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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Disability Scoop: Athletes With Disabilities Eye College Competition

BERKELEY, Calif. — Growing up blind, the closest Ann Kwong came to a competitive sport, even in P.E., was a marshmallow-eating contest. Judith Lung never learned how to throw a ball.

“I never knew what it was like to block a ball and take one for the team,” said Kwong, a senior psychology major at the University of California, Berkeley.

Now she does. And it happens to be a nearly 3-pound rubber ball with bells inside that she can hear only as it comes bouncing and jingling toward her at as fast as 30 mph.

College sports teams are all but off-limits to those with disabilities, but UC Berkeley hopes to pry open the door with goalball, a bruising and sometimes bloody sport in which sightless players rely on sound, touch, communication and grit to hurl a sphere roughly the size of a basketball across an 18-meter court, past three opponents and into their goal.

Last fall, Cal became the first in the nation to establish a competitive collegiate goalball team, less than two years after teaching students, both blind and sighted, how to play.

Its advocates hope the coming years will lead to the kinds of inroads for those with disabilities that the Title IX anti-gender-discrimination law did for women — who, as late as the 1960s, were relegated to half-court basketball.

“I would argue that this is one of the civil rights issues of the 21st century,” said Derek Van Rheenen, goalball’s faculty sponsor, who directs UC Berkeley’s Cultural Studies of Sport in Education in the Graduate School of Education. Continue reading Disability Scoop: Athletes With Disabilities Eye College Competition

The Hill: For better brain health, reason to celebrate

As we kick off the new year, those of us working toward better brain health have something to celebrate. Tucked into the spending measure passed by Congress and signed by the president on Dec. 16 was the gift of increased funding for neuroscience priorities, extending good will toward millions of Americans affected by Alzheimer’s disease, autism spectrum disorder, traumatic brain injury and many other conditions signified by cognitive impairment.

The bill contains a $21 million increase for brain-related projects at the National Science Foundation, including the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative.

Described by the White House as having “the potential to do for neuroscience what the Human Genome Project did for genomics,” the BRAIN Initiative is a multi-agency effort to develop new technologies to map the brain’s structure and processes used in thinking and memory. The initiative also taps the expertise of high-tech firms, academic institutions and scientists — all united in pursuing the goal of better preventing, diagnosing and treating brain impairments. Continue reading The Hill: For better brain health, reason to celebrate

Disability Scoop: Students Design Calming Chairs For Those On The Spectrum

KANSAS CITY — Stuart Jackson was on a mission.

For years, the Overland Park, Kan. father had searched for a way to help his son find relief from the stress and anxiety often experienced by children with autism. Like many of those children, Joshua could be soothed through deep touch pressure — the kind of feeling one might get by being tightly hugged or squeezed.

Jackson came across a few potential solutions on the market, but they tended to be clunky, noisy or ineffective. And way too expensive.

So he took it to CAPS — the Center for Advanced Professional Studies in the Blue Valley School District.

And the engineering students rose to the challenge.

Using such items as a papasan chair, an inflatable air bag, a swimming pool noodle and a remote control air pump, they designed and built a device that not only provides deep pressure to calm the user, but is affordable and looks like a regular piece of furniture. It could work in the home or in an educational or clinical setting.

Now the students are testing and refining their two prototypes — the Sensory Chair and the Sensory Lounger (both trademarked) — and have applied for a patent. The ultimate goal: to get the chairs into all Blue Valley schools and beyond, maybe even into homes and clinics.

The children love the chairs, said Keith Manbeck, a CAPS instructor.

“The first time we tested it, one of the kids was on the verge of a meltdown,” Manbeck said. “Then he got in it, and he just calmed right down.”

The chairs, Manbeck said, “are real close to being done.”

“We’ll hopefully put one at Timber Creek Elementary full time next semester,” he said.

Manbeck, a computer-integrated manufacturing instructor, said the chairs will be on display at a sensory fair at a local elementary school in April.

“It’s kind of been a well-kept secret,” he said. “Now we’re ready for the public to see them.”

It’s been well-documented that sensory therapy such as deep touch pressure can calm children with autism, reducing tantrums, meltdowns and hyperactivity.

Temple Grandin discovered that concept by way of a cattle chute.

Often described as the world’s most well-known and accomplished adult with autism, Grandin observed as a teen that the cattle on her aunt’s ranch became calm when they were put in a chute that squeezed them firmly as they were given their vaccinations.

She persuaded her aunt to let her try out the chute and found that the device had the same calming effect on her.

Grandin went on to become a leading advocate for people with autism and is internationally known for using insights gained from her autism to cultivate dramatic improvements in the livestock industry. Her story was told in an award-winning HBO film in 2010.

Grandin designed a “squeeze machine” that works like the cattle chutes, providing deep touch stimulation evenly and laterally.

Amber Englehart, an occupational therapist at Timber Creek Elementary School in Overland Park, said talk of such a device came up at a parent-teacher conference with the Jacksons. Their 11-year-old son, Joshua, is in the LIFT program, which serves children on the severe end of the autism spectrum.

