By: Mike Berkson

An interesting situation occurred this weekend. It was one of those things that you had to laugh at, instead of putting your fist through a wall. I went to the Cubby Bear (Chicago) for a birthday party. The party was on the second floor. So, obviously I had to take the elevator. (Side Bar: The reason this location was chosen was because it was accessible.) The elevator was not a traditional elevator, it was a lift that was converted into an elevator. It was only for people in wheelchairs, not for anyone or anything else. On the way up the ride was fine, a little bit cramped and a little slow, but fine. The party was great, I got to talk with friends and discuss possible venues for Handicap This, all in all a pretty good party. When we were ready to leave, we got in the elevator and one of the staff members pressed the button and turned the key. We were there for a good 30 seconds before we realized that something was wrong. We just thought it was really, really slow. They tried pressing it a few more times, the consensus was that it was frozen. My next thought was the stairs. Unfortunately, the 20 stairs were too narrow and too steep. We did consider having a group of people carrying me down the stairs. What makes this even more difficult is the fact that about 4 years ago, I had back surgery to straightened my spine. In the process they fused 2 titanium rods to my back each one about 18 inches long. This made the situation even more complicated. My safety would have been compromised. Our next option was to call the Fire Department. The staff at the Cubby Bear was more than accommodating. They called people on their day off including the manager, just to help us and they were happy to do it. When the Cubby Bear called the Fire Department and explained the problem, the Fire Department told them that since it was not an “emergency” there was nothing that they could do. The only way that they could come was if I needed to go to the hospital. Needless to say, the whole scenario was beyond comprehension. Luckily, after an hour and a half, the good people at Cubby Bear were able to fix the elevator. Living with Cerebral Palsy, I have had my share of experiences like this, we are no strangers to overcoming adversity. But what would have happened if the elevator did not work?

Princeton Union Eagle
By Joel Stottrup



Three Princeton students are now enjoying what most kids take for granted — riding a bicycle.

For a long time eighth graders Stephanie Ackerman and Brady Hopland, and fifth grader Colton Benner were unable to ride regular bicycles because of their disabilities. But they could ride the adaptive kind of bikes available during school hours when they had adaptive physical education. However, when they were not in school they were out of luck. They just had to watch other kids ride their bikes.

That changed for Stephanie, Brady and Colton this year, as they got their own bicycles, bikes with three wheels that they can ride. The idea came about after Princeton developmental adapted phy ed instructor JoAnn Aderman began thinking about the bicycle-deficit plight of the three.

“Every kid deserves a bike,” Aderman said at her office last week. “Most kids want to be mobile, get around. Most kids want to ride a bike, they want to swim and be able to get places.”

Trouble is, the three-wheel adaptive bicycles designed for children with disabilities can cost hundreds of dollars and are unaffordable for many families.

Aderman had met Sally Brown who has a St. Paul-based business called Every Kid Mobility that helps find and obtain bicycles for families with kids with disabilities. Brown, who has cerebral palsy, got her own adaptive bicycle at age 50.

Eighth-grader Stephanie Ackerman's adaptive bike allows her to ride with her firends. "Every kid deserves a bike," said adapted phy ed instructor JoAnn Aderman.

For a child to get their own bike and ride is “such a life change,” Brown said last Thursday. “Riding a bike is like a rite of passage. It’s an amazing thing.”

Brown puts on bike fairs during which people can look at the different styles of adaptive bicycles available and see which ones would be suitable. Aderman met Brown at one of those fairs.

Brady would need an especially adaptive bike as he is severely disabled physically and cognitively, said Aderman. The adaptive bicycle he ended up with through the help of Brown, would be the most expensive at $1,700. Colton’s would be the next most expensive at $700-800, according to Aderman, and Stephanie’s bicycle would come in at about $200. Stephanie’s requirement was mainly that it have three wheels and coaster and hand brakes, Aderman explained.

Brady’s three-wheel bike had to have certain cables and a special seat, handlebars and pedals, Aderman noted.

Before the bicycles could be purchased, funding had to be arranged. The three families applied for and received grants from Minnesota Big Dads, Inc., Princeton Lions Club and Minnesota P.E.O. Home Fund to fund the purchases. Money was also donated by some Princeton school staff members, mostly at the middle school and some at North Elementary, Aderman said.

Colton’s new adaptive bicycle is a three wheeler that sits low to the ground and has a sleek, low slung look.

The left side of Colton’s body is compromised by the post strep autoimmune dystonia that he had when he was seven and at the end of second grade, his mother Bobbi Benner noted.

During the summers of 2007 and 2008, the Benners tried seeing if Colton could ride a regular bicycle. They added training wheels, and also Velcro to keep both of his feet on the pedals.

“But it was hard for him and he still wiped out,” Bobbi said. “He couldn’t get going fast enough and he couldn’t stop. He was frustrated and he would cry.”

Colton, Stephanie and Brady received their adaptive bicycles this past summer.

Colton’s new adaptive bike is “super cool,” Bobbi says. “All his cousins and stuff want to ride it. It’s real smooth. He doesn’t need to worry about the balance and he can go a lot faster, smoother.”

Colton can now also keep up with the rest of his family when they are bicycling, and Colton rides much longer, Bobbi says.

Colton has ridden with family members from his home outside city limits and into Princeton to go to the Dairy Queen. He’s also been able to go on the bicycle during family camping trips.

“It’s been really neat for him,” Bobbi said. “It’s kind of a freedom thing. He’s just so excited.”

Bobbi remembers that, at first, Colton hesitated checking out an adaptive bike, thinking he would not look so good on one. She remembers that when the family took him to an adaptive bike fair in St. Cloud to look at adaptive bikes that she could hardly get him out of the car. But once he was at the fair and trying one of the adaptive bicycles he liked, she could hardly get him to leave.

“It’s been really fun,” Bobbi said. “We were really thankful for JoAnn’s help and referral.”

Aderman said she thinks Colton is still “bound and determined” to ride a two-wheel bike.

When Bobbi was asked about that, she agreed. Colton has still been trying to ride a regular bicycle, Bobbi explaining that he had gotten up on a cousin’s two-wheel bike this past summer but “wiped out. But we know he’ll get up again.”

Colton works hard to succeed at things, Bobbi said. She noted that he has not being able to use his arms to swim like most people. So, during a family vacation in Florida he taught himself to swim in the resort swimming pool and taught himself by moving his body “like a dolphin,” she said.

Aderman talked excitedly about Colton, Brady and Stephanie getting their bikes and being able to now ride beyond the school day.

It wasn’t until the seventh grade that Stephanie rode a bike and that was because it was the first time Stephanie had access to an adaptive bicycle at school, Aderman said. Now Stephanie will benefit from getting the exercise that bike riding offers, Aderman added.

And Brady?

“There are only a couple things he’s successful at and bicycling is one of them,” Aderman said. “He loves it.”

It is a pretty simple question what accommodations do you need. But is it. I have found that when an accommodations is given, not all the questions are asked at that time. Because the logistics have not be able to be thought thru or worse yet the answers are assumed before and never asked. When I was 18 I went to my college for placement tests , when we got there we forgot to request a note taker, Whoops assumed I would have one because I always had one. I had a friend who asked for a handicapped accessible Hotel room only to realize they forgot to ask the width and found his chair did not fit. Basic questions but over looked. Then after the accommodation is made realizing not all questions were asked, like who is responsible for what.

I’d like to think 50% of the discrimination we as disabled professionals face is because people 1. Don’t know the question to ask 2. Don’t know how to ask it or 3. Feels the laws prevent them from asking. Its up to us the disabled professional to deal with these issues, and concerns. We are self don’t have the answers but through building a network we can educate ourselves and others."

Professional_Disabled: August 2009:

www.fdlreporter.com
By Stacy Ellingen
Special to The Reporter

Is the economy ever going to get better?

Where are the jobs?

Will I ever get a job?

These are the questions going through the minds of recent college graduates.

I ask myself these same questions daily, except I have some extra concerns to worry about.

Because of oxygen loss at birth, I was diagnosed, at age 3 months, with Athetoid Cerebral Palsy .

CP affects every part of my body. My muscle tone fluctuates, which makes simple tasks seem impossible. Except for when I'm sleeping, my body is always moving. I need help with all of my basic needs (dressing, toileting, feeding, etc.) I use a power wheelchair to get around and a communication device to speak with others.

Despite having a disability, I've been able to accomplish far more than many people expected. After a couple of years of early childhood classes, from kindergarten on, I attended regular classes. A one-on-one assistant was assigned to help me in the classroom. I did almost all of my schoolwork on the computer and had accommodations as needed. Even though assignments took me much longer to do, I never took any assignment modifications. I graduated from Fond du Lac High School in June of 2003.

Moving on to college

Graduating from high school was a big accomplishment, certainly, but I knew I wanted to go on. In the fall of 2003, I started at the University of Wisconsin-Whitewater. Before deciding on UW-Whitewater, my parents and I did a lot of research. We had to look at different things other than what a "normal" prospective college student would. Things such as accessibility, academic support services and personal care services were critical when I was looking at colleges.

UW-Whitewater is nationally known for specializing in serving students with physical disabilities. There's a center called the Center for Students with Disabilities where all of services for students with disabilities are located. Services include note taking, testing services, alternative media, transportation, physical therapy, and many others. There are also in-class aides for classes that have labs.

