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Brain Injury- Survivor/Family Advocacy Carmela Hutchison, President Alberta Network for Mental Health & DAWN- RAFH Canada BIAC, 11 July 2008.

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Presentation on theme: "Brain Injury- Survivor/Family Advocacy Carmela Hutchison, President Alberta Network for Mental Health & DAWN- RAFH Canada BIAC, 11 July 2008."— Presentation transcript:

1 Brain Injury- Survivor/Family Advocacy Carmela Hutchison, President Alberta Network for Mental Health & DAWN- RAFH Canada BIAC, 11 July 2008

2 Goal To help survivors gain knowledge and skill to become self-advocates, advocate for other people, and advocate with agencies, policymakers and government leaders

3 Objective Learn basic principles of advocacy and practice skills that are important for effective advocacy efforts

4 Application Group Activity – brainstorm with the group about what advocacy means to them

5 Advocacy To defend a right or ask a favor on behalf of yourself or others using: Right language Right time Right place Right person who can respect the right or grant the favor Right method

6 An advocate is: A self advocate is able to stand in support of their own need and/or right An advocate is someone who is willing to stand beside someone in support of their need and/or right An advocate speaks on behalf of: themselves; another person; or a group

7 An advocate is: Directed by the consumer’s needs and begins by listening and understanding the person, the facts, and the need Someone who has good listening skills, is accepting, has knowledge of what options are available, laws and procedure (or can find them), and be able to clearly state what you want in a positive way (assertive)

8 An advocate is: Reasonably available to the survivor Eager, enthusiastic, committed, energetic Someone who knows when to “make peace”; mediate; or use other problem solving skills Someone who also knows when to express opposition, be resistant, intense and passionate

9 An Advocate Is Directed by the survivor Someone who listens to what the survivor is actually asking for rather than what you think they need Someone who follows the reasonable directions of the survivor Someone who can deal with difficult situations or people in crisis

10 Application Group Discussion of Different Types of Advocacy Ask group members for and personal examples or experiences they want to share with the group

11 Types of Advocacy Self On behalf of oneself Obtaining information Filling in forms Letter Appointment Appeals Government body (Office of Disability Issues) Commission (Privacy or Human rights) Alderman/MLA/MP Court Individual (One on One) On behalf of another Often shares values and may also be a staff member of an agency (Such as the Mental Health Patient Advocate) Uses same activities as a self advocate Citizen Individual/group join to address shared issues Brainstorm issues Research facts Develop report Fill in forms Letters Make appointment Government body Commission Civic/MLA/MP Court Media Citizen Protest Systemic Group or individual wants to influence Systems to bring about change at a policy, institutional or legislative level Includes all the citizen activities as well as petitions Task Forces Legislative Reviews Public Hearings Commissions

12 Preparing the Advocacy Plan Define the issue – be sure you understand it well Prepare a response instead of a reaction Break the problem into small steps Use problem solving skills to help Concentrate on the things you can change Determine the goals Identify your resources

13 Preparing the Advocacy Plan Know your allies and your opponents Know your strengths and weaknesses Plan your strategy  Forum, Timing  Tactics educating, reminding, pressuring, complaining, negotiating, legal action, political action Put the strategy into action Evaluate and adjust as necessary Keep accurate records

14 Application Do the self-assessment tool on strengths and areas for development Be honest here to get an accurate picture for how to improve your advocacy skills

15 Common Advocacy Issues Promotion of rights, freedoms, dignity, safety (protection from financial, physical, emotional, and sexual abuse) Ensuring protection of legal and human rights Helping consumers receive health care, social service, private insurance benefits Promoting independence Assisting consumers to get the least intrusive methods of support Protection from discrimination

16 Carrying Out Your Advocacy Plan Using the following checklist, proceed from the most gentle to more persistent tactics Follow the proper channels Keep accurate records and confirm ALL verbal agreements IN WRITING Build a resource list of people who have been helpful to you or share the same issue; identify people of influence

17 Make the request and state why you want it and the reason it should be granted Make the worker do the work as much as possible, government is there to provide service Identify who is authorized to make decisions and ask to see them Follow the chain of command one level at a time until you get help Carrying Out Your Advocacy Plan

18 Insist on common sense. Refuse to let your issue be needlessly complicated or made overly complex Find good examples of similar cases solved the way you want your case to go Prepare your compromise points in advance (sometimes compromise is the only way) Carrying Out Your Advocacy Plan

