One woman’s fight to improve mental health care in China

In 1985, Meng Weina set up China’s first private special needs school in the southern city of Guangzhou.

As a single mother she was motivated to help those who are often overlooked by the country’s health care system and stigmatized by society.

From her first center in Guangzhou, Weina now has Hui Ling operations in a dozen cities across China providing a range of services, from kindergartens and primary schools to youth workshops and adult residential homes.

The expansion of the donation-funded NGO shows not just the success of the Weina’s vision but the desperate need for mental health care provision in China.

“We estimate that only 10% of people with intellectual disabilities in China are receiving some kind of care or help,” said Weina.

According to a 2009 study published in British medical journal The Lancet, around 173 million Chinese suffer from a mental disorder. However there are only 20,000 psychiatrists, equaling 1.5 for each 100,000 people, or a tenth of the ratio in the United States.

Mental health legislation

Last year saw the introduction of China’s first mental health legislation, which took a reported 27 years to pass.

Among the changes from the law are new financing initiatives for mental health services and training for primary care-givers. Perhaps the most significant was a new set of rights for patients, including not being hospitalized against their will.

Negative perceptions of those with metal health problems are often portrayed in the media in China; they are either victims or perpetrators of violence.

Weina knows that each individual that comes to a Hui Ling center has their own set of needs and unique personality, and helping bring out their best encourages her to keep working.

“I wanted to do something to make my life worth while,” said Weina.

“When I see the smiles on their faces, when I see that these adults are truly happy to be at Hui Ling, that for me is the happiest moment.”

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The Tennessean: Last large state institution for disabled to close

The state has agreed to close a 40-year-old facility in east Tennessee for people with limited mental functioning, a move that advocates say marks a welcome end to an era of housing people with disabilities in large state-run asylums, often for the majority of their lives.

Under the plan, the Department of Intellectual and Developmental Disabilities will shutter Greene Valley Developmental Center in Greeneville by June 30, 2016, moving the remaining 96 residents into more home-like settings integrated into neighborhoods.

The plan to close Greene Valley is part of an overall agreement submitted in federal court last week. It would end a long-running lawsuit by advocates for people with disabilities, their parents and guardians, and the federal government against Tennessee over conditions in its institutions for people with intellectual disabilities, defined as possessing an IQ of 70 or less.

Those groups filed suit in 1995, after a Department of Justice investigation uncovered widespread abuses, including inadequate medical care, abusive treatment, failure to provide education and insufficient staffing at state institutions. The facilities have been under the federal court’s oversight since 1996.

A second large state-run institution, Clover Bottom Developmental Center, is scheduled to close this summer, five years behind schedule. About 20 residents still remain on that aging campus, which once housed 1,100, located near Hermitage in northeast Nashville.

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NYT: An Oasis of Care for People With Intellectual Disabilities

LOUISVILLE, Ky. — A mother needs to get her son out the door. Thick white socks cover his contorted feet, a coat drapes his twisted shoulders, a water bottle with a straw nestles in the concave of his chest, and black straps on his wheelchair secure his wrists. He is 33 years old, and she has to get him to an appointment.

“I always forget something,” the mother, Mimi Kramer, says, looking about her small, immaculate house. “Oh. A change of pants, just in case.”

Her son, Trey, has intellectual disability, autism and cerebral palsy. He was a joy as a child, she says, but with puberty came violent acts of frustration: biting himself until he bleeds, raging against sounds as faint as a fork scrape on a plate, lashing out with his muscular right arm. He nearly bit her finger off one Kentucky Derby Day when she tried to swipe away foam that he had gnawed from his wheelchair’s armrest.

“But he’ll also definitely make you smile when he’s happy,” says Ms. Kramer, 52, a slight, divorced woman who has raised her son mostly alone. “His smile will light up the room.”

For years, parents like Ms. Kramer have struggled to find compassionate health care for their adult children with profound disability, among the most medically underserved populations in the country. They are told their children are not welcome: too disruptive in the waiting room, too long in the examining room — beyond the abilities of doctors who have no experience with intellectual disability.

“It’s been really hard to find anyone to even take him,” Ms. Kramer says. “Much less the experience when you go into a waiting room with someone as challenging as Trey.”

