American Association of People with Disability Daily – Tuesday, 3 December 2013

American Association of People with Disability Daily – Tuesday, 3 December 2013

-------

NATIONAL

Veterans court program helps warriors battle addiction, mental health crises.

The Washington Post (12/2) by Melinda Henneberger

Former Marine Cpl. Eric Gonzales doesn’t remember much about the night last year he led police in Orange County, Calif., on a high-speed, 26-minute chase that ended when he threw his truck into reverse and crashed into the patrol car behind him.

When he finally took his foot off the gas, he was handcuffed and later charged with DUI, evading arrest, assault on a police officer and more.

Still in the Marine Corps at the time, and living at Camp Pendleton, Gonzales’s first court appearance was brief; he argued with the judge and got himself ejected.

But then he finally listened to his counsel: “My lawyer recommended I go to veterans court” — one of a growing number of such programs that oversee criminal cases involving military veterans who were arrested at least partly because of an addiction or mental illness, most commonly depression and post-traumatic stress disorder.

An average of 22 military veterans commit suicide every day in this country, perhaps the best measure of the mental health crisis among veterans. And 130 special courts for veterans in 40 states are tackling that problem.

The first one was started in Buffalo in 2008, modeled on the drug courts that have significantly reduced recidivism rates by substituting treatment and other support programs for incarceration.

Gonzales, who served in Afghanistan in 2009 and 2010, was facing a nine-year prison sentence, so he was eager to opt for oversight from Judge Wendy Lindley’s veterans court in Orange County. He “graduated” from the program in September.

On Monday, the 23-year-old stepped up to a podium in a ballroom at Washington’s Marriott Wardman Park hotel and addressed a crowd of about 900 as the first speaker at the first national training conference for those who work in such courts.

Gonzales, a high school sports star from San Bernardino, had a college scholarship but persuaded his parents to sign the waiver that let him enlist at 17: “I joined the greatest fighting force I could — the United States Marine Corps!” he said, to a big round of hoo-rahs from Marines in the crowd.

But while serving in Afghanistan, he saw the man who had been “like a father” to him blown up by an improvised explosive device. So once he was back home, Gonzales told the crowd, he began drinking heavily and was “shocked at the truth of the beast.” He skipped the specifics but said, “I had fallen off my white horse.”

Through the veterans court, he started to work on his problems instead of masking them: “I did mindfulness, PTSD and exposure therapy — which . . . really do work, actually.”

After he spoke at the conference, a succession of big names did, too: “He’s what it’s all about,’’ retired Army Gen. Barry McCaffrey said of Gonzales. “We’ve got this battle force that kept us safe since 9/11; now we’ve got to stay behind them.’’

After the program, Gonzales’s former drug court parole officer, Bert Eitner, came up to congratulate him.

During his first week in Afghanistan, Gonzales’s base was attacked by a suicide bomber; two Marines were killed. The later loss of his mentor, Sgt. Maj. Robert Cottle, who was killed by a 300-pound explosive device, was hard — as were orders from his superiors that prevented Gonzales from quickly retrieving the body.

“That’s what broke my mind,’’ he said.

After returning home in May 2010, “we’d only discuss when we were drunk who died.”

The veterans court doesn’t take men and women on active duty, Eitner said, “because there’s no point giving them all these services and then letting them go back to deployment.”

“If you mess up,’’ Gonzales said the judge told him, “you’re going to prison.” Instead, he lived in a residential treatment center. He meditated, worked out, did cognitive therapy, underwent exposure therapy — in which he was taken back to his mentor’s death again and again— and attended every 12-step meeting he could.

Asked whether he was tested regularly for drugs and alcohol, Eitner and Gonzales burst out laughing. Six times a week by Eitner alone, Gonzales said, “even though I was already peeing for four other people.”

Since graduating from the program three months ago, he’s back in school, studying audio engineering and getting some work, too, while living with his parents and advocating for the program that he feels saved his life.

Both Gonzales’s problem and his progress are pretty typical of what Eitner sees, he said, in a program that has a recidivism rate of 3 percent. “This guy,’’ Eitner said of his former charge, “was sent someplace no one should ever be sent, but that’s what we do to our kids because they’re good at it. And you can’t strap a gun on every day and have it not affect you.”

---

STATE/LOCAL

Teen's death by cop illustrates failure of mental health system. SunSentinel (12/2) by Ben Wolford

BOYNTON BEACH — There were only so many ways to calm down Michael Camberdella, and his parents had tried them all that morning a year ago.

So as her son's meltdown grew increasingly violent and he went to fetch weapons, Linda Camberdella resorted to her last option. She dialed 911.

The previous two times she called deputies, Michael was calm by the time they arrived. She explained to the cops that although Michael was a teenager, he had the mind of a 5-year-old. His disorders made him volatile, and he was on a waiting list for residential mental-health treatment.

But things were different on Oct. 4, 2012, when Deputy William Goldstein arrived at Camberdella's home. Michael wasn't calm. He wielded a garden pruner and a rubber mallet. Goldstein fired. Linda screamed and collapsed on the lawn. Michael, 18, died by the stop sign, clutching his chest as his father Irving ran outside.

"Save my son!" Linda cried, but there was nothing anyone could do.

In Florida, mental health advocates say resources for parents and mentally ill individuals are tragically lacking. In the vacuum of an adequate system, law enforcement officers become case workers, courts triage the defendants and jails act as hospitals.

"We don't care enough about mental health in this state," said Gary Levine, a social worker in the Broward County Public Defender's Office.

Florida spends a third of what the average state does, $39.55, on mental health for each resident, according to the National Association of State Mental Health Program Directors Research Institute.

Families affected by mental illness know what that small investment feels like, advocates say. The Department of Children & Families estimates that Florida's mental health system meets only 34 percent of adults' mental health needs and 27 percent of children's mental health needs.

Police, jails and desperate 911 calls fill the void.

The Camberdella family declined to comment for this article, as did their attorney, Sean Domnick. Domnick's firm has pursued a wrongful death lawsuit against the sheriff's office on their behalf, a case that's ongoing.

Their story has been compiled from the hundreds of sheriff's office documents produced during the investigation of Michael's death. They reveal some of the efforts the Camberdellas made to get help for their son, as well as their desperation.

Michael was a typically friendly teenager. He attended high school, but his IQ was 47, his family has said. He had autism and several mental illnesses, including bipolar disorder, according to sheriff's office records. Despite his slight, 130-pound frame, he was prone to violent outbursts, once punching a hole through the wall. Another time a few years ago, he broke at least one of his father's ribs, Linda Camberdella said in the investigation.

But Michael acknowledged his own temper and told a deputy he was working on it. To calm down, he often listened to music or played video games.

His family sought residential therapy, but often there are waiting lists, both for beds and for funding. In a 2011 police report, Linda Camberdella told a deputy Michael was in line for a group home.

In the months and days before his death, Michael's health seemed to deteriorate. He fell and injured himself at a Publix and spent time at a hospital. Then his girlfriend broke up with him, and he took it hard. The family sought help from a psychiatrist.

"His depression kicked in," Linda Camberdella told a detective. "He told his doctor that he was having thoughts of suicide."

On the morning he died, he woke up angry. His iPod was missing, and it enraged him. Though the 911 tape was destroyed after 90 days, per sheriff's office policy, the dispatcher's partial quotes, included in a report, narrate Michael's behavior.

"…the son has the mom on a choke lock."

"…he does have a hammer and a tree trimmer."

"…she's saying that he will freak out once a deputy approaches him."

When Deputy Goldstein arrived, those were the things he knew: A crime was in progress.

Like most deputies in Palm Beach County (and unlike most in Broward), Goldstein was Crisis Intervention Team certified, which means he was taught how to defuse tense situations with mentally ill subjects. "The training encourages police to offer a more humane and calm approach to handling these individuals," Sheriff Ric Bradshaw wrote recently.

But as he stood by his car in the street, gun drawn and ordering Michael to drop his weapons, Goldstein's self-preservation instincts took over, he told investigators.

"Pretty much I felt like I was gonna die if I didn't shoot him," he said.

