TORONTO - Eric Wan sways his head from side to side and the sound of tinkling ivories radiates throughout the room.

The pace of the melody accelerates in tandem with the rhythm of his movements, as colourful shapes twirl in sync on a monitor.

With each bob of the head, the computer engineering graduate is crafting his own little music composition through a specialized software program he played a role in helping to develop.

The Virtual Music Instrument is among several projects he’s been involved with aimed at helping children living with disabilities. The work is being done at Holland Bloorview Kids Rehabilitation Hospital, the largest facility of its kind in Canada.

“There’s a lot of kids that are not able to play music just because they’re not able to hold the musical instrument,” said the 32-year-old Wan. “I think that there’s a lot of children who would like to play music through some kind of way, so this is one of the reasons that I’m interested in this project.”

Unlike many of his peers, he has a true understanding of the importance and need for such technologies to assist youngsters with disabilities.

At age 18, Wan was diagnosed with transverse myelitis — a condition resulting from inflammation of the spinal cord — four days after getting a measles vaccination.

“The doctors actually didn’t know what the prognosis would be,” Wan recalled in an interview at his workstation. “The best case would be that I would be able to walk within months, but it didn’t happen.”

Wan was paralyzed from the shoulders down, forever transforming the life of young man who grew up with a love of computers and playing classical music on his violin.

Wan was initially unable to breathe at all, dependent on life support 24 hours a day. Months afterwards, he was able to breathe on his own, but said otherwise there wasn’t much improvement. After about two years, he was breathing on his own during the day, but he still needs to be connected to a ventilator at night.

Wan admits that early on, there was a period when he was very depressed. But he credits school for keeping him busy and helping him navigate through some of his toughest times.

In the midst of his studies at the University of Toronto, he met Tom Chau, senior scientist with Bloorview Research Institute located on-site at Holland Bloorview. The pair was connected through a respiratory therapist Wan had worked with while in long-term rehab.

After learning about Chau’s research, Wan said he started volunteering at the hospital in the summer of 2005, and returned the following year in the fall as an intern. He has been part of the team ever since.

Wan was brought on board as an undergrad to work with the Paediatric Rehabilitation Intelligent Systems Multidisciplinary lab, or PRISM for short, which focuses its efforts on children and youth with disabilities and special needs, and their families, by drawing on applied science and engineering.

“It was really interesting applying my skills in making software or electronic gadgets that enabled people to be able to do more, and so to improve their quality of life,” said Wan, who had a long-held interest in computer programing, learning the basic type of programming languages at age eight.

Wan operates his wheelchair using a sip and puff straw system to control the direction, while a tiny, reflective sticker affixed to the bridge of his glasses helps him to use the computer.

A camera at the top of the screen detects the motion of his head using the sticker, which reflects light back into the camera, allowing him to move the mouse cursor and operate an on-screen keyboard using his head.

In addition to helping to advance programming on the Virtual Music Instrument, Chau said Wan has brought “tremendous software expertise” and “ingenuity” to the lab, in particular the iPod localization project. The iPod-based system allows an individual who requires use of a ventilator to wander throughout the hospital independently.

Wan also contributed to a device called the Aspirometer for detecting swallowing safety, Chau said.

“I think Eric is absolutely phenomenal as a person and as an inspiration for the lab, and this is aside from all the technical capabilities that he also brings,” said Chau, Canada Research Chair in Pediatric Rehabilitation Engineering.

“As a person, he’s very patient, he has a very congenial personality, very easy to get along with. The other team members, they always go to Eric as a resource in terms of software issues, computer issues, computer engineering issues, and technically Eric brings a wealth of skills to the table. He is a phenomenal software developer.”

Wan is heading back to the books this fall for graduate school, as he pursues a two-year master’s degree at U of T.

He seems keen to continue on his current path, expressing interest in developing software to help children with disabilities gain more control of their environments.

“In particular, there are many children with high level of disability who are not able to communicate with people and they’re not able to do anything to enjoy their environment, for example, turn on a TV or pick up a telephone,” he said. “This is something that I hope that the children will be able to do so that it will improve their quality of life.”

Source: The Canadian Press

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Online:

Holland Bloorview Kids Rehabilitation Hospital: www.hollandbloorview.ca

PRISM lab:www.prismlab.org

Daniel Dale
Staff Reporter

Lucas Braun was doing worse than he should have been doing in last-period math. His educational assistant knew why. He was playing hockey during both of his recesses. By the end of the day, he was exhausted.

