CILT's Peer Links Volume 5 Issue 4 July 2004 The Diner's Club takes a Break for the Summer The Diner's Club is taking a break for the summer and will begin meeting again in September. Anyone who was planning to host an event between June 2004 and September 2004 should contact Nancy at (416) 599-2458, extension 27 as soon as possible in order to set new dates for these events. Enjoy the summer everyone! Breast Health Awareness Workshop At the end of March, CILT's peer support program hosted a workshop on Breast Health Awareness for women with disabilities. It was a great success and generated a lot of discussion for those who attended. Our guest speakers were fabulous and made what would have otherwise been a very difficult topic to discuss, very interesting and interactive. Thank you to Linda Muraca from the Breast Health Program at Mount Sinai Hospital and Eva Vanek from Cancer Care Ontario. Breast cancer is the most common type of cancer among women. It accounts one of every three cancer diagnoses in women. However, the best chance a woman has to fight breast cancer is to find it and treat it early. But there are some things you can do to prevent the onset of disease. The early detection of breast cancer can be key to survival. Breast self-exams, clinical breast exams, and screening mammography are essential in helping to detect breast cancer in an early stage. Frequent and regular physical exercise, at work and at leisure, has been shown in some studies to decrease breast cancer risk; however, this effect has not been firmly established Women known to be at increased risk may benefit from earlier initiation of early detection testing and/or the addition of breast ultrasound or MRI It is very useful to find out the risk factors of breast cancer, that consist of uncontrollable factors and controllable factors: Uncontrollable risk factors * Being female * Getting older * Family history of breast cancer * Biopsy=pre-cancerous condition * First period before age 12 * Menopause after age 55 * Mutation in BRCA1 Or BRCA2 Controllable risk factors * More than one alcoholic drink per day * Obesity after menopause * Weight gain as an adult * Recent use of oral contraceptives (5 years or longer) * Never having children * First child after 30 * Current/recent use of hormone replacement therapy If you fall in the high-risk category, talk to your health care professional about this. Take these steps: * At age 40, begin having annual screening mammograms * Women in their 20s and 30s should have a health care professional examine your breasts every three years, and annually thereafter * Be familiar with how your breasts feel and what is "normal" for you; * examine your breasts periodically, and see a health care professional if you feel or see any changes that don't go away after one menstrual cycle. * When conducting a breast self examination, remember that after you cover the whole area of your breast, to check under your arm and up to your collarbone too. * Eat a healthy diet rich in fruits and vegetables, maintain your ideal body weight, exercise regularly, and drink in moderation, if at all * Exercise regularly in case this is to your advantage. * Women known to be at increased risk may benefit from earlier initiation of early detection testing and/or the addition of breast ultrasound or MRI. To make sure you get the best possible mammogram, look for the FDA (Food and drug administration) certificate, which should be prominently displayed at the facility. Facilities not meeting FDA requirements may not lawfully perform mammography. *** If you were unable to attend this workshop but would like a copy of the handouts that were provided, please call Nancy at (416) 599-2458, extension 27. Feature Article Underestimating the Significance of Peer Support Peer Support is: * Listening to others. * Sharing thoughts; exploring ideas. * Looking at options; choices; empowering others to make their own decisions. * Respecting confidentiality. * Setting guidelines and expectations. * Knowing when you can't help a person; admitting that you don't have all the answers. * Referring someone to other community resources when appropriate. Peer Support is not: * Professional counseling or therapy. * Giving advice. * Solving other people's problems for them. * Discussing medical information. * Trying to become the "expert." A Peer is: * Someone who has directly experienced a disability. * Someone who can share their personal stories with others in similar situations. * Someone who understands and can relate to the feelings and challenges faced by others in similar situations. Skills and Attributes Required: * Ability to listen and not advise. * Willing to share insights and experiences about living with a disability. * Empathy - the ability to put yourself in someone else's shoes. * Ability to recognize personal limitations and ask for help when required. * Unconditional acceptance. * Ability to let the individual make his/her own decisions without passing judgment. * The confidence to share your experiences honestly. Good Communication involves... * Active listening * Strong body language * Empathic listening * Reflection How to Listen Empathetically: * Appropriate tone (avoid speaking in monotone) * Appropriate pitch * Appropriate choice of words * Body language (not fidgeting, sitting up straight and not slouching) * Maintain eye contact * Watch your facial expressions (misinterpretations can easily be made by observing facial expressions) * Paraphrase (shows the other person that you are listening and that you do understand what they are saying) Anne Johnston Health Station's Peer Support Program The Anne Johnston Health Station is dedicated to enhancing the health and well- being of individuals and promoting health communities. The Health Station serves seniors and youth who live or work in North Toronto and people with mobility disabilities who live in the city of Toronto. What is the Peer Support Program? The Peer Support Program brings together individuals with mobility disabilities to share and support each other on an individual basis and group settings. What is a Peer Support Volunteer? Peer Support volunteers are trained to provide individual support, assist with support circles, provide individual information referrals and limited accompaniment to services and appointments within the community upon request. Possible issues that may be addressed include: * Body image * Sexuality * Personal safety Programs that are offered: * Augmentative Assistive Communication (AAC) - A peer support circle for individuals who identify with a communication issue and/or use a communication device that aims to reduce isolation. Participants meet twice a month and receive support through discussions, information sharing, organized outings, socializing and drop-ins. * Grief and Loss - A six week program that addresses issues of grief and loss for individuals with mobility disabilities. Participants learn to identify the grief process and develop coping strategies in a supportive environment. * Peer Matching - Individuals are matched with a peer volunteer for a time limited period to work on an issue with which the client identifies. The peer works with a client to set goals, develop strategies and support them through their process. An agreement is signed by the volunteer and client outlining the parameters of their peer matching relationship. * Individual Peer Support - Peer volunteers offer support and information to Anne Johnston Health Station clients waiting for services. * Men's Circle - For men with disabilities. Information and support on various topics. Two to four workshops are offered per year. * Women's Disabled Action Awareness Group - An action awareness group for women with mobility disabilities and women who support them. Issues for women with disabilities are addressed. Through events, workshops, community activities and increased participation in the community D.O.O.R. 2 Adulthood [Disability Ontario Online Resources for transition to adulthood] A New Website! D.O.O.R. 2 Adulthood is a new website being developed for youth with disabilities that live in the province of Ontario. It is about making the transition to adult life as a person with a disability. People with disabilities, parents and service providers are joining together to develop this online resource! www.door2adulthood.com How you can help! * Visit the website regularly! * Read the articles. * Join the e-discussion group. * Search the database. * Complete the on-line surveys. * Tell us what you think. For more information about this exciting new initiative, email to transitionontario@ablelink.org or call (416) 425-6220, extension 3207. Open the DOOR to Adulthood! Transitions Group Launches Online Prototype for Review The Disability Ontario Online Resources for Transitions to Adulthood has introduced a new and comprehensive online resource for consumers preparing for life in the Independent Living community. The prototype of the D.O.O.R. 2 Adulthood Web site, www.door2adulthood.com, was launched April 30 at the Transitions Conference 2 in Toronto. According to D.O.O.R. 2 Adulthood, this prototype is an example of how the different parts of a Web site could appear when the actual website is complete. Feedback from consumers, families and service providers is welcomed. Here's how you can help... * Visit the Web site often to watch for changes! * Complete the online surveys! * Join the e-discussion group! * Tell people about the Web site! * Tell them what you think! If you are a service provider, you can email the group at transitionontario@ablelink.org. Canada-Wide Accessibility for Post Secondary Students "Committed to increasing accessibility & inclusion for post secondary students with disabilities." Breaking Down Barriers 2004 2nd Annual Conference CONFERENCE THEME: * Stopping exclusion * Increasing accessibility Strengthening self-advocacy DATE & LOCATION: October 2nd and 3rd 2004 Marriott Hotel (Eaton Centre Location - Toronto) REGISTRATION FEE: $25 - Students $100 - Other *** NOTE: Registration begins July 8th *** For the latest information visit www.canwapss.com or email to accessibiity@canwapss.com. NEW MacMillan