Michael did drop his weapons, but he kept advancing. He reached into his waistband, pulled out something small and black and cocked his arm to throw, Goldstein said.

---

'Quiet' Santa Events a Coup for Autistic Kids. ABC News (12/3) by Joanna Prisco

The twinkling lights, booming carolers and long lines of kids waiting to sit on Santa's knee are all part of an annual ritual for some mall-goers. But for children with autism, those same holiday staples can be overwhelming triggers for stress.

"Our son, Jackson, is severely affected by autism and is nonverbal with multiple other special needs," said J-Jaye Hurley, who lives in Atlanta. "We had not been able to get a picture with Santa since he was 2."

Fortunately, in the past few years, more and more shopping centers are beginning to offer alternative events for families who have children with special sensitivities, or needs. When Hurley learned of the Caring Santa program in the Noerr, Abilitypath and Simon Malls near her home, "for the first time, our family was able to visit Santa, get a great pic, and Jackson really was relaxed and happy to be there," she said. This year will mark the Hurley's third trip to see St. Nick.

The Caring Santa program and other similar series around the country, such as Silent Santa or Sensitive Santa, strip down the typical meet 'n' greet with Mr. Claus to something straightforward and peaceful. The result is quieter, with smaller crowds and less stimuli.

"There's no reason why ASD [autism spectrum disorder] children shouldn't be able to have the same opportunities as other kids, and this gives them the chance to participate in a holiday custom," said Dr. Max Wiznitzer, a neurologist specializing in autism at University Hospitals' Rainbow Babies and Children's Hospital in Cleveland. "If you remove the excessive sensory input for the children, their behavior will be better, they will get more out of it and it's a win-win."

According to U.S. Centers for Disease Control and Prevention, one in 88 children is on the autism spectrum. Awareness has lead to increasing modifications at movie theaters, theme parks and other social activity locales to limit sensory overload.

The same considerations can be made when approaching the holidays, said Wiznitzer.

"If you're going to go to a church service, holiday party or shopping, you need to create gradual exposure to the songs that will be played, or offer earplugs," he said. "There are going to be lots of strange noises and people coming through, so part of it is also keeping things quick. Don't spend three hours at your events. Recognize when the child's had enough so that it doesn't lead to meltdowns, tantrums and negative impressions from other people."

For Hurley, who is also an autism response team coordinator for Autism Speaks, an autism science and advocacy organization, keeping those kinds of tips in mind and seeking out sensitive environments such as Caring Santa has made a significant difference in her overall holiday experience.

"Not all children with autism need a program like this," she said. "But for so many families like mine, we are very thankful."

---

INTERNATIONAL

Disability History Month: Unpacking medieval myths. BBC News (12/3) by Emma Tracey

Delving into disabled people's social history can help us understand modern attitudes to disability, argues Richard Rieser, coordinator of the UK's annual Disability History Month.

Richard Rieser, former teacher and equality champion, says the aim of Disability History Month is "to celebrate the achievements of disabled people, to look at the disablism and oppression that we've been subjected to over time in all sorts of cultures and to argue for the full equality that we are entitled to under human rights legislation".

With the Fourth DHM in full swing, physically disabled Rieser shares his controversial views on disability studies degrees, disabled people in the current political climate and why DHM is important in 2013.

What does the DHM logo mean?

Our symbol is the black triangle that people, including many disabled men and women, had to wear under the Nazis to designate that they were unsociable. We've turned it around to reclaim it and surrounded it with a yellow circle and our slogans.

It's reclaiming the worst part of our history, when more than a million disabled people were murdered in Europe between 1937 and 1946.

When did you become interested in the history of disabled people?

I first got involved in 1990, when I wrote a book about it for the Inner London Education Authority. Parents were demanding something about the history of disabled people in the area, because lots of equality work had already been done on race, gender and class.

Then in 1994, I ran a conference with Save the Children on why writers, cartoonists and anyone who portrayed children either left disabled kids out completely, or their characters with disabilities were negative. We explored where those stereotypes came from.

It seemed a shame that this and other work had been done but was not being applied anywhere. Disability History Month is a good platform for it.

Don't disability studies courses teach people about the history of disabled people?

Rieser - focusing on the practical

One of my concerns with disability studies degrees, is that most of what people are learning about can't be turned into concrete knowledge to improve the general public's understanding of disability. It seems to be very much about phenomenology and post-modernism, which pass most people on the street by.

I don't mind if that's the theoretical framework people use but they should be coming out (of the course) able to say, "the accessibility of transport networks has improved for disabled people by this much", or that it hasn't.

Nobody seems to be interested in that sort of practical research. In a way, Disability History Month is a conduit for people who want to publicise the practical effects of their research into the lives of disabled people.

How does DHM publicise such research?

This year we did a series of eight interviews with medieval historian Irina Metzler, where she unpacks some of the myths about the way disabled people were treated during that period. The stereotype was that disabled people were saints, or sinners whose only redemption was to go on pilgrimage to holy shrine. There's written evidence of 550 miracles in that period but there's also evidence that the vast majority of pilgrims returned in the state that they went.

What was the real situation for disabled people in medieval times?

Metzler says that disabled people were just part of the community. There was a very strong Christian charitable notion towards us. The local community supported people who couldn't fend for themselves and as a fall back, there were monasteries, convents and churches which provided support. This system broke down with the Reformation. When the care of disabled people passed to the state, from the first poor laws in 1388 onwards. You see this distinction between the worthy poor and the unworthy poor. As we were the worthy poor, it was always thought that many of us were faking it. It's a theme that you can see in The Sun and other newspapers today.

Why does DHM take place between 22 November and 22 December?

It was about finding a space in the calendar. We thought we'd have an irregular month, from the third week of November up to Christmas. The period covers International Aids Day on 1 December, the International Day of Disabled People on 3 December and International Human Rights Day on the tenth.

How did DHM get started?

Back in 2010, the organiser of LGBT History Month and the advisor on race equality suggested to me that we also needed a Disability History month. I put out feelers and within a very short time, 24 organisations including the TUC, disability coalitions and Scope, said they'd support us.

We held our first event at the Institute of Education, where we launched an oil painting on the history of the struggle for inclusive education. The concept was just then coming under attack, with the government challenging the bias towards inclusion. We can now say, four years on, that there has been a real attempt to force (disabled) people out of mainstream schools and colleges.

Why 2010?

Because of the change of government. Not that New Labour were particularly good but at least we had the commitment from the cabinet office, the Prime Minister's report on the position of disabled people and the setting up of Equality 2025, which provided a target date to reach full equality for disabled people. As soon as there'd been a change of government, all of that was pushed out of the way.

We needed to gather people together to help them understand the huge struggles that we as disabled people had gone through to get any modicum of equality, including 17 attempts to get the disability discrimination act into law. We needed something for people to realise that the job hadn't been done yet and that we still needed to go on struggling. And we wanted to analyse where the negative attitudes (towards disabled people), still very prominent in society, came from.

Why did you choose independent living this year?

We felt that with all the cutbacks taking place, both in local authority and central government funding, the struggle for independent living needed to be better understood by a wider number of people. They need to know what's at stake for disabled people if their support gets taken away.

What will 2014's theme be?

We think that next year we're going to look at portrayal over periods of time, including pictures, architecture, sculpture and moving image media.

How has DHM progressed since 2010?

All sorts of people around the country are putting on Disability History Month events. There are 60 listed on our website for 2013, in 2012 there were 80.

The amount of interest depends on which unions and big organisations get involved. Last year, the National Union of Students became very involved. This year, the National Union of Teachers sponsored some work we did to help raise issues of disability in the classroom, which is now on their website.

How can people celebrate Disability History Month?

We are just a group of people making this happen. We get no funding and we don't have the energy or resources to organise lots of events all over the country.

If you decide to put on an event, we'll list it on the website and we can provide you with posters, broadsheets, postcards, badges and speakers.

