The navCare Resource List The following is a selection of recommended telephone numbers and websites. See The navCare Textbook for a list of resource books and CD/DVDs. Most people involved in navigating systems, negotiating services and mediating problems as they arise do not need to go through all of these websites. However, advisors who want to be increasingly more helpful to their clients need to create a learning plan that involves updating their own resources while expanding their knowledge and skills. The following are just some of the places to look for materials that can help advisors do just that. When checking any source for healthcare information, for example, expect to find information that might be unsettling. The information may tell you things you didn’t expect or didn’t want to know. It may be written for a professional audience rather than for individuals and their families. Always keep in mind that website information may not be specific enough to your situation so do not take general statistics and apply them to your circumstances. Check the validity of any information you get from other resources, including the internet. See who sponsors the site and whether they present only information that supports a sponsor’s products or services. See who endorses the work produced on a website. Check for ‘critics of’ any website using your browser to search for those with an alternative view. Again check the validity of their work. Some of the books in this reference list may have more recent, up-dated editions. If a particular author interests you, check the library for their other books. Always check with your professional (e.g., doctor, nurse, lawyer, accountant) before acting on information from books or the internet. Top Picks For emergencies, call 911. For For immediate information help, call Telehealth in Ontario at: 1.866.797.0000 where a nurse can provide you immediate information. They can help you decide whether you need to go to the Emergency Department of your nearest hospital, call you physician within 24 hours or call them back after 24-48 hours to report on any changes in your symptoms. Your own region may have a similar service. Call 211 to speak with a representative who will help you find one or more of the following services nearest to you: health care, financial and social assistance, housing and utility help, children and youth services, food assistance and meal programs, seniors services, home care, government assistance, parenting and family programs, disability support programs, newcomer services, and volunteer organizations. You can also go to their website: www.211.ca. Call “Ask Elisabeth” at 1.855.275.3549, a service of Saint Elizabeth Health Care where a nurse can answer more general health questions. The Internet The following internet links may be helpful to those of you interested in more information. NOTE - this list will be updated on our website and it will be easier to click onto the links below from the website: www.navcare.org. If you live outside an urban centre, dial your area code before 555-1212 to get the branch office in the city nearest you. If you have access to the internet, use your browser (e.g, Google, Canada411.ca) to help you locate services nearest to you. A note of caution: Thousands of web sites offer healthcare information. The information on some sites may not be accurate or current. Check to see who produces the website, their qualifications, and their credibility before assuming their information is correct. Even websites listed here should be verified by you personally. Health information and other websites still have errors so for the most important information, get at least 3 sources (like journalists do) to verify the information. Remember, websites change over time and their content may, or may not, be current, accurate or helpful. With the use of smart phones growing dramatically around the world, it is also worth checking for health care, financial, legal and other “apps” (applications) you can download on your phones. These change by day, so test out various free ones before investing in any that cost money. Within a few years, apps will be used for many aspects of health care including self-diagnosis. There are also videos of practical caregiving skills. These are updated regularly by various organizations such as www.Videocaregiving.org, www.virtualhospice.ca, www.youtube.com/user/cvhcvcsp. Use your browser and type in: caregiving “how to” videos to start searching for the most recent and practical video links. The resources are divided by: Health Information Sites Consumer Organizations Health Organizations Governments Health-Related Media General Medical/Health Information Legal Websites Health Information Sites Canadian Centre on Substance Abuse www.ccsa.ca A national effort to reduce the harms associated with alcohol and other drugs and substances. Canadian Healthcare Network www.canadianhealthcarenetwork.ca A general health information site with links to many other health related sites. Canadian Institute for Health Information (CIHI) www.cihi.ca Since 1994 the CIHI has helped improve the depth and breadth of Canada’s health data including building and maintaining 27 critical pan-Canadian databases that enable jurisdictions to compare data. Canadian Mental Health Association (CMHA) www.cmha.ca Authoritative site on mental health concerns. The Canadian Pain Society www.canadianpainsociety.ca In part, this society is to inform the general public of the results and implications of current research in the area of pain. The Canadian Family Physician (official journal of The College of Family Physicians of Canada) - PAIN article http://www.cfp.ca/content/56/6/514.full Specific article looking at explaining and expanding on the World Health Organization’s analgesic ladder. CCAC = Community Care Access Centres in Ontario coordinate homecare services to patients. Wherever you live in Ontario, it is easy to find the in-home, community-based healthcare services – for yourself or for a loved one. Search www.thehealthline.ca Call 310-CCAC (310-2222) Centre for Addiction and Mental Health (CAMH) www.camh.ca Leading center for mental health research and treatment in Toronto. ConnexOntario http://www.connexontario.ca Provides free and confidential health services information for people experiencing problems with alcohol and drugs, mental illness, or gambling. Dr. Koop’s Community www.drkoop.com An interactive health site with daily updates and news. Drugs.com www.drugs.com Senior editorial board members are pharmacists in Australia and New Zealand but their goal is to be the internet’s most trusted resource for independent, objective, comprehensive and up-to-date drug and related health information for both consumers and healthcare professionals. Verify facts with your own pharmacists. Drug Watch www.drugwatch.com is a comprehensive resource about dangerous side-effects and complications from common prescribed drugs and oft-used medical devices. Embarrassing Problems www.embarrassingproblems.com Operated by Health Press Ltd in the United Kingdom which publishes medical books, this free site offers information on health problems people find difficult to discuss. Everyday Health www.everydayhealth.com A popular online portal for healthcare information. Evidence Exchange Network for Mental Health and Addictions http://eenet.ca Evidence Exchange Network (EENet) is a mental health and addictions knowledge exchange network that connects stakeholders across Ontario. The EENet community includes researchers, clinicians, decision-makers, service providers, system planners, policymakers, persons with lived experience, and families. Family Navigator http://familynavigator.ca FamilyNavigator.ca connects Canadian Forces families with local resources, tools, and information to support them with their unique circumstances when it comes to: relocation, supporting a child with special needs, person with a disability, an elderly parent who requires extra support, or a Canadian Forces Member with an operational injury; finding childcare; dealing with military lifestyle challenges; coping with a diagnosis of a health concern; and finding direction when you're not sure who to call. Finding Health Care www.findinghealthcare.ca This website helps Canadians access the health care they need – inside or outside of Medicare. This website is completely independent. It has no obligations to any entity or organization, public or private. Health Canada’s Information Site www.hc-sc.gc.ca The government’s official site with many links to other reputable sites. Health Charities Coalition of Canada www.healthcharities.ca A membership coalition of many of the leading health charities in Canada. The site has resources on understanding and navigating health care systems. Health Gateway www.healthgateway.ca A website to meet the health information and support needs of people living with complex chronic illnesses and episodic disabilities and their loved ones in Canada. Healthy Canadians www.healthycanadians.gc.ca Another extensive government of Canada website with health information. Look Good, Feel Better - Helping Women with Cancer www.lgfb.ca Look Good Feel Better was created from a belief that if a woman with cancer can be helped to look good, chances are she’ll feel better, her spirits will be lifted and she’ll be empowered to face her illness with greater confidence. MayoClinic.com www.mayoclinic.com An outstanding site for general health information. MedicineNet.com www.medicinenet.com From a team of more than 70 US board-certified physicians and others, this site provides solid information as part of the WebMD network. MedlinePlus http://medlineplus.gov Site by the U.S. National Library of Medicine (world’s largest medical library) and the National Institutes of Health. Extensive site used by health professionals and caregivers alike. Mental Health Commission of Canada www.mentalhealthcommission.ca The Mental Health Commission of Canada (MHCC) is a catalyst for improving the mental health system and changing the attitudes and behaviours of Canadians around mental health issues. Mental Health Guidebook to Navigating Services http://www.schizophrenia.on.ca/getmedia/181c190c-bbef-427b-bad7-ec288ce3c8e6/FINAL_mental_health_guide_web_version.pdf.aspx A PDF online copy of the Schizophrenia Society of Ontario’s ‘how-to’ guide on navigating services. Merck Manual www.merckmanuals.com and www.merckmedicus.com Professional and consumer manuals on medical issues, reports and articles of unbiased health information -- updated regularly. National Institutes of Health http://health.nih.gov Health topics