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Self-Advocacy Toolkit

Self-Advocacy Toolkit

This toolkit will give you the resources to advocate on your own behalf, or on behalf of a friend, relative or child, to achieve the result you need.

Following the toolkit’s instructions, from the first step through the last, will help you achieve your advocacy goals. Along with instructions for pursuing your advocacy goals, you will find worksheets and sample documents to help you organize your thoughts and speak effectively to your audience.

To be successful with your advocacy, you need to remain focused and persistent. Whether advocating for access to health care, workplace accommodation, access to medication or another issue of importance to you, this toolkit will be your essential guide.

The Self-Advocacy Process

  1. Identify Your Issues & Personal Story
  2. Background Research
  3. Setting Your Goal
  4. Know Your Audience
  5. Framing Your Issues & Messages
  6. Action Plan & Resources
  7. Take Action

1. Identify Your Issues & Personal Story

Identifying and clarifying your issue requires that you be able to take information and distill it down to its simplest form. Knowing your issue includes knowing who to approach to help you solve it, and how they can help you solve it.

  • Identifying and clarifying your issue
  • Discussing your issue in the context of a personal story. Your personal story or experience is the key to effective advocacy.

  • Tools

    Advocacy Worksheet [PDF] - Keep the Advocacy Worksheet with you while you go through the rest of this kit, adding to it as you learn.

  • Getting Started

    Using the Advocacy Worksheet, begin by writing down the issue. Think about the journey that has brought you to the point of making a decision to take action.

    Example:

    “My grandmother was diagnosed with scleroderma five years ago. My grandmother receives top-notch care in Toronto, but last year moved to Niagara-on-the-Lake for the better climate, and has yet to be able to find a rheumatologist in her new town. Her family doctor in Niagara-on-the-Lake is not familiar with scleroderma. As a result, my 86 year-old grandmother has kept her rheumatologist in Toronto and has to travel every two months to Toronto. This is dangerous for her, particularly in the winter months, but the appointments are absolutely necessary.”

    Determine the most important parts of your story. Distilling your story into issues that can be addressed is the foundation of your advocacy plan.

    Examples:

    1. My grandmother's family doctor in her town is not familiar her condition, scleroderma.
    2. My grandmother does not have access to a rheumatologist in her area.

    Use the Advocacy Worksheet to help you discuss your issue in a personal way. Personal stories are compelling to decision-makers of all kinds, and being able to tell your story in a clear, compelling, concise and consistent way will help your audience to understand what you're trying to achieve. To start, try to fill out Sections A and B of the Advocacy Worksheet.

2. Background Research

Once you have identified your issue, you need to do your research. Research helps you decide what you want to change, how you will go about it, and who to approach (i.e. your "audience").

Research helps:

  • your credibility and increases the likelihood of success by finding out the core facts and figures about your issue
  • you become well-educated on the impact of your issue

There are many credible sources to provide you with the information you need. Using a variety of sources and perspectives will give your advocacy both substance and credibility.

  • Possible Sources of Information
  • Information You Might Seek Out
    • Are there other personal stories that will help illustrate your issue?
    • How many people are affected by your issue?
    • What are the social or economic costs of not addressing your issue?
    • What is currently being done to address your issue? What has been done in the past?
    • What other people or groups are involved in addressing your issue?
  • Tips for Researching Your Issue
    • Enlist the assistance of librarians at your local public library to help you find and interpret complicated sources such as legislation or policy.
    • Search the Arthritis Society's website for information about your issue. The Arthritis Society's website has a wealth of information about arthritis. Use the "Search" bar, using key words, to find information relevant to your issue.
    • Online discussion forums and groups can help you find relevant information from others in an informal, chat-type setting.
    • Use tools such as quotation marks, the "+" key between your search terms and the "websites from Canada" button when using internet search engines such as Google.

3. Setting Your Goal

Determining what you want to achieve sounds easy, but don't take this step lightly. Now that you have determined your issue and have done your background research, you are ready to set your advocacy goal; that is, the clear and concise goal of your advocacy efforts.