Follow @BBCOuch on Twitter and on Facebook, and listen to our monthly talk show

---

Awareness-raising calendar

January, Holocaust day and events around that

February is LGBT history month

March is International Women's Month

June is Travellers Month

October, Black History Month

Two weeks of anti-bullying awareness-raising at the beginning of November

---

Disability History month themes

2010, education

2011, disability struggles of the past

2012, hate crime

2013, celebrating our struggle for independent living: no return to institutional isolation

---

More disability history features

Arthur MacMorrough Kavanagh

The sword-thrower with no limbs (May, 2013)

The deaf astronomer and the 'dark body' (Nov, 2012)

Arthur MacMorrough Kavanagh (Nov, 2012)

Was Tamerlane disabled? (Nov, 2012)

Enrico Dandolo and the way history overlooks disability (Nov, 2012)

---

Mental health activist wants U.S. vice-president to intervene in Ellen Richardson case.

Toronto Star (11/29) by Valerie Hauch

A Toronto mental health activist wants U.S. Vice-President Joe Biden to get involved in the case of a city woman whose mental health medical record prevented her entry to the U.S.

The case of a Toronto disabled woman who was denied entry to the U.S. and missed out on a 10-day cruise because a 2012 “mental health episode’’ came up on the computer of a U.S. border agent has spurred long-time mental health issues advocate Bill Wilkerson into action.

The Toronto chair of Mental Health International is getting a letter he’s written hand-delivered to U.S. Vice-President Joe Biden on Monday, in which he’s asking Biden to get involved in the case of Ellen Richardson who has been “locked out of America.’’

Richardson, who suffers from clinical depression, “exhibits courage to be celebrated, not persecuted,’’ says Wilkerson, who suggests that Biden find out what “policy and training questions’’ need to be addressed so situations like this don’t occur again.

He thinks police should create a separate “public health’’ database so that information from non-criminal investigations, like attempted suicides, are not put into the same database that is shared with U.S. authorities.

Information from police investigations, even non-criminal events like suicide, can go into the Canadian Police Information Centre (CPIC) a central police database. The CPIC database is managed by the RCMP, which shares it with the FBI.

Richardson’s MP, Mike Sullivan agrees there should “be limits’’ on what police share that is not related to criminal activity, like mental health information gathered in response to something like an attempted suicide.

“And what about all those cardings’’ that police do in Toronto?’’ Sullivan asked, wondering if that information is also going into a police database.

“Canadians do have a greater sense of personal privacy than in the U.S.,’’ he said.

Richardson, a paraplegic, had been admitted to hospital in June 2012 for treatment of clinical depression following a “half-hearted’’ suicide attempt in 2012 related to a personal relationship break-up. Richardson had taken a few pills but then stopped herself. Her mother called 911 and she was taken to hospital. She had also written a suicide letter which, she says, her mother has told her was turned over to police.

She had previously made a more serious attempt at suicide in 2001, as a result of delusions, and later wrote about this experience in a book published in 2008.

But the only incident mentioned by the U.S. border agent was the one in 2012, says Richardson, who was told that because of the “mental illness episode’’ — noted in a document handed to her by the border agent — she would need a medical evaluation by one of only three Ontario doctors, approved by U.S. authorities, before she could cross.

From 2001 to the 2012 incident, Richardson says she had been on medication that had kept her stable. And since being treated for clinical depression following the 2012 incident, her condition has again stabilized.

Ontario’s Privacy Commissioner Ann Cavoukian has launched an investigation into how information about Richardson’s mental health record came to the attention of a U.S. Customs and Border Protection agent when she went to Pearson airport.

“My office will investigate this matter vigorously to ensure that the personal health information of Ontarians is not being disclosed in a manner that contravenes Ontario’s health privacy legislation,’’ Cavoukian said Friday.

MPP France Gélinas, NDP health and long-term care critic, had written to Cavoukian, asking for the Information and Privacy Commissioner to look into the case of Richardson, after reading a Toronto Star story.

Cavoukian also said that her office has contacted “the Ministry of Health and Long-Term Care to confirm that there has been no disclosure of personal health information to the U.S. Customs and Border Protection by health information custodians in Ontario.

A spokesperson for provincial Health Minister Deb Matthews told the Star that no Ontario health record information is shared. “U.S. authorities do not have access to medical or other health records for Ontarians travelling to the U.S.,’’ said Samantha Grant, Matthews’ press secretary, adding that she could not provide any further information.

A spokesman for the Office of the Privacy Commissioner of Canada said the federal office is looking into it to determine “next steps. To be clear, at this point we have not launched an official investigation,’’ said Scott Hutchinson.

---

Entrepreneurship on Wheels: The Story of a Café for Albanian Youths with Disabilities. Huffington Post (12/2) by Saskia Bruysten

On a Saturday morning, Suela, like every other young twenty-something Albanian, has plans for the weekend. In a nation addicted to coffee, one of her favorite pastimes is having a drink with a friend in one of Tirana's hundreds of cafes.

However, getting there is challenging for a young woman in a wheelchair.

Around 137,000 people in Albania are affected by disability, which amounts to approximately 4.3% of the country's population. Young people with disabilities in Albania face many problems including mobility, stigmatization and isolation.

Albania is one of the poorest countries in Europe. While economic growth over the last decade has markedly improved the quality of life in urban areas, provisions for people with disabilities still lag behind.

According to the World Bank, disabled people in Albania face serious problems accessing quality services with trained staff. They also suffer from isolation and solitude, stigmatization, unemployment and poverty. The public system simply fails to accommodate for the unique needs of the disabled people; accessibility is difficult in public places and the education system still uses obsolete methods.

Suela and her friends decided to do something about it. They want to create a café in Tirana where young people with disabilities can also enjoy opportunities to work, easily and comfortably socialize with friends and enjoy cultural activities.

Furthermore, the café should foster the spirit of inclusion and to create an opportunity for non-disabled people to appreciate how joyful, inspiring and unique the life of a disabled person can be.

The business concept for E Jona Café was born.

E Jona will be built purposely in order to be accessible for both disabled and non-disabled young people, offering a range of attractions such as the display of artwork and craftwork, musical performances, theatre evenings, jewelry making training, sign language and braille courses, etc.

The café will serve cakes, cookies, sandwiches and other light snacks, as well as a range of barista coffees, teas and soft drinks.

Furthermore, the shop will employ six young people with disabilities to work as managers, bartenders, waiters and helpers. The profits earned by E Jona will be reinvested into improving the program of events at the café.

Armed with a business plan, Suela and her friends applied to the National Social Business Competition hosted by Yunus Social Business Albania, the local office of Nobel Peace Prize Laureate Muhammad Yunus' social business incubator fund. The business plan beat off tough competition from more than 50 other contestants to win the competition. The final was even featured on Albanian national TV.

E Jona has been approved for investment from YSB. It is currently fundraising for $45,950 start-up capital on YSB's partner website. Kiva is a platform where anyone from around the world can lend to social entrepreneurs and microfinance borrowers with amounts as little as $25. Each loan has a schedule detailing the dates when the entrepreneur will pay back the loan in installments. Lenders can receive repayments into their online account, which they can use to invest in other entrepreneurs.

In the meantime, an airy premise on a trendy street in Tirana has been rented and renovations are going full speed ahead.

Suela is looking forward to the day the café opens. It will be a place open for all young people, wheels or no wheels.

Lend to E Jona here.

Follow E Jona here.

Find out more about Yunus Social Business here.

Follow Saskia Bruysten on Twitter: www.twitter.com/saskiabruysten

---

How India's Miss Wheelchair winners are overcoming challenge. BBC News (12/3) by Vikas Pandey

Neenu Kewlani is a communications professional and works for disability rights in India.

To secure more rights for people with disabilities, she makes frequent visits to courtrooms where the world of beauty contests is but a dream.

But the first Miss Wheelchair India contest in Mumbai in late November changed much of that.

She found herself amid the humdrum of the green room, glitter of the stage and the usual chatter one associates with a beauty pageant.

But there were some marked differences - the stage was much smaller than the ones set up for Miss India pageant and the contestants were treated as winners even before the event started.

Ms Kewlani's reply is an emphatic "no" when asked if the smaller stage and venue dimmed the importance of India's first Miss Wheelchair contest.

"Nobody really cared about how many people attended the event or how big the stage was. It was a night to celebrate the courage and fighting spirit of the contestants. We all won that night."

