Prime Timer Focus October 2008 Fall Issue 6 Questions To Ask Your Local Candidate In The Upcoming Federal Election by April D'Aubin and The Council of Canadians with Disabilities (CCD); reprinted from ARCH ALERT, September 2008 1. What concrete steps is your party prepared to take to help overcome the chronic level of unemployment that continues to plague too many Canadians who have a disability, including we who are blind, deaf-blind and partially sighted. The Government of Canada must become a model employer both in its hiring practices and its accommodation of disability. We want to see persons with disabilities at all levels within the public sector not just front line workers - as we have the requisite skills and abilities to occupy a range of positions. We want a federal government procurement policy that demands accessibility so new technology does not become another barrier to so many of us. While the labour market is in provincial jurisdiction, there is still a role for the Federal government to play. We seek the creation of specific targets for the employment of persons with disabilities within federal/provincial Labour Market/ Agreements negotiated with the provinces. 2. What is your party prepared to do to make Canada's election system fully accessible to Canadians who are disabled, including we who are blind, deaf-blind and partially sighted? AEBC wants testing of alternative voting options in bi-elections, and amendment of the Canada Elections Act to bring this about in federal elections. Other election issues include access to party websites, extra costs associated with a person with a disability becoming a candidate, and access to campaign literature. 3. Is your party prepared to take on an expanded role for the Government of Canada in fighting the chronic level of poverty that continues to confront far too many Canadians who have a disability, including we who are blind, deaf-blind and partially sighted? The poverty of Canadians with disabilities is a national disgrace: Canadians with disabilities and their families are twice as likely to live in poverty as other Canadians and the incidence of poverty among First Nations and Aboriginal People with disabilities is even higher. Make the existing Disability Tax Credit refundable so it benefits all persons with disabilities and not just those who are working and ensure that new federal benefits for persons with disabilities are not clawed back by provinces and territories from those on social assistance. 4. Is your party prepared to reinstate the Court Challenges Program, or institute a new Program that will assist individuals and organizations to take test cases to court under Canada's Charter of Rights and Freedoms? Rights without the opportunity to enforce them are not all that useful. The Court Challenges Program provided funding to take test cases to court to challenge acts of the federal government under Canada's Charter of Rights and Freedoms. The Harper government cut this Program and many organizations, including the AEBC, have called for its reinstatement. 5. Would your party, if elected, undertake to improve access and inclusion in Canadian society for people with disabilities? Accessibility regulations for federal transport systems to replace ineffective voluntary codes of practice, ratification of the UN Convention on the Rights of Persons with Disabilities, re-establishment of a Parliamentary Committee on the Status of Canadians with disabilities. For years the federal government had such a committee and it served persons with disabilities well - as a non-partisan committee it provided us one welcoming venue. 6. Over the last decade, there has been significant economic growth in Canada, but the gap between the rich and poor has increased. Ordinary Canadians are working harder, but their incomes have stagnated. Will your party attempt to reverse this trend, and how would your party do this? C-SASIL Fundraising Dinner & Musical Night C-SASIL (Canadian South Asians Supporting Independent Living) is raising funds, celebrating the 9th anniversary and the festivals—DIWALI (Festival of Lights) Monday October 27, 2008 6-9 pm NOTICE FROM MINISTRY OF HEALTH AND LONG TERM CARE DIABETES STRATEGY Today, about 900,000 Ontarians live with diabetes (8.8 per cent of the province’s population) and this number is expected to grow to 1.2 million by 2010. Diabetes and its complications, including heart disease, stroke, kidney disease and blindness cost the health-care system over $5 billion annually. Ontario is launching a new $741 million diabetes strategy that aims to prevent, manage and treat diabetes care across the province. This strategy builds on internationally accepted best practices and the recommendations of the Diabetes Management Expert Panel. This panel was established by the Ministry of Health and Long-Term Care in 2006 to provide advice on improving diabetes care in Ontario. Increasing Access to Team-Based Care: Two hundred and ninety million dollars is being invested in expanding current programs, aligning care and funding new programs. Ontario is increasing access to team-based care closer to home by