This guide is intended to assist committee chairs within BCACL, and others, with planning self advocate involvement. The most crucial principle though, is to remember that every self advocate has his/her own interest, needs and skills. In planning support, the starting point must be to consult with the self advocates and to respect their right to choose what form, if any, support will take. This will also ensure that the talents and expertise each self advocate has to offer will be used effectively.
It is also critical to remember that all of this takes time. There is no quick way to create meaningful participation. Instead it requires commitment to the process and willingness to challenge the boundaries of what we think is possible.
From our experience we think it is important to make sure two self advocates, if possible, are asked to sit on a committee because of mutual support as well as avoiding "tokenism".
Recruitment
1. Before you begin meeting with self advocates consider what kind of contribution you want for your committee: how much involvement is needed; what special skills would complement your existing committee; what role do you need someone to play? Then you can approach self advocates with specific information about your committee’s needs.
2. Locating interested self advocates can sometimes be difficult. Try to avoid asking people who are already extensively involved; extend the network instead. Pairing self advocates with other committee members who have similar interests is a helpful way of providing support, especially for those who are new to committee work.
3. When meeting to discuss potential involvement with a self advocate, clearly define the role of your committee - what it does and does not do. Review the annual work plan of the committee to clarify the current focus of work. Helping the self advocate define particular areas of interest will enable that individual to have a clearer sense of purpose of his/her participation.
4. Put the notes from your meeting in plain, simple language so that the self advocate has something to refer to after you have met. Many people cannot remember all of the details after a meeting. Putting it in writing helps reduce confusion. Indicate the expectations in terms of time and length of commitment, as well as outlining some of the responsibilities of a committee member, such as liaison with other groups and gathering information. Transferring the notes and any other documents of the meeting onto audio cassette tape is useful for self advocates who have literacy needs.
Building Supports
1. Travelling to and from meetings will be new to some self advocates, so assistance in making travel plans, managing a travel advance, finding a traveling companion and organizing accommodation might be necessary. If s/he has to stay overnight, check to see there are things that s/he has to do in non-meeting times. Being alone in another town or city can be a bit overwhelming.
2. Ensure that self advocates are included in any social gatherings that are part of the meeting. This type of inclusion is very important to self advocates since it is in social settings that many have experienced the more subtle forms of exclusion. In addition, discussions of issues that occur in social settings often provide the basis for decisions made in meetings. Informal participation is perhaps even more critical than formal participation in ensuring that self advocates play an integral role.
3. Be sure to explain travel advances, expense forms and any guidelines for claiming expenses. Ask the treasurer or accountant for assistance if you are not sure yourself.
4. Provide the self advocate with appropriate phone numbers in case there are problems or questions they need assistance with. It would also be helpful to identify a specific contact person who can provide support if the self advocate needs it.
5. Some self advocates will be interested in having a specific support person to help them participate more effectively. Committee chairs should assist with selecting and orienting this person. Support persons can play a variety of roles from direct participation in meetings to assistance with managing written materials received at home. It could be another committee member, including another self advocate on the committee, who has a grasp of the work, or a friend/associate in the self advocate’s life.
Utilization of Self Advocates' Skills
1. In order to make effective use of the talents of self advocates, it is important to get to know them as individuals. Many self advocates will not be able to identify their real talents since opportunities to explore them have often been fairly limited. There are several ways of expanding their knowledge and enhancing the work of your committee at the same time.
2. Discuss with each self advocate the skills that s/he likes to use. Some people like to organize information for a meeting, someone else enjoys phoning and others like speaking to various groups of people. For instance, some self advocates are great speakers when it comes to talking about issues in their own lives; or their own life story. This can be an excellent way to involve self advocates in workshops, conferences, or representations to government. Independence is inspirational for many people who have had limited contact with self advocates. Remember that it takes time to understand where someone can be most effective.
3. Make it a basic rule of your committee that whenever you do a presentation, self advocates will actively participate. This requires some planning to ensure that the participation is not token but will enhance the quality of your work and add a dimension that cannot be communicated by anyone who does not live with a developmental disability.
4. Define some specific tasks that self advocates can undertake. Perhaps s/he could consult with other self advocates about a particular issue that your committee is dealing with. Are there any issues of particular concern that the self advocate could present to your committee? Do you need some packages of information put together? Some people will prefer very concrete organizational tasks so their skills and abilities need to be utilized in these areas. Again, remember that it will take time and energy to define the most meaningful role for each person.
