CILT's Volunteer Vibes Volume 10, Issue 4 Fall 2009 Volunteer Program Update We've had a few changes since our last newsletter. We have had to say goodbye to a couple of really great people. Luigi Lisciandro, due to health reasons, had to leave his volunteer position, but will hopefully return when he is well again. We wish him a speedy recovery. Orathai Bowers, a wonderfully cheerful person and a delight to be around, has decided to visit her family in Thailand for a while. She will be returning to Canada in the spring, and we hope that she will return to her volunteer position at CILT. Call for Volunteers! CILT is currently recruiting volunteers. We are looking for at least two volunteers who are able to commit to at least two half days a week. Volunteers are needed to provide administrative support to staff (i.e. mailings, photocopying, assembling information kits, etc.) Applicants are asked to provide a resume and/or application form, with at least two references. If interested, please call Nancy at (416) 599-2458, ext. 227 or email to peervolunteer@cilt.ca. Only successful applicants will be contacted for an interview. Protect Yourself Against the Flu Information found at www.toronto.ca/health/flu/index.htm This year it's a different flu season. Two flu vaccines will be available, one against seasonal flu and the other against H1N1 flu. Ontario is adopting a phased approach in rolling out two flu immunization programs this year. There will be enough H1N1 and seasonal flu vaccine for all Ontarians who need and want to be vaccinated. The seasonal flu shot will not protect you against the H1N1 flu virus. Talk to your health care provider about flu vaccinations and what's best for you and your family. Two Flu Vaccines Every year, Ontario has a vaccination program in the fall to protect people from the seasonal flu. This year, two vaccines have been developed - one for seasonal flu and the other for H1N1 flu. If you have questions or concerns about vaccinations for you and your family, discuss them with your health care provider. H1N1 - A new strain of the flu What is H1N1 flu virus? The H1N1 is a new version of the flu virus. It is spread from person to person, and causes the same symptoms as regular flu. H1N1 flu virus was first detected in Mexico last spring. Within just a few months, it spread to many countries around the world, prompting the World Health Organization in June to declare the first global flu pandemic in 41 years. The H1N1 flu virus has affected many Ontarians and this coming flu season it is expected to affect many more. How does H1N1 flu virus spread? H1N1 flu spreads like any other flu virus, mainly from person to person through coughing or sneezing. People can become infected by touching objects or surfaces with flu viruses on them and then touching their mouth or nose. If I've had a seasonal flu shot, do I really need the H1N1 vaccine? Seasonal flu vaccine will not protect you against H1N1. With two types of flu viruses circulating, it is recommended that people get both. Staying healthy and preventing the spread of flu * Wash your hands often with soap and water, especially after you cough or sneeze. * Hand sanitizers are a good alternative if they are over 60% alcohol-based. * Sneeze and cough in your sleeve not your hand. * If you get sick with the flu, stay home from work or school and limit contact with others. For information about seasonal flu, H1N1 and pandemic preparedness call ServiceOntario, Infoline at 1-800-476-9708 (Toll-free in Ontario only); TTY 1-800- 387-5559; in Toronto, TTY 416-327-4282. Hours of operation: 8:30am - 5:00pm Telehealth Ontario at 1-866-797-0000; TTY: 1-866-797-0007 Hours of operation: 24 hours, 7 days a week. To find health care options in your community, visit ontario.ca/healthcareoptions or call 1-866-330-6206. If you don't have a health care provider, you can register for the Health Care Connect program at ontario.ca/healthcareconnect or call 1-800-445-1822. Give a Day, Get a Disney Day Starting in early December, Volunteer Canada will announce access for nonprofit organizations and volunteer centres to enter volunteer opportunities into a centralized national database for inclusion in the Give a Day, Get a Disney Day, promotion. Nonprofit organizations will be required to agree to verify individual volunteer participation within 72 hours of the completion of the volunteer activity. This verification is essential to allowing the volunteer to receive their Disney Pass. This function will be included on the database. It is encouraged to have a component of the volunteering opportunity to incorporate a family friendly activity. It is not a requirement; however, we do need to ensure a balance of family friendly opportunities are included in the database, considering the nature of the relationship with Disney. Only opportunities occurring on or after January 1, 2010 will qualify for this promotion. For more information, visit http://volunteer.ca/en/give-day-get-disney- day-information-organizations-volunteer-centres. The Canadian Foundation for Physically Disabled Persons (CFPDP): Changing the Way Canadians Think About Disability In 1984, Rotarian Vim Kochhar and his fellow The Rotary Club of Toronto - Don Valley members were asked to help raise funds for the Cheshire Homes Foundation to help build housing for the deaf-blind. The eventual result was the First Annual Great Valentine Gala which took place in February, 1985 in Toronto and