She says that her "rich and challenging" life has taken another positive turn after winning the contest.

"Polio made me wheelchair-bound early on in life but I never saw it as a disability and worked hard to be trained as a media professional like other normal people in the country.

"And winning the pageant is just another way of showing that disability cannot stop you from feeling and looking beautiful," the 41-year-old says.

Divya Arora feels her first runner-up crown has strengthened her belief that "beauty is boundless".

Ms Arora, who earlier worked for a leading newspaper, says her faith that "disability can never overshadow her beauty and abilities" helped her do well in the pageant.

'Unique idea'

The contest is the idea of tax consultant Sounak Banerjee whose life changed in 2006 when muscular dystrophy forced him to use a wheelchair to get around in the bustling city of Mumbai.

Mr Banerjee liked watching Bollywood films and TV shows but often found the absence of people with disabilities in the entertainment industry "disturbing".

"Disabled people are also consumers of the entertainment industry but they are seldom represented," he says.

He then came up with the idea of the Miss Wheelchair India contest to fill the gap and provide a platform they could call their own.

Planning the event was tough due to a lack of funding and human resources, he says but adds that the struggles were forgotten when the final day approached.

"I felt satisfied and happy when I saw these women wearing their best costumes and a winning smile. It all came together nicely in the end - I had done something for these courageous contestants," he says.

"I found the contest very unique because it honoured beauty irrespective of contestants' physical disabilities," says scientist Gopika Anand, 31, who won the second runner-up crown.

Ms Anand met with a road accident while studying engineering and was soon confined to a wheelchair. But she persevered, completed her course and found work as a scientist at a leading consumer manufacturing firm.

Shelly Bhutani, another contestant, hopes that the corporate world will take notice of the event in the future.

"I feel we too deserve to be in front of the camera and get brand endorsements like Miss India winners," she says.

Ms Arora, however, felt the organisers were not well prepared for the event and did not provide the kind of support she had hoped for.

Mr Banerjee accepts that a lack of sponsorship made the job of organising the event tough.

"I agree that there were problems at the event. We will work harder and hope that more people will support the event next year," he says.

But other contestants want to see change at a more basic level.

India is not known to be a disabled-friendly country as most public places, monuments and buildings do not have facilities catering to their specific needs.

Bhavna Sharma, who won the contest in a category that honoured people who are disabled but not necessarily confined to a wheelchair, says citizens with disabilities do not feel inferior and have achieved success in almost every field.

"But it's the country's poor infrastructure for disabled people that lets us down," the 27-year-old says.

'We are fighters'

Some years ago Neenu Kewlani travelled all over India in a chauffer-driven car to highlight the problems faced by those with physical challenges while commuting.

She says the problem is even more severe in rural areas and smaller towns where people with disabilities are virtually confined to their homes. Nearly every contestant expressed concern over a lack of sensitivity about disability rights.

But not one of them is willing to give up hope.

Ms Kewlani says there is a long way to go in making India a disabled-friendly country but "we are not ready to give up as we are fighters".

"Facilities are improving in cities but we will continue to put pressure on governments to ensure they provide better opportunities and infrastructure for the disabled," she adds.

Calcutta-based Sarmistha Sinha says disability rights activists will have to continue fighting like other marginalised sections of the society.

An accident in 2006 confined the 41-year-old doctor to a wheelchair, but she says her "thoughts and ability to stay positive remained free".

Ms Sinha won in a category which honoured married women in a wheelchair. But winning was not everything for her as she wanted to use the platform to showcase her talent.

The wheelchair dancer saw the contest as an opportunity to present her skills and meet people like herself from all over the country. "I only wanted to dance as such opportunities are rare but the feeling that I have won a beauty pageant is slowly sinking in," she adds.

For Gopika Anand the real winning moment came when she saw her father's moist eyes as the results were announced.

"I was overwhelmed to see her with the crown. I am very proud today to be recognised as Gopika Anand's father," says Anand Mohan.

BBC Monitoring reports and analyses news from TV, radio, web and print media around the world. For more reports from BBC Monitoring, click here. You can follow BBC Monitoring on Twitter and Facebook.

---

CULTURE/MEDIA

Meet the sign-language interpreter who's translated at concerts for Jay-Z, Bruce Springsteen and Marilyn Manson. Mail Online (11/29)

Holly Maniatty studied sign language at Rochester Institute of Technology and decided to make a career out of translating

The Portland, Maine native now spends half of her year traveling the country to perform as an interpreter for the deaf at live concerts

She has translated at concerts for Bruce Springsteen, Eminem, Mumford and oOns, Jay-Z, Marilyn Manson, U2, the Beastie Boys and Wu-Tang Clan

Holly Maniatty creates music — for the deaf.

Teaming American Sign Language with dance moves and body language, she brings musical performances alive for those who can't hear. Her clients are a who's who of rock, pop and hip-hop: Bruce Springsteen, Eminem, Mumford and Sons, Jay-Z, Billy Joel, Marilyn Manson, U2, Beastie Boys and Wu-Tang Clan, to name a few.

Along the way, videos of her fast-motion, helter-skelter signing have become popular online. There's the video of Springsteen jumping down from the stage at the New Orleans Jazz Fest and joining Maniatty and another interpreter. There, he dances and signs to 'Dancing in the Dark'.

'Deaf people were commenting, "Oh, the Boss knows he has deaf fans. That's awesome,"' she said. 'When artists connect with their interpreters, they also connect with their deaf fans.'

In another video, rap artist Killer Mike approaches Ms Maniatty in front of the stage after noticing her animated signing.

'I've never seen that before,' he says to her before challenging her to sign a profane phrase, which she does wholeheartedly as the crowd hoots and hollers.

At a Wu-Tang performance, Method Man took notice of her signing, came down from the stage and joined her.

'He said, "That's dope," and gave me a hug and a fist pump,' she said.

This month, she found herself at New England's largest drag queen show, signing as performers from all over sashayed down the runway and lip-synched to booming music.

Oscar-winning actress Marlee Matlin, who's deaf, took to Twitter this year when she saw a video of Ms Maniatty performing at the Wu-Tang show: 'Wu tang interpreter is rapping in sign BIG time!!'

The 33-year-old, who lives outside Portland, learned sign language while studying it at the Rochester Institute of Technology in New York. She decided to make a living of it despite counselors' advice against it.

She works for a company that connects deaf people with other people over videophones that are connected online to computers or TVs. But from mid-April to mid-September, she travels for paid gigs interpreting all types of music — hip-hop, rock, jazz, country, gospel, rap.

It's hard work. To prepare for concerts and festivals, Ms Maniatty studies the musicians for whom she'll be signing. She learns their lyrics, their dialect, their every move.

Jay-Z, for instance, is open and boisterous on stage, while Eminem slouches and drops one of his shoulders.

'As much as you're able to study those movements and incorporate them into your interpretation,' she said, 'you really breathe that artist in, and it's more authentic for people'.

---

VIDEO (Not captioned): Museum hosts touch tour for blind people. The Washington Post (12/3)

<iframe width="480" height="290" scrolling="no" src="http://www.washingtonpost.com/posttv/c/embed/1c956eb4-9753-4530-b700-253f215379d9" frameborder="0" allowfullscreen></iframe>

---

RESEARCH/STUDIES

‘Love Hormone’ Shows Promise For Autistic Kids. Disability Scoop (12/3) by Michelle Diament

New evidence suggests that a nasal spray of a naturally-occurring hormone may help improve socialization among children with autism.

In the first study of its kind, researchers say that a single dose of the hormone oxytocin enhanced activity in areas of the brain associated with social tasks and could help make interactions with others more rewarding for kids with autism.

The findings published Monday in the Proceedings of the National Academy of Sciences come from a study of 17 children ages 8 to 16 with the developmental disorder who were randomly given a nasal spray containing the hormone or a placebo. The kids were then asked to complete a social task — identifying a person’s mental state by looking at pictures of their eyes — and a non-social task — categorizing pictures of cars.

Researchers used functional magnetic resonance imaging, or fMRI, to assess the children’s brain responses during the activities.