I started out majoring in business, but after struggling through a couple econ classes and an accounting class, I switched my major to advertising with a multimedia minor. Because assignments took me longer to complete, for the first few years, I was unable to take the full number of credits. Therefore, it took me a little longer, but I graduated in May. I can't even begin to express how thankful I am that I went on to college. It helped me become so much more independent and self-confident.

After graduation, I moved back home to Fond du Lac. Currently, I'm looking for a job and working on getting an apartment set up. I'm working very part-time as an online mentor for high school students with disabilities.

Dream career

My dream career is to design publications for a company. I'm working with the Division of Vocal Rehabilitation and disability employment agency to help me get a job. With the job market as tight as it is today, it will be a challenge for me to land a job. I will have to prove that, despite my disability, I will be beneficial to the employer. This isn't an easy task.

To be fair to the employer, I'll have to explain my situation and the accommodations I will need. I'm well aware that revealing this will automatically put me at a large disadvantage, but it's something that needs to be known.

In my classes, I've learned that because of tight deadlines, some companies work in a very fast-paced environment. That will be something that I will have to discuss with the employer.

Because of my physical limitations, things take me much longer to complete. People who know me know that I'm a very hard worker, and I won't stop working until the project is done. I'll have to prove that I'm dedicated to the job.

I have a portfolio that I can show which not only includes articles I've written for the paper, but also projects I've done. This will provide the employer with a sample of my capabilities.

Eventually, I'd like to work in an office setting, but I'm aware that when I first get a job, I'll most likely be working from home. If and when I work in an office, DVR will work with the employer to provide the accommodations I'll need. I'll need accommodations such as accessible doors, an accessible restroom, an adapted computer desk and an adapted keyboard.

Hiring people with disabilities adds diversity in the workplace, which builds companies' reputations. It shows that the company is willing to work with people with disabilities. It may take awhile, but I'm confident that I will find something right for me. I'll put it this way — I won't give up until I do.

Additional Facts
Disability series
Today’s personal stories by Stacy and Deb Elligen are part of a 4-part series by The Reporter that focuses on people with disabilities.

Monday’s feature talks with employers and services that help the disabled find employment and highlights the U.S. Census Bureau latest disability figures in Fond du Lac County.Tuesday we talk with Alto resident Don Saffron, who has started his own business.

October is observed as Disability Awareness Month to help empower Americans with disabilities through awareness.

RULES FOR COMMUNICATING WITH PEOPLE WITH DISABILITIES

1) Speak directly rather than through a companion or sign language interpreter who may be present.
2) Offer to shake hands when introduced. People with limited hand use or an artificial limb can usually shake hands.
3) Always identify yourself and others who may be with you when meeting someone with a visual disability.
4) If you offer assistance, wait until the offer is accepted.
5) Treat adults as adults. Never patronize people in wheelchairs by patting them on the head or shoulder.
6) Do not lean against or hang on someone’s wheelchair.
7) Listen attentively when talking with people who have difficulty speaking and wait for them to finish.
8) Place yourself at eye level when speaking to someone in a wheelchair or on crutches.
9) Tap a person who has a hearing disability on the shoulder or wave your hand to get his or her attention.
10) Relax. Don’t be embarrassed if you happen to use a common expression, such as “See you later” or “Did you hear about this?” that seems to relate to a person’s disability.
More information is available from American Association of People with Disabilities at www.aapd-dc.org

| Ocala.com | Star-Banner | Ocala, FL

By Andy Fillmore
Correspondent


Published: Wednesday, September 30, 2009 at 6:30 a.m.


Diane Leaf has been toiling almost a year for grins.

Or, more specifically, smiles.

Since January, Leaf, program supervisor for the city of Ocala Recreation and Parks Department, has been working on a joint venture with Marion County Parks and Recreation and the Florida Disabled Outdoors Association to bring SportsAbility to the area.

SportsAbility - open to the public and free to participants and spectators - is a two-day event aimed at making park and outdoor leisure activities accessible to those who encounter barriers to healthful leisure time.

Leaf, a certified therapeutic recreation therapist, said the event will be fun for participants experiencing something they may never have done because conventional playground and sports equipment would not accommodate their wheelchairs or allow accessibility.

"My joy is seeing the smiling faces," Leaf said.

SportsAbility literature lists some benefits of outdoor activity as better overall health and avoiding additional health problems.

Everyone deserves the opportunity to be involved with healthful and relaxing leisure activities, Leaf said.

"Prior to the Americans with Disabilities Act, there may not have been the same opportunities," she said.



SportsAbility is a program of the Florida Disabled Outdoors Association. Outdoorsman David Jones founded the 501(c)(3) nonprofit in 1990 after a hunting accident left him with paralysis in his left side. He wanted to establish a means to allow people with varying physical capabilities to start or continue to enjoy the benefits of outdoor activities, Leaf said.

"Individuals have participated with conditions from arthritis to cerebral palsy," she added.

During the event, activities at the MLK Recreation Complex and the Ed Croskey Center's Hampton Aquatic Center from 10 a.m. to 3 p.m. Friday will include wheelchair basketball, adaptive golf and tennis, bocce, laser target shooting, an interactive fishing simulation and therapeutic horseback riding. An adaptive aquatics demonstration and pool party are on the agenda.

An exposition on the recreation complex grounds will include sponsor displays with information about adaptive equipment such as custom-made sit-to-ski chairs. The Pyramid Players, sponsored by the Marion County Children's Alliance, will provide song and dance entertainment at 11 a.m. and 1 p.m.

In the same timeframe Saturday, events will take place at the Carney Island Recreation and Conservation Area in Ocklawaha. They will include skiing programs by U Can Ski 2, sailing, canoeing, kayaking and pontoon boat rides. Also on tap are archery, target shooting, fishing and nature presentations.

A free hamburger and hot dog lunch will be available, while supplies last.

Therapeutic horseback riding also is planned that day, and Betty Gray of Stirrups 'n' Strides is planning to bring Morgan horses Barney and Knickee. Gray's daughter, Kathy, is a national award winner in Special Olympics riding.

"It's miraculous what riding has done for Kathy; she would likely be in a wheelchair without it," Gray said.

"Kathy plans to participate in the water sports on Saturday," she added.

Leaf said she hopes for a good turnout.



"I love to help people" in the therapeutic recreation setting, Leaf said. "That inspires me."

Words by Geoff Abbott and Pictures by Steve Ford




Nik Royale climbing mountains close to his home near Llanberis


A rock climbing enthusiast is hoping to become one of the first disabled instructors in the UK.

Nik Royale is in the final stages of a training process which will allow him to instruct at indoor climbing centres.

The 36-year-old, who lives near Llanberis, Gwynedd, has a progressive form of cerebral palsy and needs to use a wheelchair at times.

If successful, he hopes to set up disabled rock climbing clubs "to break down the barriers".

Mr Royale said: "I need the wheelchair because I can't walk all the time and after I've been climbing my legs go all shaky because it puts a lot of pressure on them.


There is a lot of misconception about the sport that it's only suitable for the very fit and very strong... it's open to absolutely everybody and Nik is very passionate about the sport and wants to publicise that fact

Jude Hargreaves, Awesome Walls, on Nik Royale, pictured
"If I pass my assessment I would like to help set up disabled rock climbing clubs because it can help with balance, coordination, physical fitness, stamina and confidence.

"I would like to break down the barriers so people in wheelchairs can actually do it," he said.

He has recently started training at a centre in Liverpool as part of a requirement to climb at three different centres, and said the more challenging facilities had helped him develop.

"Awesome Walls is huge and they're constantly changing their routes," he explained.

"It's very wheelchair-accessible and the staff are friendly and they've made me feel very welcome.

Technical skills

"They've let me train there for free and that includes two friends who can climb with me.

"I've increased my technical skills and I'm climbing a grade higher now."

He is helping at the centre as an assistant instructor and has been a hit with the younger climbers.

The centre's assistant manager, Jude Hargreaves, said people could forget his disability because he was already a "very good climbing instructor".

"He knows his stuff which is essential and we're really pleased to have him on board," said Jude, who has worked at the centre for two years.

"The way it works at the climbing wall is that we like it to be open to absolutely everybody.

"There is a lot of misconception about the sport that it's only suitable for the very fit and very strong.

"That's not the case. It's open to absolutely everybody and Nik is very passionate about the sport and wants to publicise that fact."

Whether you are entering the workforce for the first time, returning to the job market, or seeking advancement, the challenges of a job search are similar. Your goal is to find the position that best meets your needs. You must be qualified and able to sell yourself as the best applicant for the jobs for which you apply. Here are some tips that can help you in meeting your job search goal.

Have a strong sense of who you are. Know your assets and how to market them to employers. Be as confident as possible that you are the best applicant for the job and reflect that in all communications by voice and in writing.

