Belgian man who was wrongly diagnosed as comatose in 1983 reveals he is concious once he receives a commuication device

From All Headline News:

LONDON, U.K. -- A Belgian car crash patient misdiagnosed as fully comatose in 1983 was finally able to prove he was actually conscious but unable to talk the past 23 years by answering a UK television interview through a special keyboard on Nov. 23.

Wheelchair-bound Rom Houben, now 46, answered interview questions from ITV by typing on a special keyboard with the help of a carer. He said he was "terribly lonely" throughout the 23 years he was unable to talk to his family.

Houben also told German magazine Der Spiegel that the discovery of his real condition was his "second birth."

Doctors at a Belgian hospital wrongly diagnosed Houben as in vegetative state or could not feel nor hear because they did not know he was actually paralyzed. But a University of Liege doctor who tested him three years ago using modern brain scanning technology found out his real condition.

Dr. Steven Laureys and Dr. Caroline Schnakers used the JFK Coma Recovery Scale-Revised (CRS-R), which tests a patients' verbalization, communication, motor and visual functions, and response to sound. The test is more sensitive than the Glasgow Coma Scale used on Houben.

The two doctors' research was published in the journal BMC Neurology early this year exposing Houben's case. Laureys described Houben's ordeal as "horrible" because he was really fully conscious but could not communicate.

Family explains how a service dog is a lifeline for their son with autism

From U.S. News & World Report:

Kaleb Drew, a first-grader with autism with severe speech and developmental delays in central Illinois, recently received some good news from a county judge: His best friend, Chewey, a 70-pound yellow Labrador retriever, who has been his constant companion in school since August, would be allowed to continue to accompany him to school every day.

Chewey is an autism service dog trained by Autism Service Dogs of America, an organization outside of Portland, Ore., that prepares dogs to live with children who have autism. The dogs are trained to increase the child's mobility and socialization and to provide a calming influence that allows the child to make greater academic progress in school.

For Kaleb, Chewey is his lifeline and his guardian angel, says his mom, Nichelle. After receiving the dog last spring, Kaleb has had fewer emotional outbursts, he is better able to focus and transition from one activity to another during class, and he does not try to run away from people—which has in the past resulted in dangerous situations in the school parking lot—since Chewey is tethered to him and acts as a physical restraint. However, if the Villa Grove school district had its way, Kaleb would have to do without Chewey at school. District officials argued in court earlier this month that the dog is not a true service animal and does not perform tasks that benefit Kaleb academically.

Margie Wakelin, an attorney who works with the Chicago-based Equip for Equality and who represented the Drew family, says that service animals are becoming more common as more is learned about the benefits that they can offer in assisting people with a range of mental disabilities—not just autism. "The animals allow the person to better segue into relating with other people," she says.

When dealing with service animals, a common concern raised by school districts is balancing the needs of the student with autism with other children who might have allergies or fear the dog. But experts say that keeping the dogs clean and adjusting class and recess schedules can usually quell any allergy issues, and once other children see that the service animal is very calm and predictable, they welcome the dog wholeheartedly.

Still, Wakelin admits that not many people know the proper etiquette for being around service animals, and it's important for families to listen to the concerns school officials have and to think creatively about how to solve them. Though many states, like Illinois, have laws that allow service animals to be used in schools, that doesn't mean there won't be hiccups along the way.

Fortunately, if you're a parent thinking about using a service animal for your child, there is plenty of guidance on the best ways to maximize your chances of reaching a mutual agreement with the district without resorting to a lawsuit. Advice on the legal aspects of service animals can be found on the Psychiatric Service Dog Society's website.

And when it comes time to find a service animal, you'll want to ask for advice: "In choosing a training organization, talk to all the people around you, especially other parents who have been in similar situations," says Nichelle Drew. "But no matter what anybody else tells you, remember that you know your child the best."

Priscilla Taylor, the founder and executive director at ASDA, says there are many agencies around the country that train dogs to assist people with disabilities that include schizophrenia, agoraphobia (fear of open or public places), and dissociative identity disorder (characterized by conflicting states of mind), but few that specialize in autism. The cost of the dogs, which must undergo years of training and tests before they can go home with a family, can range from free (if the organization is supported by wealthy donors) to $30,000. The Drew family used community fundraising to pay for Chewey, who cost $13,500. Some other training agencies include 4 Paws for Ability in Ohio and Canine Companions for Independence in California.

For Kaleb, Chewey has been a lifesaver, plain and simple, says Nichelle Drew, and he's given Kaleb the opportunity to interact more with his classmates. "I think the other students are all learning a very neat lesson that not many people out there get to learn," she says.

British program encourages wheelchair users to dance

From The Press and Journal in the UK. You can watch an interview with Caroline Bowditch here.

Perth College UHI hosted an inclusive dance event in Goodlyburn Theatre Nov. 25.

The Let’s Dance project, which is led by the Scottish Dance Theatre (SDT) in collaboration with the college, Perth and Kinross Council and Horsecross, aims to challenge traditional assumptions about who can dance and what dance is.

The project includes a series of dance performances, discussions and workshops in wheelchair-accessible spaces.

SDT dance agent for change Caroline Bowditch said: “The piece I do involves me using my wheelchair in a duet with another dancer.

“Being a disabled dancer in a mainstream dance company challenges people’s perceptions and opens up the possibility of dance to a lot of people – in the last year alone more than 4,500 people have come to see the SDT and seen me perform.