“She goes, ‘If we take one of those hockeys away, he’ll probably learn more,’” says Lucas’ mother, Debbie. “And I said, ‘You know, his legs are only going to work for a short period of his life. And if they’re working now, and he wants to play hockey, I’d rather he play hockey and do poorly in math.’ She was like, ‘You serious?’ I’m like, ‘Yeah. If they’re only going to have their legs until they’re 25 or so, and right now that’s what he loves to do. . .”

Lucas Braun is 13. He is articulate and analytical and serious and a serious sports fan who stored the date of the Maple Leafs’ season opener in his iPod just to make completely totally absolutely sure he doesn’t forget it’s Oct. 7, though he won’t.

Zane Braun is 11. He is a born entertainer whose repertoire of hyperactive comedy includes quick-witted jabs, exaggerated what-who-me smiles, and memorized dialogue from The Suite Life of Zack & Cody. He has also perfected a darker bit: a biting impression of the people who stare at him and Lucas while badly pretending to not be staring.

Both Braun brothers have Morquio Syndrome. When you have Morquio Syndrome, you are a spectacle — to everyone from passers-by on Toronto streets to junior kindergarten students who mistake you for a peer.

The rare disease will likely force Lucas and Zane to use wheelchairs by their mid-20s. It will probably shorten their lives substantially. And it has prevented them from growing taller than about three feet each.

“People tend to stare at us a lot, because we’re so short,” said Lucas, sitting at his family’s kitchen table in Whitechurch, a tiny community northwest of Kitchener near Lake Huron. “At camp, we don’t get stared at. Because everybody has a physical disability. We get to feel — the same. When we’re not there, we don’t feel the same. Before we went to camp, I actually thought that me and Zane were the only ones in the world with physical disabilities.”

“When you go it’s like, wow,” says Zane. “So many people have them.”

They are used to much of what passes for regular in lives filled with unusual difficulties. They see nine medical specialists; the three-hour drives to appointments at Sick Kids are now routine to them. Every two years, they have a surgery in which their legs are broken to straighten them; a good thing, Lucas says nonchalantly, since it prevents them from getting knock-kneed. They tire much more quickly than most children, so they use scooters to get around school; when their mom isn’t looking, they have forbidden scooter races.

But it is only at Easter Seals’ Camp Woodeden, a high-accessibility London facility for children with disabilities, that they feel like they can blend in.

Zane and Lucas, an Easter Seals ambassador, came back in July from their third year at Woodeden. Zane returned with certificates and pottery and photos and, more notably, a girlfriend, with whom he went swimming the other Friday.

She is also 11, and she uses a wheelchair. The courtship went as courtships involving 11-year-olds go: After he wooed her for the first couple days of their 10-day session, she gave him a note instructing him to check yes or no if he liked her. He checked yes, and they were a Woodeden item. He hopes the romance is rekindled next summer.

“I cannot be stuck with them two,” says Lucas, rolling his eyes. “Ten days. . . ”

“Luke, don’t worry,” says Zane, leaning across the table with the type of passive-aggressive smile younger brothers enjoy brandishing at older brothers. “You’ll get a girl some day.”

Like 103 other camps across Ontario, Woodeden is supported by the Toronto Star Fresh Air Fund, which is struggling to meet its fundraising goal this year.

The Braun brothers typically begin pestering Debbie in September to fill out camp applications. They like Woodeden so much because of the sledge hockey and the arts and crafts and the archery and the banquet. Lucas, however, says it is such a treat primarily because of the big lesson it has imparted.

“I’m normal,” he says, “and I’m not alone.”

SOURCE: The Toronto Star

It is widely recognized that recreation and leisure activities are an important component of good health and well-being, and going to movies is undoubtedly a favourite form of recreation for many Canadians. Today, movie theatres and other entertainment venues are more accessible than they were in the past, yet for many people with disabilities who require a support person, going on such an outing remains a rare treat, because the cost is doubled.

In the past, policies on admission fees have varied for support persons or attendants. Even in venues with a policy allowing for free or discounted admission for support persons, it has often been left to untrained employees to decide whether someone truly needs an attendant for daily activities, and is therefore eligible. In other venues, no such policy exists at all.

Easter Seals Canada began correcting this imbalance in December 2004 with the launch of Access 2 Entertainment, a national program for people with disabilities who require the assistance of a support person to accompany them to activities such as attending a movie, concert or sporting event.

Through the program, people with disabilities who require a support person carry a personal Access 2 Entertainment card with them. The card indicates to the ticket seller that the individual does indeed require the support of an attendant. At participating venues, the person with the disability pays the regular admission fee, but the support person receives free or discounted admission.

Diana Gandolfo is one of the 35,000 Access 2 Entertainment cardholders across Canada. Unable to recall all the movies she’s seen in the five years since she received her card, Diana simply knows she has often benefited from the program.