Follow the current job trends. Take the initiative to maintain cutting edge skills that match changing employer requirements. Take classes that are not only of interest to you, but also bolster your workforce qualifications. Learn another language. Take a computer course. Join job networking groups.
Be prepared to increase your technical computer skills with various software and office equipment. Computer skills and offerings change quickly. Be flexible and ready. This always increases your marketability in the job market.
Conduct online job searches in addition to searches in the classifieds and personal referrals. Visit employer Web pages and key job sites such as:

• CareerPath: http://www.careerpath.com/
• Monster Board: http://www.monster.com/
• CareerMosaic: http://www.careermosaic.com/
• CareerBuilder: http://www.careerbuilder.com/

Consider doing informational interviews with various companies. This not only gets your presence and qualifications before a potential employer, but helps you practice and prepare for varied interview processes and styles. Practice one-on-one as well as panel interviews. You never know which job will require which style of interview.

Keep your resume current and have different copies of it prepared to meet different job objectives. Be ready to customize your resume to reflect the assets you bring to each job. Use key words that can be electronically scanned by potential employers to positions you want. Reflect continuous employment in your skill area and fill in gaps with education and volunteer work whenever possible. Summer employment should support your field of interest. Volunteer in your community or at your house of worship, or obtain temporary jobs if you are currently unemployed. Get out there and stay active to the best of your ability be seen and heard. Select the resume format that minimizes any gaps in employment. Seek the help of a professional resume writer or use a resume writing program to help you highlight your strengths in the best way possible.
Locating a job can be as full time an endeavor as actual employment. Give full attention to all that you do and be mindful of any errors in your information. Errors will knock you out of the running quickly. Keep your employment dates up to date as best you can. Call your previous employers to double check those dates.

It is crucial to have a written personal plan for growth opportunities when you are working. Seeking other opportunities does not stop simply because you are already employed. You are looking to grow in each opportunity you take on. Know what you must do each day to move closer to your goal for a promotion or the next job. Stay focused and motivated.

Maintain and continuously strive to broaden your network. If you are working, network inside the company. Join professional groups. Choose opportunities that match your skills and goals. Request and study annual reports of select companies. Reflect each company’s image in all communications with each company’s representatives. Make good use of your local library. Read trade journals and business publications in your chosen field. Get to know your chosen career track and its emerging trends inside and out.

Develop your personal presence. A pleasant personality is a necessary asset. Your eagerness to adapt and to be a team player is essential. Show flexibility and eagerness to move forward with emerging change. A sense of humor and positive attitude are essential as well.

You should only disclose a disability if you require an accommodation for an interview (such as asking for forms in alternate formats, locating an accessible interview site or if you think you might need an interpreter during the interview). Also when it comes to performing the essential functions of a particular job, you will need to discuss with your employer your accommodation necessities. Your resume and cover letter should focus on the abilities you bring to the job, not on your disability.

Look your best from head to toe. A clean wheelchair, crutches or cane also goes along way to set off your interview outfit. Dress conservatively. Be brief and to the point when answering interview questions. Maintain a demeanor of success and reflect the company image when you respond to the interviewer’s questions. Have full confidence in what you bring to the employer and show how your skills meet the company's specific hiring needs.

Also, be prepared to ask thoughtful questions about the job and the company. Show you are interested in the company by doing research on the company beforehand and never say anything negative. Follow up immediately after your interview with a thank you letter or e-mail transmission. This keeps you in the employer’s mind well after the interview and sets the standard for courteous correspondence and behavior

By Burt Constable | Daily Herald Columnist

The banquet hall for Annie Hopkins' wedding reception is rented for Oct. 3. A jazz trio will set the mood for the elegant, reception dinner of steak, chicken and a vegetarian option. The wedding band rocks, and the army of guests is ready to cut loose after eating. And the open bar, don't forget the open bar. As an added bonus, Annie's 25th birthday is just three days later.

It promises to be like one of those other weddings where Annie had the time of her life. The Batavia woman always had great fun at weddings, right up until the day she died.

"Annie loved weddings so much, she wanted to have one instead of a funeral," explains her big brother, Stephen Hopkins, 26, who has orchestrated this wedding celebration for his sister, who suffered from spinal muscular atrophy and died Jan. 20 of complications during a medical treatment.

A wedding bash for a dead woman who wasn't even engaged is unusual.

"That's why I think out of the 400 people we thought might show up, we'll only have 250," says her brother, who goes by Stevie. "They just don't get it. That's fine. I'm down with being unique."

He gets that attitude from his little sis, says Stevie, who also shares the spinal muscular atrophy that put them both in wheelchairs.

"It doesn't stop us from doing everything we want to do," says Stevie, giving Annie credit for blazing that trail. "She was an awesome, awesome girl."

Living up to her brother's description of her as a "disability advocate and socialite," Annie had great hair, makeup and fashion sense. She sported eight or nine tattoos. And when doctors or nurses noted piercings such as the one in her nose, she sometimes flashed them a peek at two more piercings they might not have expected on someone in a wheelchair.

"Annie was a beautiful, vibrant woman with an unmatched sense of humor," says Katie Arnold, 23, who became best friends with her neighbor when they were little tykes. "She taught me so much about independence, acceptance of others, and always striving to do the best for yourself, your body, your friends, family and community."

With more than 2,000 people who attended her wake, Annie's friends can't fit into one column.

"Annie Hopkins was calculatedly reckless in how she chose to live, always pushing the boundaries of her disabilities," e-mails Aaron Mlot, 31, of Downers Grove, who became a friend after volunteering with the Muscular Dystrophy Association. "While this at times worried her family and friends, she never hesitated to test her limits, especially when it came to giving to others. Annie was everything a person hopes to be as a family, friend and community member. She was generous, courageous and empathetic, and she lived how people all wish to live. Annie embodied the very best spirit that humankind has to offer one another and the world."

The daughter of Stephen and Leslie Hopkins, Annie graduated from Batavia High School and, despite having lots and lots of fun with her brother and a host of friends in college, got a bachelor's degree in community health and a master's degree in disability studies and human development from the University of Illinois at Urbana-Champaign. She was a community-access consultant for the university's Disability Resource Center, a regular at the pride parade and other events supporting people with disabilities, was working on her doctoral degree and formed her own company called 3E Love, www.3elove.com, which stands for her call to "Embrace diversity. Educate your community. Empower each other. Love life."

Annie designed and trademarked the company logo of a wheelchair sitting on a heart, and had that image tattooed on her back.

"I got her wheelchair-heart symbol tattooed right after she got hers. She was SO much fun," e-mails 20-year-old Viki Peer of Chicago, who started as Annie's personal assistant and became a great friend.

"I'd say more than 150 people have that tattoo now," notes Stevie, who is one of them. Annie's Facebook writings and videos, such as the ones of her putting on makeup or spending several minutes zipping around in her wheelchair as she uses a slotted kitchen spoon to retrieve her dropped cell phone, are funny, touching and inspiring.

"In addition to grieving the loss of Annie these past few months, I am constantly reminding myself how amazing it is that I did have her in my life and I will always have her in my life," writes Christine Scully, 26, a friend, roommate and assistant for Annie. "Annie called herself 'Everywhere Annie,' and she really is everywhere, even in death."

Friends say Annie's spirit will be at the wedding reception, which is open to the public and doubles as a fundraiser for the Anne Hopkins Foundation, which awards scholarships to students working for people with disabilities. Visit the Web sites www.annehopkinsfoundation.org and www.annieswedding.org for more information.

"Annie didn't care that she couldn't walk. She was upset she couldn't dance," Stevie wrote in a blog on the day Annie died. "Here is to hoping she's dancing now."

Watch videos of Annie Hopkins at www.youtube.com/user/annemariehopkins

An investigation for BBC Wales suggests that many shops and other premises could be in breach of the law about access for disabled people.

In 2004, a clause was added to the Disability Discrimination Act, ordering "reasonable adjustments" to premises to make access easier.

Five years on, however, research suggests compliance with the law is patchy



listen here

Baby hospice seeks top spot
ZOE’S Place is determined to clinch the double by being top of the table again at the end of this year’s Wish campaign.

And with only five days to go to register it won’t be long until the tokens start mounting up.

Last year the baby hospice in Normanby collected a staggering 143,830 tokens to take home £1,403.62.

“It was the cutting and sticking I remember, we went through a lot of Pritt Sticks, it was all hands on deck,” said fundraiser Sue Fox, who is ready to do it all again and hopefully raise even more money.

Chief executive Mark Guidery said the 2008 Wish funding was used to buy a standing frame to assist youngsters who struggle to stand while they have physiotherapy.

“It’s a very expensive, specialised piece of equipment,” he said. “Without the money from Wish we would have had to sacrifice something else to buy it.”

Mrs Fox said: “We have 55 families that regularly access Zoe’s Place so we need every penny we can get.

“We know it’s difficult at the moment because of the current financial climate, a lot of people find it hard to find that extra pound to give to charity, so something like the Wish appeal is brilliant for us.”
Zoe’s Place is a home from home for babies who have life-limiting illnesses and complex needs.

It offers palliative and respite care for babies and infants from birth to five years old and can take up to six youngsters at any one time.

For the parents who need to take advantage of its services it provides a vital lifeline.

Jenny Landess, 24, of Linthorpe whose son Josh McMahon,has cerebral palsy, said she would be getting all her friends and family to collect tokens for the baby hospice which has done so much for her son.

