Monday, October 28, 2013

AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Monday, 28 October 2013


AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Monday, 28 October 2013
NATIONAL
Center To Promote Alternatives To Guardianship. Disability Scoop (10/25) (Michelle Diament)
Months after prevailing in a guardianship battle that drew national attention, a woman with Down syndrome is the namesake of a new center challenging an “over-reliance on guardianship” for those with disabilities.
Margaret “Jenny” Hatch, 29, won the legal right earlier this year to make choices about where she lives and works. Her mother had sought guardianship and wanted Hatch to continue living in a group home where her decision-making abilities were limited.
Now, Hatch is the public face for a new effort known as “The Jenny Hatch Project” that will share resources and knowledge gained from her case and promote alternatives to traditional guardianship for other people with disabilities.
“There are lots of people out there with disabilities like Jenny who have people around them who don’t listen to them and, even worse, they take legal steps to limit their choices,” said Tina Campanella, CEO of Quality Trust, a Washington, D.C. advocacy group that assisted Hatch with her case and is behind the new initiative launching this week.
“What the project will do is share stories and resources to help people to work with people with disabilities to make decisions so they can control their own lives,” Campanella said.
Currently, Hatch lives in Hampton, Va. under the temporary guardianship of her friends Kelly Morris and Jim Talbert. For one year, the couple have been directed to employ so-called supported decision making to help Hatch learn how to handle her affairs independently.
Under that model, Hatch’s guardians are to make the decisions that she would make if she were capable of expressing them, whether or not her guardians think such choices are in her best interest.
The case is believed to be the first-ever in which a court has ordered the use of supported decision making.
Hatch says her life now — living with her friends and working at a thrift shop — is like night and day compared to her existence under a traditional guardianship when she lived in a group home and worked in a sheltered workshop environment.
“They took away my computer, my cell phone,” Hatch said of her old life. “I didn’t like the way they treated me. They treated me like a child, but I’m an adult.”
There are no firm statistics about how many Americans with disabilities are under traditional guardianships where a court-appointed individual makes decisions based on what’s thought to be in the person’s best interest. But Campanella said she believes there are many people with disabilities who are currently under guardianships or at risk of one who, like Hatch, could benefit from supported decision making.
“There are way too many people with disabilities who could make decisions who are not being allowed to make decisions for themselves,” Campanella said. “It’s what any of us would want for ourselves.”
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‘Habilitation’ Among New Health Care Benefits. Disability Scoop (10/25) (Michael Ollove)
“To rehabilitate,” according to the Merriam-Webster dictionary, means “to restore to a former capacity.”
But what if that capacity — be it walking or talking or brushing one’s teeth — was never there in the first place? In that case, you aren’t talking about “rehabilitation” but “habilitation.”
People need habilitation when they have a congenital defect or disease that impairs the development of basic life skills. For example, autism may leave a child unable to speak. Cerebral palsy may result in language deficits and severe physical limitations. Birth defects may leave a child deaf.
Thanks to the Affordable Care Act, or ACA, habilitation services will now be widely covered for the first time in private insurance plans. Rehabilitative and habilitative services are among the 10 “essential benefits” that must be provided by all plans sold on all the state and federally run health insurance exchanges. Starting in 2014, all individual and small group health policies sold outside the exchanges also will have to cover habilitative services.
But as is the case with some of the other “essential benefits,” the federal health law mandates coverage of habilitation services without spelling out exactly what that means. The states, together with insurers and advocacy groups, will have a big say in what, and how much, is covered.
The computer deficiencies that have plagued the exchanges since they opened on Oct. 1 have further muddied the picture, since few people have read what insurers on the exchanges are offering. “How this all plays out very much remains to be seen,” said Daniel Brown, senior state policy analyst for the American Occupational Therapy Association.
The number of people who might benefit from such services also is uncertain, Brown said. However, 15 percent of children between the ages of 3 and 17 have one or more developmental disabilities, according to the Centers for Disease Control and Prevention.