Also known as your "ask", your goal should be the ONE goal you want to achieve. It is important that your goal is not a list of what you want, but rather the one thing you need right now. This will require a choice to be made if your issue requires multiple changes. Remember, advocacy is a process, and you can always pursue secondary goals - "first things first".

  • Determine your advocacy goal – what do you want to achieve?
  • Ensure your goal is achievable, measurable, practical and time-limited

  • Tools
  • Turning Your Issue into a Goal

    While clarifying your issue, you likely thought about the solution to your issue, or when you did your background research, you discovered how others with similar issues have achieved change. Now it's time to turn your issue into an advocacy goal. Considering your issue, what are you looking to achieve as the result of your advocacy efforts? No matter what your goal is, it should be:

    • Achievable - Make sure your goal is possible to attain and that your audience is able to do the action you need
    • Measureable - Make sure your goal has an outcome that can be shown as completed
    • Practical - Make sure your goal is realistic
    • Time-Limited - Set a deadline for your goal to guide your planning

    Examples of an achievable, measureable, practical, and time-limited goal, or "ask" include:

    • Access to Canada Pension Plan (CPP) or Employment Insurance (EI) benefits within eight weeks
    • Daily bussing to school for your child by the next school year
    • Ergonomic accommodations such as seating or footrests in your workplace within a month

    Once you have determined your advocacy goal, now fill out Section C of the Advocacy Worksheet.

4. Know Your Audience

Determining your audience is a key step in formulating your advocacy plan. Once you have clarified and researched your issue, you need to find the right person, or people, to approach. Your research should have clarified whether your issue should be undertaken with government, medical professionals, education professionals or others.

  • Determine your "audience"

Knowing your audience will help you to complete the next step, which is framing your message so that you engage the interest of your audience.  You need to know who your audience is before you can determine if they have any special interests, personal knowledge of arthritis or your issue, or if they represent a political party that has taken a stand on your issue in the past. Your audience might be your local provincial representative, your child's school superintendent, a medical specialist or your employer.

  • Is the change you seek something that affects a group of people, e.g. all teachers or all medical students, or do you just need one individual to make a change?
  • Does your issue fall within the responsibilities of the federal government, provincial government, municipal government, local school board, your workplace human resources department, or another institution, e.g. the College of Physicians and Surgeons?
  • Who has the ability or influence to make the change you are seeking?

  • Tools
  • Determining your audience
    • Use the Who's Who and Who Does What chart to determine the level of government in which your audience resides. For example, if you need to access a medication, your audience is likely your local elected provincial representative.
    • If your issue is medical, ask your family physician to whom you should address your advocacy efforts.
    • If you have an issue related to elementary or secondary school education, consult your child's teacher, vice-principal or principal for assistance in determining your audience.
    • If you have a workplace issue, consult your human resources staff or union representative.
    • In some cases, you many identify more than one audience. You can approach all possible audiences to determine who the best person is to help you with your goal.
    Once you have determined your audience, write your audience's name and contact information in the "Audience" section of the Advocacy Worksheet [PDF]. Knowing your audience will help you complete the next step of the toolkit.

5. Framing Your Issues & Messages

Imagine that your personal story "paints the picture" of what your issue means in your life. The picture that you have painted needs to be framed in a way that will help your audience to see your picture in a context that he/she understands. Remember, your audience likely has not had the same experience with your issue that you have, and needs some assistance from you to understand your story. This process is called "framing", where you develop statements, or key messages, that create a "frame" around your issue.

  • Develop your key messages that explain the essential points of your issue in simple language
  • Understand your audience's agenda and where your issue fits in
  • Present your key messages as a "win" for your audience and for you
  • Tools
    ​Use the Framing Your Issues and Developing Your Messages Worksheet to help you organize your issues, research and key messages.
  • Getting Started
    In order to know what kind of frame you need to put around your picture, you need to determine your audience's agenda, or where your audience is coming from and what matters to them. You can determine your audience's agenda by:
    • Go over your background research: Likely there is information in your research about how your audience has taken action on similar issues in the past, or what your audience's intentions are for the future.
    • Go to the source: If your audience is a local elected representative, school board or another institution, consult your audience's website for policies or positions on your issue and goal. Your audience may also belong to a group, e.g. College of Family Physicians of Canada, Canadian Rheumatology Association.
    • If your audience is an individual that does not belong to a group that has a website or public information, consult him/her directly.
  • Key Messages