“Zoe’s Place is absolutely excellent. They are lifesavers. It’s so good to get some respite. It costs £850,000 a year to run so every little helps.” Mike Farrell, 41, of Marton, whose daughter Megan has cerebral palsy, said: “Zoe’s Place is absolutely fantastic especially with Megan. She suffered another seizure a couple of weeks ago while she was at Zoe’s Place and the staff handled it perfectly.

“When you go into a place like this you realise how dedicated and professional the staff are - it’s a place that really deserves as much as we can give them. I would urge people to get behind Zoe’s Place, the more money it gets the better.”

This year the Wish campaign has £30,000 to give away - the more tokens the baby hospice collects the more money it will walk away with.

To support Zoe’s Place send your Wish tokens to: Zoe’s Place Baby Hospice, Crossbeck House, High Street, Normanby, Middlesbrough, TS6 9DA

ICT applications should consider handicapped users from the start,
Writer: Sasiwimon Boonruang

Nong Oay and Nong Note enjoy taking photos for visitors and editing them with the Photoshop program.

The Mattayom 1 student cannot articulate, but she is able to communicate with teachers and friends with a picture notebook and the Talking Switch speech assistive equipment, which helps her to partake in activities in the classroom.

Beside Nong Kob, at the United Nation building recently, was fellow wheelchair user Nong Oay, who has weak bones due to the inherited disorder of collagen synthesis, and Nong Note, who suffers muscle weakness.

All are students at Srisangwal School who today enjoy using not only the assistive technology, developed by the National Electronics and Computer Technology Centre (Nectec), but also computer programs such as Photoshop.

Visitors and delegates at the "ITU Asia-Pacific Regional Forum on mainstreaming ICT Accessibility for Persons with Disabilities" recently witnessed the students' capabilities in decorating and editing snaps.

"I didn't think I would look so good in the photo, thank you!" said one visitor, chuckling over a picture and inserting a 100-baht banknote into the donation box.

One woman who had Nong Kob take her photo and decorate it with a yellow butterfly was surprised when she received the photo and said even able-bodied adults could not produce such a high quality of work.

"How old are you?" she asked Nong Kob, who answered "11" on the computer screen.

These are technologies that help bridge the gap between people with disabilities (PWDs) and those without.

However, exposure to ICT for PWDs has been limited in some aspects.

Sawang Srisom, officer of Disabled Peoples' International Asia Pacific, noted that technology has progressively developed but there is still a conflict between demand and supply.

It will help, at least in the short term, if the government puts measures in place to enable PWDs to buy equipment at a lower price. In the long term, the state should have a policy for PWD employment.

In the workplace, he said, employers should install technology such as speech synthesis software for the visually impaired, or special mice designed for physically disabled people.

Sawang further encourages the introduction of closed caption or sign language options on television, adding that this would be useful not only to deaf people but also anyone trying to watch TV in a noisy environment.

Furthermore, Shadi Abou-Zahra, W3C web accessibility specialist, said graphical images on the internet are not suitable for sight-impaired people. They might be able to use screen readers for the text but the graphical information can not be output automatically. Video online will become more widely available, but captioning is rare.

If the website cannot be navigated by keyboard, PWDs may use a special mouse to do so. But the majority of websites have not been designed with the principles of accessibility and are therefore difficult for PWDs to use.

In order for the web to become truly accessible to all, it had to be coded properly, said Shadi.

The specialist noted that W3C has developed a technical standard for the web to adopt internationally recognised guidelines.

"The biggest challenge is not technology, but awareness-raising," he said, adding that people who develop websites typically don't consider the requirements of PWDs.

Training the developers, policy makers and decision makers is very important because they have to work together.

The issue of ICT accessibility for PWDs has significantly raised awareness.

Thailand recently hosted the first forum to be staged in the Pacific region.

In the knowledge-driven information age and society, it is timely to design and implement an inclusive ICT policy to provide digital opportunities to PWDs, according to Dr Eun-Ju Kim, head of the ITU Regional Office for Asia and the Pacific.

Citing the World Health Organisation, Kim said 10 percent of the world's population - or about 650 million people - have some form of disability, with the number increasing every year due to various factors such as war, natural disasters, unhealthy living conditions, and the absence of knowledge about disabilities and how to manage them.

In Thailand, there are around 1.9 million PWDs, or 2.9% of the population, many of whom encounter barriers when using ICT products and services.


Dr Eun-Ju Kim says the industry should have more R&D to come up with the right design products and services for disabled people.
ICT accessibility has been practiced to a very limited extent. Existing ICT products and services were not designed with principles of accessibility in mind and are therefore difficult for PWDs to use. The most obvious example is web accessibility.

"It costs dramatically less to implement web accessibility at the design stage than to retrofit it later," said Kim.

"Thus, it is worth emphasising the important roles of not only policy-makers and regulators but also industries, which can contribute not only to appropriate designs but also to affordable ICT products and services for PWD, taking into account the potential markets in the aged society."

The ITU Regional head urged that it is time to present PWDs with digital opportunities through ICT inclusive policy and regulations such as code of conducts in the information society so that assistive technologies, devices and applications specifically designed for PwD can be accessible and affordable to use.

She pointed out the ITU program of "Building the Capacity of Harnessing ICT for Disempowered/Marginalised Communities in Sri Lanka" from which representatives came to Thailand to exchange experiences.

They feel Thailand enjoys far more advanced technology in ICT applications and for PWDs and when they go back to Sri Lanka they can raise awareness of the issue to encourage more and better technology and applications available for their disabled people.

"I want to continue this kind of exchange program in the future as part of this project," said Kim.

"Next year, the program may be carried out with Mongolia and another countries."

Her Royal Highness Princess Maha Chakri Sirindhorn, who Kim said is a leader in the field, and who is also the one of ITU patrons, is supporting ICT in a wide range.

However, she said this is not the end, but just a beginning which still requires a lot of work to ensure equal access for all to ICT.

Kim is encouraging the industry to focus more on research and development to come up with right design products and services for PWDs to help them enjoy as full a life as possible.

Significantly, she said, many developed countries such as Japan and around Europe are seeing a rapid increase in population age, so their ICT industries are adapting to support the socio-economic needs of a growing and ageing demographic, including the different forms of disabilities that accompany the trend, such as the loss or reduction of dexterity and senses.

A decade from now, it is envisioned that these countries will have adapted so that their entire populations should be able to benefit from ICT, regardless of disabilities.

"I want to use this momentum to raise awareness for the industry, operators, and regulators," said Kim, adding that ITU will deliver appropriate training to various stakeholders, including policy makers, regulators and others interested in mainstreaming, developing and implementing ICT accessibility issues for PWDs at national, sub-regional and regional levels, and will continue implementing projects through close collaboration with various partners such as the ICT Ministry, Nectec and the National Telecommunications Commission, and others.

According to Axel Leblois, executive director, Global Initiative for Inclusive ICTs (G3ict), ICT has become a significant factor for economic and social development in all countries around the world. People's ability to use mainstream ICT applications and devices directly affects their ability to fully participate in education, employment, culture and leisure, civic or social activities.

Television, mobile phones, radios, computers, websites and multiple automated digital interfaces are used every day by billions of persons to communicate, access information in their jobs, at school, at home or to interact with government services or e-commerce.

The pervasive usage of ICTs in all aspects of society around the world thus creates a significant risk of exclusion if ICT is not accessible to PWDs.

For Thailand, the government which has ratified the UN CRPD (Convention on the Rights of People with Disabilities) is working on implementation by establishing learning centres nationwide that include assistive technologies such as braille printers and digital talking books for use by the visually impaired. There are also plans to use closed captioning for television programming to promote use by hearing-impaired users.

A man demonstrates moving from a bed onto the new electric wheelchair on Wednesday. (Mainichi)Researchers presented an electric wheelchair prototype on Wednesday that promises to offer greater mobility while lending the conveyances a little sporty style.

The new chair, designed by the Veda International Robot R&D Center in Munakata, Fukuoka Prefecture, features a backless design to make getting on and off the machine easier, and can be maneuvered in tight spaces.

Current wheelchair models, with their backs, armrests and large wheels, tend to be difficult to get in and out of from beds and other places around the home, leading to occasional falls. Furthermore, their low seats make it difficult for people sitting in them to reach things in high places.

The new design from Veda -- set up by a number of universities from across the globe including Waseda University and Kyushu University -- is more like a scooter than a traditional chair, with two larger driving wheels and two smaller wheels, and weighs in at around 100 kilograms. The seat can be raised or lowered at the press of a button, making it easy for a single person with the use of his or her upper body to get in or out unassisted.

"It was our task to make a wheelchair that was easy to get in and out of," says Shinichiro Takasugi, a lecturer at Kyushu University and a member of Kyushu University Hospital's rehabilitation department, which participated in the new chair's development. "This is the product of a ground-breaking concept."

New features, such as obstacle-avoidance and being able to summon the chair by calling it, may be added in the future.

The electric wheelchair will run for four hours on a single charge, and if it gains approval from government authorities, will be sharing the sidewalks with other electric wheelchairs. The developers are hoping to partner with private enterprise to mass produce the chairs a year from now, at a projected retail price of 500,000 yen each.