“This card has allowed me to get out more and enjoy more activities such as a memorable trip to the Royal Ontario Museum,” said Diana. “I get excited to see new movies coming out and new attractions that have been added. We are on a tight budget and since I have to pay only my admission, this program helps a lot.”

After its initial success with the program, Easter Seals wanted to expand it, but needed funding to be able to do so. The Government of Canada, through the Social Development Partnership Program—Disability component (SDPP-D), was able to provide Easter Seals with the funds it needed in early 2009. The SDPP-D aims to to increase the effectiveness of the not-for-profit sector in meeting the social development needs and aspirations of people with disabilities. It does this by supporting innovative ways of removing barriers that impede access to programs and services.

As a result of the program’s expansion, the Access 2 Entertainment card is now accepted at over 95% of the movie theatres in Canada. The program also expanded beyond the silver screen to include venues and attractions such as museums, galleries and sporting events, ensuring that like Diana, people with disabilities from across Canada can have the same access as other Canadians to recreational and leisure activities outside their homes.

The Government of Canada provides $11 million per year in grants and contributions through the Disability component of the Social Development Partnership Program (SDPP-D) to help ensure that people with disabilities benefit from the same quality of life as all Canadians. The Program supports innovative solutions to remove barriers through improved access to programs and services, and encourages a wide range of community-based initiatives to address social issues and barriers faced by people with disabilities.

Human Resources and Skills Development Canada’s mission is to build a stronger and more competitive Canada, to support Canadians in making choices that help them live productive and rewarding lives, and to improve Canadians’ quality of life.

SOURCE:

Scholarship opportunity available to Masters and Doctoral students in Disability Policy

As part of the Canadian Disability Policy Alliance, a Community- University Research Alliance (funded by Social Sciences & Humanities Research Council), 25 scholarships will be awarded over the next five years. There is an opportunity in 2010-11 for five scholarships for graduate studies (3 MSc and 2 PhD). Masters students will be funded
for $5,000 for one year, and PhD students for $10,000 for each of two years.

The Disability Policy Alliance will address four major policy areas: health services, employment, education, citizenship. One of the specific objectives of the Alliance is to prepare Masters and Doctoral candidates for future research careers in the area of disability policy.

Eligibility Criteria: To be eligible to receive one of these scholarships, students must:

• be doing research on disability policy for thesis, specifically in one of our 4 areas: health services, employment, education, citizenship; preference will be given to students studying Canadian disability policy.
• be in second year of Master’s or third & fourth year of PhD program.
• have CURA investigator on advisory committee; preference given if supervisor is CURA investigator.
• involve at least one community partner / disability organization in their research. Preference will be given to students with a disability, to Canadian students, and to students studying at a Canadian university.

TO APPLY:
Please submit the following documents:

• Official transcript
• Curriculum Vitae
• Statement of research objectives
• Career objectives
• Other funding held and/or applied for (candidates may have other
  funding, but not from SSHRC)
• Opportunity to self-declare disability
• Thesis supervisor reference letter.

Successful candidates will be asked to: acknowledge the Disability Policy Alliance as a source of funding; contribute to Alliance’s knowledge translation activities; abide by Alliance’s guiding principles.

Submit applications by Sept. 15, 2010 to:
Mr. Michael Schaub,
Centre for Health Services & Policy Research, Abramsky Hall,
Queen’s University, Kingston, ON, Canada, K7L-3N6
For inquiries: shaubm@queensu.ca or 613-533-6000 (x 79363)

Source: Health Canada
Published: June 1, 2010

ALS Awareness Month (Lou Gehrig’s Disease) - June 2010

As Minister of Health, I am proud to recognize June as Amyotrophic Lateral Sclerosis (ALS) Awareness Month in Canada.

ALS, also known as Lou Gehrig’s Disease, is a neurodegenerative disease affecting approximately 2,500 to 3,000 of Canadians.

ALS can strike anyone, regardless of gender, age or lifestyle. Those living with the disease experience progressive paralysis and, in its late stages, their muscles become so weak that they lose the ability to swallow or breathe. There is currently no cure for this disease.

The Government of Canada recognizes the devastating impact of ALS in Canada. Working with Canada’s major neurological charities, including the ALS Society of Canada, the Government is investing in a four-year national population study of Canadians affected by neurological diseases. This study will inform decisions on how we can better meet the needs of Canadians affected by neurological diseases such as ALS.

During this month, blue cornflowers are sold as a fundraiser to support individuals living with ALS. This flower, hearty despite its fragile appearance, is symbolic of those inflicted with this disease.