mapping the prevalence of diabetes across the province and the location of current diabetes programs in order to align services and address service gaps. Depending on patients’ needs, the health care team could include a family physician, registered nurse, registered dietician and/or an endocrinologist. Diabetes Prevention: The diabetes strategy will invest $6 million in prevention programs, including education campaigns to raise awareness of risk factors that contribute to the onset of type ‘2’ diabetes, such as physical inactivity, poor nutrition and obesity. The campaigns will focus on high-risk populations, including Aboriginals, Hispanics, South Asians, Asians, African-Canadians, lower income families and people aged 50 and older. Diabetes Registry: A $150 million investment over the next four years, in a diabetes registry, is set to begin in Spring 2009. All Ontarians living with diabetes will be entered into an electronic registry that will provide people with diabetes instant access to electronic information and educational tools to help them manage their care. Physicians will be able to use the registry to check patient records, access diagnostic information and send patient alerts. The registry will result in faster diagnoses, treatment and improved management for Ontarians living with diabetes. The diabetes registry is the first step in Ontario’s e-Health Strategy that will provide all Ontarians with an electronic health record by 2015. Insulin Pump Therapy: In December 2006, the Ontario government began a program that provides funding for insulin pump therapy to children and youth aged 18 and under who met the clinical criteria. Funding was then extended for those patients in the program turning 19 (while the Insulin Pump and Supplies for Adults Expert Panel, chaired by Dr. Bruce Perkins, assessed the clinical needs of adults with type 1 diabetes) for insulin pump therapy. As of September 2008, this $62 million investment will allow funding for insulin pumps and supplies to be extended to all adults with type 1 diabetes who meet the clinical criteria for funding under the Assistive Devices Program. Today, about 1700 children and youth benefit from the Ministry-funded insulin pump therapy, and in September 2008, over 1300 adults will receive funded insulin pumps every year. Approximately 30 per cent of patients living with type ‘2’ diabetes rely on insulin. In the next 18-24 months, the Insulin Pump and Supplies for Adults Expert Panel will review medical literature and consider expanding the pump program to adults living with type ‘2’ adult diabetes. CHRONIC KIDNEY DISEASE SERVICES Kidney disease is one of the complications of diabetes that affects roughly 40 per cent of Ontarians living with diabetes. Diabetes is the most common risk factor associated with kidney disease. As a result, Ontario will also be investing $220 million to expand its Chronic Kidney Disease (CKD) Program. This will improve access to all the services available under the CKD program which strive to identify kidney disease as early as possible; prevent/delay kidney function deterioration as long as possible and manage end-stage kidney disease through renal replacement treatments. This will include increasing dialysis service capacity at CKD regional centres, dialysis satellites, long-term care homes and independent health facilities. Ontario will also work to increase the availability of home renal replacement therapies (hemodialysis and peritoneal dialysis), both which can be done day or nighttime, so that patients who currently rely on dialysis treatment in hospitals and other health care facilities can experience less interruption in their daily lifestyle and receive treatment in the comfort of their own home. Bariatric Centres of Excellence: Obesity is one of the main risk factors associated with diabetes. More than 50 per cent of type 2 diabetes cases in Ontario are associated with obesity. The government is improving access to bariatric surgery – a procedure that modifies the gastrointestinal tract to reduce food intake. This $75 million initiative will increase Ontario’s capacity for bariatric surgery several-fold within two years and it will continue to increase thereafter. In 2006/07, 169 procedures were performed in Ontario and 485 patients were funded for surgery out of country. Ontario will enhance capacity for bariatric surgery in the province by: * Providing bariatric education and training to health care providers, * Expanding bariatric surgical capacity, and * Establishing pre and post bariatric surgery programs that will be linked to surgical programs. For more information, contact: Alan Findlay, Minister’s Office, 416-327-4320 Mark Nesbitt, Ministry of Health and Long-Term Care, 416-314-6197 Andrew Campbell, Minister’s Office, 416-326-8500 Gary Wheeler, Ministry of Health Promotion, 416-326-4806 Gateways to Cancer Screening: A Participatory Needs Assessment of Women with Mobility Disabilities This report outlines the main activities and accomplishments of the Gateways to Cancer Screening Project. The project is based on the premise that women with physical mobility disabilities