Site Address The address for the MacMillan site has changed from 350 Rumsey Road to 150 Kilgour Road, effective April 1, 2004. NEW: RUMSEY ROAD GATE To meet City of Toronto requirements, a gate has been installed at the north end of Rumsey Road. This gate reduces thorough traffic and increases road safety in our community. Drivers can no longer use Rumsey Road to get to or from our MacMillan site. NEW: Driving to the MacMillan Site Drivers must use Kilgour Road to get to or from the MacMillan site. New traffic lights operating at the intersection of Bayview Avenue and Kilgour Road make it easier and safer for vehicles coming to or from the MacMillan site. NEW Parking rates As of April 1, 2004, Bloorview MacMillan's parking rates for clients, families and all visitors are: MacMillan site, metered parking: $1.00 per half-hour $5.00 daily maximum $30.00 for a one-month parking pass Wheel-Trans introduces... NEW ZONE SERVICES Door-to-door service by dedicated Wheel-Trans buses supplemented by accessible and sedan taxis for trips with both pickups and drop-offs within the zone. Are you in the Zone? NORTHWEST/YORK UNIVERSITY ZONE SERVICE A new Zone Service for Wheel-Trans Registrants in the Northwest/York University area will be introduced in April 26, 2004. Hours of Service: 8:00 a.m. to 5:00 p.m., Monday to Friday only Benefits of Zone Service Zone Service offers improved flexibility to handle increased demand while providing more spontaneous rides to our customers. A 30 minute pickup window will be provided at the time of booking with no need to call back to confirm a fixed time. When to be Ready You will be given a 30 minute pickup window. For example, between 8:00 a.m. to 8:30 a.m. Be ready and waiting for your ride at the pickup point 5 minutes before your 30 minute pickup window. For example, at 7:55 for a 8:00 to 8:30 pickup window. Operators will wait five minutes past the vehicle arrival time before leaving for their next scheduled pickup. Call the Reservations Office at 416-393-4222 if your vehicle has not arrived within the 30 minute window. Key locations served: * York University * York Finch General Hospital * Black Creek Pioneer Village * META Centre * Northwoods Community Centre * Humber/Sheppard Community Centre * Jane-Finch Mall * Jane and Sheppard Plaza NORTHEAST/DON MILLS ZONE SERVICE A new Zone Service for Wheel-Trans Registrants in the Northeast/Don Mills area will be introduced in April 26, 2004. Hours of Service: 8:30 a.m. to 5:30 p.m. Monday to Friday only. Key locations served: * North York General Hospital * Sheppard Subway Line * Aphasia Centre * 1333 Sheppard East (Medical Ctre) * Gooderham Public School * Victoria Terrace * Harmony Place * Edwards Gardens * Ikea ROSEDALE/SOUTH ZONE SERVICE A new Zone Service for Wheel-Trans Registrants in the Rosedale/South area will be introduced in April 26,2004. Hours of Service: 8:30 a.m. TO 5:30 p.m. Monday to Friday only. Regular Wheel-Trans door to door service will apply for weekends, holidays, and trips outside all of the Zone areas. Ontario's Bill of Rights for People Who Live in Long TermCare Facilities Publication written by Susan Chernin, Joan Jenkinson, and Taivi Lobu. "Every Resident" Bill of Rights for People Who Live in Ontario Long Term Care Facilities"" March 2004. Every resident in Ontario deserves to know what their rights are as a citizen. If you live in a long term care facility, it's even more important that you understand your rights. A long term care facility is a place where you can live and receive care services such as nursing and personal assistance. In Ontario, there are three types of long term care facilities: * nursing homes * municipal homes for the aged; and * charitable homes for the aged Three pieces of legislation apply to these facilities: * the Nursing Homes Act for nursing homes; * the Homes for the Aged and Rest Homes Act for the aged; and * the Charitable Institutions Act for charitable homes for the aged. Each piece of legislation includes a residents' Bill of Rights. This Bill of Rights is the law. The Bill of Rights for the residents of Ontario nursing homes became law in 1987. In 1993, it became law for the residents of Ontario municipal and charitable homes for the aged. The Ontario government passed this Bill of Rights to make sure that long term care facilities are homes for the people who live in them. Every long term care facility must post the Bill of Rights. It tells staff at the care facility that they must respect your rights while you live there. It tells them to remember that you are in your home. The Bill of Rights reminds everyone - residents, staff, friends, family, and neighbours-that residents of long term care facilities are valued members of the community. EVERY RESIDENT: (1) "has the right to be treated with courtesy and respect and in a way that fully recognizes the resident's dignity and individuality, and to be free from mental and physical abuse." In other words... You have the right to be treated with respect. No one is allowed to abuse you mentally or physically. Mental abuse is when someone