Please join me in recognizing those Canadians living with ALS, the family and friends who serve as their caregivers, the ALS Society for its commitment to research and public awareness efforts, and those involved in the fight for a cure. I encourage Canadians to become better informed about this disease and offer support to those who are affected.

For more information on ALS, please visit the website of the ALS Society of Canada.

Leona Aglukkaq
Minister of Health
Government of Canada

(No. 99 - March 11, 2010 - 11:15 a.m. ET) The Honourable Lawrence Cannon, Minister of Foreign Affairs, and the Honourable Diane Finley, Minister of Human Resources and Skills Development, today announced that, with the support of all provinces and territories, the Government of Canada has ratified the Convention on the Rights of Persons with Disabilities at United Nations headquarters in New York City.

“Canada is committed to promoting and protecting the rights of persons with disabilities and enabling their full participation in society,” said Minister Cannon. “Ratification of this convention underscores the Government of Canada’s strong commitment to this goal.”

“Canada is proud to have been one of the first countries to originally sign the Convention in 2007,” said Minister Finley. “The ratification of this agreement is just further acknowledgement that Canada is a world leader in providing persons with disabilities the same opportunities in life as all Canadians.”

“Today is a momentous day for Canadians with disabilities and their families,” said Bendina Miller, President of the Canadian Association for Community Living (CACL). “CACL is thrilled that Canada has ratified the Convention. Canada has been an international leader on disability and human rights, and through ratification can continue to play this important role. CACL looks forward to working with the Government of Canada on implementing and monitoring compliance with the Convention.”

“The Government of Canada’s ratification today of the Convention is a historic event for Canadians with disabilities,” said Marie White, National Chairperson of the Council of Canadians with Disabilities. “It signals the end of an era where people with disabilities were seen as objects of charity. Ratification of the Convention makes real our goal of recognition as full and equal citizens of Canada.

“Ratification of the Convention puts an end to the medical model and opens exciting new opportunities for building a more inclusive and accessible Canada. Canadians with disabilities applaud the Government of Canada for this historic action.”

“As the Government of Canada continues to play a leading role with respect to the inclusion of persons with disabilities in sport, we wish our paralympic athletes the best of luck at the upcoming Paralympic Games in Vancouver,” said Minister Cannon.

The Convention on the Rights of Persons with Disabilities is an international human rights instrument of the United Nations intended to protect the rights and dignity of persons with disabilities. Parties to the Convention are required to promote, protect and ensure the full enjoyment of human rights by persons with disabilities, and to ensure that they enjoy full equality under the law.

There are approximately 4.4 million persons with disabilities in Canada—about 14.3 percent of the population.

Source: Foreign Affairs and International Trade Canada

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Eye health must be a priority for all Canadians

Toronto, ON – For the month of May, Canadian vision health charity, CNIB, introduces the first ever Vision Health Month – a national campaign to promote eye health and raise vital funds for the organization’s programs and services.

According to CNIB researchers, there are 836,000 Canadians living with vision loss. Even more astounding is that 75 per cent of vision loss is preventable. “With greater public awareness of the risks, many Canadians could avoid losing their sight each year. That’s why the campaign is so important,” says CNIB President and CEO John M. Rafferty.

“Vision Health Month is about reminding people to put their eye health first. It is about encouraging Canadians to get regular eye exams and wearing protective sunglasses, so that we can help prevent vision loss before it starts,” he says.

Among the many initiatives being launched for Vision Health Month is CNIB’s Vision Risk Assessment, a short quiz developed to alert Canadians to their risk of eye disease and help prevent future vision loss. The quiz is available free of charge throughout the month of May in more than 350 retail outlets across the country, including Costco, Wal-mart and Metro supermarkets.

Also being introduced this month is the Great Canadian Yoga Stretch. The month-long fitness fundraiser includes participants from across the country setting a “stretch goal” (such as mastering a new pose or completing their first yoga class), collecting donations from friends and family, and working to achieve their goal on the yoga mat.

Taking place on May 27, Shades of Fun day is another exciting campaign in support of Vision Health Month. In this first-of-its-kind event, participants are asked to put on their sunglasses for the day to protect their eyes from UV damage, and host fundraising and awareness activities in support of CNIB.

“Shades of Fun day is designed to be fun for everybody,” says Rafferty, “Whether it’s workplace teams, families or just about anybody who’s got a pair of shades and a desire to make a difference.”

To show their support, Canadians can donate $5 by texting the word CNIB to 45678. All proceeds from Vision Health Month will go to CNIB services for Canadians who are blind or partially sighted, like counselling, computer training and free access to the CNIB Library.