“A lot of disabled people want to dance but they can’t imagine doing it, and we hope to change that.”

The next event is scheduled for 6.30pm in Upper Springlands on Nov. 30, followed by two back-to-back events at Perth Concert Hall the next day.

Social and vocational studies curriculum manager Jo West said: “The performance gave an insight into the creative processes of dance and highlighted that dance can be enjoyed by everybody.

“SDT’s visit has given our students and tutors the enthusiasm to encourage and enable everyone to participate in the workshops that are being organised by Perth and Kinross Council.

“We want our students to feel confident, and offer them the chance to learn more about dance, movement and the way the body moves.”

Robotic arm may allow wheelchair users to open doors

From Softpedia.com:

Experts in the field of robotics have had a hard time making their own inventions open doors, on account of the difficult tasks that are involved in the process, but now a team has managed to crack the problem for a real-life application. While it may seem simple for us, a great degree of coordination and intelligence is needed to open a door. Former University of Massachusetts in Lowell (UML) student Erin Rapacki has managed to come up with a low-cost solution that allows for the mounting of a specialized gripper on wheelchairs, which makes it possible for users to navigate through doors without having to reach them themselves.

When opening a door, our brains take into account a number of complex factors, and put them in relation, in order for us to be able to open the “obstacle” in the first attempt. We need to know our exact position as opposed to the door, and also the extent of our own hand. We then must calculate “how much force is needed to open the door, the twisting angles to unlatch the door, and how much force is needed to unlatch it,” Rapacki says. This holds true for robots as well, only, in their case, humans need to devise the algorithms that allow them to perform such intricate calculations fast enough to make them of use.

Another important function that robotic grippers need to perform is being able to catch on a wide variety of door-knob shapes and sizes. As we look at the knobs, we almost instantly understand how they work, and what needs to be done to make them open. But a robot is having a much tougher time trying to do just that, specialists say. The current attempt at creating such a system is not the first, obviously, but general-purpose, wheelchair-mounted robotic arms come in very high price ranges, and the UML team wanted to create a low-cost solution. Its innovation was presented last week, at the IEEE robotics conference, NewScientist reports.

DORA (door-opening robotic arm) proved remarkably efficient in handling the tests that were laid down in front of it. It managed to unlatch doors using about 14 different types of handles. It was also successful in 85 percent of the instances where it had to push the door to open it, and in 65 percent of the cases where it had to pull on it, which is admittedly more difficult. But the best part about DORA is the fact that it was only built under a $2,000 price tag, a massive improvement (cost-wise) from general-purpose robotic arms. Granted, it is specialized on a single function.

Canadian youth forum learns about disability issues

From the Community Press in Canada:

BELLEVILLE, Canada – John Draper (pictured) is a person with a disability, not a disabled person.

Being aware of terms we use such as "confined to a wheelchair" or "wheelchair-bound" was part of what Draper shared with 80 student leaders during the annual Youth Forum at the Hastings and Prince Edward District School Board education centre Nov. 25.

Draper, who has cerebral palsy and can't speak, has a diploma in journalism from Durham College and has been presenting his motivational presentation Together We Rock for three years.

His presentation focused on accessibility and inclusion of people with disabilities, especially in schools, It was developed based on Draper's personal experiences.

"An inclusive school is one where people with disabilities feel like they belong and are included," Draper said.

He identified three keys to creating a school that is accessible for and inclusive of people with disabilities: believing it is possible, accepting that all people are different and have different abilities, and realizing that if everyone works together it can happen.

Draper said that when he was born his parents were told he would be brain damaged, "severely retarded," a vegetable, and have limited potential for being a contributing member of society.

He said he was tempted to send the doctor who made the diagnosis a copy of his college diploma with a note saying, "Best wishes from the vegetable with limited potential."

Draper said students need to be committed rather than just interested in making their schools inclusive.

Commitment means taking full responsibility to make it happen while interest simply means making an effort when it is convenient.

"If you're committed to being inclusive for all students you can't just make excuses," he said.

Draper recounted an experience at his own "inclusive" high school where lockers were assigned alphabetically but his was grouped with those of other students with disabilities.

He took the issue to the vice-principal and had the arrangement changed, arguing that if that was the practice then other students should be grouped according to common traits such as cultural beliefs or religion.

"You must believe in possibilities," he said, adding if people are to be truly inclusive of people with disabilities they have to do it all the time.

Accepting people and recognizing their differences is the second key.

Draper delivered his presentation, which included a professional voice-over, by using his right knee and left hand to operate controls on his wheelchair.

He said sometimes when people find out he can't talk they think he has nothing meaningful to say.

"A lot of people feel uncomfortable around someone who communicates differently," he said. "I feel the same way."

A person is not his or her disability, Draper stressed, saying he would rather be called a person with a disability than a disabled person. He said he is actually the exact opposite of being confined to a wheelchair.

"I am a person who uses a wheelchair," he said.

He also dislikes being called special because people treat someone they call special differently.

"People who have disabilities do not want to be treated differently," Draper said. They want the same challenges and opportunities as others.

He told the students it is important to talk to people with disabilities and to try to understand them. He encouraged them to be leaders – the third key – and to take action and make a positive difference in the world.

He suggested they stop using certain words like cripple and retarded and to tour their schools to look for access issues.

