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OFCP Publication: Consumer Rights for Long Term Care ServicesPlain Language Version Table of ContentsINTRODUCTIONSECTION 1 – YOUR RIGHTS SECTION 2 – RIGHTS AND RESPONSIBILITIES SECTION 3 – WHAT YOU CAN DO PLACES TO CALL FOR HELP APPENDIX A
ACKNOWLEDGEMENTS
Catherine Frazee: Editor Barbara Collier: Research Focus Group participants: Susan Beayni Photographs by Lydia Gans, Oakland, Ca. Copywrite by Lydia Gans Layout by Greg Turriff of Turriff Designs We also wish to acknowledge the use of material developed by: Produced by Ontario Federation for Cerebral Palsy using funds raised in communities across Ontario. Various formats of this booklet and related materials will be available
on our website:
IntroductionIn 1994, a new law was passed in Ontario, called The Long Term Care Act. This law applies to many services funded by the Ministry of Health, including:
This law contains something called a Bill of Rights. The Bill of Rights is a set of rules about how people who receive services should be treated - both by the people providing the services and also by the people managing the services. If you are someone who receives any of these services, you may have had the experience of feeling small and powerless, Sometimes it is easy to forget that our whole system of health and social services is in place for one main purpose - to provide the supports that people need. You are the consumer, the person for whom these services are designed. In this role, you are like the teacher in a classroom. Just like a good teacher is listened to and respected by the pupils in her class, you can expect to be listened to and treated with respect by the people who provide your services. That is one of your rights. This book describes nine important rights that you should know about. If you receive services under the Ontario Long Term Care Act, these rights belong to you, by law. We hope that you will use this book to:
Section 1 - Your Rights1. Courtesy, Respect and Freedom from AbuseYou have the right to be treated in a courteous and respectful manner and to be free from mental, physical, and financial abuse. There are two parts to this right. First, this right requires that people who provide your services should show that they respect you as a person. There are many ways of doing this, including paying careful attention to you when you have something to say and taking the tine to listen to your ideas and opinions. Second, this right states very clearly that you must never be abused be the people who provide your services. It is important to understand that there are many different kinds of abuse. "They are all against the law. On the following two pages, you will find several examples of abuse. As you read, you may think of other examples. If you think you have been abused be someone who provides your services,
talk it over with someone you trust. Then, read Section 3 of this book
for some advice about what to do. One kind of abuse is called mental abuse. What is Mental Abuse? Does someone who provides your services criticize you or make fun of you in a way that hurts your feelings? Does someone who provides your services often give you the "silent treatment" when he or she is angry about something? Does someone who provides your services make you feel that you are "just too much trouble"? Does someone who provides your services ever threaten you?
Another kind of abuse is called physical abuse. What is Physical Abuse? Does someone who provides your services touch you or handle your body is a way that hurts or frightens you? Does someone who provides your services refuse to give you the help that you need to eat, dress or go to the bathroom? Does someone who provides your services prevent you from using important things like your glasses, hearing aid, communication system, cane, or wheelchair? Are there other people who are also receiving services who hurt or frighten
you? Another kind of abuse is called financial abuse. You have the rights to choose how you will manage your money and what you do with your money. This includes deciding who you will ask for advice or help with money. What is Financial Abuse? Does someone who provides your services steal from your or damage things that belongs to you? Does someone who provides your services pressure you to spend money for things that you don't really want? Are there other people who are also receiving services who steal from
you? Another kind of abuse is called sexual abuse. This is a very serious kind of abuse. It is your right to choose whether
or not you want to have a sexual relationship with someone. It is your
right to choose your own way of being sexual and your own time. What is Sexual Abuse? Does someone who provides your services show you sexual photographs or talk or joke about sex in a way that makes you feel uncomfortable? Does someone who provides your services ever touch you in a sexual way? Does someone who provides your services every put pressure on you to be sexual? Are there other people who are also receiving services who touch you in a sexual way? If you answer "yes" to any of these questions, you may be experiencing
abuse. 2. Privacy and Freedom to Make Your Own DecisionsYou have the right to be dealt with in a manner that respects your dignity and privacy and promotes your autonomy. There are two parts to this right. First, this right requires that people who provide your services should treat your personal life as private. There are many ways of doing this, such as leaving you alone when you are talking with friends and being careful not to say or do things that will embarrass you. Second, this right requires that people who provide your services should
respect your autonomy. Autonomy means making your own decisions, and includes
being able to choose someone you trust to help you make important decisions.