    Develop your 2-3 key messages. Your key messages are the most important pieces of information that you will use to engage your audience and achieve your goal. It is critical to use accurate and current information in these messages. Each of your key messages should be:

    • 25 words or less
    • A factual explanation of the important points of your issue in simple language
    • Clear, compelling, concise and consistent

    Example #1 – Sandra needs to go to school

    • Issue: "My child has juvenile arthritis and cannot walk to school"
    • Goal: "My child needs to be bussed to school."
    • Audience: Local school trustee
    • Key Messages:
      • "Every child has the right to go to school."
      • "The school board is obligated to ensure children get to and from school safely."
    Example #2 – Phil needs access to rheumatoid arthritis medication
    • Issue: "I cannot afford to pay for the medication I have been prescribed and that will improve my condition and quality of life."
    • Goal: "My provincial drug plan needs to include my medication on the formulary."
    • Audience: Local provincial government representative
    • Key Messages:
      • "My doctor has said I must take this medication or my disease will get worse."
      • "This medication is covered in other provinces on a case-by-case basis."
      • "This medication is proven to improve the condition of those who live with rheumatoid arthritis."
  • Audience’s Agenda

    Fit your key messages into your audience's agenda.

    Example #1 – Sandra needs to go to school

    The local school board has a policy that all children with disabilities shall be provided transportation to and from school. Sandra's mother can meet with her local school trustee to ensure that Sandra, who lives with juvenile arthritis, is included in this policy and that bussing will be provided. Providing Sandra with bussing to and from school fits within the school board's mandate and policy.

    Example #2 Phil needs access to rheumatoid arthritis medication

    Phil lives in a province that does not cover his prescribed medication on the provincial drug plan.  Phil cannot afford the medication himself and does not have an employer-based health plan. Phil's local provincial representative has been working on getting the provincial drug plan to cover medications like Phil's on a case-by-case basis. Phil can meet with his local provincial representative to make sure his medication is included in the list of medications that is being advocated for inclusion, and can continue to work with his local elected representative on his goal.

    Fill in your 2-3 key messages on your Advocacy Worksheet. The next step is to put all of your work together and make a plan to approach your audience, and start advocating.

6. Action Plan & Resources

Now that you have identified your issue, done your research, set your goal, know your audience and have developed your key messages, it is time to put all of that work into action.

  • Develop an action plan to achieve your goal
  • Learn about advocacy resources

Your action plan will help you to identify what needs to be done, who needs to do it, and when it needs to be completed. To keep yourself on track, it is important to write down your action plan and update it as the process moves forward. You can use the Action Plan Worksheet to organize the steps you need to take to achieve your goal, who will be responsible for each step (if you are working with others), when each step should be completed and what resources are needed.

  • Tools
  • Advocacy Resources

    Advocacy resources assist you in achieving your goal, or the means of delivering your key messages.  Anything you develop to communicate with your audience, supporters or people outside of your advocacy effort, is a potential resource. This toolkit contains samples of some of the following resources that you may use (marked with a "*"):

    • Letter, written or e-mail*
    • Blog
    • In-person meeting*
    • Telephone call*
  • Action Plan

    Most self-advocacy goals can be met by engaging with your audience using this four-step method.

    Telephone call → Written letter → In-Person meeting → Follow-up

    However, you may not have to follow all four steps, e.g. you may choose only to send a letter or make a telephone call. The next section will explain how to use each of these resources and includes samples for your reference.

7. Take Action

The next stage of self-advocacy is to begin engaging with your audience, and continuing through the process of achieving your goal. There are many options for both making contact with your audience and maintaining that contact. The methods that you use will depend on your abilities, goal, audience, and timelines.

  • Tools
  • Engaging your audience

    Generally, self-advocacy goals can be achieved by engaging your audience using the following method.