Project Freedom in NJ tries to add more barrier-free housing to the state

From the Times of Trenton in N.J.:

The complexes look as ordinary as any newly built condos or townhouses. Located in several towns across the Mercer County area, these unique housing complexes are part of Project Freedom.

Co-founded by Norman Smith, Project Freedom is a nonprofit organization that develops and operates barrier-free housing for individuals with disabilities to live independently.

"We've had many people drive by looking for Project Freedom housing without actually seeing it. All they see is the housing, and the housing doesn't fit their concept of housing designed for people with disabilities. That's the way we want it," said Smith, who has cerebral palsy and lives in one of the complexes with his wife Shirley and 23-month-old son Joshua.

Project Freedom's housing is specifically designed for people with disabilities who use wheelchairs or have mobility impairments. This means that lowered light switches and kitchen cabinets and roll-in showers are standard for nearly every apartment to meet the physical needs of many people with disabilities.

As the associate executive director of the 25-year-old nonprofit agency, Smith describes himself as "chief cook and bottle washer" of Project Freedom because he handles so many tasks during one week. One day Smith may be giving advice to the staff about low-income housing-tax credits, the next day he is inputting data into Project Freedom's database and the next day he is commenting on emergency-preparedness issues for people with disabilities.

"Unfortunately, many people assume that people with disabilities cannot live on their own in the community, so they conclude wrongly that our housing is some type of institution with nursing staff, rules, curfews and supervision," said Smith. "That's totally wrong. It's unfortunate because thinking that way robs people of their dignity."

Smith has struggled with that himself, since cerebral palsy is a lifelong developmental disability that has affected much of his daily life. Because of it, he needs assistance with bathing, dressing, eating and going to the bathroom.

Building housing is not what Smith envisioned himself doing in 1979 when he graduated summa cum laude from Long Island University with degrees in journalism and political science. Smith credits his college experience for putting him on his current path.

"College was a freeing experience for me. It was really my first time on my own, completely in charge of what I did. This freedom is what I craved when I graduated and returned to my parent's home. Our name is no coincidence."

Project Freedom's corporate history started in 1984, but Smith started feeling the need for an alternative to living with his parents soon after returning home. His father, Richard, started having chest pains when he drove Smith around to his various activities. Smith was torn between continuing to be active in the community and staying home to save his parents work, trouble and pain.

"My parents were both in their 60s at this point, and I was just becoming active in both recreation and advocacy," said Smith. "The disability community loves to meet, and sometimes I had three evening meetings and then horseback riding in one week. This is fine if you're not depending on someone you love for transportation and dressing and that person is tired or in pain."

Desperately wanting to be able to live independently and give others the same opportunity, Smith partnered with Frieda Applegate and members of the Nottingham Recreation Center for the Physically Limited to establish Project Freedom.

Today, Project Freedom has four apartment complexes located around central New Jersey and more are expected to be built in the next few years.

"Britain's Missing Top Model," reality show about disabled models, begins in USA on BBC America Dec. 1

From BBC America's About the show Web page:

Eight beautiful disabled models, seven tough assignments, and one incredible prize; is the modeling world ready for them?

Eight young women compete to break down barriers and overcome prejudices in the exclusive modeling industry. One will win her dream of a photo shoot in Marie Claire magazine. The women will participate in challenges that range from modeling for popular British retailers to mastering the catwalk. Britain’s Missing Top Model sets out to challenge the fashion industry's boundaries and redefine society's concept of the ideal woman.

You can meet the models here.

Did an actual deaf choir perform on "Glee" episode?

By BA Haller
© Media dis&dat

This week’s episode of “Glee” (“Hairography,” Nov. 25) continued with its ongoing “disability themes” by having the Glee gang invite a choir from a deaf school to perform at its invitational. It was a mixed bag of an episode, with one early scene between the deaf school’s choirmaster and Glee director Will Shuester (played by Matthew Morrison) that was ridiculous and outright offensive.

The deaf school’s choirmaster confronts Will about why his school wasn’t invited to perform at the Glee high school, when the choir from a reform school for girls was. The scene focuses all of its jokes on the choirmaster’s hearing impairment, having him yell his side of the conversation and misunderstand what is said to him. And it included an absurd joke about the choirmaster’s phone ringing and he couldn’t hear it; he says he has it on vibrate. (Texting is a part of Deaf culture these days, but obviously the Glee writers know nothing of this and instead have the choirmaster scream on the phone.)

Also, why didn’t the choirmaster have an ASL interpreter with him? In reality, if an interpreter wasn’t available, the choirmaster and Will would have conducted their conversation by email. But of course, then the writers wouldn’t have someone’s hearing impairment to make fun of.

On the other hand, when the deaf choir performed in sign language, the scene was handled with much more finesse. It was obvious that the deaf choir performing was meant to be “inspiring,” but even with that heavy-handedness, I found the combined signed and sung performance of John Lennon’s “Imagine” to be quite powerful. However, I will only continue to praise the scene if someone can tell me that “Glee” used an actual deaf choir. (You can watch a clip of the deaf choir's performance at Gawker.com.)

The show has been rightfully criticized for hiring a nondisabled actor (Kevin McHale) to play the wheelchair-using character, Artie. So I hope “Glee” hired actual deaf people to perform in the Nov. 25 episode.