Pre and Post Meeting Support
1. One of the most frequent requests made by self advocates is a pre-meeting review of the agenda and of the issues to be discussed at an upcoming meeting. This can happen in person just prior to a meeting and could include other committee members. Chairpeople may wish to delegate this responsibility to another committee member or a staff support person but should ensure that it happens. A briefing could also happen over the phone 2-3 days prior to a meeting if this is more convenient or useful to the self advocate.
2. Plan extra time for a briefing if a new, major issue is arising to ensure that self advocates can get a good, basic understanding of the issue at the beginning. This will also help ensure that the perspective of people with developmental disabilities will be reflected from the outset instead of trying to incorporate it later on.
3. Make follow-up phone calls with self advocates between meetings. This will help you and them stay in touch. Phone contact will ensure that they don’t miss crucial information and will create a stronger sense of "connectedness".
4. Debriefing after a meeting is also very important for self advocates. They need an opportunity to clarify their understanding of decisions and outcomes especially if they are responsible for any follow-up actions. It will also give committee chairs a chance to see how effectively the committee is responding to self advocate participation. Pairing self advocates with other committee members could be helpful with debriefing.
5. Many self advocates have indicated a concern with feeling "faceless", never getting a chance to talk about themselves and what they are doing in their own lives. Take time to talk personally - it is a great opportunity to find out about people’s hidden talents.
During Meetings
1. Summarize each issue and any follow-up action to be taken at the end of discussion.
2. Ask direct, specific questions if possible rather than open-ended questions. Most people find the former easier to respond to. Interview style questions that help draw out self advocates is another suggested way that has proven to work.
3. Give self advocates time to respond to the question as it may take a couple of minutes to formulate an answer. A helpful tactic is to ask the person if they would like a bit more time to think about the question and come back to him/her in a few minutes. Do not allow any one else to answer for the self advocate unless the self advocate has agreed to it. For instance, s/he may have discussed a response prior to the meeting with a support person and the support person can indicate what the self advocate had wished to say.
4. When considering a motion, ensure it is clearly stated before the vote is taken. Make sure the self advocates are clear about the intent of the motion, what a "yes" means and what a "no" means. This is usually helpful for other committee members too.
5. Whoever is chairing the meeting should pause every 10-15 minutes to check that the group is following the discussion. Asking if anyone is confused or has questions are safe, non-threatening ways of creating opportunities for people to indicate their lack of understanding.
5. Use clear, simple language. Avoid acronyms unless you’ve got a list explaining them.
6. Make eye contact with people. Many self advocates concentrate on visual cues to aid in interpreting discussion. This is also invaluable to people who are deaf or hard of hearing.
7. Make a point of appreciating the self advocates’ contributions. This will encourage people to feel more comfortable with expressing their opinions. Again, this holds true for any committee member, not just for self advocates.
8. Interrupt if someone is off-topic. You can do so by clarifying the issue or point being debated, and indicating a more appropriate place on the agenda to discuss their concerns or offer to talk about personal matters outside the meeting. Be sure you follow through. On the other hand, when the topic of conversation shifts during discussion of an agenda item, identify the shift so that all committee members can follow discussion.
9. For some self advocates, taping the meetings so they can listen to it later has been valuable.
10. Take time. Don’t be so concerned about getting through the agenda that understanding gets lost. If your meeting is going to last for 3-4 hours, take a couple of breaks so people can remain alert.
11. Provide a clear summary at the end of the meeting indicating what actions will take place as follow-up and who is responsible.
Minutes and Mailouts
1. Send a covering letter or tape with mailouts. It should identify which materials are most important to consider. Try to suggest a couple of questions or points the self advocate could think about after reading the material.
2. Use tapes if the self advocate feels they would be more helpful than written materials of minutes.
3. Create an action/follow-up page for minutes. This should summarize what actions will happen and who is responsible for doing them.
4. Indicate which items are confidential. Make sure self advocates understand who it is appropriate to discuss confidential material with.
5. Make sure information to be discussed at meetings gets out to self advocates well in advance of the meeting. This is especially important if a new issue is going to be raised.
6. Ensure mailouts are done ahead of time and follow-up occurs very close to the meeting date for those individuals who may have memory problems.
7. If pictures and/or other plain language materials are available, they can enhance understanding of mailout materials.