humiliates, insults, frightens, threatens, or ignores you, or when someone treats you like a child. Physical abuse is when someone slaps, pushes, handles you roughly, beats, or sexually molests you. The staff at your long term care facility must be polite to you. They must recognize your dignity and your rights as a person. (2) "has the right to be properly sheltered, fed, clothed, groomed, and cared for in a manner consistent with his or her needs." In other words... You have the right to receive proper care. Your special needs should be looked after by the staff at your care facility. Your care should include: * a proper place to live; * enough good food to eat; * clean clothes to wear; and * help with looking neat, clean, and tidy. (3) "has the right to be told who is responsible for and who is providing the resident's direct care." In other words... You have the right to know who is looking after you and which people are responsible for your medical and personal care such as: * doctors * the director of nursing * registered nurses * registered practical nurses * health care aides * extra staff for nights and/or weekends, and * volunteers. (4) "has the right to be afforded privacy in treatment and in caring for his or her personal needs." In other words... You have the right to privacy. You should feel that you are being treated with respect when are given medical care. For example, when your doctor is treating you, the privacy screen or curtain around your bed should be closed. You should also feel that your privacy is being respected when your personal needs are being looked after. For example, when you take a bath or use the washroom, there should be a door you can close if you want to. (5) "has the right to keep in his or her room and display personal possessions, pictures, and furnishings in keeping with safety requirements and other residents' rights." In other words... You have the right to keep personal things in your room. Remember, this is your home. As in any home, it is important to have personal things around you to make you feel comfortable or to remind you of special people and special times. Some of the personal things you might want to have in your room are your favourite quilt, cushions, books or clothes, You may have pictures of your children, " grandchildren, or other special pictures. You may also have your own furniture, a special lamp, a radio, or a television. Talk to staff about what you would like to have in your room. Your personal belongings should not get in the way of safety or the rights of other people who live in your care facility. (6a) "has the right to be informed of his or her medical condition, treatment, and proposed course of treatment." In other words... You have the right to understand your treatment. Your doctor or someone else in charge of your care should tell you what kind of health care you need, what treatment you are getting and what treatment is being planned for you. (6b) "has the right to give or refuse consent to treatment, including medication, in accordance with the law, and to be informed of the consequences of giving or refusing consent." In other words... If your doctor suggests a way to help, you can decide to: * do what the doctor says; * not take the doctor's advice; or * talk to another doctor or qualified person. You must be told what will happen to you if you agree to take a treatment of drugs and what will happen if you do not. You can make your own decisions if you are competent. You are competent if you understand what you are doing and you understand the consequences of your actions. You can have someone help you make decisions if you want. You have the right to be involved in decisions about your treatment. (6c) "has the right to have the opportunity to participate fully in making any decision and obtaining an independent medical opinion concerning any aspect of his or her care, including any decision concerning his or her admission, discharge, or transfer to or from a long term care facility." In other words... You have the right to talk to someone outside your long term care facility to get a second opinion about the kind of care you need. You have the right to have family, a friend, or an advocate with you when you meet with doctors and nurses. This person can help you decide what to do. You have the right to be involved in any decision that could change where you live, such as a discharge or transfer from your long term care facility. If you do not agree with the decision you can get a second opinion. (6d) "has the right to have his or her medical records kept confidential in accordance with the law." In other words... The law says your medical records are private. Only the people responsible for your care can see your medical files, unless you give your permission to someone else. Your records must be kept in a place where others cannot see them. (7) "has the right to receive reactivation and assistance towards independence consistent with his or her requirements." In other words... You have the right to get help to become as independent as you can. You have the right