A deaf discussion board and some bloggers have weighed in with their concerns about the episode:

• Commenters at AllDeaf.com had a bit of praise for the episode because it gave some exposure to sign language on a highly rated TV show. But one commenter, TheWriteAlex said it was too little, too late: “I agree that the exposure of ASL is nice. I hate to be such a buzzkill, but I still think it was a token gesture at best, and just used the same old, tired handicapped views of deafness. I am more interested in seeing shows and movies that truly exemplify the abilities and intelligence of Deaf individuals without focusing on their hearing loss. Unfortunately that is very rare.”


• The This Ain’t Livin’ blog did not like the combined sung and signed performance: “I wasn’t inspired or moved by watching the two choirs perform together. I was PISSED. Because it was framed as perfectly acceptable for the glee club to just jump in on another performance.”


• Adventures of a Young Feminist reports on the slam about epilepsy earlier in the "Glee" episode: “Ok, let’s start with some of the very apparent ableism. When one of the girls (the blond Cheerio, I don’t remember her name) is showing the glee club how to fling their hair around, she actually says “it’s like cool epilepsy.” But she’s the dumb blond who says stupid things, so it’s ok. Yeah, I’m sure people with epilepsy love being othered and objectified in this way.”


• Squidalicious called “last night's episode thread about a competing Glee club from a Deaf school dripped patronizing treacle. Blech.”


• Imdb.com doesn’t have much information about the episode yet, and only has info about one member of the deaf choir played by Weston Mueller “who sings and signs as part of the Deaf Choir in this episode, has a long history of written lyrics and storylines for a similar style show about a hip hop group called ‘T.H.C.’"
• "The Trouble with Glee" on the Rocky Time Warp blog: "Deaf people do not need hearing people to make music; their culture, their language has a music and a power all its own, and it saddens me that what could have been a national showcase of creativity and talent was spent half-heartedly signing a song that will probably make most hearing people watching it think it’s about wishing they could hear. The whole presentation, from the dapper red suits to the literal, unpracticed interpretation of the song’s lyrics, makes it seem as if the Deaf students should earn props for their Glee club based only on pity. "

In Wales, therapy dogs go into schools to encourage disabled children to communicate

From BBC News:

It's the start of the school day for the pupils at Ysgol y Gogarth School in Llandudno, but there's an unusual addition to the classroom.

He's a cocker spaniel called Bertie (pictured), and he's a therapy dog.

Bertie spends one day every week with the children, all of whom have severe learning difficulties.

"This class in particular has the most profound and complex needs within the school," said head teacher Jonathan Morgan.

"The children have multi-sensory impairment as well as learning disabilities - their curriculum is specific to their needs and Bertie plays an important part in that once a week."

Bertie comes to school with his owner Mary Oliver, who worked in education with Conwy council until retirement.

When her partner died three and a half years ago her friends persuaded her to buy a dog and she decided to get involved in the Pets as Therapy Charity, working with children with the most severe physical disabilities and learning difficulties.

"I talk to the children about Bertie - with the children who have visual impairments I get them to feel his coat or his ears, we're trying to get a reaction from the children, we're always looking for a breakthrough.

"Just last week a child who had previously pulled Bertie's ears... well, he picked his ears up and then put them down again very gently - and that's a tremendous breakthrough."

From the noise in the classroom it's clear even the most severely disabled of the children know Bertie is there.

Class teacher Catherine Parkes said encouraging the children to communicate was vitally important, and she believed bringing a dog into the classroom could encourage the children to make themselves and their feelings understood.

"Nobody here has what we would call traditional or conventional communication skills but they are all really effective communicators in their own way," she said.

"So you have to work with these young people for quite a long time to understand their individual communication and when Bertie comes that just exemplifies what we're trying to achieve within school and in this class.

"For example if Joshua makes a sound - we know that means he's happy and excited and that's always the case when Bertie is here. That's his way of saying that."

Lucy Edge isn't able to speak but it's clear the 12-year-old enjoys spending time with Bertie.

As Mary helps her to stroke his ears, her mother Liz explained how the little dog had made a big difference.

"You can tell she's excited as soon as Bertie comes into class, she shakes her legs, her head and her hands, her face lights up, there's a lovely big smile, she shows lots of expression - something she doesn't really show very much," she said.

"She can't talk but she can make herself understood in other ways. Since Bertie came along I've gone out and bought two puppies - she seems to like dogs, so I'll follow what she likes."

Around 4,500 cats and dogs are working in schools and hospitals across the UK. The Pets as Therapy charity thinks as many as 130,000 children and adults come into contact with therapy pets every week.

In Llandudno, it's clear that a small dog is making a big difference.

Disabled vet who inspired Sen. Franken's service dog bill sues McDonalds for $10 million for alleged harassment, discrimination against dog

From the Minneapolis Star-Tribune:

A disabled veteran who inspired Sen. Al Franken's first legislative victory -- a service dog program for disabled veterans -- is suing McDonald's for $10 million after allegedly being harassed, beaten, and told that he couldn't take his service dog inside a fast food restaurant in New York City.

Luis Carlos Montalvan (pictured), a former Army captain who was wounded in Iraq, said he was confronted by restaurant workers on two separate visits, and beaten with garbage can lids on a third when he returned with a camera in hand.

Franken (pictured), in an e-mail message to Montalvan last week, called it an "awful, bizarre story."