alphabetically organized with links to other accredited resources. This is a very common source of information for professionals in the field and consumers alike. National Women’s Health Resource Center www.healthywomen.org Non-profit group with advice specific to women’s health in collaboration with leading health professionals but independent from external parties. Open Medicine www.openmedicine.ca The mission of Open Medicine is to facilitate the equitable, global dissemination of high-quality health research; to promote international dialogue and collaboration on health issues; to improve clinical practice; and to expand and deepen the understanding of health and health care. Pallium Canada www.pallium.ca Pallium Canada is a national education community-of-practice (CoP) created in 2009. Its resources include the Pallium Palliative Pocketbook, a peer-reviewed resource guide for clinical practitioners, and the Learning Essential Approaches to Palliative and End of Life Care (LEAP) program, the only Canada-wide, CFPC accredited palliative care course aimed at inter-professional palliative care education, and includes subject-specific teaching and learning videos. Public Health Agency of Canada www.phac-aspc.gc.ca/chn-rcs/index-eng.php Comprehensive review of such public health topics as active living, health promotion, healthy eating, injury prevention, living with disabilities, mental health, sexuality, travel, and workplace health. PubMed www.ncbi.nlm.nih.gov The National Center for Biotechnology Medicine is a vast library for healthcare professionals. Scroll down home page to the PubMed Central tab which is the search engine for virtually every professional journal article ever written about a condition, disease and drug. Quack Watch www.quackwatch.org Operated by Stephen Barrett, MD Quackwatch is an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct. Its primary focus is on quackery-related information that is difficult or impossible to get elsewhere. Founded by Dr. Stephen Barrett in 1969 as the Lehigh Valley Committee Against Health Fraud (Allentown, Pennsylvania), it was incorporated in 1970. In 1997, it assumed its current name and began developing a worldwide network of volunteers and expert advisors. Rxisk: Making Medicines Safer for All of Us www.rxisk.org RxISK is the first free, independent website where patients, doctors, and pharmacists can research prescription drugs and easily report a drug side effect — identifying problems and possible solutions earlier than is currently happening. The RxISK team includes highly recognized physicians, professors and scientists whose goal is to make transparent, crowd-sourced information available about medications and their side-effects. Safe Medication Use www.safemedicationuse.ca Consumers can report medication incidents and get information about using medications safely. Seniors Health Knowledge Network www.shrtn.on.ca The Seniors' Health Knowledge Network (SHKN) was launched in 2005 in Ontario to improve the quality of health care provided to seniors. A group of leaders involved with older persons in Ontario’s health system initiated consultations across the province about the benefits of a province-wide knowledge exchange network.  Sloan Kettering Cancer Centre http://www.mskcc.org/multimedia An extensive video library on cancer. Society of Obstetricians and Gynaecologists of Canada www.sexualityandu.ca A comprehensive website featuring up-to-date explanations by Canada’s leading experts. Statistics Canada www.statscan.gc.ca Canada’s main source of statistics includes data tables, maps and fact sheets on health indicators. UpToDate www.uptodate.com A clinical reference for physicians who subscribe but also includes patient information that is updated regularly. U.S. Centers for Disease Control Statistics http://www.cdc.gov/datastatistics/ U.S. National Center on Minority Health and Health Disparities http://ncmhd.nih.gov The US National Institute on Aging www.nia.nih.gov U.S. National Women’s Health Information Center www.4woman.gov U.S. National Women’s Health Resource Center www.healthywomen.org Non-profit group with advice specific to women’s health in collaboration with leading health professionals but independent from “external parties.” U.S. National Women’s Health Research www.womenshealthresearch.org WebMD www.webmd.com Helps people find a support group, doctor, hospital, or drug and provides user reviews. It is overseen by an independent medical review board composed of four doctors. The site is community driven with users sharing experiences. Includes a symptom checker for a variety of common conditions. Women’s Health Matters www.womenshealthmatters.ca Women's College Hospital in Toronto provides trusted sources of information, news and research findings on women's health. Their goal is to provide Canada's most reliable resources for online health information for women. The World Health Organization www.who.int Has an extensive site for health-related information. For example, WHO brings together experts to develop new policies and protocols in treating various conditions and diseases. Here is a link to their development of a ‘pain ladder’ that explains how to manage cancer pain: http://www.who.int/cancer/palliative/painladder/en/ Consumer Organizations and Resources The Active Living Alliance for Canadians with a Disability (ALACD) promotes, supports, and enables Canadians with disabilities to lead active, healthy lives. They provide nationally coordinated leadership, support, encouragement, promotion, and information that facilitates healthy, active living opportunities for Canadians of all abilities across all settings and environments. www.ala.ca The Active Living Coalition for Older Adults (ALCOA) strives to promote a society where all older Canadians are leading active lifestyles that contribute to their overallwell-being. ALCOA, in partnership with its member organizations, encourages older Canadians to maintain and enhance their well-being and independence through a lifestyle that embraces physical activity and active living. www.alcoa.ca Advocacy Centre for the Elderly www.advocacycentreelderly.org A community-based legal clinic for low income senior citizens. ACE is funded through Legal Aid Ontario and is the first legal clinic in Canada to specialize in the legal problems of seniors. ACE provides direct legal services to low income seniors, public legal education, and engages in law reform activities. American Association of Retired Person (AARP) www.aarp.org Offers free information on caregiving and issues specific to people over 45 years old. The Art of Hosting www.artofhosting.org A community development process, The Art of Hosting is a highly effective way of harnessing the collective wisdom and self-organizing capacity of groups of any size. The Berkana Institute www.bertkana.org The Berkana Institute and our partners share the clarity that whatever the problem, community is the answer. Berkana has worked in partnership with a rich diversity of people around the world who strengthen their communities by working with the wisdom and wealth already present in their people, traditions and environments. The Canadian Abilities Foundation mission is to link people who have disabilities with a wide range of resources. This site has extensive links to other information resources relating to day-to-day life, the arts, literacy, travel and much more. www.abilities.ca The Canadian Association of Retired Persons (CARP) www.carp.ca Aims to be Canada’s voice for people 45 years old and older. Includes a Health Wizard service for its members. The Canadian Assocation of Wound Care http://cawc.net/en/index.php/resources/resources/ Resource library on wound care management. The Canadian Caregiver Coalition is a national body representing and promoting the voice, needs and interests of family caregivers with all levels of government, and the community through: advocacy and leadership, research, and education, information, communication, and resource development. www.ccc-ccan.ca/ The Canadian Patient Safety Institute www.patientsafetyinstitute.ca Dedicated to making hospitals to homecare safer for patients. The Canadian Pensioners Concerned is a provincial and national membership-based, non-partisan, voluntary, advocacy organization of mature Canadians committed to preserving and enhancing a human-centered vision of life. www.canpension.ca Canadian Virtual University www.cvu-uvc.ca Canadian Virtual University (CVU) is an association of public Canadian universities specializing in online and distance education, and collaborating to increase access to quality assured university education. Caregiver Action Network www.caregiveraction.org CAN is an American non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge. Caregiver Solutions Magazine (archives) http://caregiversolutions.ca/items/archive/archive.html BCS Communications Ltd. is a privately owned publishing and communications company specializing in the creation of Canadian health and lifestyle magazines for consumers and professionals. Caregiving Matters www.caregivingmatters.ca A Canadian charity for those dealing with the declining health and death of a parent. CarePages www.carepages.com A website where a family caregiver can put up a page about their loved one to keep other people up to date on the person’s progress and to allow family and friends (with password) to send and read each other’s messages. Can also upload photos and such so people can feel part of the caring process. Care Planners www.careplanners.com A U.S. website for the New York-New Jersey-Connecticut states that has a fee for service model including professional medical, nursing and social work help. Their online services are free. The Caring Bridge www.caringbridge.org (free, personalized website) You can create your own website as part of their system. It’s free and allows you to keep your family and friends up to date on your health situation (whether having a baby or getting cancer treatment or recovering from an accident). Rosalynn Carter Institute for Caregiving www.rosalynncarter.org The institute’s overall goal is to support caregivers – both family and professional- through efforts of advocacy, education, research, and service. Named for former First Lady of the USA, Rosalynn Carter and centered in the Georgia Southwestern State University. CBC Radio www.cbc.ca/radio Has great documentaries on several aspects of helpful information for advisors including White Coat, Black Art by Dr. Brian Goldman looks at health care from both sides of the gurney; Sparks with Nora Young on many interesting technologies that can help advisors; The