The cost of habilitative therapy varies widely, but can be quite expensive. One form of therapy used to treat those with autism, “applied behavioral analysis,” can cost $50,000 or more a year.
A Popular Addition
Before the ACA, habilitative services were inconsistently covered in health insurance plans. Most insurers took the view that teaching skills to individuals with developmental disabilities was an educational matter rather than a health care concern. But as the disability movement has gained influence over the last 50 years, that view has become far less than universal, even among insurers.
For one thing, it has become clear that financially strapped school systems do not have the resources or expertise to meet the habilitation needs of their students. In response, Medicaid in 1989 added habilitative services to its benefits menu, and dozens of states began to require insurers operating in their states to offer habiliative benefits. However, the coverage requirement varies widely from state to state, and many states have limited it to children with autism.
That was the situation when the ACA was being crafted in 2009 and 2010. For part of that time, people with disabilities had a formidable ally on Capitol Hill in Sen. Edward Kennedy of Massachusetts, who died in August 2009. Kennedy, whose sister Eunice Shriver founded the Special Olympics, was a longtime champion of services for those with developmental disabilities.
Though the ACA as a whole remains controversial, opponents of the law have not criticized coverage of habilitative services. But advocates are concerned that the federal law leaves it to the states to determine just how robust habilitative services have to be.
Fear of Limitations
When the details of the insurance plans sold on the exchanges finally emerge, advocates will scrutinize the limitations imposed on the habilitative services offered.
For example, they would oppose a lifetime cap on the number of therapeutic visits patients are entitled to under habilitative services. They also are wary of combining rehabilitative and habilitative visits under one cap, because a person could exhaust all visits for habilitation and have nothing left for rehabilitation. Brown said children with congenital problems sometimes suffer falls or other accidents that require rehabilitation.
“We wouldn’t want (insurers) to say, if you get rehab you don’t need hab,” said Laurie Alban Havens, who advocates for insurance policy changes for the American Speech-Language-Hearing Association, or ASHA, a professional organization representing various types of therapists.
Advocates also will be surveying plans to make sure “maintenance” services are included. After reaching a certain level of ability, a person typically needs help to keep that ability. ASHA and similar organizations argue that maintenance often requires skilled therapy rather than the custodial level of care that insurers prefer to provide.
Many states, including Arkansas, require insurers to provide the same level of habilitative benefits as they do rehabilitative benefits.
“We wanted parity but the question was, ‘what does that mean?’” said Cynthia Crone, a deputy insurance commissioner in Arkansas. For example, an insurance plan might provide 60 days of in-patient rehabilitation without specifying whether habilitation, which doesn’t usually require in-patient care, is covered.
However the states interpret habilitative services, it will certainly be subject to challenge by consumers, regulators and the courts. Jan. 1, when the ACA officially takes effect, will mark only the start of that process.
Stateline is a nonpartisan, nonprofit news service of the Pew Charitable Trusts that provides daily reporting and analysis on trends in state policy.
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STATE/LOCAL
NYC police losing hope of finding missing autistic teen. CNN (10/25) (Julie Cannold)
New York (CNN) -- The mother of a teen with autism who went missing three weeks ago declared Friday, "My son, he is alive." Her comments followed the police commissioner's assessment that the department was "not hopeful" of finding 14-year-old Avonte Oquendo alive.
"My thoughts are that my son is still out there and I want everyone to continue to help me search for my son. He is not gone," Vanessa Fontaine said Friday at a press conference outside of the school in Long Island City where her son ran away October 4.
Sniffer dogs, video cameras, a search of the sewer system, missing-persons posters and fliers filling the streets, subway alerts and messages in city newspapers, and divers with sonar -- none of it has led officers to Avonte.
"Obviously we have devoted a tremendous amount of resources to the search," Police Commissioner Ray Kelly told CNN affiliate WABC on Thursday. "Unfortunately, we are not hopeful that we're going to find this young man alive, but we are continuing our search."
Fontaine wants police to try new tactics in their search.