have faced significant barriers in accessing cancer screening. The Gateways project developed a series of 5 peer-led focus groups in the Greater Toronto Area where women with physical mobility disabilities came forward to describe their experiences with cancer screening and propose recommendations to facilitate positive change. Prior to developing the focus group questions we carried out a thorough literature review. A systematic analysis of the existing literature was then conducted and gaps were identified. This review was developed into an article we entitled Navigating Health Care: Gateways to Cancer Screening and it was submitted to a peer-reviewed journal called Disability and Society, 2008 (accepted for publication). A copy of the article can be found in the Appendices. The study was conceptualized as a qualitative needs assessment to identify the barriers faced by women with mobility disabilities in accessing screening and existing services as well as identifying specific gaps in services. The Gateways to Cancer Screening project has brought together disability rights activists, community workers, health care providers and academics to assess these barriers, and to stimulate change. The term “Gateways” was specifically chosen to denote facilitators to access care, rather than just identifying barriers. In contrast to traditional social science research that has historically excluded the voices of disabled people (Oliver, 1996), Gateways is explicitly designed as a user-driven project. Central to this project is the notion that small focus groups led by research team members who are also wheelchair users will empower the voices of disabled women to tell their own stories in their own language (Bloom, 2002; Thomas, 1999) about their experiences with breast, colorectal and cervical cancer screening. As researchers we recognized the need to examine the impact diversity has on the experience of screening among women with disabilities and sought to include women who identify as ethno-racial, aboriginal, lesbian/bisexual/transsexual, trans-gendered and/or may be living on fixed incomes. Members of the research team include women with and without mobility disabilities as well as women identifying with other marginalized communities. There is a difficult and strained history between the medical profession and disabled people that is discussed in detail through this report. This relationship coloured the experiences, attitudes and expectations of women considering and exercising their options in accessing screening. With conscious knowledge of this history, the focus groups were designed by a team of researchers that included both wheelchair-users and health care professionals and the groups themselves were facilitated by wheelchair-users. In this way, we were able to connect both institutional and experiential expertise to develop strong strategies for change in an environment that was clearly welcoming to the voices of participants. Participants were drawn to the groups as an opportunity to have their voices heard about their experiences and to advocate for change in the provision and delivery of services. While this was often the primary motive, participants benefited greatly from the educational aspect of the group. The first segment of each session was an information session about types of cancer screening and the health benefits of early detection. In effect, these groups became peer support networks and were ultimately facilitators to cancer screening that people may not have attended otherwise. Peer support workers Nancy Barry and Fran Odette, who are also wheelchair users, facilitated the groups while Nurse Clinician Linda Muraca presented health information and received questions. This process served as a forum to bring women together to talk about health. Small discussion groups facilitated conversations that are entry points into a new way of negotiating healthcare. Participants opened up to one another about past negative experiences in the healthcare setting. In one particularly potent revelation, two women who attended a focus group together as friends described a shared institutional history where mandatory pap smears were enforced in the institution they lived in. One woman described the physicality and after-effects of the experience this way: I had to have [a pap smear] when I was a teenager. It was not a good experience and I swore I’d never go back again. My doctor tries to get me to go and has that disappointed look that I won’t do it, but I just can’t. He keeps advising me to talk to a nurse practitioner. I say I’ll do it one day. Just because it was a bad experience. I‘m not comfortable even with putting on a tampon if I have to. Women were clear in fore-fronting their histories and bodily experiences within healthcare encounters and outside facing prejudices and normative assumptions about their abilities and identities. Conversations about screening and other healthcare strategies allowed women to connect to one another and allowed us as focus group facilitators to provide answers to questions, and to follow-up after the groups by sending information