Genius locus
Apr 16th 2009
From The Economist print edition

There is strong evidence for a link between genius and autism. In the first of three articles about the brain this week, we ask how that link works, and whether “neurotypicals” can benefit from the knowledge

THAT genius is unusual goes without saying. But is it so unusual that it requires the brains of those that possess it to be unusual in others ways, too? A link between artistic genius on the one hand and schizophrenia and manic-depression on the other, is widely debated. However another link, between savant syndrome and autism, is well established. It is, for example, the subject of films such as “Rain Man”, illustrated above.

A study published this week by Patricia Howlin of King’s College, London, reinforces this point. It suggests that as many as 30% of autistic people have some sort of savant-like capability in areas such as calculation or music. Moreover, it is widely acknowledged that some of the symptoms associated with autism, including poor communication skills and an obsession with detail, are also exhibited by many creative types, particularly in the fields of science, engineering, music, drawing and painting. Indeed, there is now a cottage industry in re-interpreting the lives of geniuses in the context of suggestions that they might belong, or have belonged, on the “autistic spectrum”, as the range of syndromes that include autistic symptoms is now dubbed.

So what is the link? And can an understanding of it be used to release flashes of genius in those whose brains are, in the delightfully condescending term used by researchers in the area, “neurotypical”? Those were the questions addressed by papers (one of them Dr Howlin’s) published this week in the Philosophical Transactions of the Royal Society. The society, Britain’s premier scientific club and the oldest scientific body in the world, produces such transactions from time to time, to allow investigators in particular fields to chew over the state of the art. The latest edition is the outcome of a conference held jointly with the British Academy (a similar, though younger, organisation for the humanities and social sciences) last September.

A spectrum of belief
A standard diagnosis of autism requires three things to be present in an individual. Two of these three, impairments in social interaction and in communication with other people, are the results of autists lacking empathy or, in technical jargon, a “theory of mind”. In other words they cannot, as even fairly young neurotypicals can, put themselves in the position of another being and ask themselves what that other is thinking. The third criterion, however, is that a person has what are known as restrictive and repetitive behaviours and interests, or RRBI, in the jargon.

Until recently, the feeling among many researchers was that the first two features were crucial to someone becoming a savant. The idea was that mental resources which would have been used for interaction and communication could be redeployed to develop expertise in some arbitrary task. Now, though, that consensus is shifting. Several of the volume’s authors argue that it is the third feature, RRBI, that permits people to become savants.

Francesca Happé of King’s College, London, is one of them. As she observes, obsessional interests and repetitive behaviours would allow someone to practice, albeit inadvertently, whichever skill they were obsessed by. Malcolm Gladwell, in a book called “Outliers” which collated research done on outstanding people, suggested that anyone could become an expert in anything by practising for 10,000 hours. It would not be hard for an autistic individual to clock up that level of practice for the sort of skills, such as mathematical puzzles, that many neurotypicals would rapidly give up on.

Many, but not all. Dr Happé has drawn on a study of almost 13,000 individual twins to show that childhood talent in fields such as music and art is often associated with RRBIs, even in those who are not diagnosed as classically autistic. She speculates that the abilities of savants in areas that neurotypicals tend to find pointless or boring may result from an ability to see differences where a neurotypical would see only similarities. As she puts it, “the child with autism who would happily spend hours spinning coins, or watching drops of water fall from his fingers, might be considered a connoisseur, seeing minute differences between events that others regard as pure repetition.”

Simon Baron-Cohen, a doyen of the field who works at Cambridge University, draws similar conclusions. He suggests the secret of becoming a savant is “hyper-systematising and hyper-attention to detail”. But he adds sensory hypersensitivity to the list. His team have shown one example of this using what is known as the Freiburg visual acuity and contrast test, which asks people to identify the gap in a letter “c” presented in four different orientations. Those on the autistic spectrum do significantly better at this than do neurotypicals. That might help explain Dr Happé’s observations about coins and raindrops.

Insight, too, is given by autists themselves. Temple Grandin is a professor of animal science at Colorado State University. She also writes about her experience of being autistic. As she describes in the volume, one of the differences she perceives between her experience and that of most neurotypicals is that she thinks in images. She says her mind is like an internet search engine that searches for photographs. To form concepts, she sorts these pictures into categories. She does not, however, claim that all autistic people think like this. To the contrary, she describes two other sorts: pattern thinkers who excel at maths and music, and verbal specialists who are good at talking and writing, but lack visual skills. The latter might not qualify as autistic under a traditional diagnosis, but slip into the broader autistic spectrum.

The question of how the autistic brain differs physically from that of neurotypicals was addressed by Manuel Casanova of the University of Louisville, in Kentucky. Dr Casanova has spent many years dissecting both. His conclusion is that the main difference is in the structure of the small columns of nerve cells that are packed together to form the cerebral cortex. The cortical columns of those on the autistic spectrum are narrower than those of neurotypicals, and their cells are organised differently.

The upshot of these differences is that the columns in an autistic brain seem to be more connected than normal with their close neighbours, and less connected with their distant ones. Though it is an interpretative stretch, that pattern of connection might reduce a person’s ability to generalise (since disparate data are less easily integrated) and increase his ability to concentrate (by drawing together similar inputs).

Rain and sunshine
Given such anatomical differences, then, what hope is there for the neurotypical who would like to be a savant? Some, possibly. There are examples of people suddenly developing extraordinary skills in painting and music in adult life as a result of brain damage caused by accidents or strokes. That, perhaps, is too high a price to pay. But Allan Snyder of the University of Sydney has been able to induce what looks like a temporary version of this phenomenon using magnetism.

Dr Snyder argues that savant skills are latent in everyone, but that access to them is inhibited in non-savants by other neurological processes. He is able to remove this inhibition using a technique called repetitive transcranial magnetic stimulation.

Applying a magnetic field to part of the brain disrupts the electrical activity of the nerve cells for a few seconds. Applying such a field repeatedly can have effects that last for an hour or so. The technique has been approved for the treatment of depression, and is being tested against several other conditions, including Parkinson’s disease and migraines. Dr Snyder, however, has found that stimulating an area called the left anterior temporal lobe improves people’s ability to draw things like animals and faces from memory. It helps them, too, with other tasks savants do famously well—proofreading, for example, and estimating the number of objects in a large group, such as a pile of match sticks. It also reduces “false” memories (savants tend to remember things literally, rather than constructing a mnemonic narrative and remembering that).

There are, however, examples of people who seem very neurotypical indeed achieving savant-like skills through sheer diligence. Probably the most famous is that of London taxi drivers, who must master the Knowledge—ie, the location of 25,000 streets, and the quickest ways between them—to qualify for a licence.

The expert here is Eleanor Maguire of University College, London, who famously showed a few years ago that the shape of the hippocampus, a part of the brain involved in long-term learning, changes in London cabbies. Dr Maguire and her team have now turned their attention to how cabbies learn the Knowledge.

The prodigious geographical knowledge of the average cabbie is, indeed, savant-like. But Dr Maguire recently found that it comes at a cost. Cabbies, on average, are worse than random control subjects and—horror—also worse than bus drivers, at memory tests such as word-pairing. Surprisingly, that is also true of their general spatial memory. Nothing comes for nothing, it seems, and genius has its price.

Savant syndrome, then, is a case where the politically correct euphemism “differently abled” has real meaning. The conclusion that should be drawn, perhaps, is not that neurotypicals should attempt to ape savants, but that savants—even those who are not geniuses—should be welcomed for what they are, and found a more honoured place in society.

A report on wheelchair services is due to be completed within weeks
Ministers have been urged to ensure that no-one in Wales has to wait longer than a year for a wheelchair.

Conservatives criticised "unacceptable delays" in providing wheelchairs for children, while Liberal Democrats urged a "minimum standard" for adults.

Health Minister Edwina Hart said she was concerned by the length of time some patients were waiting.

She said a review currently underway might recommend standards for the service across Wales.

Conservative social justice spokesman Mark Isherwood said that "unacceptable delays are leaving disabled and vulnerable people in pain and without the equipment they need to improve their quality of life".

"The health minister herself is on record as saying 'equality of access to all services is key' - we share that sentiment," he said.

"We share the concerns of Disabled Children Matter about the impact of these delays on the well-being of disabled children in Wales.

"Equality means disabled children having the same opportunities as non-disabled children in their daily lives," Mr Isherwood added.

Lib Dems called for a "minimum standard" for adult wheelchair provision, ensuring that no-one would have to wait longer than a year for a wheelchair.

'No recognised standards'

In a statement Ms Hart said: "I am concerned about the length of time some patients are waiting for their assessments and receiving their wheelchairs.

"The provision of wheelchair services falls primarily to the Artificial Limb and Appliance Service (ALAS), which is not an all-Wales service but is based around two centres in Cardiff and Wrexham.

"There are no recognised standards for wheelchair services for adults in Wales, however a review into the provision of wheelchairs and specialist seating is currently under way in Wales, where a possible recommendation may be the establishment of standards for the service across Wales.

"Senior Welsh Assembly Government officials are working with health professionals and other key stakeholders and service users to review the current provision, identify any gaps and consider how it can be improved."

Ms Hart said she would be receiving the report from the review this month.

Last March, long waits for specialist wheelchairs were criticised as "disgusting" by patients and parents in north Wales.