"I don't know what the commissioner was thinking of last night by saying that, but my son, he is alive, he is out there ...it's just that we are not looking in the right places," Fontaine told reporters.
Bloodhounds
Avonte was last seen on surveillance video running out of Center Boulevard School. Three hours later, bloodhounds traced his scent to a marsh near his school, but lost the trail, a source close to the investigation said.
An hour later, the bloodhounds picked up his scent again, this time at a nearby subway station, the source said.
Avonte is fascinated by trains, his family has said. The New York Police Department has focused its search on rail yards, train stations, tracks and tunnels.
All 468 New York City subway stations have been searched, and aviation, harbor and canine units have periodically helped, the NYPD said. Announcements have been made in subway stations urging commuters to keep an eye out for the missing boy.
A mother's worries
Fontaine told CNN's "Piers Morgan Live" last week that she believed her son was alive and that someone may have been holding him.
"My message to my son is that I love him, and we're going to find him," she said. "You'll come home to your family. And for anyone who has him, please be kind and to let him go."
A reward of $77,500 has been offered for his safe return.
Police said Avonte was last seen wearing a gray striped shirt, black jeans and black sneakers. He is 5 feet, 3 inches tall and weighs 125 pounds.
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Technology helps Kentucky School for the deaf students read to, teach hearing youth in Danville. The Advocate Messenger (10/28)(KENDRA PEEK kpeek@amnews.com)
Taking off their student hats and putting on their teaching hats, high school students from the Kentucky School for the Deaf became “Reading Buddies” to area elementary students on Friday. The program helps expose the younger students to sign language.
Using iPads that read the story aloud, the high-schoolers then sign to the younger students, teaching them how to use American Sign Language to understand the book. Doing so requires the use of expressions and signing, as words between American Sign Language and spoken English do not match word-for-word, according to Heath McClain, language arts teacher at KSD.
After reading and signing the books, students sat and played a game, similar to the popular Chutes and Ladders, where the younger children had to make the appropriate sign when they landed on an image. The gameboards were created by the high school students to accompany the lesson.
Besides the obvious outcome of teaching the elementary students a few phrases in sign language, McClain said, it also instilled positive memories in the young children regarding individuals who are deaf or hearing-impaired, and the opportunity allowed the high school students to become more confident in communicating with the world beyond their school walls.
McClain explained that the deaf population constitutes about 1 percent of the nation’s overall population, making it essential that students from KSD learn to communicate with hearing individuals and that they become confident in doing so. The experience working with the younger children also enables the high school students to take part in their community, as Danville feels like home to many of the students, although only a few live in the city year-round.
“They feel that they are a part of Danville. They go eat at all the restaurants here, they play games against Burgin and Danville and others in sports, they go to CVS and they get their driver’s license here. They are a part of the Danville community,” McClain says of his students. Being able to partake in community service activities such as this are important to the KSD students.
While the KSD middle school students have been doing a similar project of visiting the KSD’s elementary school students to read with them, this is the first time KSD students have been able to branch into the other school systems in that way.
Obtaining a Teacher’s Tool Kit Grant from the Elmer’s glue company and from the Kids in Need Foundation, McClain explained, they were able to purchase the books and apps for the iPads that were used to read to the elementary students.
His group visited Toliver Elementary, where they read to third-grade students, while another group of high schoolers visited Woodlawn Elementary and read to students in first, second and third grades.
Laura Smith, one of the third-grade teachers at Toliver, said it was a great opportunity for her students.
“I love that they are seeing someone who communicates differently, seeing that part of our community,” she said.
Smith believes that mixing with the students at KSD will instill in the third-graders the importance of being open to others and a sense of compassion for those around them. She also explained that her students had excitedly pointed out how they might now be able to speak with one of the school’s custodians, who is deaf.
Jack Williamson, who has worked at Toliver for 25 years as a custodian, visited the classroom while the high school students were there. He said it was an awesome experience for the Toliver students.