Now, though, Ms. Kramer has a place to go. A motorized lift raises her son into her customized Ford Econoline van, where a home care aide named David Stodghill keeps some fudge cookies nearby as positive reinforcement for Mr. Kramer. Continue reading NYT: An Oasis of Care for People With Intellectual Disabilities

WashPOST opinion: An autistic man caught in the criminal justice system

December 12

FOR THE apparent crime of wearing a hoodie in public, an 18-year-old black man was approached by a sheriff’s deputy in Stafford County four and a half years ago. A caller had reported that the man, sitting on the grass across the street from an elementary school, might be armed. As it turned out, the suspicion was unfounded; the man, Reginald Latson, who has an IQ of 69, was doing nothing more than waiting for a public library to open its doors.

Yet that unprovoked encounter between the deputy and the teenager, which culminated in the teenager’s arrest and felony conviction for assaulting the deputy, triggered a tragic sequence of events. As The Post’s Ruth Marcus has detailed in two op-ed columns, the story of Mr. Latson is a case study of how ill-equipped the criminal justice system is to handle people with mental, developmental and emotional disabilities.

Specialists who have examined Mr. Latson describe him as a boy in a man’s body, given to violent impulses and outbursts. State officials concluded last year that he belongs in a secure therapeutic treatment center, not a prison. They arranged for just such a placement, at a facility in Florida, and a judge signed on to that plan.

But a prosecutor in Stafford County, Eric Olsen, has pressed ahead to keep Mr. Latson in prison rather than at an equally secure facility where he could receive appropriate treatment. Last spring he brought a fresh assault charge after Mr. Latson punched a prison guard — the sort of incident that is sometimes treated as a disciplinary matter in prison, not a new criminal offense.

The effect has been to prolong a toxic cycle of incarceration, violent outbursts and criminal charges. All this for a young man whose problems would be better managed outside the prison system at a secure treatment facility.

No one is suggesting Mr. Latson should go free. But it seems clear that punishment — he has been segregated for long periods from other inmates, deprived of TV, radio, books and magazines and, at various times, Tasered (after punching the guard) and straight-jacketed into a chair — is doing no good. Since his arrest in 2010, Mr. Latson has cycled through 10 or so facilities in Virginia, including jails, prisons, group homes and psychiatric hospitals. He has had recurrent suicidal urges and has lost 40 pounds from an already-lean frame.

Yet as long as Mr. Latson faces pending charges, he cannot be transferred to the treatment facility in Florida.

Given Mr. Olsen’s insistence on further criminal charges, it appears that this senseless cycle can be broken at this point only by a guilty plea or conviction at a new trial for Mr. Latson, which is scheduled for next month. Once that happens, the judge could see that Mr. Latson is moved to the treatment facility after serving a mandatory minimum sentence in Virginia, or Gov. Terry McAuliffe (D) could immediately grant a pardon conditioned on Mr. Latson’s transfer to the facility in Florida. It’s not too late for Virginia to get its act together and recognize the distinction between disability and criminality.

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Irish Times: My Spina Bifida life: ‘Hi, I’m David. I’m a stand-up comedian’

Corkman talks of his journey from mainstream school to university in London

“I had a lifesaving operation just after I was born. I was diagnosed with spina bifida before birth. These days, you can treat babies for spina bifida in the womb, but that wasn’t an option for me. My back had to be mended because I had a huge wound for a small person.

My mother is a nurse and I have an uncle who’s a doctor. Because of their medical backgrounds, they were able to make decisions that were necessary for me. They built up their knowledge of spina bifida. I had other health issues associated with spina bifida, but nothing long term. My health is very good, considering.

I was only three when I first started using a wheelchair. Until then, I used to crawl a lot. I don’t remember being told what I had, but from the age of three I developed an awareness of being somewhat different. That really came to light in primary school. When all the boys in the class were playing soccer and I couldn’t, it affected me. But to compensate for that, my parents encouraged me towards doing wheelchair sports. I did swimming and athletics, but I didn’t make it to the Paralympics.