19 Discover areas where officials have some leeway that is not entirely limited by policy Show that there are always exceptions to the rules Cite the case law or policy, rule, or legislation (helps to have legal advice if you can get it or someone with the same experience). Develop a good relationship with a “buddy” in the system who can help discretely Carrying Out Your Advocacy Plan

20 Make it clear you are going to persist until a resolution is reached (preach, embarrass, go to the press) Evaluate and adjust your plan if you are still not getting anywhere Find the support of third parties and start carefully building coalitions (be careful, sometimes the more people you involve in a problem, the more complicated it becomes and their agendas can compete with yours) Carrying Out Your Advocacy Plan

21 Application - Using the scenario provided, create an advocacy plan in your group

22 Advocacy Skills Assertiveness (verbal and non verbal) Communication Skills Attitude Negotiation Skills Problem Solving Skills

23 Assertiveness Assertive behavior enables a person to act in their own best interest and advocate for themselves with confidence; to express honesty comfortably; and exercise personal rights without denying the rights of others.

24 Assertiveness Is an important skill because the lack of it is the chief barrier to getting your needs met Lack of assertiveness is one of the key issues during times of mental illness; even if you have the skill, you may not be able to use it

25 Assertive People are brave respect self and others own their own feelings, thoughts, and ideas openly and honesty state their feelings understand the possible consequences of assertiveness know when and how to be assertive

26 Tips For Assertiveness Choose the right time Choose the right place Be direct Use “I” statements Content: be specific, spontaneous, genuine, direct Use body language to back up your words Confirm your request Practice the skill in safe situations

27 Non Verbal Assertive Skills 90% of our message is delivered through nonverbal communication ( Eye contact Body posture, body space Gestures Voice, tone, volume

28 Application Review and role play some assertiveness techniques

29 Communication Skills Communication skills allow for good relationships with many people Means you are understood and you understand the other person Be an active listener Ask questions to show you are listening and check understanding Summarize what the other person has said

30 Communication Skills Body language Space Personal appearance Hygiene Attitude

31 Negotiation Skills Negotiation is a discussion intended to produce an agreement Lead with the strongest part of your argument Be brief and relevant Focus on solutions instead of complaints Control your emotions

32 Negotiation Skills Have a minimum in mind in advance that you are willing to accept Show you understand the other person’s position Be persistent, use “I” statements Be non threatening Point out faulty logic or weak points

33 Negotiation Skills Ask for the chance to present more information or follow-up Restate any actions agreed upon Set a timeline for action Be prepared to walk out without resolving the issue Follow-up

34 Application To practice verbal communication, have participants form Groups of two and role pay a face to face meeting or telephone call addressing an advocacy situation Have one person be the advocate and another person being approached to solve the problem

35 Application While doing the communication exercise focus on: Using I statements Listen actively Plan and practice what you will say Negotiate for what you want Be considerate Keep records and follow up

36 Problem Solving Skills Are the most important skill to avoid conflict Define the problem Break down complex problems Set priorities Look at causes and who is affected by a problem

37 Problem Solving Skills Identify solutions Select a solution Plan your action Take action Evaluate and adjust

38 Application Problem Solving Skills – In groups of three, identify a problem using the problem solving process, and how to formulate a solution to the problem using the consumer’s decision about what they want to happen, assist the group to break the problem down into manageable parts to come up with a resolution

39 Application Problem Solving Process What do you want to happen? Who will you approach? What are the strengths of your case? What does the other side have to gain? What is the action plan? Select an approach?

40 Types of Advocacy Self On behalf of oneself Obtaining information Filling in forms Letter Appointment Appeals Government body (Office of Disability Issues) Commission (Privacy or Human rights) Alderman/MLA/MP Court Individual (One on One) On behalf of another Often shares values and may also be a staff member of an agency (Such as the Mental Health Patient Advocate) Uses same activities as a self advocate Citizen Individual/group join to address shared issues Brainstorm issues Research facts Develop report Fill in forms Letters Make appointment Government body Commission Civic/MLA/MP Court Media Citizen Protest Systemic Group or individual wants to influence Systems to bring about change at a policy, institutional or legislative level Includes all the citizen activities as well as petitions Task Forces Legislative Reviews Public Hearings Commissions

41 Selecting an Approach Consider the following: Which approach will most likely solve the problem for the long term? Which approach is the most realistic to accomplish for now? Do you have the resources? Do you have enough time to implement the approach? Are there any risks to taking the chosen approach?