Your Right to Privacy and Autonomy - What Does It Mean? Does someone who provides your services ask questions about your personal life that you would rather not answer? Does someone who provides your services refuse to knock on your door before entering your apartment or room? Does someone who provides your services criticize you or make judgmental comments about your decisions, your plans or your relationships? Does someone who provides your services prevent you from being in charge of your daily life and routines? If you answer yes to some of these questions, there is something you can do. The law is on your side. The law states that your right to privacy and autonomy should be fully respected and promoted. 3. Being an IndividualYou have the right to be dealt with in a manner that recognizes your individuality and that responds to your needs and preferences. This includes preferences based on ethnic, spiritual, linguistic, familial and cultural factors. This right begins by recognizing that you are an individual with your own particular likes and dislikes and your own way of doing things. This right requires that the people who provide your services allow you to choose what kind of service you want and need. This right also recognizes that some of your choices will be based upon such things as what language you speak, what religion you practice, what ethnic or cultural values you hold or what kind of family you have. This right requires that the people who provide your services respect all of these aspects of who you are. Your Right to Be an Individual - What Does It Mean? Does someone who provides your services make strict rules that feel unfair to you? Does someone who provides your services refuse to make changes that you request? Does someone who provides your services say rude things about your race, your language, your religion, your disability, your family or the country you came from? Does someone who provides your services make it difficult for you to communicate in the way that you prefer? If you answer yes to some of these questions, there is something you
can do. The law is on your side. The law states that your right to be
an individual should be fully respected and promoted. 4. Information and AnswersYou have the right to have information about community services provided to you and to be told who will be providing the services. This right is about making sure that you know what is going on in your life. This right requires that the people who provide your services must explain clearly to you what those services are and who will provide them. This information must be provided in a way that you can understand (for example, in audiotape, large print, computer disk, Braille, or a booklet with pictures to assist you in reading the words). Your Right to Information and Answers - What Does It Mean? Does anyone involved in providing your services say that you must read the "fine print" of a complicated contract if you want to know something about your services? Does anyone involved in providing your services refuse to tell you about new or different services you are interested in? Does anyone involved in providing your services make changes to your services or schedule without explaining how these changes will affect you? If your answer yes to some of these questions, there is something you
can do. The law is on your side. The law states that your right to information
and answers should be fully respected and promoted. 5. ParticipationYou have the right to participate in the assessment of your requirements, development of your service plan, review of your requirements, evaluation and revision of your service plan. This right recognizes that you have an important role to play in deciding what services you will receive, in making changes to your services and in judging whether your services are working well or not. This right requires that the people who provide your services listen carefully to what you want and treat you as an equal in their decision making processes. They should also make it easy and comfortable for you to give feedback about your services. Your Right to Participation - What Does It Mean? Does anyone involved in providing your services assume that they know what you want without asking you first? Does anyone involved in providing your services forget or refuse to involve you in the planning process? Does anyone involved in providing your services assume you are satisfied unless you complain? Does anyone involved in providing your services make you feel uncomfortable about raising any concerns that you have? Have you tried to suggest changes, but found that your ideas or concerns were ignored? If you answer yes to some of these questions, there is something you
can do. The law is on your side. The law states that your right to participation
should be fully respected and promoted. 6. Control and ConsentYou have the right to give or refuse consent to the provision of any community service. This right recognizes that you must be in control of your personal and community services. This right requires that people who provide your services must have your agreement before those services are delivered. You make the decision about whether or not to receive certain services. If you make a decision and then later change your mind, that is your