“We found that brain centers associated with reward and emotion recognition responded more during social tasks when children received oxytocin instead of the placebo,” said study co-author Ilanit Gordon of the Yale Child Study Center. “Oxytocin temporarily normalized brain regions responsible for the social deficits seen in children with autism.”

Meanwhile, the study found that taking oxytocin may help those with autism distinguish between social and non-social stimuli, with kids who received the hormone showing a decrease in activity in certain areas of the brain when they saw objects as opposed to people.

The double-blind, placebo-controlled study is the first to assess the impact of oxytocin on brain function in children with autism, researchers say. Preliminary findings were presented last year at the International Meeting for Autism Research in Toronto.

Oxytocin is often called the “love hormone.” It naturally occurs during childbirth, helping mothers bond with their babies, and in other circumstances

While the findings are promising, researchers said that further study is needed and much remains unknown about oxytocin including whether or not it is safe to use for extended periods.

The best application for oxytocin may not be as a long-term treatment for children with autism, the researchers said, but rather as a tool to use during behavioral and other therapies to maximize effectiveness of the treatments.

---

Original study: here

Oxytocin enhances brain function in children with autism

Ilanit Gordona,b,1, Brent C. Vander Wyka, Randi H. Bennetta, Cara Cordeauxa, Molly V. Lucasa, Jeffrey A. Eilbotta, Orna Zagoory-Sharonc, James F. Leckmand, Ruth Feldmanb,c,d, and Kevin A. Pelphreya

Author Affiliations

Edited by Leslie G. Ungerleider, National Institute of Mental Health, Bethesda, MD, and approved November 6, 2013 (received for review July 8, 2013)

Significance

This article presents our discovery that intranasal administration of oxytocin enhances activity in the brain for socially meaningful stimuli and attenuates its response to nonsocially meaningful stimuli in children with autism spectrum disorder (ASD) as measured via functional MRI. We also identified a relationship between changes in salivary oxytocin following administration and enhancements in brain function. These discoveries are particularly important given the urgent need for treatments that target the core social dysfunction in ASD. The functional neural attunement we demonstrated might facilitate social learning, thus potentially bringing about long-term change in neural systems and subsequent behavioral improvements. Our results illustrate the power of a translational neuroscience approach to facilitate the development of pharmacological interventions for neurodevelopmental disorders like ASD.

Abstract

Following intranasal administration of oxytocin (OT), we measured, via functional MRI, changes in brain activity during judgments of socially (Eyes) and nonsocially (Vehicles) meaningful pictures in 17 children with high-functioning autism spectrum disorder (ASD). OT increased activity in the striatum, the middle frontal gyrus, the medial prefrontal cortex, the right orbitofrontal cortex, and the left superior temporal sulcus. In the striatum, nucleus accumbens, left posterior superior temporal sulcus, and left premotor cortex, OT increased activity during social judgments and decreased activity during nonsocial judgments. Changes in salivary OT concentrations from baseline to 30 min postadministration were positively associated with increased activity in the right amygdala and orbitofrontal cortex during social vs. nonsocial judgments. OT may thus selectively have an impact on salience and hedonic evaluations of socially meaningful stimuli in children with ASD, and thereby facilitate social attunement. These findings further the development of a neurophysiological systems-level understanding of mechanisms by which OT may enhance social functioning in children with ASD.

Footnotes

1To whom correspondence should be addressed. E-mail: ilanit.gordon@yale.edu.

Author contributions: I.G., J.F.L., R.F., and K.A.P. designed research; I.G., R.H.B., C.C., and M.V.L. performed research; O.Z.-S. contributed new reagents/analytic tools; I.G., B.C.V.W., J.A.E., O.Z.-S., and K.A.P. analyzed data; I.G. and K.A.P. wrote the paper; and J.F.L. was the medical doctor in charge of the study.

The authors declare no conflict of interest.

This article is a PNAS Direct Submission.

This article contains supporting information online at www.pnas.org/lookup/suppl/doi:10.1073/pnas.1312857110/-/DCSupplemental.

Freely available online through the PNAS open access option.

---

HEALTH

Baby with disability denied heart transplant. CNN (11/30) by Elizabeth Cohen

The mood in the room was somber as five doctors, a nurse, and a social worker pulled their chairs around the table and turned to address Autumn Chenkus and Charlie Higgs.

The couple's 5-month-old son, Maverick, was down the hallway fighting for his life, and the doctors explained there was nothing they could do to help him.

"Take your baby home and love him for the time he has left," Chenkus and Higgs say the doctors told them.

They asked how long their son had left to live. About six months, they remember the doctors telling them.

Higgs wept, but Chenkus felt like she'd cried enough in the past five months for a lifetime. She was like a rock now, and after the meeting with the doctors she went directly back to her son's room without shedding a tear. In a chair next to his hospital crib, she opened her laptop and hoped the Internet might have clues for how to keep her baby alive.

Maverick was born with a severe heart defect, and even after two surgeries was in heart failure. Doctors had discussed a heart transplant with Maverick's parents, but at the meeting they said he didn't qualify for a new heart because he had a rare genetic defect that put him at a high risk for tumors and infections. A heart transplant would be too risky, they explained.

As Chenkus did her research on Maverick's genetic condition, she couldn't believe her eyes. Not one of the studies she read mentioned anything about an increased risk for tumors or infections. She e-mailed one study's author, and he confirmed she was right.

Now they'll do the transplant for sure, she told Maverick's father excitedly. Our son doesn't have to go home and die.

But it didn't matter. The doctors still refused to give Maverick a new heart.

At first, Maverick's mother was confused, but then she said it dawned on her: This supposed propensity for infections and tumors was a smokescreen.

She felt the real reason the doctors were denying their baby a life-saving transplant was that children with Maverick's genetic condition grow up to have disabilities. They don't want to give Maverick a heart because he won't grow up to be "normal," she thought.

At another meeting, she looked one of the doctors in the eye.

"You're discriminating," she said.

"That's ridiculous," she remembers the doctor responding.

"You don't want to waste a heart on him," Chenkus replied. "You're trying to play God, and you're lying to me."

What happened next is the subject of a federal investigation and has pitted a family against the very doctors who were supposed to save their baby's life.

"They're blowing smoke up my butt"

There are few hard and fast rules to guide doctors as they select who will get a transplant, effectively selecting who will live and who will die.

And there's no question some will die. Last year in the United States, 321 people, including 19 infants, lost their lives while waiting for a new heart. Right now, some 3,500 people await a heart transplant, and the situation is only getting more desperate as the waiting list grows but the number of donors remains about the same.

In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart.

"We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

These decisions are, to some extent, subjective, as doctors sometimes disagree with each other about who should get an organ. Over the years, medical ethicists and patient advocates have accused transplant physicians of discriminating against one group in particular: the disabled.

"We absolutely know this happens. It's a huge problem," said David Magnus, director of the Center for Biomedical Ethics at Stanford University. "It's real people sitting in a room making these tough decisions, and it's not surprising their own prejudices and biases influence them."

He points to the case of Amelia Rivera, a New Jersey girl with disabilities who was denied a kidney transplant last year, and to a survey he conducted in 2008 showing that more than four out of 10 pediatric transplant centers say they always or usually consider a child's neurodevelopmental delays when making a transplant decision, even though studies have found children with these delays fare just as well medically after a transplant as other children.

In the past when transplant doctors rejected patients with disabilities, they were often explicit about why.

"We do not feel that patients with Down syndrome are appropriate candidates for heart-lung transplantations," doctors wrote in 1995 to a patient named Sandra Jensen, according to a newspaper article at the time. An uproar ensued and Jensen got a new heart.

Now families and advocates say to avoid adverse public reaction, doctors are shrouding their transplant denials in medical excuses that some say are outright lies in order to avoid transplanting patients who will never be "normal."

Karen Corby said doctors have given her one reason after another for refusing to give a transplant to her son, Paul, 24, who has autism, and she doesn't believe any of them.