to do things such as exercises, games, handicrafts, and other programs and activities available in your long term care facility that can improve or help you keep your independence. (8) "who is being considered for restraints has the right to be fully informed about the procedures and the consequences of receiving or refusing them." In other words... You have the right to get information about restraints. A restraint is anything that limits your movement. Different kinds of restraints are: * medications or drugs; * wheelchairs or lap belts; * mittens - so you do not scratch yourself; and * bed rails - so you do not fall out of bed. Sometimes you may need a restraint for your safety. Restraints should not hurt you or make you feel uncomfortable. Your doctor has to tell you if he or she is planning to use a restraint on you. Your doctor must explain the steps. You must be told what will happen to you if you agree to the restraint and what will happen if you do not. If you are competent, no one can make you use a restraint if you do not agree. You may want a friend, family member, or advocate to help you decide. (9) "has the right to communicate in confidence, to receive visitors of his or her choice, and to consult in private with any person without interference." In other words... You have the right to meet and talk with people. Because this is your home, you can invite your family, friends, or anyone else to visit you. If you want to speak to someone alone, you have a right to do so. Tell the staff at your long term care facility if you don't have enough privacy in your room. They should make special arrangements if you give them proper notice. (10) "whose death is likely to be imminent has the right to have members of the resident's family present twenty-four hours per day." In other words... You have the right to have your family with you when your health is critical. Regular visiting hours will not apply to your family at this important time. They can be with you all day and night, if you want them there. (11) "has the right to designate a person to receive information concerning any transfer or emergency hospitalization of the resident, and where a person is so designated to have that person so informed forthwith." In other words... You can choose a person who your long term care facility must call if you are transferred to another home or sent to a hospital. (12) "has the right to exercise the rights of a citizen and to raise concerns or recommend changes in policies and services on behalf of himself or herself or others to the residents' council, long term care facility staff, government officials, or any other person inside or outside the long term care facility, without fear of restraint, interference, coercion, discrimination or reprisal." In other words... You have the right to speak freely. You keep all your rights as a citizen. You can talk about things that concern you and suggest changes to your care facility's rules and services. You can do this for yourself and for others. There are many people who make decisions that affect of help you. You may want to give them suggestions or tell them your concerns. Some of these people are members of the residents' council, the care facility staff, and government officials. NO ONE CAN PUNISH YOU FOR SPEAKING OUT. (13) "has the right to form friendships, to enjoy relationships, and to participate in the residents' council." In other words... You have the right to make friends and to be with them. This can be an important part of your life at the long term care facility. You have the right to participate in a residents' council. The residents' council is a good place to meet people and to get involved in things that affect you. (14) "has the right to meet privately with his or her spouse or same-sex partner in a room that assures privacy; and where both spouses or same- sex partners are residents in the same long term facility, they have a right to share a room according to their wishes." In other words... You have the right to be alone with your partner. It does not matter whether you are married or not, and it does not matter whether your partner is of the same or opposite sex. If your partner comes to visit, you may want some time alone. The long term care facility should have a place for you to meet in private. If you live in the same facility as your partner, you should be allowed to share a room if they have an appropriate one available. You may have to wait for the right kind of room and it may cost more. (15) "has the right to pursue social, cultural, religious, and other interests to develop his or her potential and to be given reasonable provisions by the long term care facility to accommodate their pursuits." In other words... You have the right to do things that interest you. You do not stop being the person you were before you moved into the long term care facility. You may want to continue your hobbies, to follow your religion, and to do other activities. The care facility should make it possible for you to do these things, within reason. (16) "has the right to be informed