about healthcare services and specific health questions. We will send short research summaries to all of the participants to ensure that the process respects their input and is not simply an extraction of information. Just as women described difficult experience, they also provided concrete details about how and why specific encounters worked for them: I had an excellent doctor… and we went through a lot of discussion about what would happen and she was even willing to do it at my home. She made sure that everything was done well and some very compassionate nurses came in to help out as well. They can make accommodations. Sometimes, it’s about trying to have the assertiveness to say what would help you – “How can you arrange for this? Where can you get it?” Women were active participants in their own healthcare, describing both facilitators in clinical settings and their own work and self-advocacy strategies. In addition, participants provided rich recommendations for how they saw cancer screening processes improving to accommodate their needs. Major recommendations within our preliminary findings: * More places with accessible exam tables and screening technology and on-site attendant care that are clearly publicized to the disability community. * Strategic health messaging with disability-positive images and specific information for women with disabilities to support self- advocacy in accessing screening * More personnel to address disability-related needs and anxieties prior to screening procedures * On-site health education sessions for women with disabilities on screening guidelines, procedures and body-specific strategies for optimal care. * Disability Training for Health Care Professionals and clinical staff at all levels on appropriate and clear communication, compassionate behaviour and best practices * Creating safe and positive spaces for women with disabilities from LGBTTQ communities, marginalized ethno-cultural communities, low socio-economic status and various ages * Patient-centred and integrated preventive cancer care that includes more options and less coordinating work for patients Knowledge Transfer – Our Next Project: The research team's objective, reinforced by the participants' clarity about the changes that would benefit women with disabilities, is to secure resources and opportunities both to pilot the learnings in one or more settings. We would like to develop a creative resource that would allow health care settings across the Province to learn from and implement these important improvements to access, screening and early detection. The recommendations proposed by focus group members participating in the research process are a form of specialized experiential knowledge that needs to be shared with healthcare providers and implemented. As a research group we would like the “knowledge transfer” phase of this project to be as participatory and user-driven as the data collection and analysis. In order to maximize the investment of time and finances in the earlier phases of the project, the research team is proposing a process of creative knowledge transfer for the next phase. We see the potential of involving research participants who are wheelchair users in the creative process of educating healthcare professionals about their needs in accessing cancer screening. The continuation of an inclusive, participatory action approach to knowledge transfer is necessary to ensure that these recommendations are implemented and have the impact and audience they deserve. The Gateways Project “Phase 1” was funded by the Canadian Cancer Society. Project partners included the Centre for Independent Living in Toronto, Mount Sinai Hospital, University of Toronto, Faculty of Nursing, St. Michael’s Hospital and Advisory Committee members Anne Johnston Health Station, Springtide Resources and the Ismaili Cancer Support Network. Legal Rights For People Who Use Service Animals by Karin McCaig, articling student; Reproduced from the ARCH Alert - 08 August 2008 Issue People who use service animals may be denied access that others take for granted such as being able to eat at a restaurant, go grocery shopping or live in the apartment of their choice. As a result, ARCH receives inquiries from people who use service animals about their legal rights. Service animals are animals trained to perform specific functions and services to assist someone with a disability. For example, they may alert people to sounds, guide around obstacles, retrieve dropped articles, provide physical support, or detect oncoming seizures. Service animals may be used by people with any form of disability. Because of the nature of the services these animals perform, they typically accompany the user throughout their daily activities. There are laws that address service animals and they do so in different ways. In general, there are legal protections which prevent the exclusion of or discrimination against people who use service animals. However, each law is different in its coverage - some laws apply only to dogs and some only protect people with certain disabilities. The form of proof needed to receive