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By Suzanne Ripley

What kinds of groups are there?

Parent groups vary on the basis of what binds them together. There are groups of parents whose children all have the same disability. There are groups whose members are all involved with the same school or same program in a school. There are groups whose members all live in the same geographic area or who all want to learn more about the special education process and the rights of their children. Parent groups are also formed based upon specific goals members would like to accomplish. In general, the goals of parent groups are to obtain direct services for children, mutual support, training, advocacy, and communication.

For example, a group may be formed to fill gaps in services. A parent group may establish a child care program for young children with disabilities or open a group home for young adults seeking more independence. Organizations like Parent-to-Parent (this group has many different names in different localities) are useful for parents who are looking for understanding and practical ideas about raising a child with a disability. Such groups connect parents with another family whose child also has a disability. Groups whose focus is advocacy organize families to help ensure a free appropriate public education and equal opportunities for children and youth with disabilities.

Many groups provide parent training that can help parents expand their skills in raising a child with a disability. This training may be in such areas as: understanding the special education system; behavior management; self-help skills (such as toilet training or mobility); working with medical experts; identifying and accessing community services; being your own case manager; and/or learning to access and use adaptive technology effectively.

Some groups have local, state, regional, and/or national offices with sizable membership lists. Some groups may have as few as three members, but this can still be a workable group. There are groups that are run entirely by volunteers and have no income other than possible membership dues. There are local groups that have applied for and have received federal, state, or private funding to help pay for staff time, training, development of materials, printing, mailing, and maintaining a post office box or office.

There are large organizations with a full staff of paid workers and budgets that allow for national publications and annual conferences. However, it is not size that determines a group's effectiveness. All groups can play an essential role in providing information and family support and in addressing issues in a collective voice.

How do I find out about groups in my area?

You can begin by contacting the National Information Center for Children and youth with Disabilities at their website and reviewing their 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 referral.

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