Corby, who reached out to three hospitals for a heart transplant for her son, said doctors have told her Paul wouldn't be able to manage the complicated drug regimen after his transplant. Corby, 47, explained that she lives with her son and directs his care, and if anything were to happen to her, he has "Team Paul," his sister and six aunts and uncles.

She was also told transplant medications could have potentially harmful interactions with Paul's psychiatric medications. She responded that Paul's psychiatrist said he could easily switch to other drugs.

Doctors also said they worried Paul might not be able to let anyone know if he felt sick after the transplant. Karen replied that her son, who graduated from high school and has taught himself to program computers in several languages, is completely verbal and had alerted her a few years earlier to subtle symptoms that ended up being a stroke.

"To be blunt, I feel like they're blowing smoke up my butt," she said.

Ari Ne'eman, president of the Autistic Self Advocacy Network, agreed that doctors sometimes "blow smoke" at patients with disabilities.

"Doctors give faux medical reasons. On further scrutiny, they don't stand up," said Ne'eman, who wrote a policy brief on the issue. "When someone with a disability is looking for a transplant, discrimination is the norm."

Transplant doctors said they don't discriminate against people with disabilities, but that disabilities need to be considered when making transplant decisions.

For example, Taylor, a heart transplant cardiologist at the Cleveland Clinic, said physicians must weigh whether a patient -- any patient -- is willing and able to follow complicated post-transplant medication directions. If the patient doesn't follow doctors' orders, the body could reject the new organ.

"If I were to go in front of the transplant committee, they'd want to stop and see if I'm some pompous doctor who's not going to listen to instructions," he said. "That has to be taken into account."

Maverick's story: New York

Early in her pregnancy, Chenkus and her boyfriend, Higgs, sat on the floor of a Barnes and Noble store poring through baby name books, unable to agree on a boy name.

Higgs suggested "Maverick," like Tom Cruise's fighter pilot character in the movie "Top Gun." Chenkus balked and kept searching.

But after a while, she warmed up to the unusual name and it was settled: Maverick Banks Higgs, his middle name for the street in the rural South Carolina town where Chenkus, now a hairstylist, and Higgs, now a lawyer, met when they were 12 years old.

At an ultrasound a few months later, Chenkus was grateful they had chosen a fighting name for their son. The scan showed he had a severe heart defect, and doctors gave the couple three options: terminate the pregnancy; give birth to Maverick and let him die, which would happen within days or weeks; or give him a series of three surgeries.

Maverick's parents chose the surgeries and met with doctors at New York-Presbyterian Hospital in Manhattan. At first they enjoyed a good relationship, but then, as Chenkus put it, things got ugly.

The couple said they wanted the hospital to talk to CNN about Maverick and agreed to waive their son's privacy rights, but a spokeswoman for New York-Presbyterian said it would be inappropriate to comment on Maverick's case.

The hospital issued this statement: "New York-Presbyterian's transplant teams have evaluated thousands of patients for lifesaving transplants over the past 40 years. These evaluations are conducted with compassion, and include the input of physicians, nurses, social workers and psychiatrists who bring the best ethical, medical and scientific principles to the process."

On September 29, 2012, Maverick was born with hypoplastic left heart syndrome. He had his first surgery when he was 4 days old at Morgan Stanley Children's Hospital, a part of the New York-Presbyterian system. The surgery didn't go as well as the doctors had hoped. By Christmas, Maverick was in the intensive care unit.

As Maverick's condition worsened, doctors decided to perform a second surgery several months ahead of schedule. That surgery didn't work, either.

Maverick was running out of options.

On March 18 of this year, the medical director of the hospital's transplant program sent Chenkus a letter saying Maverick was "an eligible transplant candidate." Maverick's parents were elated.

But two days later, everything changed.

On March 20, the doctors called Maverick's parents into a hospital conference room and told them they had just received the results of a genetic test showing Maverick had Coffin-Siris syndrome. Chenkus said the doctors went into detail about how because of this syndrome Maverick would grow up to have intellectual disabilities and developmental delays.

According to a recent study, babies with Coffin-Siris sit, walk, and speak later than other children on average. They have cognitive delays ranging from mild to severe and are often small for their age and have difficulty feeding, vision problems, and other issues. Fewer than 100 cases of Coffin-Siris have been reported worldwide, according to the report.

Two days later, the doctors convened another meeting and said Maverick was no longer a candidate for a transplant. According to Chenkus, they said children with Coffin-Siris have compromised immune systems and are at a high risk for tumors and infections. After the transplant, he would have to take drugs to suppress his immune system even further, making the transplant too risky, they said.

His medical record includes a note about the meeting, signed by Dr. Linda Addonizio, medical director of Presbyterian's pediatric cardiac transplant program.

"His genetic defect is associated with increased infections and tumors, which would be greatly magnified combined with the immunosuppression involved in transplantation," the note said. "I discussed that this does not mean we are giving up on Maverick, but trying to improve his heart failure as best as possible and get him to gain weight."

Chenkus disputes that version. She said during the meeting the doctors offered no hope at all for Maverick, telling his parents to love him for the time he had left.

According to Chenkus, the doctors never proposed a treatment plan to get her son's heart better, and for the rest of his stay at Presbyterian he didn't gain weight and remained in heart failure.

The doctors confirmed their decision with a letter.

"After careful completion of Maverick's medical history, it was determined that he does not qualify to be a heart transplant candidate at our institution at this time," Addonizio wrote. "This decision was based on the medical implications of his Coffin-Siris syndrome, which would limit his survival and potential benefit from transplantation."

The doctors gave Maverick's parents information about Coffin-Siris, which cited a study by Dr. Gijs Santen at Leiden University Medical Center in the Netherlands. Maverick's mother e-mailed Santen and asked if it was true that children with Coffin-Siris have compromised immune systems.

No, he wrote back, they don't.

"There is no objective problem with the immune system (in children with Coffin-Siris)," Santen wrote to Maverick's mother. "It is difficult to use infection risk as a reason not to perform a heart transplant."

CNN interviewed Santen and five other experts on Coffin-Siris, who explained that while some children with the syndrome have been reported to have frequent infections, that's not uncommon among children in general, even in ones without genetic disorders.

The six Coffin-Siris experts said children with the syndrome do not have suppressed immune systems or increased risk of infection or tumors and that in their opinion, Coffin-Siris isn't a valid reason to deny a patient a transplant.

"I've never seen a child with Coffin-Siris who was immune compromised," said Dr. John Carey, a pediatrician and geneticist at the University of Utah School of Medicine who has been studying the genetic syndrome for 36 years. "I don't think it's a valid reason to deny a transplant."

"(Coffin-Siris) is not a reason to say no to a transplant," said Dr. Grange Coffin, who first identified the syndrome in 1970, along with his colleague at the University of California, Dr. Evelyn Siris. "I would say it's wrong to do so."

Chenkus told her son's geneticist what she'd learned from Santen, hoping she'd change her mind and offer Maverick a new heart.

But she said the geneticist dismissed the Dutch doctor as a "junior researcher."

Dismayed, Chenkus asked Santen to reach out to Maverick's geneticist in New York directly. Santen sent the geneticist an e-mail saying the reason for denying Maverick the transplant "is not based on solid evidence," and that a more senior colleague of his agreed.

Presbyterian still wouldn't budge. They insisted they would not give Maverick a transplant, emphasizing that he had a compromised immune system.

On April 12, Chenkus called for another meeting with Maverick's doctors, thinking she might have one more chance at getting her baby a new heart.

She repeated what she'd learned from the Coffin-Siris experts, and asked them a question. Maverick was now 6 months old and had spent nearly his entire life in the hospital, a well-known source for germs, and he'd had multiple invasive procedures that would have given those germs a good opportunity to invade his body. If he had a compromised immune system, why had he never had a single infection, not even a case of the sniffles?

She said the doctors didn't answer her question, said they had another meeting to attend and walked out the door. Chenkus sat in the room, sobbing.

"I can't f***ing believe this," she thought to herself.

"The more I fought, the less they listened," she said. "But I knew that going home to die was not his fate."

Maverick's story: Philadelphia and Cleveland

Chenkus and Higgs realized they didn't have a chance of getting Maverick a transplant at New York-Presbyterian. They knew they had to move fast.