A total of 53 adults and children were waiting for an assessment to allow them to receive wheelchairs.

One child had been waiting for 20 months and the North Wales NHS Trust said it had cut times and was aiming to ensure no child waited more than a year.

Mrs Pedler said she wanted to raise awareness of disabled access
An 84-year-old woman in a mobility scooter has taken up temporary residence on Trafalgar Square's Fourth Plinth to help promote disabled access.

Gwynneth Pedler, from Cumnor, in Oxfordshire, was the oldest volunteer to be chosen for Anthony Gormley's 100-day-long living art project in London.

She began her one-hour stint at 0300 BST and waved semaphore flags telling people to live their lives to the full.

She is now planning to go paragliding for her 85th birthday on 23 July, 2010.

Mrs Pedler said Monday's experience was "absolutely brilliant," in spite of the rain.

'Semaphore training'

She said her flags got very wet and "kept flopping in my face" but she stayed focused on getting across the positive message that she wanted to, from 25ft (7.62m) high up on the plinth.

Mrs Pedler is a former Oxfordshire school teacher and said she learnt semaphore as a girl when she was a sea ranger.

As a result of her plinth exhibit she said: "The cause of disability and access will be in some people's minds who haven't had it in their minds before."

Shortly after being lowered down, she announced her intention to spend her 85th birthday paragliding.

"I've been up the rigging in a tall ship in my chair, I've been up the plinth in my scooter, next year I am going to go paragliding in some form of transport," she said.

PITTSBURGH, Aug. 10 /PRNewswire/ -- DynaVox Mayer-Johnson, the world's leading provider of communication and education solutions for individuals with speech, language and learning disabilities, today announced the DynaVox Xpress. The Xpress sets a new standard for hand-held speech solutions by bringing together comprehensive augmentative and alternative communication (AAC) tools with a variety of mainstream communication features.
An innovative, sleek and extremely portable device, the Xpress delivers powerful communication capabilities for individuals living with stroke, autism, Down syndrome, traumatic brain injury, aphasia, ALS, and apraxia of speech.
This integration allows for robust communication in virtually any situation, and:
Enables mobility and creates confidence. The Xpress is so small it can be held in one hand or two, and can easily be carried in a pocket or purse. With its discreet design, the Xpress allows augmented communicators to blend in with the crowd and still speak their minds. Touch screen technology never before available in a speech device creates a compelling visual experience, and allows touching or "sweeping" to access more content quickly with fingers or thumbs.
Takes AAC technology to new heights. With multiple connectivity options such as Wi-Fi for internet and email access, Bluetooth, and infrared remote control, the Xpress offers unparalleled opportunities for communication. Multimedia tools such as MP3 and video players allow Xpress users to share their personalities in new ways.
Stands up to the demands of daily life. The Xpress is made of rugged magnesium and uses Flash memory to withstand the stresses of life. Swappable batteries, or an extended battery, ensure that Xpress users have the power they need to keep the conversation going all day.
Makes every voice - and every emotion - heard. Twin front-firing speakers allow Xpress users to be heard in virtually any environment. The new voices included with the Xpress are natural-sounding and take communication to the next level by adding emotion - laughter, crying, shouting and whispers.
Preserves familiar content. Existing DynaVox customers and their care teams will recognize the powerful InterAACT language framework designed to meet the communication needs of individuals regardless of age or ability level. Thousands of pre-programmed pages minimize the need for programming.
Includes comprehensive DynaVox Mayer-Johnson support. Xpress users and their care teams will have access to the full-range of DynaVox Mayer-Johnson's pre- and post-purchase support services including funding assistance, sales support, and technical support. The Xpress also gives the user one-touch access to technical support, where DynaVox personnel can remotely access the device and assist the user.
"Our clients told us they wanted a highly portable solution without sacrificing communication functionality," said Ed Donnelly, CEO of DynaVox Mayer-Johnson. "The Xpress accomplishes this objective, and delivers a quantum technological step forward, in a device that looks and feels like mainstream technology. We are excited to be introducing the most transformative speech device ever to the AAC community."
The Xpress will begin shipping to customers in late August 2009. Funding is available through Medicare, Medicaid and private health insurance providers.
About DynaVox Mayer-Johnson
DynaVox Mayer-Johnson develops a range of speech communication and education solutions designed to help children and adults challenged by significant speech, language and learning disabilities make meaningful connections and participate in the home, classroom and the community. The company's DynaVox line of speech communication devices gives a voice to the millions of people who are unable to use speech as their primary means of communication due to the effects of conditions such as amyotrophic lateral sclerosis (ALS or Lou Gehrig's Disease), stroke, traumatic brain injury, cerebral palsy, Parkinson's Disease, autism and mental retardation. The Mayer-Johnson line of print-based and on-screen education products engage students in the learning process and support academic achievement. Driven by a strong entrepreneurial culture, the company develops technology-based products and offers an extensive customer support program to assist individuals as well as their families and support professionals. For more information about DynaVox Mayer-Johnson, visit www.dynavoxtech.com.

SOURCE DynaVox Mayer-Johnson

By 2020, occupational, physical, psychological and behavioral rehabilitation will be carried out by robots in our own homes, according to Professor Grigore Burdea speaking at the Virtual Rehabilitation 2009 International Conference in Israel this month.

And they won't just stop there, Burdea told delegates from Israel and around the world. The robots will also do the cooking, cleaning, dressing and other household chores.

"The future is in low-cost, patient-based devices that will enable the patient to receive continuously tailored therapy from home," he said.

Burdea, a pioneer in the field of virtual rehabilitation and director of the Rutgers Tele-Rehabilitation Institute in New Jersey in the US, was one of many speakers at the conference hosted by the University of Haifa.

Multiple therapies, one robot

He predicts that in the near future we will see various aspects of therapy coming together. Instead of a slew of therapists treating each patient, there will one therapist regulating the inclusive virtual application of therapies tailored to each specific patient.

He explains that the technologies that will enable this scenario are likely to come in the form of robotics - a robot that can do everything in the home of a patient, from cooking and cleaning, to providing therapy specifically suited to the patient's individual and changing rehabilitation needs.

"A patient might often feel more at ease talking to a robot, and in the comfort of the home and not in a hospital or clinic," said Burdea.

"Cloud rehabilitation," a term coined by Burdea, will also play a major role in future interactive virtual rehabilitation enhancement.

We'll still need human therapists

Use of cloud computing technology will facilitate real-time data processing, as it enables us to record on remote servers the rehabilitation processes taking place in a patient's home.

That makes the information accessible to remote therapists who can then provide analysis and feedback. He emphasizes, however, that technology is meant to augment, not to replace, therapists.

The future technology will avoid the risks inherent in the use of today's virtual reality games for rehabilitation, Burdea explains. The Wii and Xbox, for example, have already been adopted by therapists but are not suitable for unassisted patient use because they may cause elevated blood pressure or loss of balance.

However, the game-based concept will certainly remain, because it provides motivation and makes it fun to achieve goals.

Elizabeth Diffin/Medill
They look like submarines or spaceships. But have you ever wondered what it's like INSIDE a hyperbaric chamber for oxygen therapy? The Midwest Hyperbaric Institute in Bolingbrook offers a peek inside a device used to help treat wounds, neurological disorders, cerebral palsy and, increasingly, autism.