He shared that students at Toliver would often attempt to learn the alphabet or a few words in ASL, such as butterfly or hungry, in order to communicate with him, and this would help bridge that gap. By bringing students from the two schools and cultures together, Williamson said, it will develop greater communication skills all around, and he said it is simply wonderful for the students to interact with each other in this way.
While McClain noted that his students had initially been uncertain of the visit, they seemed to enjoy visiting the elementary school.
“Our students were amazed at how fast these kids picked up on the signs,” he said.
McClain hopes future KSD high school students will be able to visit the schools, now that they have the technology to bridge the gaps.
Follow Kendra Peek on Twitter, @knpeek.
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Arvada restaurant employs 40 adults with developmental disabilities. The Denver Post (10/27) (John Meyer)
ARVADA — Kira Witt is very precise when explaining how she does her favorite job at Jack's Bar & Grill, making sweet- and-sour mix for margaritas with freshly squeezed juices.
She describes each step in the process slowly and deliberately — her halting speech the result of a developmental disability — but the pride and enthusiasm she has for her job is evident, both in her demeanor and her attention to detail.
"When I make the sweet-and-sour, I have to squeeze the lemons and limes, get all of the juice out of them, so they are nice freshly squeezed," said Witt, 31, who is engaged to be married. "Then, with the lemon and lime juice, we have to blend them into simple syrup. When we make our simple syrup, all we need is water and sugar. Then we add the juice to the simple syrup, and I stir that, and I ladle it into our bottles."
Witt has worked at Jack's, which doubles as a coffee shop called Steamers, for six years. She and 40 other developmentally disabled employees there enjoy their work, whether it's cutting potatoes for French fries, rolling silverware in napkins or making jams and jellies to serve with breakfast and sell over the counter.
Crysta Bartram is autistic, which makes her exceptionally talented at dicing vegetables.
"I had a woman ask me the other day, 'Does a machine dice your tomatoes?' " said co-owner Athan Miller. "I said, 'No, we have a woman who's autistic who dices our tomatoes.' They are perfect."
Because of her autism, Bartram wants everything in her environment to be precise. Her cutting board has to be placed perfectly straight on the table, equidistant from the edges.
"We capitalize on that part of her heightened ability," Miller said. "We just have to find each person's heightened ability, capitalize on that, and they become a really productive worker. It's very easy for her to cut perfect little sections. For me, it becomes entirely too tedious. I can't do it. She can do it for four hours."
Before Miller got into the coffee shop and restaurant business with her husband, Jack, a former racer on the U.S. Ski Team from Steamboat Springs, she was a social worker working with the developmentally disabled. Athan, 39, has worked with the developmentally disabled in one manner or another since she was 15.
When the Millers bought Steamers in March 2007, it was a 400-square-foot coffee shop grossing about $70 a day. Elsa Lombardi, 57, was their first developmentally disabled employee, and she's still working for them six years later.
"They're beautiful, they're nice, very nice people," said Lombardi, who makes coffee, puts dishes away, cleans tables and sometimes teaches customers how to say good morning in Italian. "I love them."
Six months after buying Steamers, the Millers moved into a nearby space with 1,300 square feet. In April 2010 they moved into a 2,000-square-foot space at their current location and added the bar and grill, building the restaurant out of a hollow building shell funded out of savings by the Millers and partner Scott Parker, along with a small family loan.
In May 2012 they added upstairs seating with another 1,200 square feet.
Eighteen months after taking over the original coffee shop, sales grew from $25,000 annually to $110,000, and sales the first year in the current location were $530,000.
Aaron Zieschang has been a loyal customer since the beginning.
"To see it grow has just been amazing," Zieschang said. "One of the special parts is seeing all the employees, their faces light up. They take a lot of pride in their work and having a job. I think a lot of us take for granted that we have jobs and forget how special it really is, what it means to us as a person. The fact that Athan can employ these folks and teach them skills, and they really enjoy it and are proud of it, is an amazing thing."
The Millers own the operation debt-free with Parker, whose Parker Personal Care Homes manages housing, supported living, independent living, foster care and vocational rehabilitation services for the developmentally disabled. Athan was a caseworker there when Jack had the idea to buy the coffee shop and hire disabled workers.