Current with Anna Maria Tremonti on the news of the day. In the U.S., PBS Radio would have similar documentaries. The Center for Aging Services Technologies (CAST) is an international coalition of more than 400 technology companies, aging-services organizations, businesses, research universities and government representatives working together under the auspices of the American Association of Homes and Services for the Aging (www.aahsa.org) to expedite the development, evaluation and adoption of emerging technologies that will transform the aging experience. www.leadingage.org The Center for Health Affairs http://www.chanet.org/TheCenterForHealthAffairs/MediaCenter/NewsReleases/~/media/A92355F0A6E140F1A13493BC3C349CAB.ashx A PDF Issue Brief on The Emerging Field of Patient Navigation: A Golden Opportunity to Improve Healthcare The Center for Medicine in the Public Interest www.cmpi.org The Center for Medicine in the Public Interest is a non-profit, nonpartisan research and educational organization that seeks to advance the discussion and development of patient-centered health care. The Change Foundation’s Panorama Project www.changefoundation.ca A standing panel of 32 Ontario residents who review the patient-caregiver experience. The Change Foundation is Ontario’s independent health policy think tank. Chronic Pain Association of Canada http://chronicpaincanada.com/about_chronic_pain/faq Some articles for consumers on chronic pain. Community Legal Education Ontario (CLEO) www.cleo.on.ca Since 1974, CLEO (Community Legal Education Ontario has developed clear, accurate, and practical legal rights information to help people who have low incomes or face other barriers, such as language or literacy, to understand and exercise their legal rights. Community Navigation and Access Program for Seniors www.cnap.ca The Community Navigation and Access Program (CNAP) is a network over 30 community support service (CSS) agencies in the Toronto area who are collaborating to improve access and coordination of support services for older adults, their care providers and health care stakeholders. Concerned Friends of Ontario Citizens in Care Facilities www.concernedfriends.ca A non-profit corporation and registered charity dedicated to reforming the long-term care system and improving quality of life for residents. Consumers Advancing Patient Safety (CAPS) www.patientsafety.org Consumers’ voice in advocating for safer health care. CrowdMed www.crowdmed.com A commercial website created by Jared Heyman whose sister was undiagnosed for 3 years with a US$100,000 bill to find her rare disease. He decided to ‘crowd source’ a process to get ‘medical detectives’ to compete to find possible diagnosis for the patient to then review with their primary physician. There is a cost for this service. Driving Issues DriveABLE www.driveable.ca Ministry of Transportation Medical Review Section http://www.mto.gov.on.ca/english/dandv/driver/medical-review/ Driver Rehabilitation Centres for Driving Evaluations: http://www.mto.gov.on.ca/english/dandv/driver/medical-review/eval-centres.shtml Canadian Association of Occupational Therapists – Older Drivers in Canada http://www.olderdriversafety.ca eLovingFamilies www.elovingfamilies.com A resource to help family members separated by distance keep in better touch with each other and using their time on such platforms as Skype.com more effective. Fair Care Canada https://www.facebook.com/FairCareCanada An online advocacy group for people in long-term care (facilities?) and their families. There are many such groups on the internet. Find the one that best meets your specific needs and interests. Family Caregiver Alliance www.caregiver.org Started in the 1970s, this San Francisco based group of family and community leaders now spreads its caregiver information nationally. The Family Caregiver Newsmagazine www.thefamilycaregiver.com A rich resource of information on all aspects of family care giving for family caregivers. Get Smarter About Money www.getsmarteraboutmoney.ca A initiative of the Ontario Securities Commission, this website covers all aspects of financial questions you may have about being a family caregiver, buying a car or home, getting a divorce, having a baby, retirement and estate planning. Includes links to other websites including services provided by the Ontario Seniors’ Secretariat. Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness by Hank Dunn. http://www.hnehealth.nsw.gov.au/__data/assets/pdf_file/0016/54250/HardChoices.pdf PDF copy of Dunn’s work, 4th edition, to help individuals and their families with the hard choices in medical care. Healthcare Transformation www.docsforpatients.ca A Canadian Medical Association website dedicated to the Canadian Health Act and promoting better health for all Canadians. With articles and entertaining videos it helps Canadians understand their healthcare personally and within Canadian society. An example is Dr. Mike Evans’ online video “23 ½ Hours” at http://www.youtube.com/watch?v=aUaInS6HIGo Healthy Debate www.healthydebate.ca Started in 2011 as an independent source of “unbiased facts and informed opinions” with one full-time writer and three volunteer editors centered mostly on Ontario’s healthcare system. Their contributors are leaders in the fields of medicine, journalism and health care. Institute for Healthcare Improvement www.ihi.org Don Berwick, Harvard Professor’s non-profit organization to bring together leading thinkers to help improve safety, effectiveness, efficiency, and equity to patient-centered care. Institute for Patient and Family-Centered Care www.ipfcc.org/ A non-profit organization dedicated to promoting patient and family-centred care in both adult and children’s health facilities. Khan Academy www.khanacademy.org Non-profit organization providing free online tutorials in areas of math, sciences, economics and finance, humanities, computing and interviews with founder Sal Khan. Millions of users per month and partly funded by Gates Foundation. Language Learning www.bbc.co.uk/languages Information on how to learn languages, the history behind them and much more. A good starting point for advisors who want to expand their linguistic skills -- a real plus in a multi-cultural city. Legacies Inc. www.legacies.ca A not-for-profit organization that provides FREE online books on various topics iuncluding: basic home nursing for caring for loved ones at home, and hospice care at home, and home renovations for in-home patient care, Manulife Health Service Navigation www.manulifehealth.ca Various insurance companies, such as Manulife, now provide a health care navigator as one of its benefits. This gives insured members access to a person to help them navigate health care services. Medical/Physical Aids Check with your homecare service, medical supply store or family doctor. You can also consult local disease-specific organizations and Red Cross branches also loan out supplies. Memory Aid Websites Buzzle has free online games to help with improving memory and having some fun. www.buzzle.com/games/Games.asp Games for the Brain is another site with lots of choices for online games like Mastercards, Sudoku, Guess the Colors, and Mastermind. www.gamesforthebrain.com Brain Metrix is an educational website dedicated to brain training programs. www.brainmetrix.com Some sites have a few free games but you must buy a subscription for full access. www.happy-neuron.com/games www.lumosity.com National Alliance for Caregiving www.caregiving.org Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving. National Caregivers Library www.caregiverslibrary.org Resource center for online information on many aspects of caregiving. National Film Board of Canada www.nfb.ca A great resource for documentaries on all aspects of living. Type in whatever interests you as an advisor and expand your knowledge. The National Institute of Care of the Elderly at University of Toronto www.nicenet.ca NICE is an international network of researchers, practitioners and students dedicated to improving the care of older adults, both in Canada and abroad. Ontario March of Dimes – Home and Vehicle Modifications Program covers the cost of assistive devices such as wheelchairs, scooters, walkers, commode/bath chairs, Hoyer lifts, bath benches, grab bars, etc. through their Assistive Devices Program. They also assist with up to $15,000 of the cost of home modifications including wheelchair ramps, porch lifts, elevators, platform stair lifts, seated stair lifts, ceiling tracking and lifts, automatic door openers, bathroom modifications including roll-in showers and roll-under sinks, widening doorways, and lowering or eliminating entry door and patio thresholds, replacing flooring for wheelchair use, and modifications to vehicles to make them wheelchair accessible, through their home and vehicle modifications program. Both programs are for adults only ( 18+ years old) with a physical disability. The applicants’ income and that of his or her spouse are the only financial criteria used. Other household income is not considered. www.marchofdimes.ca Ontario March of Dimes – Assistive Devices Program Financial assistance is available through this program for adults (18+) who, due to a physical disability are in need of one or more of the following assistive devices: wheelchairs, scooters, walkers, commode/bath chairs, Hoyer lifts, bath benches, grab bars, and much more. Response time for applications to this program is 2–6 weeks from the date of receipt of a completed application with all supporting documentation. Applications may be submitted at any time throughout the year, however the amount of funding available will depend on funds available for this program in each region. This program is entirely self-funded through donations. To contact either of these programs for further information or to receive an application package by mail, you should phone the Ontario March of Dimes office in London, Ont. at 1-866 765-7237. Ontario Healthy Communities Coalition http://www.ohcc-ccso.ca OHCC was established in 1992 to support local and regional groups, coalitions and networks that are working on Healthy Community initiatives in Ontario. Patient Websites www.patientslikeme.com and www.Smartpatients.com Patient sites for exchange of information. Patients Canada www.patientscanada.ca Canada’s leading patient-run website with links to similarly minded resources. Parent Action Drugs http://parentactionondrugs.org PAD was begun in 1983 by a group of parents concerned about the use of alcohol and other drugs by their teenage children. Picker Institute - Improving Healthcare Through the Patient’s Eyes www.pickerinstitute.org