by Elizabeth Diffin

It could be any after-school program or day-care center, with a set of twins playing tug-of-war with a pillow and a serious-looking boy watching a television program. But what makes this room different from the typical cookies-and-juice session is the fact that these children are encased in large acrylic tubes where they’re breathing pressurized, oxygenated air.
These children have been diagnosed as being on the autistic spectrum, and they’re receiving a controversial treatment – hyperbaric oxygen therapy – in the hope that it will improve their autistic symptoms and behaviors.
A study published in March found that hyperbaric oxygen therapy, in which air is pressurized to simulate deep-sea levels, may be a viable treatment for autism. The research showed improvements in autistic children who had the therapy, particularly in their overall "autistic functioning," such as receptive language, social interaction and eye contact.
Dr. Dan Rossignol, a family practitioner in Melbourne, Fla., who authored the study, has two autistic children of his own. In 2006, after "buzz" began to build about hyperbaric oxygen therapy in kids with autism, he and his wife decided to try it for their younger son, who had only been speaking single words. After about 20 hyperbaric treatments, the boy began to put together three to four word sentences, piquing his father’s interest in the topic.
However, when Rossignol, who has a hyperbaric chamber in his clinic, began to look into research on hyperbaric oxygen therapy for autism, he said he was surprised to see there weren’t any double-blind controll studies on the topic. So he decided to do his own and published the results in BMC Pediatrics, an open-access online journal.
Doctors at Midwest Hyperbaric Institute in the southwest suburb of Bolingbrook, have been using hyperbaric oxygen therapy with autistic children for the past five years. In addition to the traditional uses of hyperbaric oxygen therapy – such as wound healing and decompression sickness – the facility has pioneered treatment for neurological conditions like cerebral palsy, stroke, multiple sclerosis and autism.
The facility traditionally has five or six children undergoing treatments during the same time period. The children have 40 sessions, called "dives," at 1.3 to 1.5 atmospheres, take a break for four to six weeks, and then return for 40 more dives. By the end of the 80 one-hour sessions, parents, doctors – and even independent therapists – say they notice some sort of improvement in the autistic kids.
In fact, Dr. August Martinucci, the medical director of Midwest Hyperbaric Institute, said that in the years he’s been treating autistic children with hyperbaric oxygen therapy, it’s always proven effective.
"I’ve never seen one [child] with no improvement whatsoever," Martinucci said. "It might have been minor, but there have been changes."
He does caution, however, that hyperbaric oxygen therapy is not the autism cure-all and that it works best in conjunction with the other more traditional therapies.
According to Martinucci, there’s not a single "silver bullet" that will be a cure. "It’s a spectrum disease," he said. "You have to have a spectrum of treatments."
Parents admit that they’re willing to try almost anything to help their autistic child improve.
Brian McNally, whose 6-year-old son, Sean, was diagnosed with autism about four years ago, said the boy is on a variety of medications and supplements, goes to physical and occupational therapy, and adheres to a strict diet.
"We’re throwing the kitchen sink in to see what sticks," McNally said.
But he said that in the 28 sessions Sean has undergone, he’s already exhibited signs of improvement. Sean makes eye contact more often and obeys directions. He just learned to ride a bike. And next school year, he will be part of a partially-integrated first grade class, participating in classes such as art, music and lunch with the so-called "normal" children.
"They’re tiny gains," McNally said. "But all the tiny gains add up."
Skeptics say that these supposed gains may simply be a case of the placebo effect, with parents seeing an improvement only because they’re looking for one. In traditional drug studies, the placebo effect is observed when the participants taking a "sugar pill" report medical improvement.
In Rossignol’s study, a striking 73 percent of parents with children in the control group rated their child as improved, without knowing they hadn’t been given true hyperbaric oxygen therapy.
"The placebo effect is very powerful," said Dr. Alan Rosenblatt, a Chicago neurodevelopmental pediatric specialist. "I think when there is no cure, anything is a cure."
Rosenblatt said his skepticism is rooted in his own understanding of neurophysiology, as well as the success he has seen as a result of behavioral interventions in very young children. He said the research community might be better served by focusing on the more proven therapies, and their theoretical foundations, when it comes to treating autism.
"You have to have a healthy dose of skepticism even for a proven therapy," Rosenblatt, who is on faculty at Feinberg School of Medicine, said. "More understanding of the underlying mechanisms of the disease will lead to the most meaningful interventions and treatments."
In fact, no one knows for sure why hyperbaric oxygen therapy might cause the improvement so many parents and therapists have noticed. But Martinucci speculated that the increased blood flow from the hyperbaric oxygen therapy acts as an anti-inflammatory agent that soothes the swelling many autistic children suffer from in their brain and gastrointestinal tract.
Patients being treated for a variety of conditions also mention the increased "clarity of thought" brought on by the hyperbaric oxygen therapy. Jennifer, who asked that her last name not be used, is the mother of 3-year-old autistic twins being treated at Midwest Hyperbaric Institute.
"Both of my kids seemed less foggy," she said. "They were looking at me and getting it. They seemed more ‘plugged in.’"
And the energetic boys running down the hallway to "blast off" in the spaceship-shaped hyperbaric oxygen therapy chamber certainly seem a far cry from the withdrawn children their mother described.
"They love it here," she said, noting their roughhousing in the hyperbaric chamber.
Indeed, many autistic patients seem to do particularly well when it comes to hyperbaric oxygen therapy, Martinucci said. Children who benefit from deep pressure find the treatment soothing and some of them have mentioned that their heads "feel good" after the treatment.
"We have more problems with the parents than with the kids," Martinucci said. "The kids are happy to go in there."
Of course, there are bigger problems than overprotective parents when it comes to the application of hyperbaric oxygen therapy to autism. Rosenblatt doesn’t think that Rossignol’s study is conclusive enough for him to recommend to patients.
"I can’t say it’s a proven therapy for autism," Rosenblatt said. "But I do think we ought to take this study seriously and challenge people to replicate it."
Rosenblatt said that he’s happy the researchers attempted to do a double-blind study, something that is notoriously difficult with a spectrum disorder. But he said that if the research is able to be replicated – preferably by a more authoritative academic center – it’s more likely to be embraced by the mainstream medical community. But until that point, he said he would recommend parents to focus on the proven interventions, such as behavioral and speech therapies.
"My advice would be to put neurodevelopmental therapies at the center of your total therapeutic package," Rosenblatt said.
And if patients are insistent on trying other treatments, Rosenblatt said to explore them one at a time to determine their true impact.
"Many parents won’t feel comfortable until they’ve tried every possible intervention to help their child," Rosenblatt said. "My heart goes out to these parents. I don’t envy them their choices and decisions."
Many of those same parents are hopeful that increased study of hyperbaric oxygen therapy in autistic kids will have a different sort of benefit: the financial kind. Hyperbaric oxygen therapy treatments are expensive – a set of sessions can cost several thousand dollars – and many insurance companies aren’t willing to cover them because they’re considered "off-label."
Tina O’Sullivan, whose 17-month-old son, Sean, is being treated for a brain injury – not autism – at Midwest Hyperbaric Institute, said the insurance payments are a constant battle.
"Insurance covers certain things," she said. "But these treatments are essentially his first year of college."
Rossignol said he hopes that if his study is able to be reproduced, it might open the door to additional approved treatment options for autism. And he believes that in the long-run, those treatments will have a larger benefit.
"If we can come up with treatments that lead to improvements, the savings to society could be huge," Rossignol said. "If these studies continue to come out, it might become a standard treatment."
But in the meantime, he hopes that for the people who can afford to pay for hyperbaric oxygen therapy, his study provides some reassurance.
"If parents want to do this and have the money, it certainly seems to be safe," Rossignol said. "Parents can know it’s not going to be harmful."
In fact, he said that the main finding of the study was that the hyperbaric oxygen therapy was well-tolerated by most children. And he was quick to point out that although they did observe some gains, there were some kids who didn’t necessarily improve, which was expected.
"Within a study, there’s always going to be some who improve and some who don’t," he said. "We take a reasonable approach: This is a promising treatment."




Elizabeth Diffin/Medill
Sean McNally, a 6-year-old with autism, is more than a quarter of the way through his hyperbaric oxygen therapy. His parents and teachers have noticed positive results.












Research looks at hyperbaric treatment and autism
The hyperbaric oxygen treatment study for autism, published in the March issue of BMC Pediatrics, was a double-blind, controlled trial.
Dr. Dan Rossignol and his colleagues studied 62 children between the ages of two and seven who received 40 treatments over the course of four weeks. The treatment group had hyperbaric oxygen therapy with air pressurized to a standard 1.3 atmospheres (the rough equivalent of deep-sea diving to 10 feet), while the control group breathed only slightly pressurized air to mimic the other treatment.
The children, their parents and the evaluating physicians did not know which group the children were in. The hyperbaric technicians, who had no input into the treatment, were the only ones aware of each child’s status and were instructed to keep it secret.
At the beginning and end of the study, the parents and physicians filled out standardized scales rating the child’s functioning in several different areas. The evaluations were then compared to determine whether the child had improved as a result of the therapy. Children in the treatment group scored significantly better on the Clinical Global Impression scale, with the greatest improvements found in overall functioning, receptive language, social interaction and eye contact.
Analysis done after the study’s completion revealed that higher-functioning autistic children, who initially scored in the top 50 percent of the scales, showed the fastest improvement. Children over the age of five also showed greater advances than their younger counterparts.
Rossignol was quick to point out that those results need to be studied further to determine if they are a "true finding."
"We don’t know for sure why [the therapy] worked," he said. "But the nice thing about this study is that a condition that’s felt by most people to be untreatable is showing potential improvement. We’re not saying this is an answer or a cure. But it might be good in some children. It’s promising."

Theatre Group
Come along to a Theatre group for adults with disabilities on a Tuesday from 4.30 till 6pm at Rievaulx resource centre Rievaulx Avenue, Billingham. Cost-£1.50
For more information please call 07728382442 or email amy.Stubbs@stockton.gov.uk

Childcare Consultation

Stockton-on-Tees Borough Council has a duty to ensure there is sufficient good quality childcare across the Borough to meet the needs of parents and carers, and their children, and which supports the wider social and economic development of the town.
To meet this duty The Children and Young People’s Strategy Team are carrying out consultation with parents/carers of children with disabilities and/or special needs to determine if there are any gaps in childcare provision and to identify any barriers to take-up of formal childcare.
Questionnaires have been handed out to parents for completion at various events/venues over the last couple of months. Once all questionnaires have been received the findings will be analysed and the results fed back to parents via various channels.

I would like to thank all those parents/carers who have already completed and returned questionnaires.

Childcare Business Support Manager
Phone: 01642 527208

Independent Living

The Council’s Independent Living team have updated their website to include details of different services and groups available as well as a News and Events page. To access this choose I for Independent Living from the A-Z of services. Or for more information contact the Independent Living team on 01642 527056 or email: Independent.Living@stockton.gov.uk

As you may of read a number of posts ago I had become a memeber of the Disability Advisory Group for Stockton on Tees. I am now able to share with you our latest newsletter. I will post it over a number of entries as it is quite long:

Welcome to the latest edition of the Disability Advisory Group newsletter

Access to Cycle Ways

a brief update was provided on access to cycle ways and the use of tactile paving. Towards the end of summer 2009 a survey of all routes will be completed and over the autumn/winter areas for improvement will be identified. Members of the group were positive about the use of tactile paving to guide them along existing routes.