“Joshua’s dad asked if I knew anyone in the district who either had a hug machine, the kind from Temple Grandin, or if any school in the district had one,” she said. “But I didn’t. They’re very expensive.”

That’s when they decided to approach the CAPS program.

Jackson, an entrepreneur with a background in engineering, is president and CEO of AnalyzeDirect, an Overland Park-based medical imaging software company, and has been a mentor to students in the CAPS global business program for two years.

He put together a presentation for CAPS students that included a video showing the difficulties faced by parents with a child on the autism spectrum. He also showed them clips from the movie about Temple Grandin.

“Basically, the stuff that’s on the market either does not apply enough pressure or costs way too much,” he said. “The Temple Grandin squeeze machine costs several thousand dollars. It’s about 5 feet tall and 5 feet wide, weighs 300 pounds and has a big, industrial-strength compressor on it. It’s very noisy and is impractical for a home.”

So he challenged the CAPS students to come up with a device that was lightweight, quiet, aesthetically pleasing and could potentially be used at home.

Manbeck put his engineering students to work. They brainstormed with Englehart and came up with several ideas before deciding on the current prototypes, using Grandin’s research as their inspiration.

The lounger was the first. It has a plywood base, an air mattress pump and cushions made of high-density foam.

They took it to Timber Creek Elementary to test.

“There were five kids who tried it, and not one of them wanted to get out,” Jackson said. “So we regrouped at the beginning of this semester and talked about what we could do to make it an even better design.”

Andy Vietti, a Blue Valley Southwest High School senior, said students observed children in the LIFT program to get a better idea of what sensory issues needed to be addressed. That, combined with the Grandin movie, she said, “really gave me an emotional connection to the project.”

After more brainstorming, the students came up with a new model.

They put inflatable airbags on top of a papasan chair, then placed a vinyl cover over the bags and a swimming noodle around the edges for more cushion. They topped it all with a removable blue cover made of stretch fabric and put a yellow drape with an elastic band around the bottom of the chair to cover the components.

The pressure is regulated by a hand-held remote. The district’s risk manager has checked the chairs out and determined they are safe.

The green lounger weighs about 70 pounds, while the papasan chair, at 30 to 40 pounds, is less cumbersome and easier to transport. The cost of either chair is expected to be just under $1,000.

The students have taken the chairs to Timber Creek Elementary several times for testing.

“Some of them were a little uneasy at first,” said Austin Edmondson, a Blue Valley Northwest High School senior. “But as it inflated around them, they enjoyed the pressure and embraced it. It was pretty cool. Just seeing how it helps the children has been incredible.”

Zach Naatz, a Blue Valley High School senior, acknowledged that the sensory chair project hadn’t been his first choice when he came to CAPS this semester.

“I really wanted to be on the aerospace project,” he said. “But then I read about this one and changed my mind.”

He said he wasn’t sure what to expect at the outset: “I hadn’t had a lot of experience with children with autism.”

But now, he’s convinced he made the right decision.

“I picked this project because I knew it was going to help people,” he said. “And then when I saw the impact it had, I really wanted to see it succeed.”

Now comes the next phase of the project:

“We’ve gotten to the point where we’ve proven the concept,” Jackson said. “Now we’ve got to prove that this is filling some void.”

If they’re able to demonstrate that there is indeed a market for the chairs, the students will develop a business model then take it to potential investors.

The global business students will interview parents of children with autism as well as occupational therapists in special education classrooms and therapy centers.

“This feedback will help us to understand the competitive landscape and the size of the market while generating ideas for improving the products,” Jackson said.

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Two sides of disability housing debate

The debate that divides Delaware’s disability community, especially in matters of housing, has plenty of sharp edges.

Those edges have come into plain view since the federal agency that decides how to steer taxpayer support for disability services has changed the rule on how it will fund home- and community-based services.

The U.S. Center for Medicare and Medicaid Services (CMS) is increasingly steering money away from anything that looks or acts like an institution, like nursing homes, hospitals, treatment centers, and toward homes and services in community settings, with all plans centered around the persons with the disabilities.

The legal engines behind the shift are the same that have prompted systemic reforms in Delaware’s mental-health system – the 1990 Americans with Disabilities Act and the 1999 Supreme Court ruling known as Olmstead that said people with disabilities must be able to live in the most integrated setting appropriate for their needs.

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Supreme Court To Weigh Police Obligations Under ADA

The U.S. Supreme Court agreed last week to hear San Francisco’s appeal of a ruling allowing a mentally ill, knife-wielding woman to sue police for shooting her, a case that could set standards for police treatment of people with disabilities.

The Ninth U.S. Circuit Court of Appeals in San Francisco ruled in February that a jury ought to decide whether two officers should have waited for backup rather than charging into Teresa Sheehan’s room and shooting her when she lunged at them. The 2-1 ruling reinstated Sheehan’s damage suit, which a federal judge had dismissed.

The nation’s high court granted review of the case last Tuesday and will schedule a hearing for a ruling due by the end of June.

