After a group has been started, you need to think about how to keep the group going. All groups have “ups” and “downs.” All groups will have problems at times. One of the most important things to keep a group going over time is to face problems head-on. Problems don’t just go away on their own—you have to face them head on and try to work them out. When your group has problems, remember to give people a chance to grow and change.

Most people have never had the experience of being part of a self-advocacy group where they get to make the decisions and solve problems on their own. Sometimes, it is hard to be a self-advocate, and people need time and understanding to work out problems and grow as a group. Below are the ideas that the conference participants came up with on how to support a self-advocacy group over time and keep it going.

  1. Make the discussion in the meetings real. By real, we mean that the discussions must be about things that are important to the members. Each group has to decide what is real and important to them. If you keep the discussions real, and on things that are important to the members’ lives, then people will want to come to the meetings and take part.
  2. Always have officer meetings. Officer meetings are a good time to learn about leadership, talk about and solve problems the group is having, and work with the advisor. If an advisor does a good job in the officer meetings, then the officers can run the membership meetings on their own. An officer meeting should be about one week before membership meetings, to give people a chance to learn and practice their duties and to make sure everything is ready for the membership meeting.
  3. Set up some committees when you plan to do things. Committees are a good way to get everyone involved, plan things, and get things done. Committees give everyone a chance to have responsibilities and feel like an important part of the group.
  4. Make sure there is a place and something for everyone at the meetings. It is important for everyone to have something to say at the meeting and a way to feel that they are an important part of the group. The best way to keep people involved is for everyone to have an important part in the group.
  5. Plan some fun things together. Don’t make the meetings all “hard work.” Go out and eat together, go on a camping trip together, do fun things together. Find things to do together that build “team spirit.” Don’t let the meetings get boring

In starting and supporting a self-advocacy group, it is important for the members to learn and use a process for working together and getting things done. It is also important for self-advocates to be responsible for teaching others the process, to assume leadership roles, and to be in control of the goals that the group develops by working together. During all of this, the self-advocacy group must be able to include people with a wide range of disabilities so that everyone can participate and be a valued group member.

Starting and supporting a successful self-advocacy group is a process that takes lots of careful planning and thinking. Members and advisors must work together to establish a strong foundation so the group will continue to grow stronger. Below is a list of steps that self advocates and advisors typically use and go through in order to have successful self-help/self-advocacy groups. Some of these processes are described by Norsman in Patterns of Participation, and others have been identified by self-advocacy groups as they have started up.

For further questions contact us at
Frank Latham –

Program funded by the West Virginia Developmental Disabilities Council
912 Market Street ● Parkersburg, WV 26101 ● 304-422-3151 ext 106 ●

Norsman, A. (n.d.). Patterns for Participation. Madison, W.I.: Wisconsin Association for Developmental Disabilities.
Reinforce. (Producer) (video-tape) (n.d.) Don’t Think I Don’t Think. Melbourne, Australia.
Rhoades, C. (Producer) (1985). Speaking for Ourselves: A video-tape series on how to start up and run self-advocacy groups for persons with developmental disabilities. Owings Mills, MD: Hallmark Films and Recordings