A spokeswoman for McDonald's USA said the matter is under investigation and that the company could not comment further, other than to say that McDonald's takes pride in making its restaurants accessible to all customers, "including those with service animals."

Montalvan, 36, of Brooklyn, filed suit Oct. 28, a week after Congress approved Franken's provision establishing a pilot program to pair 200 wounded veterans with service dogs from nonprofit agencies.

In championing the legislation, Franken cited Montalvan and his service dog, Tuesday, whom he had met in a chance encounter at a presidential inaugural ball in Washington.

Franken said Friday that the incident underscores the problems of returning veterans. "Captain Montalvan made great sacrifices fighting for our country in Iraq," Franken said. "I'm not entirely familiar with the facts of this case, but what I do know underscores both the need to help our returning veterans and to raise awareness and increase access for service dogs."

Montalvan served two tours of duty in Iraq, suffering wounds in a knife and hand grenade attack that left him with spinal cord damage, traumatic brain injuries, and post-traumatic stress disorder. Tuesday, his service dog, is a golden retriever who helps him with balance, mobility and emotional support.

Montalvan's suit alleges violations of the Americans with Disabilities Act in a series of events that began last December, several weeks after he completed service dog training.

Visiting a McDonald's in Brooklyn, Montalvan said several employees told him "pets" were not allowed. Even after he pointed to the dog's red service vest, he said various McDonald's employees, including a manager, continued to "glare" at him, inducing a panic attack.

In response to a complaint from Montalvan, an area McDonald's supervisor reportedly apologized in writing and assured Montalvan that the restaurant's workers would receive appropriate training and signage regarding the admissibility of service dogs.

Montalvan returned in January to find a sign stating that service dogs were welcome. However, a different manager allegedly told him no dogs were allowed. The manager reportedly left after Montalvan directed him to read the sign.

Montalvan returned with a camera two days later to find the restaurant closed because of health code violations. He says that when he tried to take pictures, two unidentified McDonald's workers confronted him and beat him with plastic garbage can lids.

A police report of the incident says he "did not exhibit injuries." But Montalvan said he suffered a pinched nerve, migraines and emotional distress.

"It doesn't seem like much on the surface," Montalvan said in a phone interview Friday. "But when you're a disabled veteran, and you have to deal with this, you just want to be left alone and eat your meal in peace. You just want to blend in."

Montalvan's suit alleges violations of the Americans with Disabilities Act in a series of events that began last December, several weeks after he completed service dog training.

Visiting a McDonald's in Brooklyn, Montalvan said several employees told him "pets" were not allowed. Even after he pointed to the dog's red service vest, he said various McDonald's employees, including a manager, continued to "glare" at him, inducing a panic attack.

In response to a complaint from Montalvan, an area McDonald's supervisor reportedly apologized in writing and assured Montalvan that the restaurant's workers would receive appropriate training and signage regarding the admissibility of service dogs.

Montalvan returned in January to find a sign stating that service dogs were welcome. However, a different manager allegedly told him no dogs were allowed. The manager reportedly left after Montalvan directed him to read the sign.

Montalvan returned with a camera two days later to find the restaurant closed because of health code violations. He says that when he tried to take pictures, two unidentified McDonald's workers confronted him and beat him with plastic garbage can lids.

A police report of the incident says he "did not exhibit injuries." But Montalvan said he suffered a pinched nerve, migraines and emotional distress.

"It doesn't seem like much on the surface," Montalvan said in a phone interview Friday. "But when you're a disabled veteran, and you have to deal with this, you just want to be left alone and eat your meal in peace. You just want to blend in."

Tennessee autism service provider has to stop offering in-home service due to state's lack of payment

From WJHL-TV in Kingsport, Tenn.:

Rob Chittum says he and his wife cannot risk waiting any longer for the state to pay them for their services. The Chittums own Behavior Solutions, a TennCare-approved health care provider that offers its services to kids with autism. Last month, Behavior Solutions stopped offering its TennCare-funded in-home service to clients.

“It was a very hard decision because individuals we work with really need the service,” Chittum said.

Although stopping those visits wasn’t easy, Chittum says after spending the last two months waiting for his payments, he had no choice but to call it quits.

“After fighting with this for a year-and-a-half, it was just too much to continue,” he said. “Currently, we’re owed about $1,000.”

TennCare contracts with several private insurance companies to manage this type of care (Applied Behavior Analysis). A handful of Northeast Tennessee providers (Appalachian Behavior Support Service, Joe Darling, MS, and Lighthouse Independent Living) say the last year has been quite the challenge.

At one point, Chittum says he and his wife waited four months for more than $5,000.

“That entire time, we’ve had trouble getting payment,” Chittum said. “You have to stay on top of it; call every day or several times a week and still have trouble getting payment.“

Although the delay in payments is costing providers money, they fear children with autism will suffer the most. Gen Baldwin will tell you that first-hand. For months, Baldwin had some extra help taking care of her 16 year-old son. Twice a week, Chittum would come into her home and work with Nathaniel.

“It changed his whole quality of life,” Baldwin said. “I take Nathaniel to the grocery store now. I can take Nathaniel to festivals to listen to music again.“

According to Baldwin, her son made great strides during Chittum’s visits. However, when Chittum had to stop his services last month, Baldwin says Nathaniel (pictured) noticed.