A non-profit founded in 1986 in USA and its sister organization in Europe in 2000 dedicated to developing and promoting patient-centered care. Planetree - Advancing Patient-Centered Care Solutions www.planetree.org Since 1978, Planetree’s philosophy is based on a simple premise: care should be organized first and foremost around the needs of patients. Reference Desk www.refdesk.com A useful “all-in-one” reference site for browser searches, online dictionary/thesaurus, medical-legal-financial dictionaries and more. It has been active since 1995 and is a free, family-friendly site that indexes and reviews current web-based resources. Results Not Intentions www.resultsnotintentions.com A website by Legacies Inc. (www.legacies.ca) that looks at published materials evaluating the efficacy of health care for patients. Royal Canadian Legion Their 1,600 branches provide support to seniors and veterans including low-cost housing, health care and home support. Legions work with municipal, provincial and federal agencies to augment official programs including Meals-On-Wheels, transportation, recreation, telephone support, home and visit programs, home support, escort, medical, dental, and counseling services. Legion branch commitments include health care, recreation and social activities, safety at home (e.g., funds to put handrails on staircases), crime proofing, avoidance of fraud, elder abuse, and con games. www.legion.ca Saint Elizabeth Health Care Foundation is a leader in providing caregiver support information, DVDs and other resources. www.saintelizabeth.com Senioropolis – Retirement Residential Placement Service Inc. publishes a database of retirement homes in Ontario. www.Senioropolis.com Share the Care www.sharethecare.org A pragmatic approach to caregiving that can succeed whether a person is ill with cancer, AIDS, ALS, ALZHEIMER’S, recuperating from a serious injury, or elderly and in need of assistance. The Society for Participatory Medicine www.participatorymedicine.org Publishes the Journal of Participatory Medicine which stresses healthcare providers working with patients rather than directing them what to do. Toronto Central Health Line www.torontocentralhealthline.ca A resource website of Toronto services for health and public health. Today’s Caregiver www.caregiver.com Caregiver Media Group provides information, support and guidance for family and professional caregivers. Founded in 1995, they produce Today's Caregiver magazine. They website includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, and chat rooms. Toronto’s Hospital for Sick Children www.sickkids.ca World leader in health care and research for children. Toronto Rehabilitation Centre has extensive resources on its research and product development for people going through rehabilitation.. www.torontorehab.com Toronto Virtual Reference Library http://www.virtualreferencelibrary.ca/vrl/ Also check other reference libraries in your area for useful resources. Tyze http://Tyze.com A personal network in a secure, practical, web-based solution that helps connect people around someone receiving care. The United Hospital Fund’s Next Step in Care Guide www.nextstepincare.org Their online Family Caregiver Guide The Vestibular Disorders Association (VEDA) Disorders can cause dizziness, vertigo, imbalance, hearing changes, nausea, fatigue, anxiety, difficulty concentrating, and other symptoms, with potentially devastating effects on a person's day-to-day functioning, ability to work, relationships with family and friends, and quality of life. VEDA provides information, resources, support, and advocacy. http://www.vestibular.org/ Virtual Hospice www.virtualhospice.ca The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, healthcare providers, researchers, and educators. It includes a feature where you can email a specific question and get expert advice in return. Virtual Volunteering Resources http://www.serviceleader.org/virtual This virtual resources center can benefit volunteers as well as volunteer managers and service leaders who are interested in utilizing technology to benefit their organizations. WebSavvy Patient www.websavvypatient.com, www.Patientpower.info Patient-centered sites led by Andrew Schorr (Web Savvy Patient book – see above) Youth Health Navigation Fieldguide http://issuu.com/censemaking/docs/health_navigation_fieldguide A collaborative project to help young people become even more effective as health care navigators for family members. Governments Your local municipality, regional, provincial, or federal government may have an incentive program for renovations at the same time as you are looking at renovating your home. These grants or loans are to encourage homeowners to make their homes more energy efficient while providing new revenues for the building trades. Your contractor or political representatives can let you know what might be available in your circumstances. Government of Canada benefits and info available through O Canada 1-800 622-6232 TTY/TDD 1-800 465-7735 http://canadabenefits.gc.ca http://www.servicecanada.gc.ca Canadian Consumer Information Gateway www.consumerinformation.ca Ontario Disability Support Program (ODSP) http://www.mcss.gov.on.ca/en/mcss/programs/social/odsp/index.aspx The Ontario Disability Support Program helps people with disabilities who are in financial need pay for living expenses, like food and housing. Ontario Drug Benefit Plan http://www.health.gov.on.ca/en/public/programs/drugs/programs/odb/odb.aspx Part of the Ministry of Health and Long-Term Care. This program is for those who have turned 65, live in Ontario and have a valid Ontario health card. Seniors do not need to apply, but will pay a small portion of the costs of their drugs. Ontario Ministry of Health and Long Term Care http://www.health.gov.on.ca/en/public/programs/hco/options.aspx Official website of the Ministry. Ontario Seniors’ Secretariat www.seniors.gov.on.ca Programs that can assist seniors in Ontario. Provincial Health and Social Services Grants. For example, in Ontario, grants are available through the Health Insurance Program, Ontario Disability Support Program, and Assistive Devices Program. These cover only the cost of specific equipment such as mobility devices, oxygen supplies, and communication devices. Accessibility Services – Assistive Devices Program 1-866 765 7237 Public Health Agency of Canada’s website helps visitors find information about the Agency and its many publications including info on: chronic and infectious diseases, injury prevention, surveillance, emergency preparedness, health promotion, senior health, travel health, and immunization. http://www.phac-aspc.gc.ca/a-z/index-eng.php Seniors Canada On-Line www.seniors.gc.ca Includes extensive resources and links from the Government of Canada’s programs for seniors and caregivers. Social Assistance Check Blue government pages of your telephone book. Also: http://www.211.ca/ a database of community, social, and health services. Also Healthline at: http://thehealthline.ca which puts health and community services at your fingertips for people of Ontario. Veterans Affairs Canada provides client-centered services and benefits that respond to the needs of veterans and their families, in recognition of their service to Canada. Here you will also find , information on disability pensions, Ste. Anne's Hospital, care for the caregiver, client-centered service approach information, research, information on advisory groups, and links to other organizations. www.vac-acc.gc.ca Health Organizations For disease-specific conditions, use your browser and type in the specific illness, condition, or disease to find the national, provincial/territorial, regional, and/or local (association?) websites. Here are just a few examples of these types of websites. AIDS Committees Check your local telephone directory or nearest urban centre. Alzheimer Society of Canada (and related dementias) 1 -800 616-8816 www.alzheimer.ca Amyotrophic Lateral Sclerosis (ALS) Society of Canada 1 -800 267-4257 www.als.ca Arthritis Society 1 -800 321-1433 www.arthritis.ca Bereavement support services (grief counselling) Check your telephone directory. Brain Tumour Foundation 1 -800 265-5106 www.braintumour.ca Canadian Association of Retired Persons 1 -800 363-9736 www.fifty-plus.net Canadian Cancer Society (Cancer Information Services) 1 -888 939-3333 www.cancer.ca Canadian Continence Foundation (incontinence) (705) 750-4600 www.canadiancontinence.ca Canadian Diabetes Association 1-800 226-8464 www.diabetes.ca Canadian Hemophilia Society 1 -800 668-2686 www.hemophilia.ca Canadian Hospice Palliative Care Association 1-800 668-2785 www.chpca.net Canadian Lung Association 1-888 566-5864 www.lung.ca Canadian Medic Alert Foundation 1-800 668-1507 www.medicalert.ca Canadian Red Cross Society 1-800 418-1111 www.redcross.ca Childhood Cancer Foundation – Candlelighters Canada 1-800 363-1062 www.candlelighters.ca Distress Lines Check the inside cover of your local telephone book. Epilepsy Canada 1-877 734-0873 www.epilepsy.ca The Heart and Stroke Foundation of Canada 1-888 473-4636 www.heartandstroke.ca Kidney Foundation of Canada 1-800 361-7494 www.kidney.ca Lifeline (electronic alert systems) 1-800 543-3546 www.lifeline.ca Lupus Canada 1 -800 661-1468 www.lupuscanada.org Health-Related Media Family Caregivers Unite! Radio Programs http://www.voiceamerica.com/Show/1669 Archived radio programs for family caregivers hosted by Dr. Gordon Atherley. Some of the people involved with navCare have been interviewed by Dr. Atherley as well as experts from across Canada and the United States The Fifth Estate, April 12, 2013 CBC News – “Rate My Hospital” http://www.cbc.ca/news/health/features/ratemyhospital accessed June 30, 2013. Provides opportunity for viewers to rate their own hospitals while reviewing other hospitals. General Medical/Health Information Websites Izzy Camilleri Adaptive Clothing An adaptive clothing line created by Canadian Fashion Designer, Izzy Camilleri. This fashion line has been specifically designed for a seated clientele. The transformed cuts of the collection have been developed for the sitting position of a disabled person, which not only follows the line of the body, but also eliminates fabric bulk from front, sides, and back. The design features of this contemporary yet classic collection make dressing effortless for both wearer and assistant. http://www.izadaptive.com Legal Websites e-Laws provides access to official copies of Ontario's statutes and regulations. www.e-laws.gov.on.ca Legal Aid Ontario www.legalaid.on.ca A service to help eligible people get access to legal advise for free.