legal protection also varies. As a result, the rights of people who use service animals can be confusing and may go unenforced. It is important to know what action may be available to address discrimination and refusals of access connected with the use of a service animal. Protection For Guide Dog Users: Blind Persons' Rights Act People who are blind and rely on guide dogs have clear legal protections. The Blind Persons' Rights Act (the BPRA) protects a blind person accompanied by a guide dog from the denial of, or discrimination in the provision of, accommodation, services or facilities available in any place to which the public is customarily admitted. This includes restaurants, hotels and taxis, none of which may refuse service to a blind person with a guide dog. The BPRA also specifically prohibits discrimination in relation to a housing unit against someone who is blind and uses a guide dog. The BPRA defines a "guide dog" as a dog trained as a guide for a blind person. The Regulations to the BPRA provide a list of thirteen training facilities accepted under the Act, and allows for any other facility to be accepted by the Attorney General provided certain criteria are met. The Attorney General provides identification cards to people who are blind and their qualifying guide dogs. The card may be used as proof that the person is entitled to be accompanied by a guide dog. The back of the card sets out the key provisions of the BPRA, and the penalty for contravening it. An application form for an identification card can be obtained by calling the Ministry of the Attorney General's general inquiry line at 416-326-2220 (callers from outside of Toronto may call collect). Guide dog schools should also be able to provide an application form. It is an offence to deny access or discriminate against someone who is blind on the basis of having a guide dog, and the person who does so may be fined. Potential For Expanded Protection For Service Dog Users: Bill 70 Coverage of the Blind Persons' Rights Act is limited in that it does not address the rights of people with disabilities who are not blind, nor the rights of users of service animals other than guide dogs. There are many types of service dogs used by people with other disabilities in addition to guide dogs for people who are blind. These include hearing dogs, assistance dogs for people with mobility impairments, special skills dogs that detect oncoming seizures, and dogs trained to offer specific emotional support to psychiatric consumer/survivors. A Bill was recently introduced in the provincial legislature that aims to expand the BPRA's protections to all people with disabilities if they are dependent on a guide dog or service dog. Bill 70 An Act to Amend the Blind Persons' Rights Act, was introduced in the legislature on May 7, 2008, by MPP Gerry Martiniuk (Cambridge). The Bill would amend the BPRA so that in addition to guide dogs, "service dog" users would be protected from discrimination. Service dogs would include dogs trained to provide services for people with disabilities, by a qualified training facility, and not only guide dogs used by people who are blind. Service dogs would receive all the same rights as guide dogs currently receive under the BPRA, and would also be eligible for identification cards. More information and a PDF version of Bill 70 can be obtained on the Legislative Assembly of Ontario website at: http://www.ontla.on.ca/web/bills/bills_detail.do?locale=en&BillID=1975. Non-Dog Service Animals If passed, Bill 70 would represent a step forward in rights protection for service dog users. However, it would still not provide rights for users of service animals other than dogs, or animals not trained by a formal institution. Although dogs are by far the most common type of animal used to assist people with disabilities, many different types of animals can be used. For example, in the United States, miniature horses are growing in popularity as an alternative to guide dogs for people who are blind. Monkeys can be trained to perform a variety of simple tasks for people with mobility impairments, including opening doors, pouring drinks and brushing hair. Human Rights Protections For Service Animal Users Human rights legislation does protect people with disabilities who rely on all types of service animals. However, this legislation does not specifically address the scope of protection provided. The Ontario Human Rights Code offers broad protections to service animal users. The Code provides that people with disabilities have a right to be free from discrimination because of their disabilities. More specifically, individuals and organizations have a legal obligation not to refuse entry or access to a building, premise, good or service because of a person's disability. Individuals and organizations are required to accommodate people with disabilities up to the point of undue hardship. If a person is accompanied by a service animal for reasons related to their disability, to deny access to the service animal would be discrimination on the basis of disability. Case law shows that the service animal user will have