raised $230,000. It was supposed to be a one-time event, but within two years became so successful that a separate charitable organization to stage subsequent events and allocate funds was created. That organization was the Canadian Foundation for Physically Disabled Persons (CFPDP), set up in 1987 by the The Rotary Club of Toronto - Don Valley with Vim Kochhar as Founding Chair. Its goal was to assist individuals with physical challenges to live fuller lives and raise awareness of their achievements and contributions to society. Since then, CFPDP has initiated dozens of important Projects & Events, raising over $21 million. Today, the CFPDP continues to initiate projects that help thousands of physically challenged people across the country. "We need to concentrate on things that really matter like character, compassion and community," says Kochhar. "Above all, we need to build awareness and keep promoting the message of inclusion." Every year, CILT supports CFPDP by purchasing a table at the Annual Inductee Luncheon, and asking our volunteers to join us. This year, four more amazing individuals were inducted into the Hall of Fame: Jeff Healy, David Hingsburger, Diane Roy and Jill & Gary Taylor. Jeff Healy (Achiever): Virtuoso blues-rock guitar player, jazz band leader and broadcaster, Jeff Healy left an indelible mark on the worlds of jazz, blues and popular music. Although robbed of his sight by a rare form of cancer shortly after birth, Healy never let his disability stand in the way of his passion for life and music. The Juno Award winner and Grammy nominee's soulful, inventive, lap-style guitar technique won over fans and musicians alike, among them legendary guitarists B.B. King and Steve Ray Vaughn. A lifelong fan of traditional jazz, Healy also toured and recorded with The Jazz Wizards and hosted the popular CBC Radio program, 'My Kinda Jazz'. Healy died of cancer in 2008 at the age of 41. David Hingsburger (Builder): For more than 30 years, David Hingsburger has fought to reduce the sexual victimization of people with developmental disabilities. A prolific author, lecturer and therapist, Hingsburger has campaigned fearlessly for greater awareness of the sexuality of people with disabilities, while also coaching individuals with intellectual disabilities how to recognize and deal with problematic sexual behaviour. Hingsburger's leadership and compassion have made it possible for more Canadians with disabilities to live with the dignity and respect they deserve. Diane Roy (Athlete): A four-time Paralympian, multi-medalist, Canadian record holder and World Champion marathoner, Quebec native Diane Roy discovered her unmistakable passion for wheelchair racing after losing the use of her legs in a car accident at the age of 17. During her recovery, Roy dedicated herself to pursuing her full potential, a commitment that has paid off in one of the most distinguished records in international athletics. Both on and off the track, Roy's unfailing grace and sportsmanship have earned her a reputation as one of this country's preeminent ambassadors for Paralympic sport. Jill and Gary Taylor (Achievers): Niagara Falls residents, Jill and Gary Taylor's extraordinary efforts on behalf of others have touched the lives of Ontarians from Niagara to the shores of James Bay. A below-the-knee amputee with a history of heart trouble, Gary and his wife Jill have served as fundraisers and tireless for numerous community organizations serving the disability community, children with life-threatening illnesses and the disadvantaged. The Taylor's also run their own non-profit organization collecting, repairing and distributing used mobility aids and assistive devices to people in need across the Niagara Region and Northern Ontario. About 311 Launched on September 24, 2009, the City of Toronto's 311 service is now fully operational, 24 hours a day and seven days a week. 311 is the largest, most exciting customer service improvement undertaken by the City of Toronto since amalgamation.311 improves accessibility to non-emergency City services and information, and will increase the City's effectiveness in responding to public inquiries. Not sure how to report a pothole? Need to request pick-up of an old appliance? Looking for a program at your local community centre? Simply call 311. Our customer service representatives are available to assist you 24 hours a day, seven days a week. More than just a phone number, 311 Toronto provides access to a wide range of online services, and in the coming months will expand with online service requests and online tracking. Information counters are also available at City Hall and most Civic Centres during regular business hours, offering in-person assistance and free telephone access to 311. You can also contact 311 by e-mail or fax. How 311 works Toronto's 311 system is the largest in North America to launch with end-to-end service integration. What this means is that many of the City's different work order systems will effectively work together to bring improved service delivery to the residents and businesses in Toronto. Another key component of the 311 system is the City's knowledge base. As of launch day, the knowledge base contains more than 15,000 answers to 13,800 questions. 311 vs. 911 and 211 311 is for non-emergency City services, programs and information. Always call 911 in case of an emergency. 911 connects you to EMS, Police and/or Fire in an emergency situation and service is provided in all languages. 