The navCare Resource List

The following is a selection of recommended telephone numbers and websites. See The navCare Textbook for a list of resource books and CD/DVDs.

Most people involved in navigating systems, negotiating services and mediating problems as they arise do not need to go through all of these websites.

However, advisors who want to be increasingly more helpful to their clients need to create a learning plan that involves updating their own resources while expanding their knowledge and skills. The following are just some of the places to look for materials that can help advisors do just that.

When checking any source for healthcare information, for example, expect to find information that might be unsettling. The information may tell you things you didn’t expect or didn’t want to know. It may be written for a professional audience rather than for individuals and their families. Always keep in mind that website information may not be specific enough to your situation so do not take general statistics and apply them to your circumstances.

Check the validity of any information you get from other resources, including the internet. See who sponsors the site and whether they present only information that supports a sponsor’s products or services. See who endorses the work produced on a website. Check for ‘critics of’ any website using your browser to search for those with an alternative view. Again check the validity of their work.

Some of the books in this reference list may have more recent, up-dated editions. If a particular author interests you, check the library for their other books.

Always check with your professional (e.g., doctor, nurse, lawyer, accountant) before acting on information from books or the internet.

Top Picks

For emergencies, call 911.

For For immediate information help, call Telehealth in Ontario at: 1.866.797.0000 where a nurse can provide you immediate information. They can help you decide whether you need to go to the Emergency Department of your nearest hospital, call you physician within 24 hours or call them back after 24-48 hours to report on any changes in your symptoms. Your own region may have a similar service.

Call 211 to speak with a representative who will help you find one or more of the following services nearest to you: health care, financial and social assistance, housing and utility help, children and youth services, food assistance and meal programs, seniors services, home care, government assistance, parenting and family programs, disability support programs, newcomer services, and volunteer organizations. You can also go to their website: www.211.ca.

Call “Ask Elisabeth” at 1.855.275.3549, a service of Saint Elizabeth Health Care where a nurse can answer more general health questions.

The Internet

The following internet links may be helpful to those of you interested in more information. NOTE - this list will be updated on our website and it will be easier to click onto the links below from the website: www.navcare.org.

If you live outside an urban centre, dial your area code before 555-1212 to get the branch office in the city nearest you. If you have access to the internet, use your browser (e.g, Google, Canada411.ca) to help you locate services nearest to you.

A note of caution: Thousands of web sites offer healthcare information. The information on some sites may not be accurate or current. Check to see who produces the website, their qualifications, and their credibility before assuming their information is correct.

Even websites listed here should be verified by you personally. Health information and other websites still have errors so for the most important information, get at least 3 sources (like journalists do) to verify the information.

Remember, websites change over time and their content may, or may not, be current, accurate or helpful.

With the use of smart phones growing dramatically around the world, it is also worth checking for health care, financial, legal and other “apps” (applications) you can download on your phones. These change by day, so test out various free ones before investing in any that cost money.

Within a few years, apps will be used for many aspects of health care including self-diagnosis.

There are also videos of practical caregiving skills. These are updated regularly by various organizations such as www.Videocaregiving.org, www.virtualhospice.ca, www.youtube.com/user/cvhcvcsp. Use your browser and type in: caregiving “how to” videos to start searching for the most recent and practical video links.

The resources are divided by:

•Health Information Sites
•Consumer Organizations
•Health Organizations
•Governments
•Health-Related Media
•General Medical/Health Information
•Legal Websites

Health Information Sites

Canadian Centre on Substance Abuse

www.ccsa.ca

A national effort to reduce the harms associated with alcohol and other drugs and substances.

Canadian Healthcare Network

www.canadianhealthcarenetwork.ca

A general health information site with links to many other health related sites.

Canadian Institute for Health Information (CIHI)

www.cihi.ca

Since 1994 the CIHI has helped improve the depth and breadth of Canada’s health data including building and maintaining 27 critical pan-Canadian databases that enable jurisdictions to compare data.

Canadian Mental Health Association (CMHA)

www.cmha.ca

Authoritative site on mental health concerns.

The Canadian Pain Society

www.canadianpainsociety.ca

In part, this society is to inform the general public of the results and implications of current research in the area of pain.

The Canadian Family Physician (official journal of The College of Family Physicians of Canada) - PAIN article

http://www.cfp.ca/content/56/6/514.full

Specific article looking at explaining and expanding on the World Health Organization’s analgesic ladder.

CCAC = Community Care Access Centres in Ontario coordinate homecare services to patients. Wherever you live in Ontario, it is easy to find the in-home, community-based healthcare services – for yourself or for a loved one.

Search www.thehealthline.ca

Call 310-CCAC (310-2222)

Centre for Addiction and Mental Health (CAMH)

www.camh.ca

Leading center for mental health research and treatment in Toronto.

ConnexOntario

http://www.connexontario.ca

Provides free and confidential health services information for people experiencing problems with alcohol and drugs, mental illness, or gambling.

Dr. Koop’s Community

www.drkoop.com

An interactive health site with daily updates and news.

Drugs.com

www.drugs.com

Senior editorial board members are pharmacists in Australia and New Zealand but their goal is to be the internet’s most trusted resource for independent, objective, comprehensive and up-to-date drug and related health information for both consumers and healthcare professionals. Verify facts with your own pharmacists.

Drug Watch

www.drugwatch.com is a comprehensive resource about dangerous side-effects and complications from common prescribed drugs and oft-used medical devices.

Embarrassing Problems

www.embarrassingproblems.com

Operated by Health Press Ltd in the United Kingdom which publishes medical books, this free site offers information on health problems people find difficult to discuss.

Everyday Health

www.everydayhealth.com

A popular online portal for healthcare information.

Evidence Exchange Network for Mental Health and Addictions

http://eenet.ca

Evidence Exchange Network (EENet) is a mental health and addictions knowledge exchange network that connects stakeholders across Ontario. The EENet community includes researchers, clinicians, decision-makers, service providers, system planners, policymakers, persons with lived experience, and families.

Family Navigator

http://familynavigator.ca

FamilyNavigator.ca connects Canadian Forces families with local resources, tools, and information to support them with their unique circumstances when it comes to: relocation, supporting a child with special needs, person with a disability, an elderly parent who requires extra support, or a Canadian Forces Member with an operational injury; finding childcare; dealing with military lifestyle challenges; coping with a diagnosis of a health concern; and finding direction when you're not sure who to call.

Finding Health Care

www.findinghealthcare.ca

This website helps Canadians access the health care they need – inside or outside of Medicare. This website is completely independent. It has no obligations to any entity or organization, public or private.

Health Canada’s Information Site

www.hc-sc.gc.ca

The government’s official site with many links to other reputable sites.

Health Charities Coalition of Canada

www.healthcharities.ca

A membership coalition of many of the leading health charities in Canada. The site has resources on understanding and navigating health care systems.

Health Gateway

www.healthgateway.ca

A website to meet the health information and support needs of people living with complex chronic illnesses and episodic disabilities and their loved ones in Canada.

Healthy Canadians

www.healthycanadians.gc.ca

Another extensive government of Canada website with health information.

Look Good, Feel Better - Helping Women with Cancer

www.lgfb.ca

Look Good Feel Better was created from a belief that if a woman with cancer can be helped to look good, chances are she’ll feel better, her spirits will be lifted and she’ll be empowered to face her illness with greater confidence.

MayoClinic.com

www.mayoclinic.com

An outstanding site for general health information.

MedicineNet.com

www.medicinenet.com

From a team of more than 70 US board-certified physicians and others, this site provides solid information as part of the WebMD network.

MedlinePlus

http://medlineplus.gov

Site by the U.S. National Library of Medicine (world’s largest medical library) and the National Institutes of Health. Extensive site used by health professionals and caregivers alike.

Mental Health Commission of Canada

www.mentalhealthcommission.ca

The Mental Health Commission of Canada (MHCC) is a catalyst for improving the mental health system and changing the attitudes and behaviours of Canadians around mental health issues.

Mental Health Guidebook to Navigating Services

http://www.schizophrenia.on.ca/getmedia/181c190c-bbef-427b-bad7-ec288ce3c8e6/FINAL_mental_health_guide_web_version.pdf.aspx

A PDF online copy of the Schizophrenia Society of Ontario’s ‘how-to’ guide on navigating services.

Merck Manual

www.merckmanuals.com and www.merckmedicus.com

Professional and consumer manuals on medical issues, reports and articles of unbiased health information -- updated regularly.

National Institutes of Health

http://health.nih.gov

Health topics alphabetically organized with links to other accredited resources. This is a very common source of information for professionals in the field and consumers alike.

National Women’s Health Resource Center

www.healthywomen.org

Non-profit group with advice specific to women’s health in collaboration with leading health professionals but independent from external parties.

Open Medicine

www.openmedicine.ca

The mission of Open Medicine is to facilitate the equitable, global dissemination of high-quality health research; to promote international dialogue and collaboration on health issues; to improve clinical practice; and to expand and deepen the understanding of health and health care.

Pallium Canada

www.pallium.ca

Pallium Canada is a national education community-of-practice (CoP) created in 2009. Its resources include the Pallium Palliative Pocketbook, a peer-reviewed resource guide for clinical practitioners, and the Learning Essential Approaches to Palliative and End of Life Care (LEAP) program, the only Canada-wide, CFPC accredited palliative care course aimed at inter-professional palliative care education, and includes subject-specific teaching and learning videos.

Public Health Agency of Canada

www.phac-aspc.gc.ca/chn-rcs/index-eng.php

Comprehensive review of such public health topics as active living, health promotion, healthy eating, injury prevention, living with disabilities, mental health, sexuality, travel, and workplace health.