“It’s all starting to spiral back out of control,” she said. “His destructive behaviors have increased. His aggression towards others has increased. His obsessive-compulsive behaviors have increased.“

The Bureau of TennCare is aware of the problem when it comes to delays in payments. The agency urges any providers with concerns to call the TennCare Providers Services Line at (800) 852-2683.

“Once we were first notified of the payment issues, we worked closely with our (Managed Care Organizations) to enact a plan and what we’ve done since that time, we’ve actually outreached to all of our behavioral health providers,” TennCare Communications Manager Carol Fite said. “Our (MCO’s) are working quickly to try to issue any payment or resolve any problems that they’re having at this point and I’m very confident that that will happen.”

Blue Cross-Blue Shield of Tennessee, the insurance company responsible for managing Chittum’s account, assures Chittum a check is in the mail. Media Relations Manager Mary Thompson says the company mailed Chittum a check for the correct amount today.

“Our providers are very important to us, “Thompson said. “As always, our focus is on ensuring that they receive payment for the important services they provide our TennCare members.”

Still, that check may be too little, too late. Chittum admits he may be finished working with TennCare members who suffer from autism for good. And he fears he may not be the only one.

“The individuals being served are the ones losing out,” Chittum said. “This is not a little thing for families.”

Rudy Garcia-Tolson becomes first above-knee amputee to finish an Ironman Triathlon

From Competitor.com:

Rudy Garcia-Tolson (pictured) became the first double above-knee amputee to finish an Ironman Triathlon when he completed the Ford Ironman Arizona on November 22, 2009 in Tempe.

“The Challenged Athletes Foundation (CAF) has been fortunate enough to watch Rudy grow up right in front of our eyes for the past 14 years,” says CAF Vice-President Bob Babbitt. “When he was eight years old, he told us that he was going to win a Paralympic Gold Medal in swimming one day. So far he has won two, one in Athens and another in Beijing. Nothing this young man accomplishes surprises any of us. There are certain athletes that are special and Rudy is definitely one of them.”

Garcia-Tolson, who lives in Bloomington, California, attempted the Ford Ironman World Championship in Hawaii on October 10th, but when he missed the 5:30 pm bike cutoff time by eight minutes, he knew that he had to give the event another shot.

“I know it’s a challenge to try and ride 112 miles without the use of quads or hamstrings and then to get off the bike and try to run a marathon,” says Garcia-Tolson who is a spokesperson for both CAF and Ossur Americas, “but I knew that to change the perception of what someone with a disability can accomplish, finishing the Ironman under all of the time cut-offs was a huge step not only for me, but for all of the kids and adults who are out there dealing with limb loss and other challenges.”

Garcia-Tolson has spent most of his 21 years pushing boundaries to show that there really are no limits to what he or any other challenged athletes can accomplish.

“For me, having my legs amputated at the age of five was the best thing that ever happened to me,” he continues. “For the first five years of my life I was in a wheelchair and wasn’t able to play with my friends. But after the amputation a whole world of activities opened up for me and today I’m a surfer, skateboarder, runner, cyclist, swimmer and triathlete… and now, an Ironman finisher. Sport is a great equalizer.”

In Tempe, Arizona, Garcia-Tolson completed the 2.4 mile swim in 1:00:42, the 112 mile bike in 8:44:45 and the 26.2 mile marathon in 6:00:22 for a total time of 16:06:27. His next goal? He has a little bit of unfinished business in Hawaii. “I would like to go back to Kona next October to give the Ford Ironman World Championship another shot ,”he admits, “and in 2012 I’d like to go to London and swim in my third Paralympic Games.”

Garcia-Tolson has raced on triathlon relay teams with Robin Williams, won the Casey Martin and the Arete Awards and been showcased on national television shows ranging from Oprah and Nightline to the Disney Channel. A large amount of his time is spent speaking to fellow amputees- and their parents- about what the future holds.

“Rudy is amazingly inspirational,” continues Babbitt. “The crowds in Arizona were chanting for him all day long. He is someone who touches every life he comes in contact with.”

“Reaching this goal has been a dream of mine for years now and I couldn’t have done it without my network of supporters including the Challenged Athletes Foundation, Ossur Americas (who makes my advanced prosthetic running feet), PowerBar, my coaches, the fans and most importantly, the next generation of challenged athlete kids that look up to me” says Garcia-Tolson. “To lead by example and show others that the sky is the limit motivates me to continue to push boundaries.”

California mother gives her son with autism medical marijuana

From ABC's "Good Morning America":

Given the many challenges involved in raising an autistic child, parents are willing to try a variety of potential remedies, many of which are controversial and unproven.

But one potential treatment that has gained attention recently is one that was controversial well before its first mention in connection with autism.

"At first I did some research, and I found a doctor who actually had a protocol for medical marijuana in children diagnosed with autism," Mieko Hester-Perez of Fountain Valley, Calif., told "Good Morning America."

Hester-Perez made her decision to try giving her 10-year-old son, Joey Perez, medical marijuana after his weight had become dangerously low due to his unwillingness to eat. She said that at the time she began the approach, he weighed only 46 pounds.

"You could see the bones in his chest. He was going to die," she said.

"The marijuana balanced my son," said Hester-Perez, noting that she has never used marijuana herself. "My son had self-injurious behaviors. He was extremely aggressive, he would run out of our house... he was a danger to himself and others."

But just hours after she gave him one of the pot-infused brownies, she said she could see a change -- both in his appetite and demeanor.