211 is for social service and counselling referrals. You can also visit www.211toronto.ca. Performance reports 311 will publish regular reports that provide statistics about the number of calls answered, first-call resolution (calls that are answered by 311 customer service representatives without needing to transfer the caller to another City division) and other service measures. The City will use the data from the 311 calls and service requests to plan, forecast and budget for improved service delivery. Facts and stats * 311 Toronto is the largest end-to-end service integration system in North America. * The 311 Knowledge Base holds 15,000 answers to a possible 3,800 questions. * The City currently processes approximately 48,000 calls per week. * Prior to the launch of 311, there were 251 inquiry lines in place to access City services at nine call centre operations at 26 locations. * More than 100 highly trained customer service representatives now work from the new 311 Contact Centre. * There are 100 workstations in the Contact Centre. Send us feedback on twitter@311.toronto; http://www.toronto.ca/311/about.htm * IP Telephony or Voice over Internet Protocol (VOIP) technology is used in the Contact Centre. * 311 staff will resolve 70 per cent of all calls at the first point of contact, reducing the number of calls transferred. Service can be provided in more than 180 languages using a telephone interpretation service; TTY service for hearing impaired will also be available. Phone within Toronto city limits: 311 Phone outside city limits: 416-392-CITY (2489); TTY customers: 416-338-0TTY (0889); Fax: 416-338-0685 E-mail: 311@toronto.ca E-mails are usually responded to within 48 hours. Always call 911 for emergencies. CILT News BOOK REVIEW by Susan DeLaurier: The Ugly Laws: Disability in Public By Susan M. Schweik This book concerns attitudes and laws in the late nineteenth and early twentieth centuries in American cities, and how they have affected our current views of disability. These laws portrayed people with disabilities as "unsightly beggars". For the most part, these people were simply those with a disability, and the affect of making this a law was to criminalize disability. America, in particular, had a broad cultural emphasis on individualism which enabled these laws supporters to position disability and begging as individual problems rather than relating them to broader social inequalities. The general feeling was that wealth existed for all those willing to work, even without any sort of universal health and welfare plans. Wording such as "begging or a certain person" allowed those "unsightly" to be arrested and sent to almshouses which were justified as care taking environments. In San Francisco, officials distinguished what forms of bodily difference were and were not moral transgressions. Race, nationality and gender affected decisions. A theory was that allowing "ugly" people in public would diminish everyone's social enjoyment. Some actually believed that seeing disability would cause one to "catch" a disability. Schweik uncovers the murky history behind the laws, situating the varied legislation in its historical context and exploring in detail what the laws meant. The language of crime and punishment precedes the language of charity. Patterns of codification of ugly laws were intrinsically tied to laws of sex and gender. Laws against women in particular emphasized specific physical features more than for men. Since proper femininity was understood as inherently averse to public display, a woman's disease or deformity was viewed as particularly transgressive. This became even more extreme when speaking of pregnant women. Charity organization activities led to "unsightly beggar ordinance" as well. These organizations were the precursor to modern social work. Material relief was not given - only consul and coordination. "Friendly visits" were encouraged and tried to end official relief and help from friends that were thought to encourage pauperism! They wanted to "cure" the poor. Giving aid was thought to be detrimental to a person's character. The element of eugenics was very strong with the firm belief that the merely misfortunate will get help while the "degenerative" will not. Tort law did not abolish ugly laws but they did say that there was to be no discrimination if a person "exercised a degree of care" which was open to interpretation. Reviewing the law's more recent history, Schweik analyzes the shifting cultural memory of the ugly laws, examining how they have been used and misused by academics, activists, artists, lawyers, and legislators. Using a huge range of cultural materials from police reports and court dockets to popular fiction and reformist exposes, Schweik writes about disability in a meticulously researched argument about law, politics and cultural aesthetics. One of the major ways in which the disability rights movement stood ugly law on its head was by countering the discourse of disgust directed at disabled people. Children being denied schooling because they were "disgusting" and because they were unable to care for themselves independently, was an example. This book would be most useful as an addition to a person's academic study of disability rights. There are many references to previous works which may not be familiar to the reader, but the book will still be informative and enjoyable. In showing the