care professionals to tell women they had the option to donate or store umbilical cord blood and placental tissue. Private donations and storage of blood cords have previously been done in case a family member gets sick, but it's a costly endeavor that could cost up to $2,000 plus an annual storage fee, Todd said.

With this new legislation, the one-time $5 fee would be used to train physicians on how to collect the blood, process it and store it at the NJCBB. Because the bank is public and part of a registry, the donations would be available to anyone in the world.

In addition, because New Jersey has the most diverse population, cord blood donation would hopefully combat the lack of stem cells that can be matched with minorities, Todd said.

Cord blood donations are also more reliable than blood from bone marrow, as the cells are still young and haven't fully developed, yielding to a better acceptance rate by recipients.

Funding for this program was promised at its inception, but never materialized, Lee said. The suggested $5 fee would simply allow the cord blood bank to survive. Regardless, it's still a "no brainer," she said.

The legislation, according to Wagner, has been enjoying bi-partisan support.

"If these programs shut down, a lot of people would not get a transplant to save their lives," Todd said.

"I know times are difficult, but it's a small investment," Wagner says. "I think a $5 investment is worth saving a life."