"Within hours, he requested foods we had never seen him eat before," said Hester-Perez.

She added that her son used to take a cocktail of medications, three times every day, for his condition. He now takes only three, and he has a marijuana brownie once every two or three days. He still cannot communicate verbally.

"I saved my son's life, and marijuana saved my son's life... When a mother hears that her son is knocking on death's door, you will do anything to save his life," said Hester-Perez.

Allen St. Pierre, executive director for the National Organization for the Reform of Marijuana Laws, said that marijuana for children is something that draws concern even from parents within his advocacy organization.

"While there have been some people within NORML's ranks who remain put off by this, I think speaks to just how fearful some are [of marijuana]," he said.

And this reaction remains out of proportion to the possible risks from the drug, he said, noting that, just as some children are given doses of medical marijuana in more regulated settings, children can be given controlled doses of strong drugs such as amphetamines or opioids without drawing as much opposition.

"They probably wouldn't raise an eyebrow," St. Pierre said of parents' responses, "but because reefer madness has been so profound in the United States, that's one of the only things that makes it notable."

But some opposition to this type of treatment is medical concern.

"He is intoxicated. He's stoned," said Dr. Sharon Hirsch, a child psychiatrist at the University of Chicago. "It means that he's under the influence of a drug and may have an addiction. It can cause psychosis, may lead to schizophrenia. [There's] no evidence at all at this time and no reason to prescribe any kind of marijuana for a child with autism."

Because of a lack of research on marijuana and autism, the effect of actions like Hester-Perez's are unclear.

"The data on early exposure and long-term exposure in kids, at least one study suggests small decreases in IQ long term," said Mitch Earleywine, a psychologist and associate professor at the University at Albany who has researched marijuana and currently serves on the advisory board for NORML.

"My only concerns are based on those data of deviant brain development or loss of IQ points, but again, we're talking about someone who is autistic, so I'm not sure how nuts to go about that," he said.

Noting that he only infrequently hears about parents using it for their children's autism, Earleywine said, "My friends who are big in autism treatment, this is not reaching them at all. The news doesn't reach them and they think little of this approach," he said, explaining that many doctors who work with autistic children prefer to use behavioral therapy instead of pharmaceutical intervention.

"I prefer to see people really go with the behavioral treatments as the first line," he said. However, he understands why a parent might choose to give a child marijuana to treat autism symptoms.

"The day to day life with an autistic kid is really difficult to understand," he said. "Having some kind of intervention like this can mean the different between someone's going inpatient or not."

Referring to a Rhode Island mother who wrote about her experience with pot in the online magazine Double X, Earleywine said, "I hope other folks don't give her too much trouble until they've walked a mile in her shoes."

By giving the marijuana to the child in food, parents may avoid some of the negative side effects of smoking, said Earleywine. And while marijuana may be available in pill form, he explained that that is probably not an appealing option.

For one thing, he explained, the pharmaceutical forms of THC -- an active component of marijuana -- available may not have all the benefits that marijuana itself does, and the pills can be expensive as a treatment, since they can range, Earleywine said, from $4 to $11 each, with a child needing three per day.

Meanwhile, he said, it seems a child's dose from growing the drug in-home was probably around $1 per day.

While some parents who have used marijuana for autism may swear by it, it remains rare and unstudied, at least on any significant scale.

"I'm not aware of any research on the efficacy of marijuana on the treatment of autism," said Stephen M. Edelson, director of the Autism Research Institute, which collects information from parents on alternative treatments they try. "That doesn't mean it doesn't work, it just means there's not scientific documentation that it does work."

"We still hear reports from parents who have tried it. I cannot say that everyone who tries it sees a change," he said.

"As far as research, no there isn't and I would think there should be," said Edelson. "That could be one of the few options to treat children who have these very severe behaviors."

But while parents have tried a variety of treatments for autism, the common thread may be the calming effects these treatments have, rather than anything about the treatment itself.

"If medical marijuana calms down some children with autism it may work in the same way that massage or swinging therapies do. These things feel good and that could have a settling effect on kids that are prone to be hyperactive," said Becky Estepp, mother of a child with autism and a spokeswoman for autism advocacy group Talk About Curing Autism.

St. Pierre said one of the primary problems with marijuana research has been that government funding policies have not allowed research into possible medical benefits, only potential harms. His statement appears supported by a search of the database of clinical trials funded by the government, showing trials of

"One of the big concerns we've had for over 30 years is that the federal government has a series of skewed funding priorities," he said. "If the government allowed researchers to move more naturally&we would see more studies on cannabis and autism."

"[The National Institute on Drug Abuse] would not fund a trial of marijuana as a treatment of autism," said Earleywine.

And he said that is unlikely to change even under a more liberal administration.

"It's a competitive time to get those research dollars," said Earleywine. "I think it's unlikely, even thought the attitudes are less conservative."

Blind couple in Illinois fear the loss of Dial-a-ride program in their community

From Phil Kadner's column in the Southtown Star in Illinois:

As far as Kimberly Kuster is concerned, some government programs are so vital they shouldn't be cut.

For her, that's Orland Park's Dial-A-Ride service, a village-subsidized Pace bus that transports the disabled and senior citizens for as little as $1 a ride.

Kuster, 49, is legally blind. Her husband, Joe, 57, is completely blind. (The couple is pictured.)