The couple reached out to three well-respected heart transplant centers: Children's Hospital of Philadelphia, the Cleveland Clinic and Boston Children's Hospital.

But they were to meet with only more disappointment.

On May 6, according to Maverick's mother, two of Maverick's doctors walked into his hospital room and said the doctors in Philadelphia had refused to give him a new heart for the same reason: that his Coffin-Siris syndrome meant he had a suppressed immune system.

But Chenkus said when she got on the phone with the Philadelphia doctor, he told a different story. According to her, he said Maverick's genetic problems played very little role in their decision making. He said they wouldn't give her son a transplant because of "the big picture."

Chenkus said she asked the doctor several times to explain what he meant by "the big picture," but she said his answers were vague, and he repeated that at a surgical conference a team of physicians had unanimously agreed that Maverick wasn't a candidate for transplantation. Chenkus asked the doctor to send her a copy of the written report from that conference.

Children's Hospital of Philadelphia declined to comment for this story about Maverick's case, but sent CNN a statement about their transplant policies in general.

"The Children's Hospital of Philadelphia does not disqualify potential transplant candidates on the basis of intellectual abilities, and, in fact, has transplanted many children with a wide range of disabilities, both physical and intellectual. CHOP is deeply committed to providing the best possible medical care to all children, including those with any form of disability," according to the statement.

"Patients with certain complex conditions display a predisposition to serious illnesses, which can be exacerbated by transplant-related care, such as immunosuppressive drugs, which are necessary to prevent rejection after transplant. These serious co-morbidities are severe impediments to organ transplant success. For some patients, transplantation simply serves to replace one serious medical situation with another," the statement continued.

"When faced with such significant countervailing negative medical risks, the transplant evaluation team must sometimes make the difficult decision to recommend against transplant at CHOP, despite knowing how devastating such decisions can be for any family who has come to us for help."

Two hospitals had now refused to give Maverick a new heart for completely different reasons, neither of which made sense to Maverick's parents. They continued to feel that their son's disability was the real reason for the denials, and they felt powerless to do anything about it.

Maverick's parents watched their son's health deteriorate, his heart function getting worse and worse. They pinned their hopes for their son's life on the Cleveland Clinic and Boston Children's Hospital.

A few days later, they received an e-mail from Dr. Gerard Boyle, medical director of pediatric heart failure and transplant services at the Cleveland Clinic, saying his hospital wouldn't give Maverick a transplant, either.

The doctor said Maverick was at "the highest risk of early death post-transplant" because he'd had two failed surgeries for his hypoplastic left heart syndrome. He e-mailed Chenkus a study saying one year after transplant, 70% of babies like Maverick were still alive, compared to the most successful group of babies, who had an 89% survival rate.

In addition, Boyle noted that Maverick had a gastronomy tube in his stomach for his feedings, considered a risk for infection, and they could close the tube, but then they would have to replace it after the transplant.

Chenkus wrote back hoping Boyle might reconsider, but once again her hopes were crushed.

"Transplantation in a child with a genetic defect is frought (sic) with uncertainties," the Cleveland Clinic doctor wrote to her. "We in the transplant community are charged with protecting a precious resource, a donated heart. We must do our best to assure this precious gift has the best chance of success in bringing a full life to its recipient."

He said the hospital "would be happy to offer management of his heart failure and to optimize his medical care to provide him as long a life as we are able," but he was adamant that Maverick was not a transplant candidate.

Boyle added he had heard through Maverick's cardiologist in New York that Chenkus was meeting with a physician at Boston Children's Hospital.

"I applaud you for that initiative," he wrote to Chenkus.

"We are obviously not alone in this determination as (Presbyterian) has made this clear and I assume Boston has as well knowing them as well as I do," he wrote.

He added that the Boston doctor was a "friend and colleague" of his. "It is my understanding that Boston has a similar stance on the question of transplant that I have outlined. That is no coincidence as we are all a small community of pediatric transplant specialist (sic) and are all aware of the current data and literature," he added.

Angie Kiska, a spokeswoman for the Cleveland Clinic, declined to comment for this story because Maverick was never a patient there. In an e-mail, Boyle said he is "not interested in participating in this story."

Time was now more critical than ever. Maverick's parents drove from New York to Boston Children's Hospital to save their son's life.

Maverick's story: Boston

Finally, in Boston, Chenkus and Higgs heard what they'd been hoping for. The doctors agreed to accept Maverick as a patient, and while they couldn't promise he would be eligible for a heart transplant, they didn't rule one out as the other hospitals had done.

On May 18, Maverick was taken by ambulance from New York to Boston, where for the next three weeks doctors tinkered with his medications. He responded quickly: His blood pressure, once sky high, went down more than 30 points and the level of oxygen in his blood, once dangerously low, rose dramatically.

Maverick, who had been lethargic and sleeping 18 hours a day toward the end of his hospital stay in New York, became more lively. He gained a pound in one month in Boston, after gaining no weight in his last three months in New York.

"He was a completely different baby," Chenkus said.

It was ironic, she thought, that as she watched the Boston doctors improve her son's health, she received the surgical discussion summary she had asked for from Children's Hospital of Philadelphia. It said they had no hope for her son.

"We regret that we do not have an intervention to offer Maverick that is more likely to help than harm him at this time," she read.

On June 7, Maverick's Boston doctors called a meeting. Once again, a group of physicians in white coats gathered around a conference table and turned to face Chenkus and Higgs. But this meeting was far different from the one in New York 11 weeks earlier.

The doctors reported that Maverick was doing so well he didn't need a transplant after all and could go home in a few weeks -- not to die, but to live.

They added that Maverick might need a heart transplant in the future, and if he did, his Coffin-Siris syndrome wouldn't stand in the way. He wasn't immune compromised and he didn't have a high risk for tumors.

After fighting for her child for so many months, Chenkus put her head down on the table and cried. It was her 32nd birthday, and it was the best present she could have received.

As Chenkus walked out of the meeting, she thanked hospital geneticist Dr. Amy Roberts and gave her a hug.

"I felt like the weight of the world had been taken off my shoulders," she said.

On June 21, Maverick was discharged from Boston Children's Hospital. He has been back a few times for short stays, but Chenkus said that he's thriving.

He turned 1 on September 29, can sit up by himself and can stand and jump if someone holds his hands. He loves to play with toys (a baby-sized keyboard is his favorite) and grabs his bottle.

Like other children his age, he's a social baby, interacting with those around him, and he shows particular affection for his parents and others who are close to him. He knows what he likes and doesn't like: He chows down on applesauce and mashed bananas, but spits his carrots back out at his mother.

A few weeks ago, he said his first word: "Mama."

Chenkus said she thinks the Boston doctors figured out a way to get her baby out of heart failure simply because they were willing to put forth the effort, even though he'll likely have disabilities.

"The difference between Boston and all the other hospitals is the way they cared -- the fact that they cared," she said.

'Maverick amazes me constantly'

In August, the U.S. Department of Health and Human Services' Office for Civil Rights agreed to investigate a complaint against New York Presbyterian Morgan Stanley Children's Hospital, Addonizio, and Dr. Wendy Chung, a geneticist at New York-Presbyterian. The complaint charges Maverick's civil rights were violated and that he was discriminated against based on his disability.

CNN reached out to both doctors for comment. Presbyterian Hospital spokeswoman Christina Stolfo declined to respond specifically to the complaint, and referred us back to the hospital's previous statement.

In the complaint, filed April 16 by Maverick's father, he recounts how the hospital refused to give their son a transplant and "then told us to take our son home and wait for him to die."

"The hospital first said the decision was based on Maverick being at a heightened risk for tumors and infection. We later learned that this was false information and that Maverick is not at a heightened risk for tumors or infection," Higgs wrote in the complaint.

"The real reason the hospital is refusing to list our son or consider him for a transplant is the hospital's perception that Maverick will be mentally and/or physically delayed. It is clear that the hospitals (sic) decision to deny Maverick a transplant is based on nothing more than this illegal discrimination," Maverick's father concluded.

Today, Maverick's mother starts to cry when she looks at her son and remembers how seven months ago his doctors said he had had about six months to live.