Cleveland Fire Brigade

Disability Advocates for Cleveland Fire Brigade came along to meet members of the group, they explained to the group about home fire safety visits, where a home visit takes place to develop a plan with each person on how to safely get out of your home in an emergency, free smoke alarms will also be fitted if necessary-call 01429 874063 to arrange a visit.

People who are Deaf or have a hearing impairment can get access to vibrating smoke alarms.

Everyone should check the batteries on their smoke detectors, when the Fire Brigade fit alarms they trigger a re-visit in five years time to check the equipment provided. A member of the group expressed their gratitude for the work that the Fire Brigade has done, in particular to the Winter Warmth scheme which they said saved their life during the particularly cold period at the beginning of this year

For more information or advice please contact the advocate’s team using the details below:

Phone 01429 872311
Minicom 01429 874053
Post Cleveland Fire Brigade Headquarters, Endeavour House Stockton Road, Hartlepool, TS25 1JE

Stockton User Representative Group for Employment (SURGE)-Mental Health Issues

A representative came to talk to the group to challenge the myths and misconceptions that surround mental health issues. Some of the facts include that every year 1 in 6 people are affected by a mental health problem at any one time and the Mental Health Foundation estimates that 70 per cent of recorded suicides are by people experiencing depression, often undiagnosed.

SURGE is an independent user group that aims to raise awareness about mental health issues in the area, promote social inclusion and positively influence how mental health services are delivered within Stockton.

If you are interested in joining SURGE or would like more information, please contact us. Telephone: SURGE Office on (01642) 647744 or the Involvement Worker on (01642) 352914 Post: SURGE, Norton Community Resource Centre, Somerset Road, Norton, Stockton-on-Tees. TS20 2ND

The Mind Maze Volunteering Project

Christine Coulman and Paul Christon came along with representatives from the Mind Maze Volunteering Project to let people know of the opportunities available to volunteer as a mentor or get support as a mentee. It was an inspiring session with people sharing what a tremendous impact their involvement in the project has had, with positive and motivating stories.

Working across the Borough of Stockton and Middlesbrough the project supports people with mental health problems and their carers to enable them to make progress in their lives and achieve independence. We do this through the provision of one to one support and structured group activities.

For more information please use the details below:
Phone: 01642 633525
Email: christine.coulman@middlesbroughmind.org.uk
Address: Stockton Business Centre, 70 Brunswick Street, Stockton-on-Tees

A TEENAGE disabled girl has finally been able to tell her mum she loves her after being given a voice.

It’s changed her life massively, people won’t realise how much - mum Joanne, above with Jodie, 16, on the machine enabling her daughter to speak for the first time

Jodie Griffiths, 16, suffers from cerebral palsy and has always struggled to express herself.

But now, thanks to a £10,000 communications aid, she can finally tell the world how she feels - and release her wicked sense of humour.

Jodie, who lives in Grasmere Road, Redcar, with her mum, has wasted no time in making the most of the machine. Mum Joanne, 42, said: “One of the first things she said was ‘Mum, I love you.’ It was wonderful. I knew every part of her, just by the way she looked, I’d know how she was feeling. But now she can really communicate. It’s emotional because I didn’t think she would ever be able to say anything like that.”

The communications console, which mum Joanne boasts is better than the one theoretical physicist Stephen Hawking uses, has opened up the world to Jodie.

“It’s changed her life massively, people won’t realise how much,” she said. Simply by using her head to press a switch, she can select a word or phrase, play music or games, watch video, access the internet, and even operate the TV.

Joanne said: “She’s very outgoing, very sociable and has a wicked sense of humour.”
And it’s this cheeky sense of humour that has not only enamoured people to her but on the odd occasion landed her in trouble.

Jodie, who attends Kirkleatham Hall School, said: “I have already been in trouble at school because I kept putting my music on. My friends thought it was funny but my teachers did not.”

Prompted by mum, Jodie also admits that she told a man working at B&Q: “You’re looking very sexy today.”

The money to buy the console came via two different sources.

A panel of young people from the borough awarded Jodie with £7,000 from Redcar and Cleveland Council’s Youth Opportunity Fund.

Joanne said: “They usually don’t give out personalised grants of that amount of money but when the children on the panel heard about Jodie their reaction was, well, if we’ve got a voice then Jodie should have a voice too.”

A fundraising night at Redcar's West Two raised £2,600. Joanne said: “At the beginning, we knew we’d have to raise the money ourselves, then when we got the grant, I just couldn’t believe it.”


Jodie, a Middlesbrough FC season ticket holder, said: “Thanks to the kids on the panel my life has changed so much in such a short time. I can now tell people how I feel and what I want. In fact it’s hard to shut me up.”

We are so excited to share with you the Living with Cerebral Palsy Toolbar. It will serve as a new way to generate revenue along with the Living with Cerebral Palsy Mall. With this Toolbar we will raise much needed funds without you writing a check or selling a product!

This Toolbar will not replace your existing toolbar. The features on the Toolbar are all designed to help us raise funds in a non-intrusive way. THERE IS NO COST TO YOU. There are no pop-ups, adware, spyware or tracking and we also respect the user’s privacy. It is easy to download to Internet Explorer or Firefox…just click the banner below.

By using the Yahoo search engine that is conveniently located on our toolbar, you are helping us raise dollars for our Organisation! You will acquire the same information you receive using your current search engine. Every time you click on a sponsored link (anything listed in the shaded area with bullet points or anything listed on the right side of the page) you are raising 10 cents per click for our Organisation! NO PURCHASE NECESSARY.

Performing 2-5 searches a day on something you are interested in and clicking on sponsored links, because those links help you with the information you are looking for, will help us reach our goals faster! This should only take 5 minutes. It’s that EASY! What are you waiting for? Click on the banner above to download our Toolbar and start helping us raise money. If you have any questions or special support needs do not hesitate to contact OurGV Rewards at support@ourgvrewards.com

With a direct link on the toolbar, you now have even easier access to the Living with Cerebral Palsy Mall to Shop and Fundraise! We invite you to visit the Mall for your everyday needs as well as for special occasions. Remember that every time you shop at over 1000 stores in your Mall (to make purchases you are going to make anyway) you are generating funds for our organisation!

We are proud to have you as a Supporter! We hope you are equally proud to have our toolbar on your computer. We encourage you to share this toolbar with your friends and family so they can help our organisation fund its needs

Widgit Software and the Sensory Trust have just launched a new survey to find out how people access the outdoors.

The survey is available in symbols and text.

You can also enter our free prize draw to win tickets to the Eden Project.
*Enter the Survey*http://www.symspace.com/connect
*Project information* http://www.symspace.com/connect/project_information.htm

'You can't bar me for being disabled'

By SUE GYFORD
WHEN Mark Cooper arrived in the pub, he thought he was all set for a good night out.

He had no trouble getting through the door in his wheelchair, and settled down for a couple of pints with friends. It was only later he had a problem.

He explained: "I went up to the bar and said 'Where's your disabled toilet?' and they said 'We don't have one'. "I thought 'What am I supposed to do now?'"

The customer toilets were down a steep flight of stairs, so he had to leave 56 North in West Crosscauseway with friends, and go 200 yards down the road to another bar, The Native State, which he knew had an accessible toilet.

The 24-year-old was inspired to launch a campaign to improve the lot of disabled pub-goers in Edinburgh. He has the support of MSP George Foulkes and Councillor Angela Blacklock, who has tabled a motion for today's meeting of the full council calling on the city to publish a list of pubs detailing their accessibility.

Mr Cooper, who has cerebral palsy, will make a deputation to the meeting and would like to see it be a condition of receiving a licence that pubs be made completely accessible to all, with the exception of a few older buildings where it is impossible.

The Disability Discrimination Act 2005 rules that pubs cannot discriminate against disabled people, but critics say it is too easy for them to opt out as long as they can provide a reasonable excuse.

Cllr Blacklock said: "This isn't a huge ask of the council. We have licensing standards officers in place who could carry out the work. It is the very least we can do for wheelchair users."

Mr Cooper added: "When I run into problems I feel angry because it's disrupted my evening. My friends just see me as normal, so why can't I just go out for a pint instead of having to think that I can't go to bar 'X' because I can't make full use of it?

"I'm quite an independent guy, so I don't like having to ask anybody if they can help me to go to the toilet.

"I'm hoping to get out of this a kind of good pub guide so that people can say I'd like to go out on Friday to a particular pub and have a look in the book and see if it's got disabled access. Disabled people have the right to have as much fun as anybody else."

Mr Cooper, who lives in Gracemount, has launched a petition on Facebook under the campaign title, Barred!, whose membership is more than 200 and rising fast.

James Sutherland, director of 56 North, said he sympathised with Mr Cooper's situation, but the building was leased and predated the introduction of regulations.

He added: "We take access very seriously but we're constrained by the building. There's not really any scope."