For more information about Vision Health Month, call CNIB at 1-800-563-2642 or visit www.cnib.ca

To speak to a CNIB Spokesperson please contact:
Yeena Peng
Specialist, Media Relations, CNIB
T: 416-486-2500 ext. 8355
C: 416-529-1628

Source: CNIB

People With Disabilities Deserve Jobs: Official
Posted By Kelly McShane, Special to the Packet and Times
Posted Mar 2, 2010

With the help of a new community support campaign, it’s going to be easier for people with disabilities to showcase their talent as part of Ontario’s workforce.

“We want to ensure that all Ontarians have the opportunities and tools they need to reach their full potential,” said Kristen Tedesco, communications coordinator for the Ministry of Community and Social Services.

Provincewide, more than 150 service providers have signed on to help hundreds of people with a wide range of disabilities find jobs.

The campaign aims to create employment opportunities for Ontario Disability Support Program (ODSP) clients, while working to change attitudes toward the value of disabled community members in the workplace, both from the perspective of potential employers as well as from disabled people themselves.

“The campaign is two-fold: it helps employers identify talent and create a more inclusive workplace, while at the same time helping people with disabilities discover and apply their skills in the workforce,” Tedesco said.

Through the campaign, employers and potential employees can connect with employment support agencies that offer a range of employment services, including job matching and help with training and retention.

The majority of these services are free of charge.

People who leave the ODSP for paid work may be eligible for a $500 Employment Transition Benefit, as well as automatically receiving a $100 work-related benefit to help with costs, such as transportation or clothing.

“We also increased the maximum deduction for informal child-care costs from $390 to $600 per month per child to provide another child-care option for working parents,” she said.

In addition to these measures, in April 2009, the ministry exempted as income and assets the earnings of social assistance recipients attending full-time post-secondary education.

“We simplified rules around earnings exemptions, so for people on ODSP, the more you work, the more money you keep,” Tedesco said.

For more information on the campaign, visit www.mcss.gov.on.ca/talent

Date: January 29, 2010 For immediate release
PRIME MINISTER STEPHEN HARPER NAMES FIVE OUTSTANDING CANADIANS TO SENATE

OTTAWA – Prime Minister Stephen Harper today filled five vacancies in the Senate.

Appointed are Pierre-Hugues Boisvenu (QC), Bob Runciman (ON), Vim Kochhar (ON), Elizabeth (Beth) Marshall (NL) and Rose-May Poirier (NB). These appointments give the Government a plurality of seats in the Upper House.

Vim Kochhar is the President and founder of the Vimal Group of Companies in Toronto. Working for InterContinental Hotels and Howard Johnson Hotels, he was responsible for project management of major hotels around the world.

For the past 30 years, Mr. Kochhar has played an active role in the community by creating the Canadian Foundation for Physically Disabled Persons. Through this foundation, Mr. Kochhar has created the annual Great Valentine Galas, the Terry Fox Hall of Fame, Rolling Rampage for elite wheelchair athletes, the Canadian Helen Keller Centre, Rotary Cheshire Homes for the Deaf-Blind, and the WhyNot Marathon for the Paralympics. He has also been a friend of Easter Seals and has attended some of their meetings and events over the years. He is currently serving as Board Member for the Canadian Museum for Human Rights and as Chair of the Canadian Paralympic Foundation.

Among many other distinctions, Mr. Kochhar was chosen by India Abroad as one of the 30 most influential Canadians of Indian origin. Born in India, Mr. Kochhar received his engineering degree at the University of Texas and immigrated to Canada in 1967, becoming a Canadian citizen in 1974.

United Nations — Associated Press
Published December 2, 2009

Musician Stevie Wonder attends the NBA game between the New York Knicks and Los Angeles Lakers Staples Center on November 24, 2009 in Los Angeles. Kevork Djansezian / Getty Images

Blind pop star will focus on helping people with disabilities

The UN chief is naming blind pop star Stevie Wonder a United Nations Messenger of Peace to focus on helping people with disabilities.

United Nations spokeswoman Marie Okabe said Wonder’s designation as a UN peace envoy will be officially announced on Thursday by Secretary-General Ban Ki-moon.

She said the singer-songwriter, who has won 25 Grammy awards, is being recognized for his philanthropic work with the U.S. President’s Committee on Employment of People with Disabilities, the Children’s Diabetes Foundation and Junior Blind of America.

Wonder will be the 11th UN Messenger of Peace, joining a list of notable figures including Nobel Peace Prize winner Elie Wiesel, actor Michael Douglas, primate expert Jane Goodall and conductor Daniel Barenboim.

Source: Globe and Mail