Steamers/Jack's employs another 40 workers without developmental disabilities.
"One of the things we talk about is building inefficiencies into the business model," Athan said. "Business models are efficient. The more efficient you get, the better off you are. Our business model is inefficient. The more inefficient things we do, the more work we can provide for people with disabilities."
Now, through the crowd-funding site Indiegogo, the Millers and Parker are trying to raise $45,000 to build a 1,300-square-foot commercial prep kitchen across the street so they can hire even more people with disabilities. So far they've raised $15,000.
"We just don't have the space to do all of our prep work," Athan said. "We're going to have more space and allow more people to do the prep work. We will also have more time to assist people who may have a more difficult time learning the prep stuff. We'll have more time and space to teach that person."
The prep kitchen would allow Steamers/Jacks's to hire 20 to 30 more people with developmental disabilities in a training program. Trainees would learn how to do kitchen work, and then they could apply for jobs at Steamers/Jack's or other restaurants.
The unemployment rate for developmentally disabled adults runs around 75 percent. The Millers get their disabled employees from all over the metro area.
"All people can work, we just have to learn how to teach them how to work," Athan said.
Jack competed in the 1988 Winter Olympics in slalom and giant slalom. After retiring from racing, he worked for a while in real estate. Now, Steamers/Jack's is a labor of love.
"The better our food is, the happier our customers are," Jack said. "The more customers that come in, the more opportunities we can provide. We really are changing people's lives. It's maybe sad to think, but for a lot of these, coming to work and having that opportunity is the greatest thing in their lives. I feel great for giving that to them."
So does his wife.
"They brighten my day," Athan said. "They are funny, they are talented, they make you laugh. Who wants to run a restaurant? Nobody. It's an awful, hard job. But running a restaurant where developmentally disabled people work is the funniest, most chaotic, greatest thing ever."
John Meyer: 303-954-1616, jmeyer@denverpost.com or twitter.com/johnmeyer
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INTERNATIONAL
Duke wrongly sectioned, says Dowager Duchess of Hamilton. BBC News (10/28) (Eleanor Bradford)
The Duke of Hamilton's widow has called for a change in the law so people cannot be held in psychiatric hospitals on the orders of just two people.
It follows the detention of her husband in 2009 shortly before his death.
Under Scotland's Mental Health Act, someone with a mental illness can be detained against their will if a doctor and a mental health officer agree that they suffer from a mental disorder.
However, this must be for the maximum benefit of the individual.
It should also respect the wishes of their relatives or carer.
In England two doctors have to sign detention certificates along with an approved mental health professional allocated by the social work department, the equivalent of a mental health officer.
Campaigners in Scotland have called for Scotland's Act to be changed so that any forced detentions have to be approved by a panel of experts.
'Calling for me'
The Hamilton dukedom is the third oldest in the UK and the most senior title in Scotland, dating from 1643. The family's seat is Lennoxlove House in East Lothian.
In 2009, the Duke of Hamilton had been suffering with dementia and was being cared for at home by the duchess and her staff.
The Duke of Hamilton died in 2010
But a psychiatrist had suggested they go to hospital to check the duke's medication.
The Dowager Duchess of Hamilton said she was led to believe this would just be for a few days but after she filled in an admissions form she was told her husband had actually been sectioned for 28 days.
"He was really upset," she said.
"I could hear him calling for me: 'Kay', 'Kay'.
"I said, 'It's alright pet. You're here voluntarily, you can come home if you want to'.
"Then a voice behind said, 'No he can't. He's been sectioned for 28 days and he may not get out then'."
When the Duchess returned the next day she noticed the duke's speech was slurred and he was suddenly having difficulty walking, due to anti-psychotics she believes were unnecessarily prescribed.
A few days later, when she had to leave for the evening, she looked back to see him trying to escape from a first floor window.
"He rushed out into my arms saying, 'home!' and then they had to pull him away from me.