Children can be cruel, but the funny thing was that anyone I had a problem with wouldn’t actually make light of my disability or say anything about my wheelchair. It’s a taboo subject and not something that people generally would use as a weapon. It was always something else; your hair, or your teeth, or your glasses.

When I started going to school in 1996, people with my condition were still going to special schools. My parents didn’t want that in any shape or form.

They were always pushing me to my best potential. They sent me to a mainstream school and I wanted that too, even though I didn’t know the difference at five years of age.

Disability rights
In my teenage years, I started to develop a consciousness about the rights of people with disabilities. When I got to the age where I was able to go into town, I started to notice a lot of places that were inaccessible to me.

A lot of nightclubs in Cork are upstairs, some without lifts. My dream would be that Ireland would catch up with some states in the US where every facility has to be fully accessible. In some places in the US, if a pub, club or cafe doesn’t have wheelchair-accessible toilets, they’re closed down and there’s no arguing about it. I’ve always pushed myself to get to places. I’ll get out of my wheelchair and crawl up a stairs if I have to.

I’m ambitious. I’m always thinking one step ahead. I won the UCC Graduate of the Year award for 2013. To win it, I had to get first-class honours every year in my exams as well as taking on extracurricular work.

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The Hill: Jobs Where They Are Most Needed

A recent report has warned that the trust fund undergirding the Social Security Disability Insurance program (SSDI) is nearing depletion.  At the same time we hear reports – mostly from states – that Supplemental Security Income (SSI) payments are a vital safety net for many individuals and families.

We believe there’s a way to relieve these pressures and create a path to meaningful lives for many individuals with cognitive and physical challenges. That path is bound up in a single word: Jobs.

But first, let us introduce John D.

John D. is a 21-year-old with autism. He has learned to read, do basic math and master skills that help him get along in the community. John also now has a job – a full-time job – at the National Institutes of Health. It is not a “special” job. It is a job that requires him to file papers, follow orders for materials to be delivered, maneuver across the large NIH campus and interact with other employees. He has this job because NIH saw value in and agreed to participate in a program called Project SEARCH.

With a few of years of work-experience training at The Ivymount School, John and several classmates were selected by NIH as Project SEARCH interns for a year. They worked on the NIH campus in a variety of jobs with the support of a job coach. At the end of the year, John was one of eight young adults offered a job. He lives at home, gets himself to and from work using public transportation and, most important, is a self-supporting, contributing member of society. John’s supervisor will tell you that he is among his most dependable employees, arriving every day on time, often being the first to volunteer to work on holidays.

Once a candidate for SSI support that averages about $6,600 annually, John D.  now pays taxes that support the system.

In our experience, for every John D., there are many others who can find only part-time work or no work at all. Even though some may have more significant deficits, they are clearly capable of holding a job. The problem is that there just aren’t enough jobs for individuals with disabilities – a problem that has grown worse under current economic conditions.

For John D.’s classmates, it means they cannot find a job. Some of them, undoubtedly, will end up on SSI as parents look to the years ahead, when they may not be around to support their children. Continue reading The Hill: Jobs Where They Are Most Needed

Think College

Think College is a national organization dedicated to developing, expanding, and improving inclusive higher education options for people with intellectual disability.  With a commitment to equity and excellence, Think College supports evidence-based and student centered research and practice by generating and sharing knowledge, guiding institutional change, informing public policy, and engaging with students, professionals and families.

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NYT: Down Syndrome and Quality of Life, continued

Letters to the editor.

Re “The Truth About Down Syndrome,” by Jamie Edgin and Fabian Fernandez (Op-Ed, Aug. 29):

Two and a half years ago, I had the very choice the biologist Richard Dawkins and others deem so simple. Continue my pregnancy with a Down syndrome fetus, or terminate? I was 37, happily married, with one nondisabled child.

I have a Harvard degree and a graduate degree, and somehow the utilitarian calculus Mr. Dawkins cherishes (not to mention notions of what might happen 40 or 50 years down the line) provided zero assistance in that moment.

It was simply: Do my husband and I feel able to care for a child with a lifelong disability, whose severity we cannot determine but who will most certainly be significantly compromised? Who will also be able to love and be loved, and achieve within the limitations we all bear?

We went ahead, and I can only say our son has healed the doubt and fear in our hearts.

