Brain Injury-Survivor/Family Advocacy

Carmela Hutchison, President Alberta Network for Mental Health & DAWN-RAFH CanadaBIAC, 11 July 2008

Goal

To help survivors gain knowledge and skill to become

self-advocates, advocate for other people, and advocate with

agencies, policymakers and government leaders

Objective

Learn basic principles of advocacy and practice

skills that are important for effective advocacy efforts

Application

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

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

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

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)

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

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

Application

Group Discussion of Different Types of Advocacy

Ask group members for and personal examples or experiences they want to share with the group

Types of Advocacy

Self

On behalf of oneself

Obtaining informationFilling in forms

LetterAppointment

AppealsGovernment 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 memberof an agency

(Such as the Mental Health Patient Advocate)

Uses sameactivities as

a self advocate

SystemicGroup or individual wants to influence

Systems

to bring about change at a policy, institutional

or legislative levelIncludes all the citizen

activities as well as petitionsTask Forces

Legislative ReviewsPublic HearingsCommissions

Citizen

Individual/group join to address shared issues

Brainstorm issuesResearch factsDevelop report

Fill in formsLetters

Make appointmentGovernment body

CommissionCivic/MLA/MP

CourtMedia

Citizen Protest

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

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

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

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

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

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

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

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

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

Application

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

Advocacy Skills

Assertiveness (verbal and non verbal)

Communication SkillsAttitudeNegotiation SkillsProblem Solving Skills

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.

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

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

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

Non Verbal Assertive Skills

90% of our message is delivered through nonverbal communication (

http://web.cba.neu.edu/~ewertheim/interper/commun.htm)

Eye contact Body posture, body space Gestures Voice, tone, volume

Application

Review and role play some assertiveness techniques

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

Communication Skills

Body languageSpacePersonal appearanceHygieneAttitude

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

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

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

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

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

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

Problem Solving Skills

Identify solutionsSelect a solutionPlan your actionTake actionEvaluate and adjust

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

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?

Types of Advocacy

Self

On behalf of oneself

Obtaining informationFilling in forms

LetterAppointment

AppealsGovernment 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 memberof an agency

(Such as the Mental Health Patient Advocate)

Uses sameactivities as

a self advocate

SystemicGroup or individual wants to influence

Systems

to bring about change at a policy, institutional

or legislative levelIncludes all the citizen

activities as well as petitionsTask Forces

Legislative ReviewsPublic HearingsCommissions

Citizen

Individual/group join to address shared issues

Brainstorm issuesResearch factsDevelop report

Fill in formsLetters

Make appointmentGovernment body

CommissionCivic/MLA/MP

CourtMedia

Citizen Protest

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?

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

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.

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.

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

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

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.

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

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

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

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.

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

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;

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

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

Sources of Information

Alberta Network for Mental Health (Fellowship) www.anmhf.ca

National Network for Mental Healthwww.nnmh.ca

Self Help Connectionhttp://www.selfhelpconnection.ca

Opportunity Workswww.opportunityworks.ca