"I thought, if this can happen to the Duke of Hamilton, what chance has Joe Bloggs got?"
'Hastened death'
The Duchess managed to have her husband discharged on a 'pass' on condition that she arranged 24-hour care for him at home.
She believes the whole episode hastened his death.
The chief executive of Scotland's mental health watchdog, the Mental Welfare Commission, says Scotland's mental health laws are internationally respected and the system for forcibly detaining people is fair providing it is properly followed.
"The most important thing if you're detained under mental health legislation is that you're given a proper explanation of why you're detained and what your rights are," said Dr Donald Lyons.
"It's important you get an explanation in writing of why the doctor thinks the criteria for compulsory treatment have been met.
"There's good argument that this should also be given to the 'named person' - your primary carer, nearest relative or the person you have appointed.
"We've made recommendations on that and we're awaiting a response from the Scottish government as to what they're going to do when they conduct a limited review of the act next year."
The duke's medication was never changed - despite this being the reason for his admission to hospital.
The duchess is calling on the Scottish Parliament to change the law.
"Please look at this act and implement something to prevent this happening," she said.
"I know there are so many patients in these circumstances."
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RESEARCH/STUDIES
New experiments targeting Parkinson’s. The Boston Globe (10/25) (Carolyn Y. Johnson)
A team of scientists at the Cambridge-based Whitehead Institute for Biomedical Research have identified a compound that can reverse some of the toxicity that occurs in brain cells created from Parkinson’s disease patients’ stem cells.
The work, described in a pair of studies published Thursday in the journal Science, is still very early — the researchers aren’t even using the word “drug” when describing the small molecule that jumped out when they screened a chemical library of about 200,000 compounds. But the methods they used demonstrate the power of an approach that knits together multiple basic biology technologies.
Similar experiments may now be used to aid drug development efforts in a wide variety of neurodegenerative diseases, including ALS (Lou Gehrig’s disease) and Alzheimer’s.
“It’s a very nice piece of work — an elegant demonstration of bridging basic yeast screens to cells that are directly relevant to the human condition,” said Dr. Dennis Selkoe, professor of neurologic diseases at Brigham and Women’s Hospital and Harvard Medical School, who was not involved in the studies. “The drug in question did interesting things, but is still a long way from being converted into a medicine that people can take.”
Most Experience, Best Outcomes Fred Hutchinson Cancer Research Ctr
The work in Susan Lindquist’s laboratory at the Whitehead grew out of her ongoing efforts to utilize the humble Baker’s yeast to model complex neurodegenerative diseases. The researchers engineered the yeast to overproduce alpha-synuclein, a protein that forms toxic clumps in the brains of Parkinson’s patients.
Similar to human brain cells, yeast were sickened when the protein formed clusters. The researchers then looked for compounds that were able to reverse the problems. A few seemed promising, but one in particular appeared to affect the way the cells cleared out the alpha-synuclein clusters.
Researchers collected cells from patients with an aggressive, genetic form of Parkinson’s samples and used a technique that won the Nobel prize in 2012 to create stem cells. From the stem cells, they created the neurons that are afflicted in Parkinson’s and tested the compound, finding it could reverse signs of pathology.
Carolyn Y. Johnson can be reached at cjohnson@globe.com. Follow her on Twitter @carolynyjohnson.
***
Original study: here 
REPORT
Identification and Rescue of α-Synuclein Toxicity in Parkinson Patient–Derived Neurons
+
Author Affiliations
1Whitehead Institute for Biomedical Research, Cambridge, MA 02142, USA.
2Department of Neurology, Massachusetts General Hospital and Harvard Medical School, Boston, MA 02114, USA.
3Department of Pathology (Neuropathology), Massachusetts General Hospital and Harvard Medical School, Boston, MA 02114, USA.
4Howard Hughes Medical Institute, Department of Biology, Massachusetts Institute of Technology, Cambridge, MA, USA.
5The Picower Institute for Learning and Memory, Department of Brain and Cognitive Sciences, Massachusetts Institute of Technology, Cambridge, MA 02139, USA.