42 Individual Rights and Responsibilities Natural rights may not be expressed under a particular law (the right to be heard, for example) Citizen rights are legislated rights that are protected under federal and provincial law Health/Mental health legislation may affect our ability to exercise our rights in some situations

43 Canadian Charter of Rights and Freedoms Equality rights – equal treatment before and under the law, equal protection and benefit of the law without discrimination on the basis of: in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

44 Canadian Charter of Rights and Freedoms Democratic rights – every citizen of Canada has the right to vote in an election of members of the House of Commons or of a legislative assembly and participate in political activities Mobility rights - Every citizen of Canada has the right to enter, remain in and leave Canada, to move take up residence and gain livelihood in any province; these are limited by a) laws of a province except for those that discriminate on the basis of area of residence (ie professional acts); and b) any laws providing for reasonable residency requirements as a qualification for the receipt of publicly provided social services.

45 Canadian Charter of Rights and Freedoms Legal Rights- the right to be presumed innocent until proven guilty; the right to retain and instruct counsel without delay; the right to an interpreter for the language in which the court proceeding takes place or the right to an interpreter if deaf; and against unreasonable search and seizure or cruel and unusual treatment

46 Canadian Charter of Rights and Freedoms Language rights -The right to use either English or French languages in communications with Federal and certain Provincial Governments Minority language education rights- in general French and English Minorities in every Province and Territory have the right to be educated in their own language

47 Canadian Charter of Rights and Freedoms Everyone has the following fundamental freedoms:  a) freedom of conscience and religion;  b) freedom of thought, belief, opinion and expression, including freedom of the press and other media of communication;  c) freedom of peaceful assembly; and  d) freedom of association.

48 Individual Responsibilities as a Canadian Understand and obey Canadian Laws Participate in Canada’s democratic political system Vote in Elections Allow other Canadians to enjoy their rights and freedoms Appreciate and help and to preserve Canada’s multicultural heritage

49 Enforcing your rights If your rights have been violated by Federal or Provincial Government, you have the right to appeal This right is usually stated on the forms or a poster or you are informed of it; IF IT IS NOT VISIBLE ASK; there are usually appeal bodies in each agency; ultimately once these levels of appeal are exhausted you can go to Court and may proceed all the way up to the Supreme Court of Canada if your motions of appeal are granted by the courts

50 Enforcing your rights If your rights have been violated by a private individual you may seek justice from Federal or Provincial Human Rights Commissions, Privacy Commission, Office of the Ombudsman, Community advocacy organizations If you require legal assistance, you may be eligible for free or low cost legal assistance

51 Enforcing Your Rights It must be noted that access to low cost legal help is not cheap. It is extremely limited and this has led to many people representing themselves in court. The best goal for an advocate is to build such a strong case you avoid ever having to enter an appeal process by winning your request at the start by using the best problem solving approach and having all the facts and above all, avoiding inappropriate anger that blocks problem solving.

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54 Application Using an example from the Problem solving exercise, prepare a letter on behalf of the “survivor” addressing the issue Watch the format of the letter Explain what you want include relevant documentation Explain action taken Explain steps taken set a timeline for a response/action Cc right people watch the tone Keep a copy Proofread

55 Tips and Tricks for Brain Injury Survivors Keep a day timer where you can record a lot of things in one place. Meetings and appointments are easier to pace if you can see the whole month at a glance; keep one section to record conversations with date and time Make appointments to talk to public agencies, doctors or other service providers rather than showing up unannounced; prepare in advance what you want to accomplish in point form and tick it off Prepare people who have anger management or issues where they may blurt out inappropriately that you will cue them with “If I could interject” and that means they will stop talking and let you fill the point in Ensure your own method for managing your own health and coping skills is in place as much as possible;

56 Tips & Tricks Have someone you can debrief with after stressful situations In a conflictual or stressful intervention, if something goes badly but you still feel like it was the right thing to do, then it was probably ok Have a set of resources of people who can help, most communities have a list of crisis lines, food banks and so on

57 Tips and Tricks Use and exchange business cards with all the people you talk to – it keeps you from forgetting to include pieces of contact information and allows you to remember who you spoke with for the future For some people with severe brain injury it may be good to use a communication book with providers in complex advocacy situations Using advance directives can also help people with TBI have more input into their decision making by using a representative to advocate on their behalf

58 Sources of Information Alberta Network for Mental Health (Fellowship) National Network for Mental Health Self Help Connection Opportunity Works


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