"I'm glad I didn't give up and I'm glad I didn't lose hope, and I'm glad I didn't listen to the doctors," she said. "Maverick amazes me constantly."

---

Immune system may play crucial role in mental health. USA TODAY (12/1) by Karen Weintraub

Considering inflammation has helped neuroscientists cast a broader net when searching for causes of and possible treatments for mental illness, mood disorders and neurodevelopmental conditions.

Last time you had a bad cold, you likely had less energy than usual. You lay around and didn't have any enthusiasm for your usual activities. After it dragged on for a day or two, a sense of helplessness probably set in. It was hard to remember what feeling good felt like or how you could ever bound off the couch again.

In short, for a few days, you probably felt a lot like someone with depression.

And increasingly, scientists think it's no coincidence that a mental illness feels like a physical one.

A growing body of research on conditions from bipolar disorder to schizophrenia to depression is starting to suggest a tighter link than was previously realized between ailments of the mind and body. Activation of the immune system seems to play a crucial role in both.

"We just didn't understand how much of a role the immune system plays in how we think and feel and act," says Andrew Miller, a professor of psychiatry at Emory University. "An overactive immune system or when there's something going on in the immune system, it can have consequences on the brain."

An immune response, including inflammation, new research suggests, may help explain why:

• Brain conditions such as multiple sclerosis, Parkinson's and Alzheimer's disease all affect mood;

• About one in four people hospitalized with schizophrenia had a urinary tract infection when admitted to the hospital;

• Mothers with auto-immune conditions such as lupus are more likely to have a child on the autism spectrum;

• People with higher rates of inflammation are more likely to show signs of depression than those with healthy immune function. A study in mice presented earlier this month at the Society for Neuroscience's annual convention showed that the immune changes came before the emotional ones.

"One of the things we need to stop thinking is that mental health is just a disorder of the brain," says researcher Georgia Hodes, of the Icahn Medical Institute at Mount Sinai Hospital, who conducted the mouse study. "There's plenty of evidence in a number of different mental illnesses that they have components to them that relate to the entire body."

Merely adding inflammation to their thinking has helped neuroscientists cast a broader net when searching for causes of and possible treatments for mental illness, mood disorders and neurodevelopmental conditions such as autism, researchers say.

And this mind-immune system connection might help explain why mental health treatments don't work for some people. Perhaps, researchers now think, those people would be better off with approaches that target their immune systems rather than their brain chemicals.

For those with schizophrenia and urinary tract infections, for instance, acute psychotic symptoms often improve after a few days on antibiotics, according to Brian Miller, an assistant professor of psychiatry at Georgia Regents University in Augusta, who is studying the connection between the conditions. This isn't to suggest that all people with schizophrenia should be on antibiotics, Miller says, but patients with both might get as much or more relief from antibiotics as antipsychotics.

Other studies show that the level of an inflammatory protein called interleukin 6 may help predict someone's emotional state. Manipulating the levels of this protein changes behavior on depression and anxiety tests in mice, says Larry Swanson, a neuroscientist at the University of Southern California, and immediate past president of the Society for Neuroscience.

Researchers are still working out the connection between the immune system and autism, says Judy Van de Water, an immunologist at the MIND Institute at the University of California-Davis. There is some indication, she says, that the people with autism who have the most behavioral problems, such as irritability and hyperactivity, also show the highest levels of inflammation. She says she hopes that better understanding the role of inflammation in autism will lead to treatments.

The immune system's role might also fit into the "second-hit" idea of mental illness, where two or more factors, such as genetics, immune challenges and, say, a hit to the head, combine to cause brain problems. That may explain why traumatic brain injuries often lead to depression, says Jonathan Godbout, a neuroscientist and associate professor at the Institute for Behavioral Medicine Research at The Ohio State University Wexner Medical Center.

A serious infection during pregnancy or early in life might make someone more vulnerable to problems later, says Godbout. "It's like a priming or sensitization. There are secondary triggers that can reactivate something and make it worse."

What is clear, says Andrew Miller of Emory, is that the body and mind both influence one another. "It's a two-way street — what happens psychologically can affect you physiologically and then feed back and affect you psychologically. The brain and immune system — their interactions are quite meaningful for health and illness."

Tips for keeping down inflammation, which might help promote good mental health:

• Keep stress to manageable levels (inflammation probably causes stress and stress can cause inflammation; both are bad for the body and the brain.)

• Exercise.

• Maintain a healthy weight (excess fat leads to inflammation).

• Get adequate sleep — 7½ to eight hours a night, on average.

• Avoid serious infections while pregnant and in early childhood.

• There is a little evidence that anti-inflammatory drugs, including aspirin, might help improve mood, though that research is very preliminary and these drugs are probably not strong enough to treat full-blown illnesses, say researchers.

---

TECHNOLOGY

UMass Boston, IBM working on tech center for people with disabilities. The Boston Globe (12/3) by Michael B. Farrell

The University of Massachusetts Boston and computer giant IBM Corp. are teaming up to devise new ways for people with disabilities and the elderly to benefit from technological advancements.

Through a partnership that will be announced Tuesday, the two will open the nonprofit Collaborative Innovation Center that will build on the research that both UMass and IBM have been doing for decades to increase accessibility in the workplace and on campus for people who have vision, hearing, and other impairments.

Much of the center’s focus will be on developing new technology, but it will also work to create new policies for government agencies, schools, and businesses in order to reduce the barriers to using computer technology.

“Access to the Web has become pretty central,” said William Kiernan, dean and research professor of the newly formed UMass School of Global Inclusion and Social Development. “All we are trying to do is level the playing field for people who want to participate in the community.”

Kiernan is one of the country’s leading researchers on workforce issues facing people with disabilities, and the collaboration with IBM builds on work he has been doing since the 1970s.

Since then, he has advised scores of government agencies, schools, and businesses on ways to increase accessibility for the disabled and seniors. What’s more, UMass was also one of the first schools in the country to provide services to disabled students.

The collaboration with IBM should help accelerate UMass’s research by tapping into the company’s trove of scientists and technologies.

“The private sector tends to move faster than universities,” Kiernan said.

The joint effort is for now a research collaboration only. IBM would not comment on whether it stands to benefit commercially from any products developed by the center.

Many disabled people cannot experience the fullness of the World Wide Web. People with hearing loss, for example, are shut out of the millions of videos posted on the Web. While the Federal Communications Commission says videos shown on TV with captions must also have those captions when aired online, that doesn’t apply to the vast majority of videos posted by individuals on services such as YouTube.

Also, the American Association of People with Disabilities reports that 54 percent of disabled adults use the Internet compared with 81 percent of those without a disability.

The Collaborative Innovation Center will borrow from experts across disciplines at IBM as well as faculty and students at UMass to staff the center and work on various projects. Its work will be conducted both at the UMass campus in Boston and at IBM's Innovation Center in Cambridge. UMass will fund much of the work through grants.

While IBM and UMass will focus on building many new technologies from scratch — especially for mobile devices such as smartphones and tablets — some of the work will be honing existing projects already underway at IBM. One of its first endeavors, for instance, will be to further develop a prototype app for students with disabilities to find their way around campus by locating ramps and buildings with elevators, or where a blind student might find audio guides and other services.

“We hope that we can develop very practical applications that can be deployed on campus and then to cities,” said Frances West, director of IBM's Human Ability and Accessibility Center.

In addition to the long history of support and advocacy for people with disabilities at UMass, IBM has also been at the cutting edge of developing technologies for people with hearing and sight loss. For instance, in the 1980s, IBM created a talking typewriter and soon thereafter developed one of the first computer screen readers.

“We’ve had to innovate and develop technologies to help our own employees, so we have accumulated many best practices,” said West.

Another goal for the center is to raise awareness about the need for app developers and other technology companies to include accessibility features into all software from the get-go, said West. That way, she said, “it isn’t an afterthought.”

Michael B. Farrell can be reached at michael.farrell@globe.com.

-------

American Association of People with Disabilities

2013 H Street NorthWest, 5th Floor

Washington, DC 20006 United States

-------