PubMed

www.ncbi.nlm.nih.gov

The National Center for Biotechnology Medicine is a vast library for healthcare professionals. Scroll down home page to the PubMed Central tab which is the search engine for virtually every professional journal article ever written about a condition, disease and drug.

Quack Watch

www.quackwatch.org

Operated by Stephen Barrett, MD Quackwatch is an international network of people who are concerned about health-related frauds, myths, fads, fallacies, and misconduct. Its primary focus is on quackery-related information that is difficult or impossible to get elsewhere. Founded by Dr. Stephen Barrett in 1969 as the Lehigh Valley Committee Against Health Fraud (Allentown, Pennsylvania), it was incorporated in 1970. In 1997, it assumed its current name and began developing a worldwide network of volunteers and expert advisors.

Rxisk: Making Medicines Safer for All of Us

www.rxisk.org

RxISK is the first free, independent website where patients, doctors, and pharmacists can research prescription drugs and easily report a drug side effect — identifying problems and possible solutions earlier than is currently happening. The RxISK team includes highly recognized physicians, professors and scientists whose goal is to make transparent, crowd-sourced information available about medications and their side-effects.

Safe Medication Use

www.safemedicationuse.ca

Consumers can report medication incidents and get information about using medications safely.

Seniors Health Knowledge Network

www.shrtn.on.ca

The Seniors' Health Knowledge Network (SHKN) was launched in 2005 in Ontario to improve the quality of health care provided to seniors. A group of leaders involved with older persons in Ontario’s health system initiated consultations across the province about the benefits of a province-wide knowledge exchange network.

Sloan Kettering Cancer Centre

http://www.mskcc.org/multimedia

An extensive video library on cancer.

Society of Obstetricians and Gynaecologists of Canada

www.sexualityandu.ca

A comprehensive website featuring up-to-date explanations by Canada’s leading experts.

Statistics Canada

www.statscan.gc.ca

Canada’s main source of statistics includes data tables, maps and fact sheets on health indicators.

UpToDate

www.uptodate.com

A clinical reference for physicians who subscribe but also includes patient information that is updated regularly.

U.S. Centers for Disease Control Statistics

http://www.cdc.gov/datastatistics/

U.S. National Center on Minority Health and Health Disparities

http://ncmhd.nih.gov

The US National Institute on Aging

www.nia.nih.gov

U.S. National Women’s Health Information Center

www.4woman.gov

U.S. National Women’s Health Resource Center

www.healthywomen.org

Non-profit group with advice specific to women’s health in collaboration with leading health professionals but independent from “external parties.”

U.S. National Women’s Health Research

www.womenshealthresearch.org

WebMD

www.webmd.com

Helps people find a support group, doctor, hospital, or drug and provides user reviews. It is overseen by an independent medical review board composed of four doctors. The site is community driven with users sharing experiences. Includes a symptom checker for a variety of common conditions.

Women’s Health Matters

www.womenshealthmatters.ca

Women's College Hospital in Toronto provides trusted sources of information, news and research findings on women's health. Their goal is to provide Canada's most reliable resources for online health information for women.

The World Health Organization

www.who.int

Has an extensive site for health-related information. For example, WHO brings together experts to develop new policies and protocols in treating various conditions and diseases. Here is a link to their development of a ‘pain ladder’ that explains how to manage cancer pain:

http://www.who.int/cancer/palliative/painladder/en/

Consumer Organizations and Resources

The Active Living Alliance for Canadians with a Disability (ALACD) promotes, supports, and enables Canadians with disabilities to lead active, healthy lives. They provide nationally coordinated leadership, support, encouragement, promotion, and information that facilitates healthy, active living opportunities for Canadians of all abilities across all settings and environments.

www.ala.ca

The Active Living Coalition for Older Adults (ALCOA) strives to promote a society where all older Canadians are leading active lifestyles that contribute to their overallwell-being. ALCOA, in partnership with its member organizations, encourages older Canadians to maintain and enhance their well-being and independence through a lifestyle that embraces physical activity and active living.

www.alcoa.ca

Advocacy Centre for the Elderly

www.advocacycentreelderly.org

A community-based legal clinic for low income senior citizens. ACE is funded through Legal Aid Ontario and is the first legal clinic in Canada to specialize in the legal problems of seniors. ACE provides direct legal services to low income seniors, public legal education, and engages in law reform activities.

American Association of Retired Person (AARP)

www.aarp.org

Offers free information on caregiving and issues specific to people over 45 years old.

The Art of Hosting

www.artofhosting.org

A community development process, The Art of Hosting is a highly effective way of harnessing the collective wisdom and self-organizing capacity of groups of any size.

The Berkana Institute

www.bertkana.org

The Berkana Institute and our partners share the clarity that whatever the problem, community is the answer. Berkana has worked in partnership with a rich diversity of people around the world who strengthen their communities by working with the wisdom and wealth already present in their people, traditions and environments.

The Canadian Abilities Foundation mission is to link people who have disabilities with a wide range of resources. This site has extensive links to other information resources relating to day-to-day life, the arts, literacy, travel and much more.

www.abilities.ca

The Canadian Association of Retired Persons (CARP)

www.carp.ca

Aims to be Canada’s voice for people 45 years old and older. Includes a Health Wizard service for its members.

The Canadian Assocation of Wound Care

http://cawc.net/en/index.php/resources/resources/

Resource library on wound care management.

The Canadian Caregiver Coalition is a national body representing and promoting the voice, needs and interests of family caregivers with all levels of government, and the community through: advocacy and leadership, research, and education, information, communication, and resource development.

www.ccc-ccan.ca/

The Canadian Patient Safety Institute

www.patientsafetyinstitute.ca

Dedicated to making hospitals to homecare safer for patients.

The Canadian Pensioners Concerned is a provincial and national membership-based, non-partisan, voluntary, advocacy organization of mature Canadians committed to preserving and enhancing a human-centered vision of life.

www.canpension.ca

Canadian Virtual University

www.cvu-uvc.ca

Canadian Virtual University (CVU) is an association of public Canadian universities specializing in online and distance education, and collaborating to increase access to quality assured university education.

Caregiver Action Network

www.caregiveraction.org

CAN is an American non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.

Caregiver Solutions Magazine (archives)

http://caregiversolutions.ca/items/archive/archive.html

BCS Communications Ltd. is a privately owned publishing and communications company specializing in the creation of Canadian health and lifestyle magazines for consumers and professionals.

Caregiving Matters

www.caregivingmatters.ca

A Canadian charity for those dealing with the declining health and death of a parent.

CarePages

www.carepages.com

A website where a family caregiver can put up a page about their loved one to keep other people up to date on the person’s progress and to allow family and friends (with password) to send and read each other’s messages. Can also upload photos and such so people can feel part of the caring process.

Care Planners

www.careplanners.com

A U.S. website for the New York-New Jersey-Connecticut states that has a fee for service model including professional medical, nursing and social work help. Their online services are free.

The Caring Bridge

www.caringbridge.org (free, personalized website)

You can create your own website as part of their system. It’s free and allows you to keep your family and friends up to date on your health situation (whether having a baby or getting cancer treatment or recovering from an accident).

Rosalynn Carter Institute for Caregiving

www.rosalynncarter.org

The institute’s overall goal is to support caregivers – both family and professional- through efforts of advocacy, education, research, and service. Named for former First Lady of the USA, Rosalynn Carter and centered in the Georgia Southwestern State University.

CBC Radio

www.cbc.ca/radio

Has great documentaries on several aspects of helpful information for advisors including White Coat, Black Art by Dr. Brian Goldman looks at health care from both sides of the gurney; Sparks with Nora Young on many interesting technologies that can help advisors; The Current with Anna Maria Tremonti on the news of the day. In the U.S., PBS Radio would have similar documentaries.

The Center for Aging Services Technologies (CAST) is an international coalition of more than 400 technology companies, aging-services organizations, businesses, research universities and government representatives working together under the auspices of the American Association of Homes and Services for the Aging (www.aahsa.org) to expedite the development, evaluation and adoption of emerging technologies that will transform the aging experience.

www.leadingage.org

The Center for Health Affairs

http://www.chanet.org/TheCenterForHealthAffairs/MediaCenter/NewsReleases/~/media/A92355F0A6E140F1A13493BC3C349CAB.ashx

A PDF Issue Brief on The Emerging Field of Patient Navigation: A Golden Opportunity to Improve Healthcare

The Center for Medicine in the Public Interest

www.cmpi.org

The Center for Medicine in the Public Interest is a non-profit, nonpartisan research and educational organization that seeks to advance the discussion and development of patient-centered health care.

The Change Foundation’s Panorama Project

www.changefoundation.ca

A standing panel of 32 Ontario residents who review the patient-caregiver experience. The Change Foundation is Ontario’s independent health policy think tank.

Chronic Pain Association of Canada

http://chronicpaincanada.com/about_chronic_pain/faq

Some articles for consumers on chronic pain.