conditions of disability at the turn of the last century, Schweik shows how we can better understand disability in the present. Direct Funding's 15th Birthday By Ian Parker Robert was in an intolerable situation. Every day, he was forced to accompany his mother to her workplace. He wasn't an employee there. In fact, he had very little to do there all day. But Robert had no choice but to sit there, in his wheelchair, until his mother was ready to go home. Robert had no attendant services, and being with his mom at work was the only way he could get help for essential tasks like eating or using the washroom. This had been going on for months. Robert's grandmother had been assisting him before that, but she had died. And Robert's mother was already helping him a great deal while simultaneously trying to hold down her job. A young man with Duchenne Muscular Dystrophy, Robert lives in rural Ontario. Because he requires special care when transferring due to very brittle bones, and because of other complex personal needs, Robert's assistants have to be people who know him really well. They have to be completely consistent and reliable. It was critical that Robert have personal control of his own service. Happily, personal control is a cornerstone of Direct Funding. And this program was able to help a family out of crisis. Fifteen years after Direct Funding was given the go-ahead by the provincial government as a pilot project, it's gratifying to observe how far we've come. In the past 15 years, we've managed to secure permanent program status and an expansion of the program. In the past 15 years, Ontarians with physical disabilities have had an unprecedented opportunity to hire, train and manage their own attendants, allowing them more choice, control and flexibility with their services. In the past 15 years, Direct Funding has made a dramatic difference in the lives of almost one thousand people. Thanks to Direct Funding, men and women with physical disabilities have been able to live where they want, travel, get jobs, look after their children, look after an aging parent-all because there were flexible supports in place that allowed them this level of independence. This newsletter shares with you a few of the generous submissions we received from self-managers this fifteenth year. Before 1994, there was no program in Ontario like Direct Funding. In fact, there was almost nothing like it in Canada. Those who used attendant services were forced to struggle with agency-delivered models that didn't always meet their needs. With those models, it might mean having to wait until an attendant could help you, because he or she was busy helping someone else. It meant little or no control over the timing of normal, everyday activities like getting up, dinner or even bedtime. It might mean living in a designated apartment building instead of a home and neighbourhood of your choosing, because that was the only place where you could receive services. It might mean being unable to attend college or go to work because you had no assistance there with the washroom or your lunch. It might mean never going on holiday because your attendants were obligated to stay behind and help others. And it might mean relying on people who didn't get along with you for your most basic personal and intimate needs. We people with disabilities knew that there could be a better way of life. A model of self-managed attendant services could enable people with disabilities to select and hire their own attendants. Getting from dream to reality in Ontario was neither fast nor easy. In fact it took over eight years of hard work and determination, working together with consumers, government officials and other community organizations, and persevering through a change of government and the setbacks that came with that. From the initial commitment, in 1990, by liberal Minister of Community and Social Services, Charles Beer to pilot direct funding, we finally heard in 1994 the announcement we had been working towards and waiting for. At a provincial consumer conference, New Democratic Party Minister of Health, Ruth Grier announced the immediate start of a 2 year pilot for 80 to 100 self-managers of attendant services. It would be administered by the Centre for Independent Living in Toronto in partnership with Ontario Network of Independent Living Centres. I will never forget the huge cheer that arose from the crowd. We were all so joyful to hear this great news... to finally get the green light to start. We had been through so much hard work and dead ends. Yet through it all we were supported by many fine allies from government officials and other community organizations. This experience bonded many of us into lifelong friendships. One of my government friends has said "Direct Funding is the best thing we ever did!" An independent evaluation of the pilot project proved so successful that in 1998, Progressive Conservative Minister of Long Term Care, Cam Jackson announced that Direct Funding would be a permanent program and expanded to 700 people. We had done it! One of the successful offshoots of this program is the contribution it has made to a growing awareness of the capabilities of people with disabilities. It has meant many more people with disabilities are visible and participating in their communities and workplaces. We have always maintained that the desire for self-management is not related to a person's level of services. Three people