"We moved here (from Blue Island) because of the services Orland Park provides for the disabled," Kuster said. "This is a wonderful place to live for people with disabilities. I appreciate all that Orland officials have done to make it that way.

"But if they eliminate the Dial-A-Ride program, it is going to make it almost impossible for the visually impaired to live here."

The village board had planned to cut the Dial-A-Ride program to save $350,000 as part of about $2 million in budget cuts. Last Friday, after hearing from Kuster and other Orland Park residents, village officials said they were reconsidering the Dial-A-Ride cuts.

The Kusters are the directors and founders of Oasis for the Visually Impaired, a support organization for the blind. Kimberly Kuster said members of the group, who live in Orland Park, regularly use the Dial-A-Ride program to get to meetings.

"Orland Township has a car service, but that's strictly for the elderly, senior citizens," said Kuster about a service that Orland Park had hoped would pick up some of the Dial-A-Ride customers.

Pace provides a door-to-door paratransit service for the disabled, but Kuster said Pace is trying to shift more of those riders into its regular bus service because of budgetary problems of its own.

"You also have to get a certification to use the paratransit service, which not everyone has," Kuster said.

She and her husband have the certification, which she said was quite rigorous.

"You have to go to an office and walk around, and they watch you and put you through tests and determine if your mobility is such that you qualify for the service," she said.

Kuster said she can walk to local stores on her own during mild weather, but during the winter she couldn't get by without the village's Dial-A-Ride.

"I do all of my grocery shopping using the Dial-A-Ride," she said. "I take it to the doctor, to the shopping mall, pretty much everywhere."

Village manager Paul Grimes said Orland Park is "looking very closely" at ways of keeping the Dial-A-Ride program, especially for the disabled.

In a column last week, I wrote about an 83-year-old woman, who still works, who said the transit program is essential to her independent lifestyle.

A son of another octogenarian said his mother, self-sufficient in every other way, relies on the service to attend social gatherings for seniors and do her shopping. He said his mother would gladly pay more than the $1 a ride the village now charges senior citizens.

I understand the need for governments to make cuts during these difficult times.

And the Dial-A-Ride program at first glance probably looked like a pretty good target because it serves only an average of 70 riders a day, and there seemed to be alternatives for them.

But that's the real problem when you start talking about government cuts. Despite what many taxpayers believe, there's a reason most government programs exist.

In theory, cuts may make sense. In reality, there's an impact on the lives of ordinary people.

Orland Park officials are to be commended for understanding the human toll their cuts would take and looking for workable alternatives and other programs that might be trimmed.

It seems to me that Orland Township might be better served by replacing some of its seven cars with minivans equipped for the disabled.

Governments built roads to move people from the cities to the suburbs and commuter train lines to get people in the suburbs to their jobs in the cities. Then the suburbs approved special housing for senior citizens when the elderly could no longer maintain their single-family homes.

But few suburbs seemed to have planned for the elderly no longer being able to drive or the transportation needs of the disabled.

Orland Park is one of the few that did address these issues, to some extent.

For the most part, however, suburbia remains a place where a car is a person's lifeline to civilization.

Pennsylvania amputee has role in newly released Charlize Theron film, "The Road"

From The Tribune-Review in Pittsburgh:

David August (pictured) calls it one of the greatest experiences he's had in his life -- even if it entailed an exhausting 16-hour day and being naked for part of it.

August has a supporting speaking role in "The Road," the film version of the Cormac McCarthy Pulitzer Prize-winning novel that opens Nov. 24. August is listed in the credits as simply "Man on mattress" -- although even the characters of stars Viggo Mortensen and Charlize Theron are simply known as Man and Woman.

August's s on-screen presence is limited to one, grisly scene involving amputees and cannibals. But the lead singer for local country band North of Mason-Dixon still revels in the experience.

"It was an exhilarating thing for me," says August, a West Newton native who lives in Monroeville.

The vocalist wasn't looking to start a film career when a friend let him know about a call for "thin amputees" for "The Road." The idea of auditioning intrigued him, especially because "a lot of people don't know I'm an amputee," he says. August lost a leg during a 10-car accident in a snow storm in 1989.

Casting agents were impressed with his audition, and he was eventually cast in the film.

August's scene was shot in Harmony, Butler County, in a rented mansion. It comes at a crucial juncture in the film as Man and his son arrive at the house where amputees are being feasted on by cannibals. August is the most recent amputee; his leg is gone, he's on the mattress bleeding, begging for help when Mortensen comes to the door.

This is where the clothes come off.

"I thought I was going to be a lot more nervous," August says, noting that everyone else in the scene had to shed their clothes. "That was the harrowing part of the whole deal. But it was with a small crew, and I knew everybody had to do it."

Still, the camera's focus ends up on August as he speaks to Mortensen, who lurks outside the house. Surely that must have made him a bit on edge. And it would have, had the noted actor actually been there. In a bit of Hollywood sleight of hand, the parts were filmed separately, then spliced together. August actually spoke to an empty doorway.

"I did meet Viggo for 10 seconds in between takes of another scene," he says.

August is currently in the midst of recording an album with his bandmates in North of Mason-Dixon. The release should be ready early in 2010, and that will be his focus in the coming months.

But he's not adverse to taking another shot at acting.

"If the right thing came along and I thought I would do well at it, I would definitely do it again," August says.