A Parent's Guide: Accessing Parent Groups

Part 2

Source

National Information Center
for Children and Youth with Disabilities

Forums

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How do I find out about groups in my area?

First, look over the attached NICHCY State Resource Sheet. State parent groups will be listed and can refer you to groups in or near your community. (If you don't have a State Resource Sheet, contact NICHCY at 1-800-695-0285 and ask for one.) If a group exists in your area, contact them for more information about their membership, goals, services, and meeting times.

You can also contact a variety of other organizations and ask for information about and referral to local parent groups. For example:

• Talk to the special education staff at the local schools (both public and private) and preschool and early intervention program staff.
  
  
• Talk to social service departments at children's hospitals.
  
  
• Talk to vocational rehabilitation counselors and the staff at independent living centers or group homes.
  
  
• Look in the phone book under either the specific disability or in the yellow pages under Disability Services.
  
  

Don't overlook general parent groups in your child's school or in the community. The PTA (or PTSA) usually has a voice in overall school activities. Local advisory boards and commissions may also be actively involved in issues of importance to your family.

You may find groups which have been established to meet the needs of children with a disability different from your child's disability. However, if this group is concerned with similar issues, it may still be of great use to your family. For example, if your child has mobility difficulties due to a head injury, a group focused on spina bifida might meet your needs, too. Even though the disability is different, the members of the spina bifida group are also concerned about mobility, accessibility, inclusion in school and community programs, and socialization opportunities for their children. They may have speakers talk about IEP development, related services, accessible playgrounds, public transportation, and the like, which are also of interest to your family. It is what the group does that is important, not what it may be called.

When you talk to any organization, be sure to ask for the names of other organizations concerned about similar issues. They tend to know each other and can be excellent sources of r referral.

Should I join one of these groups?

When considering membership in one or more parent/disability groups, it is helpful to review your personal needs. Are you looking for moral support or advocacy training? Do you want to get to know other families who have a child like yours? Do you need a course in sign language or a play group for your three-year-old? Are you interested in hearing speakers on special education and disability topics? Are you interested in becoming involved in local decision-making processes for school and disability issues? Would you like to receive a newsletter on disability topics?

The answers to these questions may help you decide which, if any, group you should join. You may need to join only one group (such as the local chapter of national parent group such as United Cerebral Palsy Association or The Arc) to get all the information you need. Or you may need to join more than one group, if you have more than one need or interest. For example, you might wish to join a national parent group and a local preschool parent group. The national parent's group may provide you with a newsletter concerning local, state and national issues. The preschool parent group, on the other hand, may have established a child care co-op and hold birthday parties for each of the children. The goals of these two groups are different, but together they may meet the variety of needs you have identified for your family.

Ask yourself, what kind of a "joiner" are you? Are you more comfortable with formal organizations or do you prefer less structure? Consider the types of groups around you and decide where you would feel most comfortable. In the process of exploring parent organizations, remember that you can always attend one or two meetings before agreeing to join. If you are interested in joining but can't afford the dues, most groups can offer reduced fee memberships or free membership to those who need it. These are all people who can understand unique situations; talk to them about any special arrangements you might need to participate. Also remember that sometimes the best way to get involved with a new group of people is to volunteer to take an active role in some activity. By being a participant you will meet other members and learn more about the goals and functions of the organization.

What if there isn't a group in the area that meets my family's needs?

Many times there is no local group that meets your family's needs. While it may always be worthwhile to join a far-away group to get its newsletter or other information by mail, you may still want to have a group of local people to work within your community to address the needs you have identified. When the need for a group is identified, and there are people who want to see such a group in their area, then it's time to get together and start your own organization. This takes work, but it can certainly be done.

How do we decide what kind of group to form?

Start by answering these questions.

• What is the primary purpose of this group?
  
  
• What other purposes are there?
  
  
• What schools, disabilities, age groups, and geographical areas would you cover?
  
  
• Who would join this group?
  
  
• How will you communicate with or reach these people?
  
  
• What is the underlying philosophy of the members?
  
  
• What are your goals for this year? Can you list them in order of importance?
  
  
• When do you want to meet?
  
  
• How often do you want to meet?
  
  
• Where do you want to meet?
  
  
• Who will lead the meetings?
  
  
• Will you need to raise any money and charge dues or solicit contributions?
  
  

In answering these questions, you may think of additional questions, but this list should certainly get you started.

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 which 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.

What do we need to do to start a new group?

Once you have considered these questions and talked to others about your group, its goals, and your ideas for issues to address, it's time to actually get started. Here are some general guidelines. Again, you may add any number of additional activities of your own or tailor these suggestions to meet your needs.

Determine leadership. Who will conduct the first meeting? Will you have officers, will you elect a leader, appoint a leader and get group approval, or elect several officers?

Develop an agenda for the first meeting. You may want to start informally and offer participants a change to get together to talk or you may want to devote the first meeting to organizational issues. Do you want to invite a guest speaker, show a video, or combine the meeting with a social event? Be sure the agenda is specific, goal oriented, and short enough that you can comfortably get through all items listed.

Arrange for the place of the meeting. Pick a convenient location that can comfortably hold the maximum number of people you expect to attend. This does not have to be a permanent meeting place, but pick some place easy to find. Be sure this place is accessible to individuals with disabilities; set a good example!

Invite guests to the meeting. Do you want to control who is coming to this meeting or open it up to the public by advertising? You may wish to post notices in places like schools, doctors' offices, libraries, the recreation center, or other locations where your prospective members might see them. The local newspaper may have a section that announces local meetings; call the paper and find out how to access this.