Community Legal Education Ontario (CLEO)

www.cleo.on.ca

Since 1974, CLEO (Community Legal Education Ontario has developed clear, accurate, and practical legal rights information to help people who have low incomes or face other barriers, such as language or literacy, to understand and exercise their legal rights.

Community Navigation and Access Program for Seniors

www.cnap.ca

The Community Navigation and Access Program (CNAP) is a network over 30 community support service (CSS) agencies in the Toronto area who are collaborating to improve access and coordination of support services for older adults, their care providers and health care stakeholders.

Concerned Friends of Ontario Citizens in Care Facilities

www.concernedfriends.ca

A non-profit corporation and registered charity dedicated to reforming the long-term care system and improving quality of life for residents.

Consumers Advancing Patient Safety (CAPS)

www.patientsafety.org

Consumers’ voice in advocating for safer health care.

CrowdMed

www.crowdmed.com

A commercial website created by Jared Heyman whose sister was undiagnosed for 3 years with a US$100,000 bill to find her rare disease. He decided to ‘crowd source’ a process to get ‘medical detectives’ to compete to find possible diagnosis for the patient to then review with their primary physician. There is a cost for this service.

Driving Issues

DriveABLE www.driveable.ca

Ministry of Transportation Medical Review Section

http://www.mto.gov.on.ca/english/dandv/driver/medical-review/

Driver Rehabilitation Centres for Driving Evaluations: http://www.mto.gov.on.ca/english/dandv/driver/medical-review/eval-centres.shtml

Canadian Association of Occupational Therapists – Older Drivers in Canada http://www.olderdriversafety.ca

eLovingFamilies

www.elovingfamilies.com

A resource to help family members separated by distance keep in better touch with each other and using their time on such platforms as Skype.com more effective.

Fair Care Canada

https://www.facebook.com/FairCareCanada

An online advocacy group for people in long-term care (facilities?) and their families. There are many such groups on the internet. Find the one that best meets your specific needs and interests.

Family Caregiver Alliance

www.caregiver.org

Started in the 1970s, this San Francisco based group of family and community leaders now spreads its caregiver information nationally.

The Family Caregiver Newsmagazine

www.thefamilycaregiver.com

A rich resource of information on all aspects of family care giving for family caregivers.

Get Smarter About Money

www.getsmarteraboutmoney.ca

A initiative of the Ontario Securities Commission, this website covers all aspects of financial questions you may have about being a family caregiver, buying a car or home, getting a divorce, having a baby, retirement and estate planning. Includes links to other websites including services provided by the Ontario Seniors’ Secretariat.

Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness by Hank Dunn.

http://www.hnehealth.nsw.gov.au/__data/assets/pdf_file/0016/54250/HardChoices.pdf

PDF copy of Dunn’s work, 4th edition, to help individuals and their families with the hard choices in medical care.

Healthcare Transformation

www.docsforpatients.ca

A Canadian Medical Association website dedicated to the Canadian Health Act and promoting better health for all Canadians. With articles and entertaining videos it helps Canadians understand their healthcare personally and within Canadian society.

An example is Dr. Mike Evans’ online video “23 ½ Hours” at http://www.youtube.com/watch?v=aUaInS6HIGo

Healthy Debate

www.healthydebate.ca

Started in 2011 as an independent source of “unbiased facts and informed opinions” with one full-time writer and three volunteer editors centered mostly on Ontario’s healthcare system. Their contributors are leaders in the fields of medicine, journalism and health care.

Institute for Healthcare Improvement

www.ihi.org

Don Berwick, Harvard Professor’s non-profit organization to bring together leading thinkers to help improve safety, effectiveness, efficiency, and equity to patient-centered care.

Institute for Patient and Family-Centered Care

www.ipfcc.org/

A non-profit organization dedicated to promoting patient and family-centred care in both adult and children’s health facilities.

Khan Academy

www.khanacademy.org

Non-profit organization providing free online tutorials in areas of math, sciences, economics and finance, humanities, computing and interviews with founder Sal Khan. Millions of users per month and partly funded by Gates Foundation.

Language Learning

www.bbc.co.uk/languages

Information on how to learn languages, the history behind them and much more. A good starting point for advisors who want to expand their linguistic skills -- a real plus in a multi-cultural city.

Legacies Inc.

www.legacies.ca

A not-for-profit organization that provides FREE online books on various topics iuncluding: basic home nursing for caring for loved ones at home, and hospice care at home, and home renovations for in-home patient care,

Manulife Health Service Navigation

www.manulifehealth.ca

Various insurance companies, such as Manulife, now provide a health care navigator as one of its benefits. This gives insured members access to a person to help them navigate health care services.

Medical/Physical Aids

Check with your homecare service, medical supply store or family doctor. You can also consult local disease-specific organizations and Red Cross branches also loan out supplies.

Memory Aid Websites

Buzzle has free online games to help with improving memory and having some fun.

www.buzzle.com/games/Games.asp

Games for the Brain is another site with lots of choices for online games like Mastercards, Sudoku, Guess the Colors, and Mastermind.

www.gamesforthebrain.com

Brain Metrix is an educational website dedicated to brain training programs.

www.brainmetrix.com

Some sites have a few free games but you must buy a subscription for full access.

www.happy-neuron.com/games

www.lumosity.com

National Alliance for Caregiving

www.caregiving.org

Established in 1996, The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on issues of family caregiving.

National Caregivers Library

www.caregiverslibrary.org

Resource center for online information on many aspects of caregiving.

National Film Board of Canada

www.nfb.ca

A great resource for documentaries on all aspects of living. Type in whatever interests you as an advisor and expand your knowledge.

The National Institute of Care of the Elderly at University of Toronto

www.nicenet.ca

NICE is an international network of researchers, practitioners and students dedicated to improving the care of older adults, both in Canada and abroad.

Ontario March of Dimes – Home and Vehicle Modifications Program covers the cost of assistive devices such as wheelchairs, scooters, walkers, commode/bath chairs, Hoyer lifts, bath benches, grab bars, etc. through their Assistive Devices Program. They also assist with up to $15,000 of the cost of home modifications including wheelchair ramps, porch lifts, elevators, platform stair lifts, seated stair lifts, ceiling tracking and lifts, automatic door openers, bathroom modifications including roll-in showers and roll-under sinks, widening doorways, and lowering or eliminating entry door and patio thresholds, replacing flooring for wheelchair use, and modifications to vehicles to make them wheelchair accessible, through their home and vehicle modifications program. Both programs are for adults only ( 18+ years old) with a physical disability. The applicants’ income and that of his or her spouse are the only financial criteria used. Other household income is not considered.

www.marchofdimes.ca

Ontario March of Dimes – Assistive Devices Program

• Financial assistance is available through this program for adults (18+) who, due to a physical disability are in need of one or more of the following assistive devices: wheelchairs, scooters, walkers, commode/bath chairs, Hoyer lifts, bath benches, grab bars, and much more.
•Response time for applications to this program is 2–6 weeks from the date of receipt of a completed application with all supporting documentation. Applications may be submitted at any time throughout the year, however the amount of funding available will depend on funds available for this program in each region. This program is entirely self-funded through donations.

To contact either of these programs for further information or to receive an application package by mail, you should phone the Ontario March of Dimes office in London, Ont. at 1-866 765-7237.

Ontario Healthy Communities Coalition

http://www.ohcc-ccso.ca

OHCC was established in 1992 to support local and regional groups, coalitions and networks that are working on Healthy Community initiatives in Ontario.

Patient Websites

www.patientslikeme.com and www.Smartpatients.com

Patient sites for exchange of information.

Patients Canada

www.patientscanada.ca

Canada’s leading patient-run website with links to similarly minded resources.

Parent Action Drugs

http://parentactionondrugs.org

PAD was begun in 1983 by a group of parents concerned about the use of alcohol and other drugs by their teenage children.

Picker Institute - Improving Healthcare Through the Patient’s Eyes

www.pickerinstitute.org

A non-profit founded in 1986 in USA and its sister organization in Europe in 2000 dedicated to developing and promoting patient-centered care.

Planetree - Advancing Patient-Centered Care Solutions

www.planetree.org

Since 1978, Planetree’s philosophy is based on a simple premise: care should be organized first and foremost around the needs of patients.

Reference Desk

www.refdesk.com

A useful “all-in-one” reference site for browser searches, online dictionary/thesaurus, medical-legal-financial dictionaries and more. It has been active since 1995 and is a free, family-friendly site that indexes and reviews current web-based resources.

Results Not Intentions

www.resultsnotintentions.com

A website by Legacies Inc. (www.legacies.ca) that looks at published materials evaluating the efficacy of health care for patients.

