How to Start and Run a Self-Help Group

These guidelines were formerly linked at http://www.stutter.ca/runself.html That link no longer works and were found again in the web archive at http://web.archive.org/web/20080109115255/http://www.stutter.ca/runself.html The Guidelines include the following disclaimer and were re-copied below with gratitude for the CSA's willingness to share them.) "Readers are welcome to copy, adapt, and distribute these guidelines. If the guidelines are distributed, we request that a statement would appear in the text indicating that CSA has developed them for use by any groups who have an interest in using them.")


How to start and run a self-help group
by the Canadian Stuttering Association

How does one go about initiating a self-help group? In our work with CSA (Canadian Stuttering Assocation) and other groups, we have often been asked this question. Some good suggestions are available from the National Stuttering Project and the British Stammering Association.

In addition, CSA have suggested the following points for consideration:

1. It is useful to schedule the dates of meetings for the entire year. Send out a newsletter to publicize the schedule and report on meetings. It is also a good idea to have a person call members to retnind them of meetings. In fact, it is a good idea to have members call each other on the phone between meetings or even to arrange for conference calls, by phone or Internet video, as a way to practice speech skills and keep in touch.

We suggest that the group be open to anyone who has an interest in stuttering, including parents who wish to attend with their adolescents.

2. Ensure that all members have a sense of 'ownership' of the group, allowing each member to feel it is 'their' group, and that their ideas and input are fully taken into account when the group determines how it will operate. This will help to ensure that the group survives after the founding members are not active.

3. Although it may initially be necessary to meet in members' homes, it would be more convenient to arrange for a permanent meeting place. It is often possible to arrange for meeting space at local Universities or Clinics. This type of arrangement can lead to a variety of innovations to the standard meeting including changing the meeting room to avoid automatic fluency as a response to the setting.

4. It is useful to have one person perform the role of official leader or coordinator of the group meetings, while all of the members have an equal voice in the running of the group.

We have found it useful to have each member lead two or three meetings in a row. In this way everyone gets practice in a leadership role and is also able to organize meetings in the way they think will work best. Often, a person who has run meetings previously will help the next leader with organizing of the next meeting.

5. From the start, we adopted the principle that every person will speak roughly the same amount of time at each meeting. That is part of the process of establishing that all members have ownership of the group.

It is also our policy that abusive comments or statements are not tolerated, in order to establish a feeling of safety within the group.

6. A typical meeting begins with an optional practice session of about 30 minutes. Because we have people who have taken different forms of treatment, as well as people who have not had treatment, we have found it useful to have a kind of 'generic' practice instead of one based upon a particular program.

We begin with a group warm-up which gradually increases the length, complexity and rate of speech in a reading task.

Following this, a person who has been through a treatment program may conduct a brief 'mini-lesson on a technical aspect of the practice routine - e.g., on the need to let out a bit of breath before starting voicing. Please understand that we do not claim to offer therapy and encourage people to explore all treatment options available to them without bias.

While our Toronto group is run entirely by people who stutter, we welcome speech- language pathologists who would like to attend meetings as observers, or who would like to collaborate with us in organizing of practice sessions. It is our policy, however, to administer our group without direct imput from speech professionals.

7. Although being monitored is optional , we identify the speech skills each person would like to have monitored at the start of each meeting. Each person in the group receives index cards with the skills being monitored on them. If the speaker does not use his identified target or fluency skill, then everyone waves their cards as a reminder. That is called 'getting flagged' for not using the skill. Monitoring can take place in unstructured speaking situations including the coffee break.

8. Although each participant is invited to talk about how the past few weeks have been in terms of their speech, it is not required that everyone speak~

9. The leader for the day then introduce structured activities. A typical activity might involve 'table topics.' One of my favorite activities, if I am a leader, is to choose words at random from a newspaper, or out of my head, and write down each word on a piece of paper. Then when a person's turn comes to speak, they pick up a card and speaks for (say) three minutes on that topic.

We might then go around the room and ask for comments or question from each participant, with an emphasis on positive comments. Following this, the person who spoke typically talks about how it felt to make the presentation, and reflects on the comments from all the listeners.

10. At other times we might have debates, or informal, spontaneous discussions where people have to interrupt to take a talking turn . Even in these discussions, however, the leader would typically ensure that everyone has the opportunity to speak.

11. Some groups use Speaking Circles at meetings. The National Stuttering Assocation (NSA) has more information about this format, which has also been used successfully in Britain. Some of the benefits are that each person gets to speak for an extended length of time at each meeting, about something meaningful to them

It has been our experience that meeting which are structured have better expectancy outcomes for its' members.

12. It is been my experience that it is important for volunteers to maintain balance in their lives, so that they attend to their personal lives, their careers, and their volunteer work. This requires skills related to time management. It is important that individual members have a strong sense of ownership of the group in order to insure that the necessary work will be shared by the majority of members.