6Department of Chemistry, Massachusetts Institute of Technology, Cambridge, MA 02139, USA.
7The Parkinson’s Institute, Sunnyvale, CA 94085,USA.
8Department of Biology, Massachusetts Institute of Technology, Cambridge, MA, USA.
↵†Corresponding author. E-mail: lindquist_admin@wi.mit.edu
↵* These authors contributed equally to this work. 
The induced pluripotent stem (iPS) cell field holds promise for in vitro disease modeling. However, identifying innate cellular pathologies, particularly for age-related neurodegenerative diseases, has been challenging. Here, we exploited mutation correction of iPS cells and conserved proteotoxic mechanisms from yeast to humans to discover and reverse phenotypic responses to α-Synuclein (αSyn), a key protein involved in Parkinson’s disease (PD). We generated cortical neurons from iPS cells of patients harboring αSyn mutations, who are at high risk of developing PD dementia. Genetic modifiers from unbiased screens in a yeast model of αSyn toxicity led to identification of early pathogenic phenotypes in patient neurons. These included nitrosative stress, accumulation of endoplasmic reticulum (ER)-associated degradation (ERAD) substrates and ER stress. A small molecule identified in a yeast screen, and the ubiquitin ligase Nedd4 it affects, reversed pathologic phenotypes in these neurons.
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RELIGION
For churchgoers with disabilities, a new kind of service takes some of the stress out.
StarTribune (10/28) (Patti Zarling)
ASHWAUBENON, Wis. — An evening service at Bethany United Methodist Church is casual enough that a visitor feels comfortable wandering to the front of the chapel to ask a question of the pastor halfway through.
The monthly family gathering steers away from the format of many church services, where congregants line up in pews quietly and might glance sideways at attendees who make noise or move around. This service was created for people who have autism or other sensory needs that may make sitting through a regular worship hour uncomfortable. The casual hands-on approach of the Bethany service also attracts families with young children.
The service was launched a few months ago, and is open everyone, Green Bay Press-Gazette Media reported (http://gbpg.net/18QYjKh ). A typical service sees about 25 people, including grandparents. Associate Pastor Cheryl Weaver said the service is an outreach program of the church and is not meant to compete with visitors' other worship practices.
"We recognize that God made all people and Jesus loves all of us," Weaver said. "We want a place where people feel comfortable worshiping. God can work through the chaos to make something beautiful."
A typical service includes moving to the front of the room to sing songs and say a prayer, followed by an interactive lesson. The October lesson was about superheros of the Bible, and participants stopped at various workstations in the church to decorate their capes and masks. Participants could say prayers for people in the aisles on the sides of the church.
Autism is a complex developmental disability that typically appears during the first three years of life. It is four times more prevalent in boys than girls, and has no cure. The cause is not known, but many experts suspect a genetic link.
Those identified as autistic are said to be "on the spectrum," terminology used by experts because of the wide variety of symptoms.
Bethany services avoid loud noises or anything fast-moving, Weaver said.
She said her mother had Alzheimer's and it eventually became difficult for her to sit quietly through a church service. Weaver realized a special service could help both people with sensory issues and their families feel comfortable in church and suggested the idea for Bethany Church.
Church member Cora Pigeon has two sons who are on the high-functioning end of the autism spectrum. She said the services provide a way for them to worship without worrying about being disruptive.
"When you attend church, people will look at you funny when you have kids on the spectrum," she said. "When you're always being looked at, it can be hard to go to church. You don't want to bother. I know a lot of parents who think it's just too hard."
The family service at Bethany allows kids to move around, she noted.
"It can be too stressful for kids to be sitting," Pigeon said. "Even my kids, who are pretty high on the spectrum, I know the more you tell them to sit, the more they want to move. Kids on the spectrum will listen better if they can get up, move around and participate.
"No one judges you here. They get it."
Kelly Paul attended the service with her son 5-year-old Aiden, who has autism. They worked on making a mask and cape while discussing the idea behind the project.