    Telephone call → Written letter → In-Person meeting → Follow-up

    Sometimes, only one of these methods needs to be used, or perhaps two of the three. Just remember that no matter what method, or combination of methods you choose, you should always follow-up with your audience.

  • Telephone Call

    Make an initial telephone call to your audience to request a meeting. Explain your purpose for the meeting, and make sure to be clear about who will be attending. You can use this Sample Phone Call Guide [PDF] to use for this call. This is not required if you are only planning to send a letter or e-mail.

    Hazards:
    When you speak on the phone to someone in your audience's office about your goal, you may be passed around or get a voice mail message. Be persistent and make sure you speak to someone who is capable of scheduling a meeting with your audience.

  • Written Letter

    You may choose to write a letter to achieve your goal. Sometimes, a letter is all that is required!  The Written Letter Format document is a tool that will help you to organize your issue, research, personal story and key messages into a letter format to achieve your goal. Remember to follow-up with your audience within two weeks of sending your letter. Letters should be e-mailed, but can also be sent by mail, faxed or hand-delivered. You can use this Written Letter Format [PDF] guide or Forms of Address [PDF] chart for how to address your letter properly.

  • Written Letter (to get a meeting)

    The purpose of writing a letter is to get a meeting with your audience. Follow-up your call with a written letter repeating your purpose, goal and key messages. The written letter is good practice for stating your goal and key messages clearly and succinctly, and is an excellent foundation for the next steps. Letters should be e-mailed, but can also be sent by mail, faxed or hand-delivered. You can use this Written Letter Format [PDF] guide or Forms of Address [PDF] chart for how to address your letter properly.
    Hazards:

    • Regardless of how you send your letter, make sure to follow up by telephone and/or e-mail persistently but respectfully until you get a meeting scheduled.
    • You may be offered a meeting with someone other than your audience. Generally, you should take these opportunities, but continue to pursue the person you need to see.
    •  A "NO" is not an option. Remember, you are entitled to have your goal addressed by the person who can do something about it.
  • Meeting Face-to-Face

    For most advocacy goals, a meeting with your audience is recommended. Face-to-face meetings ensure that you receive the full attention of your audience, and you have the opportunity to tell your story fully and for maximum effect. A face-to-face meeting also enables you to engage in a conversation with your audience.

    You may wish to bring a family member, friend or colleague with you to your meeting for support and to have a second opinion on how the meeting went. Having a support person can help you organize your thoughts prior to the meeting and assist you in any follow-up work that needs to be done to achieve your goal. Perhaps most importantly, a support person can help you to remain calm and relaxed in an unfamiliar or intimidating environment.

    Preparing for your meeting:

    Know how long the meeting is scheduled for and develop an agenda with an established goal and that is appropriate to the length of the meeting. You can use this sample meeting agenda [PDF].

    • Review any information about your audience
    • Review your issue, goal and personal story
    • Plan on taking someone with you and make sure you decide  when each person will speak, leaving time for your audience to speak
    • Try writing out the version of your personal story that you want to deliver, and practice telling it with friends or family members

    Before your meeting:

    • Send your agenda ahead of time, along with any material you want your audience to read, e.g. a fact sheet or related information
    • Advise whom you will be bringing to the meeting, and ask for information about who will be attending with your audience
    • If possible, gather information about other meeting participants (other than your audience)
    • Contact the person you are meeting with 1-2 days prior to confirm

    At the meeting: 

    You can use this step-by-step Sample Meeting Agenda [PDF] guide to conduct your meeting.

    • Arrive at the meeting 10 minutes early
    • Stick to your agenda and remember your goal
    • Be passionate and respectful, not argumentative or confrontational
    • Pay attention to body language, yours and theirs
    • Provide specific examples with specific solutions, if applicable
    • Take notes; this can be done by the person accompanying you
    • Leave behind any appropriate material
    • Thank them for their time and indicate when you plan to follow up

    After your meeting:

    • Send a Thank You Letter [PDF] to the people you met with, and include any follow up information that your promised to gather
    • Follow up again in a couple weeks to see if there has been any progress on the issue, including any commitments made by both you and your audience in your meeting
    • Continue to follow up at regular intervals for progress reports
    • Be persistent, but respectful