Royal Canadian Legion Their 1,600 branches provide support to seniors and veterans including low-cost housing, health care and home support. Legions work with municipal, provincial and federal agencies to augment official programs including Meals-On-Wheels, transportation, recreation, telephone support, home and visit programs, home support, escort, medical, dental, and counseling services. Legion branch commitments include health care, recreation and social activities, safety at home (e.g., funds to put handrails on staircases), crime proofing, avoidance of fraud, elder abuse, and con games.

www.legion.ca

Saint Elizabeth Health Care Foundation is a leader in providing caregiver support information, DVDs and other resources.

www.saintelizabeth.com

Senioropolis – Retirement Residential Placement Service Inc. publishes a database of retirement homes in Ontario.

www.Senioropolis.com

Share the Care

www.sharethecare.org

A pragmatic approach to caregiving that can succeed whether a person is ill with cancer, AIDS, ALS, ALZHEIMER’S, recuperating from a serious injury, or elderly and in need of assistance.

The Society for Participatory Medicine

www.participatorymedicine.org

Publishes the Journal of Participatory Medicine which stresses healthcare providers working with patients rather than directing them what to do.

Toronto Central Health Line

www.torontocentralhealthline.ca

A resource website of Toronto services for health and public health.

Today’s Caregiver

www.caregiver.com

Caregiver Media Group provides information, support and guidance for family and professional caregivers. Founded in 1995, they produce Today's Caregiver magazine. They website includes topic specific newsletters, online discussion lists, back issue articles of Today's Caregiver magazine, and chat rooms.

Toronto’s Hospital for Sick Children

www.sickkids.ca

World leader in health care and research for children.

Toronto Rehabilitation Centre has extensive resources on its research and product development for people going through rehabilitation..

www.torontorehab.com

Toronto Virtual Reference Library

http://www.virtualreferencelibrary.ca/vrl/

Also check other reference libraries in your area for useful resources.

Tyze

http://Tyze.com A personal network in a secure, practical, web-based solution that helps connect people around someone receiving care.

The United Hospital Fund’s Next Step in Care Guide

www.nextstepincare.org

Their online Family Caregiver Guide

The Vestibular Disorders Association (VEDA) Disorders can cause dizziness, vertigo, imbalance, hearing changes, nausea, fatigue, anxiety, difficulty concentrating, and other symptoms, with potentially devastating effects on a person's day-to-day functioning, ability to work, relationships with family and friends, and quality of life. VEDA provides information, resources, support, and advocacy.

http://www.vestibular.org/

Virtual Hospice

www.virtualhospice.ca

The Canadian Virtual Hospice provides support and personalized information about palliative and end-of-life care to patients, family members, healthcare providers, researchers, and educators. It includes a feature where you can email a specific question and get expert advice in return.

Virtual Volunteering Resources

http://www.serviceleader.org/virtual

This virtual resources center can benefit volunteers as well as volunteer managers and service leaders who are interested in utilizing technology to benefit their organizations.

WebSavvy Patient

www.websavvypatient.com, www.Patientpower.info

Patient-centered sites led by Andrew Schorr (Web Savvy Patient book – see above)

Youth Health Navigation Fieldguide

http://issuu.com/censemaking/docs/health_navigation_fieldguide

A collaborative project to help young people become even more effective as health care navigators for family members.

Governments

Your local municipality, regional, provincial, or federal government may have an incentive program for renovations at the same time as you are looking at renovating your home. These grants or loans are to encourage homeowners to make their homes more energy efficient while providing new revenues for the building trades. Your contractor or political representatives can let you know what might be available in your circumstances.

Government of Canada benefits and info available through O Canada

1-800 622-6232

TTY/TDD 1-800 465-7735

http://canadabenefits.gc.ca

http://www.servicecanada.gc.ca

Canadian Consumer Information Gateway

www.consumerinformation.ca

Ontario Disability Support Program (ODSP)

http://www.mcss.gov.on.ca/en/mcss/programs/social/odsp/index.aspx

The Ontario Disability Support Program helps people with disabilities who are in financial need pay for living expenses, like food and housing.

Ontario Drug Benefit Plan

http://www.health.gov.on.ca/en/public/programs/drugs/programs/odb/odb.aspx

Part of the Ministry of Health and Long-Term Care. This program is for those who have turned 65, live in Ontario and have a valid Ontario health card. Seniors do not need to apply, but will pay a small portion of the costs of their drugs.

Ontario Ministry of Health and Long Term Care

http://www.health.gov.on.ca/en/public/programs/hco/options.aspx

Official website of the Ministry.

Ontario Seniors’ Secretariat

www.seniors.gov.on.ca

Programs that can assist seniors in Ontario.

Provincial Health and Social Services Grants. For example, in Ontario, grants are available through the Health Insurance Program, Ontario Disability Support Program, and Assistive Devices Program. These cover only the cost of specific equipment such as mobility devices, oxygen supplies, and communication devices.

Accessibility Services – Assistive Devices Program 1-866 765 7237

Public Health Agency of Canada’s website helps visitors find information about the Agency and its many publications including info on: chronic and infectious diseases, injury prevention, surveillance, emergency preparedness, health promotion, senior health, travel health, and immunization.

http://www.phac-aspc.gc.ca/a-z/index-eng.php

Seniors Canada On-Line

www.seniors.gc.ca

Includes extensive resources and links from the Government of Canada’s programs for seniors and caregivers.

Social Assistance

Check Blue government pages of your telephone book. Also:

http://www.211.ca/ a database of community, social, and health services.

Also Healthline at: http://thehealthline.ca which puts health and community services at your fingertips for people of Ontario.

Veterans Affairs Canada provides client-centered services and benefits that respond to the needs of veterans and their families, in recognition of their service to Canada. Here you will also find , information on disability pensions, Ste. Anne's Hospital, care for the caregiver, client-centered service approach information, research, information on advisory groups, and links to other organizations.

www.vac-acc.gc.ca

Health Organizations

For disease-specific conditions, use your browser and type in the specific illness, condition, or disease to find the national, provincial/territorial, regional, and/or local (association?) websites. Here are just a few examples of these types of websites.

AIDS Committees

Check your local telephone directory or nearest urban centre.

Alzheimer Society of Canada (and related dementias)

1 -800 616-8816

www.alzheimer.ca

Amyotrophic Lateral Sclerosis (ALS) Society of Canada

1 -800 267-4257

www.als.ca

Arthritis Society

1 -800 321-1433

www.arthritis.ca

Bereavement support services (grief counselling)

Check your telephone directory.

Brain Tumour Foundation

1 -800 265-5106

www.braintumour.ca

Canadian Association of Retired Persons

1 -800 363-9736

www.fifty-plus.net

Canadian Cancer Society (Cancer Information Services)

1 -888 939-3333

www.cancer.ca

Canadian Continence Foundation (incontinence)

(705) 750-4600

www.canadiancontinence.ca

Canadian Diabetes Association

1-800 226-8464

www.diabetes.ca

Canadian Hemophilia Society

1 -800 668-2686

www.hemophilia.ca

Canadian Hospice Palliative Care Association

1-800 668-2785

www.chpca.net

Canadian Lung Association

1-888 566-5864

www.lung.ca

Canadian Medic Alert Foundation

1-800 668-1507

www.medicalert.ca

Canadian Red Cross Society

1-800 418-1111

www.redcross.ca

Childhood Cancer Foundation – Candlelighters Canada

1-800 363-1062

www.candlelighters.ca

Distress Lines

Check the inside cover of your local telephone book.

Epilepsy Canada

1-877 734-0873

www.epilepsy.ca

The Heart and Stroke Foundation of Canada

1-888 473-4636

www.heartandstroke.ca

Kidney Foundation of Canada

1-800 361-7494

www.kidney.ca

Lifeline (electronic alert systems)

1-800 543-3546

www.lifeline.ca

Lupus Canada

1 -800 661-1468

www.lupuscanada.org

Health-Related Media

Family Caregivers Unite! Radio Programs

http://www.voiceamerica.com/Show/1669

Archived radio programs for family caregivers hosted by Dr. Gordon Atherley. Some of the people involved with navCare have been interviewed by Dr. Atherley as well as experts from across Canada and the United States

The Fifth Estate, April 12, 2013 CBC News – “Rate My Hospital”

http://www.cbc.ca/news/health/features/ratemyhospital accessed June 30, 2013. Provides opportunity for viewers to rate their own hospitals while reviewing other hospitals.

General Medical/Health Information Websites

Izzy Camilleri Adaptive Clothing

An adaptive clothing line created by Canadian Fashion Designer, Izzy Camilleri. This fashion line has been specifically designed for a seated clientele. The transformed cuts of the collection have been developed for the sitting position of a disabled person, which not only follows the line of the body, but also eliminates fabric bulk from front, sides, and back. The design features of this contemporary yet classic collection make dressing effortless for both wearer and assistant.

http://www.izadaptive.com

Legal Websites

e-Laws provides access to official copies of Ontario's statutes and regulations.

www.e-laws.gov.on.ca

Legal Aid Ontario

www.legalaid.on.ca

A service to help eligible people get access to legal advise for free.

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