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PARENT'S GUIDE: How do we start a group? There are basically two ways to start a parent group. You can either affiliate with an existing organization -- that is, become a local chapter of a larger association -- or you can start a new group. How do we affiliate -- and with which group? Once you have answered the questions above, you should be able to match your group's goals and needs with existing organizations. For example, if your group's goals are to provide information about the special education process to parents and offer training on topics such as writing effective IEPs, then you might want to affiliate with a Parent Training and Information Center. Parent Training and Information Centers, or PTIs, exist in every state under a variety of names. This information is on the NICHCY State Resource Sheet. PTIs are federally funded and offer parent/family training in special education issues, as well as a variety of other services in each state, including information and referral to state resources, newsletters, advocacy services, conferences, and technical assistance to other groups. If you have identified your group's goals as providing mutual support by getting families together to talk, then you might find it beneficial to affiliate with Parent-to-Parent. Perhaps your members all have children with the same handicapping condition; in this case, you can affiliate with a national disability association that matches your needs, such as the Learning Disability Association. (Remember, it's useful to think in terms of your child's needs, rather than the specific disability label he or she has been given.) To identify existing organizations in the state or nation, you would follow the same steps as were outlined under the question above, "How do I find out about groups in my area?" Use the NICHCY State Resource Sheet, contact a variety of organizations or people such as social services departments or the special education staff at local schools, ask the PTI in your state, or look in the phone book under the specific disability or under Disability Services or a similar name (often listed in the phone book in the pages devoted to state and local government). When you have found a group whose goals and activities are similar to what you'd like to do, contact the group and ask how you would go about affiliating with it. If this group is itself a state or local affiliate of a national organization, ask how you join with the national office. Talk to representatives of the group about assistance they can offer in setting up your group, in getting subscriptions to relevant publications, about possible speakers and/or local experts, and about other related resources in your area. This is your first networking activity. What if we decide not to affiliate? Even if your search does not result in a decision to affiliate with an existing organization, it will be useful to have contacts in the disability field with whom you can network. Any established organization, regardless of differing goals, members, or needs, may have people who can help you organize your group. For example, the Parent Training and Information Center is usually an excellent source of assistance in establishing a disability group. In the same way, any specific disability group will in many ways be structured like other disability groups. You can model your organization after others and profit from their experience. Similarly, there is no need to duplicate work that has already been done. Another group's information on such topics as disability issues, school policy, state and federal legislation, recreation, summer camps, technology, or parent/professional relations may be useful to your group. Make use of information packages, training materials, and newsletters of interest to your group members, so you can concentrate your resources on those unique, unmet needs you have identified. You
may be forming a small and informal group. If, for example, seven
families have decided to meet in their homes, then no formal organization
may be needed. You may decide to start a small group that meets
informally, has no dues, does not choose officers, and needs no
office or post office box. Your group may be successful and small,
or it may grow and change its organizational structure.
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