to prove that they have a disability within the meaning of the Code, and that the animal is necessary for reasons related to the disability. This typically requires some form of medical documentation. The definition of disability in the Code includes physical reliance on a guide dog or other animal. Service Animal Users And Air, Train And Ferry Travel People who rely on service animals are given specific rights relating to travel. Based on the Air Transportation Regulations, an airplane must accept a service animal for carriage at no extra charge. There are three requirements for acceptance on board the aircraft: the service animal must be required by a person for assistance; it must be certified, in writing, as having been trained to assist a person by a professional service animal institution; and it must be properly harnessed. The animal does not have to be required for tasks during the flight, but rather must perform tasks or services for the person on a day-to-day basis. More information about the Air Transportation Regulations can be found in the publication "Air Travel Accessibility Regulations - Summary," available online at http://www.cta-otc.gc.ca/access/regs/air_e.html. The Canadian Transportation Agency's Codes of Practice for rail cars and ferries also contain provisions relating to service animals. These Codes of Practice can be accessed online at http://www.ctaotc.gc.ca/access/codes/index_e.html. Health And Safety Laws And Service Animals Members of the public may attempt to deny access to premises on a mistaken belief about health and safety laws. They may be unaware that there are health and safety laws that contain specific exceptions to allow service animals in areas where animals would normally not be allowed. `The Health Protection and Promotion Act provides a specific exception for service dogs in the Regulations regarding food premises, which otherwise exclude animals in places where food is served, offered for sale or sold. This means that service dogs are allowed into restaurants and food stores. Unfortunately, this exception is limited to dogs and does not apply to other kinds of service animals. Similarly, the Food Safety and Quality Regulations exclude animals in any area of a meat plant, but makes an exception for service dogs in certain areas of meat plants. For example, if a meat processing factory had a store on the premises that sold their products, service dogs would be allowed in the store. This law is also limited to service dogs, rather than applying to all service animals. Looking Forward: Protection under the Accessibility for Ontarians with Disabilities Act, 2005 The rights of service animal users in Ontario will be reinforced by the introduction of the Accessibility Standards for Customer Service (the "Standards") under the Accessibility for Ontarians with Disabilities Act, 2005. The Standards will apply to public sector organizations by January 1, 2010, and private businesses, non- profit organizations and other service providers by January 1, 2012. The Standards require organizations to allow a person with a disability to be accompanied by a guide dog or service animal in their premises that the public has access to. If service animals are excluded from the premises by another law, the organization must ensure that alternate means are available to enable a service animal user to access their goods or services. The Standards will apply to guide dogs as defined in the BPRA and service animals. An animal is a service animal if the person provides a letter from a physician or nurse confirming that he/she requires the animal for reasons related to a disability. However, no such letter will be necessary if it is "readily apparent" that the animal is used by the person for reasons related to a disability. For instance, the animal may be wearing a harness that identifies it as a service animal, it may have an identification card, or it may be engaged in service activities such as opening doors or pulling a wheelchair. Conclusion Although there is some legal protection for service animal users, applicable laws limit the scope of protection. If Bill 70 is successful in expanding the Blind Persons' Rights Act to all service dogs, it will be one step towards strengthening the laws protecting service animal users. In the meantime, people who rely on service animals should know that they already have important legal rights in relation to their animals. Although the existing laws may be confusing, they do protect service animal users and can be asserted when access is denied or discriminatory treatment has occurred. Our First Toonie Movie Night We finally held our first Toonie Movie Night on Wednesday October 1st, 2008. We watched “The Holiday”, starring Kate Winslet, Jude Law, Cameron Diaz and Jack Black. It was a fun evening with popcorn and good conversation. Due to the fact that CILT will soon be moving (notices will be mailed out shortly), the date for the next Toonie Movie Night has not been set and won’t be until CILT is settled in their new home. Please be patient, and you will be notified as soon as the next movie night has been scheduled.