RACHEL SIEGEL

Great Barrington, Mass., Aug. 29, 2014

 

To the Editor:

Jamie Edgin and Fabian Fernandez write that virtually all children with Down syndrome will develop Alzheimer’s disease later in life. They write about this probability as if it were a mosquito bite, not the exhausting, nightmarish and costly situation that it is, with no upside whatsoever.

This occurs when the “child” is 40, and the parents, therefore, in their 60s or 70s, and badly in need of rest and time for themselves.

The “truth” about Down syndrome and dementia is that when you are faced with them, you deal as best you can, but you should not be talked into choosing them if it’s possible to make another decision for yourself and your child.

SUE W. RANSOHOFF

Cincinnati, Aug. 29, 2014

To the Editor:

As a mother of two children with Down syndrome and a concerned citizen, I question the wisdom of trying to predict quality of life based only on someone’s genes. Jamie Edgin and Fabian Fernandez carefully made the point that having Down syndrome does not hamper the ability to lead a happy, fulfilling life.

To be sure, not every person with Down syndrome is a happy person leading a rewarding life. There are grumpy, poorly behaved people with Down syndrome. There are plenty of those in the general population, too. The truth about people with Down syndrome is that they are individuals; most are happy, some are sad, some are smart, others not so much. They all add value and diversity to our society.

Now, when their existence is under severe threat because of advances in prenatal screening, I applaud every effort to underline the positive facts about living with Down syndrome.

RENATE LINDEMAN

Heiloo, the Netherlands, Sept. 1, 2014

 

To the Editor:

While I respect Richard Dawkins’s expertise and scholarship on Darwin and evolution, I take issue with his views on Down syndrome.

My son, Jason Kingsley, who has Down syndrome, has co-written and published a book (“Count Us In: Growing Up With Down Syndrome”); plays the piano and violin; paints, lives and works in the community; and recently performed as Snug the Joiner in a New York City performance of “A Midsummer Night’s Dream.”

While not all people with Down syndrome will achieve at this level, it is not possible to predict at birth, and certainly not prenatally, what their level of accomplishment will be.

What is safe to say, however, is that my son will never be the chief executive of a large corporation who remorselessly cheats millions of people out of their life savings. He will never be a lawmaker obstinately determined to obstruct progressive legislation.

I question who brings more suffering into the world.

EMILY PERL KINGSLEY

Briarcliff Manor, N.Y., Sept. 2, 2014

The writer is a member of the advisory board of the National Down Syndrome Society.

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BBC: The parish councillor with Down’s syndrome

Stephen Green, 49, is one of just a handful of parish councillors with a learning disability in the United Kingdom.

Elected onto Nuthall Parish Council in Nottinghamshire last year, Green has Down’s syndrome and his dad, Grenville Green, assists him to be an active member of the community.

Parish councillors help organise events, fundraise for local charities and fix problems such as the classic pothole in the road.

Some may be surprised to hear that a man with Down’s syndrome can partake in community activities like this but is this because they fundamentally can’t do it, or because there isn’t enough support and access for equal participation?

Councillor Green says his greatest success has been to save the popular monthly Men’s Breakfasts in his parish by volunteering to gain a food hygiene certificate and so allow the early morning club to continue.

Video journalist: Kate Monaghan

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WashPost: Bringing more wheelchair-accessible cabs to D.C. streets and saving the city millions

He was referring to a program that could begin on a relatively modest scale in the fall, designed to save millions of dollars for the District while increasing the number of wheelchair-accessible taxi-vans on the streets of the nation’s capital.

In its early phase — a pilot program, possibly starting in October — kidney-dialysis patients (in wheelchairs or not) who live in the District and use Metro’s paratransit service would have the option of riding in any of 33 accessible taxi-vans that would be added to the city’s cab fleet.

The fares generally would be lower than on Metro’s service, called MetroAccess, officials said, and riders would be able to book trips on shorter notice. If the program works, Linton and others said, it could be expanded in coming years.

The transit agency likes the idea. The Taxicab Commission voted Wednesday to move ahead with it. And Patrick Sheehan, chairman of citizens committee that advises Metro on accessibility issues, called the plan “a win-win situation for all.”

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