right. Your Right to Control and Consent - What Does It Mean? Does anyone involved in providing your services act as if nothing can ever be changed? Does anyone involved in providing you services forget or refuse to involve you in reviewing changes you might want to make in you services? Does anyone involved in providing your services expect you to sign consent forms that you do not understand? If you answer yes to some of these questions, there is something you can do. The law is on your side. The law states that your right to control and consent should be fully respected and promoted. 7. Freedom to Speak OutYou have the right to raise concerns or recommend changes in connection with the community services provided to you and in connection with policies and decisions that affect your interests, to your service provider, government officials or any other person, without fear of interference, coercion, discrimination or reprisal. This right recognizes that no matter how well things may start out for you with your services, problems can come up. When problems do come up, you have the right to speak out about them. This right states that the people involved in providing your services should never do anything to make you feel afraid to speak out. Also, they should never punish you in any way for talking about your concerns. Your Right to Speak Out - What Does It Mean? Has anyone involved in providing your services ever pressured you not to make a complaint? Has anyone involved in providing your services ever refused to take your concerns seriously? Has anyone involved in providing your services ever threatened that there would be trouble for you if you complain or request changes? If you answer yes to some of these questions, there is something you
can do. The law is on our side. The law states that your right to speak
out should be fully respected and promoted. 8. Knowing the RulesYou have the right to be informed of the laws, rules and policies affecting the operation of the service provider and the right to be informed in writing of the procedures for initiating complaints about the service provider. This right recognizes that in order to protect your rights, you must have information about the policies and procedures of your service provider. This right requires that the people who provide your services tell you who makes the decisions and rules, and also that they explain to you how to give your input about these decisions and rules. This includes making it very clear to you how you can make an official complaint about any of their decisions or rules. Your Right to Know the Rules - What Does It Mean? Does anyone involved in providing your services tell you about decisions which affected you after they were already made? Does anyone involved in providing your services suggest that there is nothing you can do to change rules or policies? Are the complaint procedures for your service provider simply unavailable, or difficult for you to understand? If you answer yes to some of these questions, there is something you
can do. The law is on your side. The law states that your right to know
the rules should be fully respected and promoted. 9. ConfidentialityYou have the right to have your records kept confidential in accordance with the law. This right recognizes that information about you and your life belongs only to you. Information about you and your life can only be shared with other people if you give your consent. This right requires that the people who provide your services must keep information about you (such as your address, telephone number and personal details) in a safe place where it will only be seen by people who need to know. You are in control of this information, and have the right to see what is written in your file if you want. You are in control of how much or how little of this information is shared with other people. Your Right to Confidentiality - What Does It Mean? Does anyone involved in providing your services act as if your records are "none of your business"? Does anyone involved in providing your services give other people information about you without first asking your permission? Do you find that the people who provide your services know more about your personal life than they need to know? If you answer yes to some of these questions, there is something you can do. The law is on your side. The law states that your right to confidentiality should be fully respected and promoted. Section 2 - Rights and ResponsibilitiesEveryone Has Rights The nine rights described in the previous section of this book belong to you because you receive services under the Ontario Long Term Care Act. Other rights, however, belong to you simply because you are a person who lives in Canada. These rights are spelled out in many different laws. For example, everyone who is 18 years of age or older has a right to move from one place to another. You have a right to be educated. You have a right to practice the religion of your choice. You have a right to express your opinions out loud. Under special laws called Human Rights Codes, everyone has the right to be treated equally, without discrimination. This means that whether you are applying for a job, going to school, buying things in a store, renting an apartment or receiving some kind of service, you should never be treated badly because of such characteristics as your race, colour, disability, sex, religion, age, or sexual orientation. For more information about human rights, you may want to visit a library or contact the organizations listed at the back of this book. Because everyone in society has certain rights, we all have responsibilities to respect the rights of others. For example, when you are speaking out about something that troubles you, you have the responsibility not to say things that are racist, abusive or that violate someone else's right to privacy. Your rights must be exercised in a way that does not cause harm or show disrespect for someone else's rights. In this section of the book, you will learn about:
Responsibilities of People who Receive Services When you agree to your service plan, you will be asked to sign a consent form. If you are unable to give your signature, you can agree verbally or in your preferred way of communicating. If your consent is not written, it should be witnessed by at least two other people. This way, there should be no misunderstanding about whether you have agreed or not. It is very important that you understand your rights and your service plan. If anything in your service plan is unclear to you, you should not give your agreement. Instead, you should tell your service provider what you do not understand. Responsibilities of People who Receive Services
Responsibilities of People who Provide Services Before you begin to receive services, there must be some agreement between you and the people who will be providing these services. This agreement is called a service contract, or service plan. A service plan is a legal contract that describes what your services will be, how they will be provided, who will be providing them, how long they will be provided and when and how they may be reviewed or changed. As a part of this contract, the people who manage your services must agree to respect and promote each and every one of the nine rights described in the previous section of this book. The law does not spell out in detail exactly how your service provider should "promote" your rights. However, it is their responsibility to check in with you often, in order to find out how things are going and to be responsive to your ideas and concerns. In other words, people who provide services must find a way of learning what is important to you and acting on this information before problems occur rather than after. One way that people who provide services can promote your rights is through something called a "personal outcome focus". This is a system that puts listening to you and learning from you at the very center of a service organization. A number of people and long term care funded organizations have worked with this approach. If you are interested, contact the Ontario Federation for Cerebral Palsy or Accreditation Ontario. If the people who provide your services fail to keep their promise to respect and promote your rights, the Ministry of Health is responsible to do something to remedy the situation. If necessary, the Ministry will make arrangements for a different organization to provide your services. Responsibilities of People who Provide Services
Section 3 - What You Can DoWhat to do if you think one of your rights is not being respected. 1. Don't let your fears stop you from speaking out. 2. Talk to someone you trust. 3. Think over how strongly you feel about this right. 4. Decide what you want to do. If you feel that you are in any danger, you should call the police or
a crisis help line. If this is a situation of serious abuse, follow the
steps on the next page. What to do if you think you have been abused 1. Don't let your fears stop you from speaking out. 2. Talk to someone you trust. 3. Write down (or ask someone to write for you) what happened.
4. If the abuse is happening now, or if you are currently in danger,
call a lawyer and or the police. 5. If there has been any violence or threats of violence, think about making a permanent change of arrangements. Meanwhile, have a back-up plan and support system in place for your safety (e.g., leave a packed suitcase, money and identification with a trusted friend in case you need to make a fast escape.) 6. Get support from a counselor or an advocate, especially if you have to go to court and the abuser has made threats. You can call an Independent Living Centre, InfoAbility, a disability organization, or a sexual assault crisis hotline. 7. Learn about abuse at the public library or through the organizations listed in this booklet. Knowledge is power. Thanks to the Centre for Independent Living in Toronto for their contribution
of this section. Section 4 - ResourcesPlaces to Call for Help For General Information Government of Canada Ontario Federation for Cerebral Palsy
Within greater Toronto: (416) 244-9686 Centres for Independent Living
Phone: (416) 599-2458 (in Toronto) Active Living Alliance for Canadians with a Disability (ALACD)
Phone: (613) 244-0052 Canadian Paraplegic Association
Phone: (416) 422-5644 Ontario March of Dimes
Phone: (416) 425-3463 For Information on Community, Social, Health and Government Services in your Community (Provincial): Community Care Access Centres
Toll free : 1- 800-268-1154 EnableLink 211 Phone: (416) 392-4605 www.211toronto.ca Shelter and Transition Houses For Information about Abuse or Violence: Sexual Assault Care Centres Toronto Rape Crisis Centre Phone: (416) 597-8808 www.trccmwar.ca Disabled Women’s Network (DAWN) Ontario Toll-free: 1-800-561-4727 www.dawn.thot.net The National Clearinghouse on Family Violence