in writing of any law, rule, or policy affecting the operation of the long term care facility and of the procedures for initiating complaints." In other words... You must be told about increases in your care facility's basic fee. You must also be told about increases for extra services such as ironing, mending, and hairdressing. If these services become more expensive, you must be told in writing, and you must give your response in writing. All policies in relation to vacations, visiting hours, discharge, and the use of restraints should be explained to you. Most policies set out in the Nursing Homes Act, the Homes for the Aged and Rest Homes Act, and the Charitable Institutions Act. Your care facility cannot have a policy that says something different from what is in the legislation. (17) "has the right to manage his or her own financial affairs where the resident is able to do so, and where the resident's financial affairs are managed by the long term care facility, to receive a quarterly accounting of any transactions undertaken on his or her behalf and to be assured that the resident's property is managed solely on the resident's behalf." In other words... You have the right to manage your own money while you are in the care facility. There are three ways you can do this: * You can do it yourself if you are able. * Someone else can take care of your business. This can be a friend or someone else you choose from outside your care facility. * The care facility can keep your money for you in a special account called a trust account. You must get regular statements that show what has been done with your money. Remember, it is your money! (18) "has the right to live in a safe and clean environment." In other words... You have the right to have a clean and safe place to live in. The long term care facility must be safe and everything should work properly. Smoke alarms must work, fire exits must be clearly marked, and stairways must be clear. The building must be clean. Garbage should be taken out regularly. There should be no bad smells, and the building must have a good air supply. (19) "has the right to be given access to protected areas outside the long term care facility in order to enjoy outdoor activity, unless the physical setting makes this impossible." In other words... You have the right to go outside as long as it is safe for you. You should be able to enjoy nature, fresh air, and outside activities whenever possible. Where to Get Help Advocacy Centre for the Elderly 2 Carlton Street, Suite 701 Toronto, Ontario M5B 1J3 Tel: (416) 598-2656 Fax: (416) 598-7925 Web site: www.advocacycentreelderly.org Time for a Picnic! The Adult Inter-Active for People with Disabilities is having a picnic, and all group members are invited! When: Thursday, August 12 Where: High Park (Area 2) (Wheel-Trans drop off is: Grenadier Restaurant West and Centre Road) Time: 1-3 PM Cost: $2.00 (Light refreshments will be served) Please RSVP to Nancy at 416-599-2458 x27 or by TTY at 416-599-5077. The Adult Inter-Active Committee offers bi-monthly social events for adults with disabilities to increase opportunities to meet people, learn new skills, have fun, and get caught up with what's happening in the community. A.I. believes that each individual is responsible for themselves while at A.I. events. The Adult Inter-Active Committee is supported by the following organizations: * Centre for Independent Living in Toronto * Anne Johnston Health Station * Tobias House Resource Centre * Ontario March of Dimes * Birchmount Bluffs Neighbourhood Centre * and Scadding Court Community Centre. CILT's Peer Support Program in partnership with Education Wife Assault Present... Taking Care of Ourselves: A Workshop for Women With Disabilities This workshop will focus on: * What is a healthy relationship? * What is an unhealthy relationship? * Setting boundaries and taking charge Saturday, August 14, from 1-4 PM Centre for Independent Living in Toronto 205 Richmond Street West, Suite 605 Please RSVP to Nancy at (416) 599-2458 or by TTY at (416) 599-5077 by "no later than" August 6. Attendant services will be provided. Other accommodations provided upon request. Supported by a Toronto Community Service Grant, United Way and Human Resources Development Canada Peer Links is a quarterly publication of the Peer Support Program. To become a member of the Peer Support Program, or to receive Peer Links on a regular basis, please contact Nancy at: Centre for Independent Living in Toronto (CILT) Inc. 205 Richmond Street West, Suite 605 Toronto, Ontario M5V 1V3 Tel: (416) 599-2458 x27 Fax: (416) 599-3555 TTY: (416) 599-5077 Email: peervolunteer@cilt.ca Web site: www.cilt.ca Peer Links is also available on audiotape. Articles on products, agencies or services are for information only and are not meant as endorsements. The opinions expressed in this newsletter are those of the contributors and may not reflect the views of CILT. Supported by a Toronto Community Service Grant, United Way and Human Resources Development Canada (c) Centre for Independent Living in Toronto (CILT) Inc. 1