The central issue is how the Americans with Disabilities Act, which requires government agencies to make reasonable accommodations for those with disabilities, applies to police conduct toward a person with mental illness who may be violent.

“Police officers deserve clarity concerning their obligations under federal law, and public safety demands it,” San Francisco City Attorney Dennis Herrera, whose office represents the officers, said. “We hope the high court reverses the Ninth Circuit’s mistaken decision and restores reasonableness to this area of the law.”

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At L’Arche, those at the margins find love at the center

from the Washington Post:

by Michael Gerson, opinion writer, The Washington Post

In an older, gentrifying, suburban Virginia neighborhood — the kind with porch flags and pumpkins on the front steps — I am welcomed at an indistinguishable door to an exceptional little community called L’Arche. Here, intellectually disabled “core members” are paired with often young and intensely idealistic “assistants” who share their lives, normally for a year or two. (L’Arche has more than 140 such group homes in 35 countries.)

Hazel, who uses a wheelchair and communicates mainly with a shy smile, has helped prepare dinner. Before the meal, she shows me photographs she has taken during a recent riverside vacation. (Her more typical photographic subjects, I’m told, are babies at church.) Fritz, a middle-aged man with Down syndrome, watches videos of the rock group Queen on a computer in the living room. Before we eat, he offers an extended, emotionally intense prayer, only occasionally intelligible to listeners in the room but certainly (if there is any justice) intelligible to God.

There is a method in L’Arche’s work. Routine and consistency are important. Core members have chores and, when possible, jobs. (Fritz takes out the trash and washes cars at a city facility.) L’Arche is big on rituals of personal affirmation. When any member of the community has a birthday, the others take turns recounting his or her talents and gifts. While L’Arche is not sectarian, the atmosphere is strongly religious. After dessert, a candle is handed around, with each person expressing a prayer request as they hold it.

The assistants are given months of training before they start. But L’Arche’s goal is not primarily the provision of services. The prevailing professional model of social services involves the setting of emotional boundaries. L’Arche exists to cross those boundaries — to strive for a friendship of equals. The saintly founder of L’Arche, Jean Vanier, argues that generosity is offered from a position of power. True communion, in contrast, involves the loss of power and a willingness to be “transformed by weakness.” Assistants approach core members as teachers.

The result is a deeper, riskier relationship. The challenges of dealing with the intellectually disabled should not be sentimentalized. A core member at a L’Arche home recently became threatening and needed to be hospitalized. (“God holds that person,” says John Cook, the executive director of L’Arche in the Washington area, “but we can’t.”) Some volunteers burn out. More typically, however, assistants report being stripped down to emotional essentials and opened to something larger. “My job, what I make, meant nothing to her,” says one assistant of her core member. “She loved me, without any accomplishments, without anything I thought made me lovable. It is how God loves me.

There is a human tendency to recoil from fragility. But we are humanized by closer acquaintance with the intellectually disabled. Cook speaks of his friend Fritz with admiration: “He has the gift of companionship. He is very attuned to distress and overtly comforting. He gives people a blessing by putting his forehead against their forehead. And people come away feeling moved, like something powerful has happened to them.” At church, Hazel sits at the front by the aisle. During Communion, she greets each congregant as they come forward, receiving a kiss on the cheek, as much a part of the service as the bread and wine.

Those interested in the most efficient provision of social services would probably not design L’Arche — a program that lavishly invests a single life in a single life. Whether this is viewed as wasteful depends upon your ultimate goal. “It is a matter of ends,” says Cook. “If your end is the greatest good at the least financial cost, then some get favored and some discarded. If your end is a place where everyone has a place of honor, and where everyone lives in love, then L’Arche is experiencing it. People who get pushed to the margins are intentionally placed at the center.”

This small community accomplishes many outsize things. It vindicates the ideal of human dignity, which does not depend on normal measures of human accomplishment. It lays bare the illusion that ability means superiority. It displays the lavishness of grace, which, in Christian theology, is needed by and granted to us all. And it shows — amazingly, inspiringly, accusingly — that the beloved community might be created on any suburban street.

Published in The Washington Post October 27, 2014.

 

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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CNN: How deep brain stimulation could unlock secrets of Tourette’s

“Sitting in class, second grade, teachers would put me outside the hallway because I had been ticking so loud I was a ‘distraction,'” recalled 25-year-old Amber Comfort. “Teachers would walk by me back and forth and say ‘you’d better stop that before you get into my class next year.’ Things that were just completely obscene, that you would never expect the world to be, and I had to deal with on a daily basis.”

From the age of five, Comfort has suffered from Tourette’s syndrome, a neurological disorder that causes her to make involuntary movements and loud noises, known as tics.

For almost 20 years, the condition has shaped every moment of her life. “I don’t remember any parts of ever being tic free,” she said. “There’s not a day that’s gone by that I don’t remember moving or making noise when I couldn’t help it.”

But she has not let Tourette’s dictate how she lives. Comfort graduated from high school with honors and was even accepted to college on full scholarship. But her uncontrollable outbursts have made it hard to continue her education or even hold down a steady job.

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