For Information on Rights and Assistance with Improving Quality: Accreditation Ontario Phone: (705) 356-2782 www.accreditationontario.com Ontario Federation for Cerebral Palsy can provide you with information and contacts based on your interest. The Council on Quality and Leadership Below are some organizations that help with finding out about legal rights, and may be able to help you with a concern that you have. When criminal charges may be laid, you should consult a lawyer for advice or options. In Ontario there are 71 free community legal clinics. Contact ARCH or Ontario Legal Aid for more info: (ARCH) Advocacy Resource Centre for the Handicapped
Phone: (416) 482-8255 Ontario Legal Aid
Phone: (416) 979-1446 Advocacy Centre for the Elderly (ACE) Phone: (416) 598-2656 www.advocacycentreelderly.org Community Legal Education Ontario (CLEO) Phone: (416) 408-4420 www.cleo.on.ca www.cleonet.ca Download publication “Home_Care_Complaints_and_Appeals” Dial-A-Law Toll-free: 1-800-387-2992
Ministry of Health and Long-Term Care Branches: Here is contact information for the Ministry of Health and Long-Term Care Division offices in Ontario: General Phone: (416) 314-5518 Toronto Region Central West Region Central South Region Eastern Region Southwest Region
Northern Region Appendix AThe Bill of Rights Here are your rights as they appear in the Ontario Long Term Care Act: 1. You have the right to be treated in a courteous and respectful manner and to be free from mental, physical, and financial abuse. 2. You have the right to be dealt with in a manner that respects your dignity and privacy and promotes your autonomy. 3. You have the right to be dealt with in a manner that recognizes your individuality and that responds to your needs and preferences. This includes preferences based on ethnic, spiritual, linguistic, familial and cultural factors. 4. You have the right to have information about community services provided to you and to be told who will be providing the services. 5. You have the right to participate in the assessment of your requirements, development of service plan, review of your requirements, evaluation and revision of your service plan. 6. You have the right to give or refuse consent to the provision of any community service. 7. You have the right to raise concerns or recommended changes in connection with the community services provided to you and in connection with policies and decisions that affect your interests, to your service provider, government officials or any other person, without fear of interference, coercion, discrimination or reprisal. 8. You have the right to be informed of the laws, rules and policies affecting the operation of the service provider and the right to be informed in writing of the procedures for initiating complaints about the service provider. 9. You have the right to have your records kept confidential in accordance
with the law. Sample Format for Suggestions or Concerns The agency that provides your services should have forms for you to fill
out if you have a complaint or a suggestion. If they don't, or if you
have never seen one of these forms, here is a sample for you to copy and
use. Suggestion or Complaint Form Date To: From: Regarding: Details: Be sure to make specific suggestions about how to resolve the situation you are writing about. Also remember to mention your rights according to the Bill of Rights. If you are writing because one or more of your rights are not being fully respected, explain which rights you are referring to. cc: Decide what you want each of these people to do about the complaint or suggestion, and mark it on their copy. For example, you might say "For your information only" if you just want the person to know that you have made the complaint or suggestion. If you want the person to take action, tell them what action you think they might be able to take. If you don't know, just say "Action required." - then they can decide what help they might be for you. Signature: GlossaryAbuse - Bad or improper treatment. Anything that causes harm to a person. Autonomy - Making your own decisions, including the decision to choose someone you trust to help you. Coercion - Using threats or force to make you do something you don't want to do, or prevent you from doing something you do want to do. Consent - Giving your permission or agreement, after you have all of the information that you need to do so. Cultural - Ways of being, thinking and behaving that you learn from others around you. Dignity - Being worthy. Deserving proper treatment. Discrimination - Unequal treatment based on your disability, skin colour, religion, sex, age, ethnic origin, etc. Ethnic - A word used to describe your race or the country your family came from. Evaluation - A report about how well a job or task is being done. Familial - A word used to refer to the family you were born or adopted into. Judgmental - Expressing negative opinions, or conclusions about your life choices, friendships or activities. Linguistic - A word used to refer to your native or preferred language. Also includes communication devices or sign language. Policies - The guidelines and rules made be the people who manage your services. Promoted - Helped, put forward, encouraged. Reprisal - Revenge or punishment. Spiritual - A word used to refer to sacred or religious matters and beliefs.
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