in the pilot project who used ventilators proved that self-management can work really well for people with complex needs. Today, no fewer than 40 self-managers use ventilators. No program, of course, is perfect. And Direct Funding continues to experience challenges. These include, for one, the current limitations of government funding. The resources we receive are simply not sufficient to meet consumers' increased needs as they age or as their disability progresses. They don't provide consumers with adequate and competitive wage levels for recruiting and retaining employees. They do not allow for applicants to start DF immediately after demonstrating their needs; instead, they must wait many years and find precarious sources of support, like aging family members. This underfunding has a huge impact. In a recent survey, we found the active waiting list of applicants had experienced a dramatic drop in numbers (from 473 down to 260). Unfortunately, many applicants had fallen out of contact or died while waiting to get on the program, or had been forced to move into alternate arrangements such as institutional services. Other eligible people with disabilities aren't even bothering to apply because they know they'll languish at the bottom of an impossible list. Even with the list down to 260, the wait is long. Do the math: with only 30 spots coming open per year, a new applicant must wait for over eight years, unless there is an increased investment in the program. Despite the challenges, the fact remains that almost a thousand people in Ontario have seen their quality of life dramatically improve, thanks to Direct Funding. This is living proof of the value of a program that so many men and women worked so long and hard to achieve. It is our hope that this program is reinforced and carries on to make the same difference to many more people with disabilities in future years. Spring Forward Through Empowerment On Thursday May 6, 2009 the Parenting With a Disability Network (PDN) is planning to hold a one day conference/workshop for service providers in the child health and welfare sector, including CAS workers, social workers, midwives, nurses, etc. on "parenting with a disability". It is high time that we begin to put an end to the existing myths and misconceptions that people with disabilities cannot be good parents. We are currently in the planning stages. A big part of the day will include a panel discussion of the positive and negative experiences of parents with various types of disabilities. We also intend on putting an end to the confusion around the concept of Nurturing Assistance, through a role play demonstrating the concept. We want to end the day on a positive note, in a discussion around how we can all work together to empower parents with disabilities and end society's misconceptions. A large part of the afternoon will be spent discussing the myths and misconceptions that exist among society at large and how we can work together to bring those misconceptions to an end. Stay tuned for more up-to-date information on this monumental event. Gateways Project Update As many of you are aware, the manuscript "Navigating healthcare: gateways to cancer screening' was recently published in Disability & Society, Volume 24, Issue 6 October 2009 , pages 739 - 751. This manuscript was developed from the Literature Review, conducted by Project Coordinator, Julie Devaney and PhD. Student, Lisa Seto. This scholarly article is a step forward in research, especially Canadian research in which the Gateways project will find more information as the project continues to start its Second Phase: a Tool Kit - DVD and Training Manual that will provide health care providers across the country to learn from and implement the recommendations made by the women that participated in the five focus groups that were held earlier on in the first phase of the project. "The idea is to get the information from the women right to the health-care providers," says Nancy Barry. The program will employ scenarios revealed by Gateways to develop DVDs that can be used in training health-care staff. The intended result is a "Disability Awareness 101", with reference to appropriate provisions of accommodations when women with disabilities access cancer screening. Because the funding came from the Canadian Breast Cancer Foundation, Phase II will be focusing mainly on breast cancer screening. The focus groups with health care providers will most likely begin in February 2010 and we hope to see some positive results from them, and contrast how different, or similar their thoughts or ways in working with women with physical disabilities are. Stay tuned for more Gateways News. CILT's 2009 United Way Campaign Every year CILT has a United Way Committee to raise funds for the United Way. This year's Committee Chair was Melanie Moore, who was accompanied by Andrea Rae, Leisa DeBono, Elena Petrescu and Victoria Pica. This year's fundraising event was a very successful bake sale. Although CILT staff were not sure how it was going to turn out since we are now in a new location, we had a great turnout. People in the surrounding areas that attended the bake sale were most pleased to have a variety of baked goods, and they commented that CILT should do this bake sale closer to the holidays and perhaps make a lunch out of it. Thank you to all for contributing and making this year's United Way Campaign a success. Without you, there would be no way!