"I think it's nice for parents and kids," Paul said. "You feel like your kid is not being disruptive. When I heard about the service I thought, 'let's give it a try. Now he really likes it. He asks, 'Are we going to the fun church tonight?'"
This is an AP Member Exchange shared by Press-Gazette Media
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CULTURE/MEDIA
After Paralympics are people with disabilities invisible again? BBC News (10/27) (Alison Holt)
In London in the summer of 2012 disabled people were suddenly in the spotlight during the Paralympics. But a year on, have they gone back to being invisible? For The Editors, a programme which sets out to ask challenging questions, I decided to find out.
Along with many others, I spent the summer of 2012 glued to the wall-to-wall coverage of the Olympics and the Paralympics.
It was thrilling seeing individuals achieving the goals for which they had worked so hard.
For those weeks people were judged on what they could do, not what they couldn't do.
When I was a teenager I loved horse riding and dreamed of being a top class eventer or dressage rider, so watching Lee Pearson on his horse, Gentleman, narrowly missing out on his 11th Paralympic dressage title was for me a nail-biting moment.
I felt like I was with him every stride of the way - I certainly appreciated his expertise.
These were games that brought us all together. As the last athletes headed home from the Paralympics, there was talk about how there was a greater understanding of disability, but how much understanding is there now?
Thirteen months on, many of the disabled people I speak to feel they are as invisible as ever.
Ouch has already featured the social media hashtag #heardwhilstdisabled and these everyday comments made to disabled people are at times breathtaking in their lack of sensitivity, even their cruelty.
Examples include, "If she was my kid, I'd have her walking by now," and "I'd do anything to be sick like you and thin."
When I meet disabled people from different walks of life, nearly always the first issue they raise with me is welfare reform.
Some will tell me they understand why welfare is being examined at a time of austerity; most feel attitudes towards them have hardened as a result of the debate around reform.
It's left many feeling they are viewed as benefit scroungers.
Francesca Martinez is an award-winning comic, who also happens to be what she calls wobbly.
Francesca, who has cerebral palsy, says: "Attitudes have been polarised and disabled people are either brilliant athletes or work-shy scroungers and of course there's a huge group who lie in-between those two… this scrounger rhetoric is not really based in reality."
She believes disabled people really want to work if they can, but they do have extra needs which should be recognised.
The government maintains it is targeting help at those who need it most.
In a statement the Department for Work and Pensions insists: "We are world leaders in support for disabled people and continue to spend around £50bn a year on disabled people and their services."
Another constant theme among the people I've spoken to is the day-to-day frustration of getting out and about.
Every journey takes planning and despite more than 40 years of disability legislation, access to some places is still difficult.
The sculptor, Tony Heaton, created the giant wheelchair sculpture that adorned the Channel 4 building in London during the Paralympics.
A wheelchair user himself, he is often frustrated by the difficulties of getting about.
"It's amazing that in 1969 we as a society managed to put a man on the moon and yet we still can't get a wheelchair user from one railway station to another nearly 50 years later… You have to come to the conclusion that it is a lack of will to create a more accessible world, not lack of technology or design skills."
Also, when he sees people stacking their luggage in the wheelchair spaces on trains or drivers who are not blue-badge holders parked in disabled parking bays, he feels it is a sign that generally people don't care.
Like everyone else, the more than 11 million people with disabilities in Britain achieve many different things and contribute to the society in which we live, in many different ways. There has been a lot of progress, but there is some way to go.
During the warm glow of the Paralympics we had an inspiring glimpse of a world where people are celebrated for what they can do. The challenge now is to build on that.
Follow @BBCOuch on Twitter and on Facebook, and listen to our monthly talk show
The Editors features the BBC's on-air specialists asking questions which reveal deeper truths about their areas of expertise. Watch it on BBC One at 23:25 GMT on Monday 28 October (except in Wales and Northern Ireland) or catch it later on iPlayer.
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American Association of People with Disabilities
2013 H Street NW, 5th Floor
Washington, DC 20006 United States
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