By Suzanne Ripley

Families with a child who has a disability have special concerns and often need a great deal of information: information about the disability of their child, about school services, therapy, local policies, funding sources, transportation, medical facilities, and much more. Many families find it very useful to join a parent group, where they can meet other families with similar needs. Parent groups can serve many purposes, but primarily they offer parents a place and a means to share information, give and receive emotional support, and work as a team to address common concerns.

There are many different parent groups, and their activities vary, depending on the group's focus and goals. Typical activities might include: providing mutual support and new friendships, distributing information and/or newsletters, creating a family resource center, arranging for speakers on topics of interest, and setting up babysitting coops or respite care provision. Many parent groups also allow families the opportunity to speak in a unified voice to express the needs and goals of a special interest group not often well represented in the school and community.

An important function of nearly all parent groups is to introduce families to others like themselves, who can provide much needed information and emotional support. When families with similar concerns meet, there is a sense of community, of understanding; you create a place where you can laugh about the same things, where you can discuss the same problems, where you can help each other. Where else can a parent find out which local dentists are good with children who don't sit still, where to buy specialized clothes, toys, or equipment, how to help a teenager find a summer or after-school job, or how to fill out a social security application?

This Parent's Guide will help you identify the parent groups that exist nationally and in your state and community. It will also help you decide which group or groups would be useful to you in meeting your family's needs and concerns. If no such group exists in your community, this Guide provides many suggestions on how to start your own group.

What are parent groups?

Parent groups are, very basically, a group of parents (or grandparents, aunts and uncles, siblings, foster parents -- anyone who is raising this child), primary caretakers, and sometimes other family members who are concerned with disability issues. Some parent groups also include members who are not parents of children with disabilities, such as educators, medical professionals, social services people, policymakers and others interested in the same issues. For the purposes of this discussion, the term parent group will be used for all groups serving the needs of families of someone with a disability, however diverse their membership may be.

What sort of help can parents really offer each other?

There are many ways in which parents, as a group, can help each other. For example, parent groups can provide parents with information on medical or educational services, programs, and other resources available within the community, county, state, or nation. The group can invite speakers who are experts on a wide variety of topics to speak at their meetings, or produce a newsletter concerning local services, events, school policy, and state policy. This information is invaluable for "new families" who have just learned of their child's disability and continues to be useful to families as their needs change through the years.

Within the group, parents can also be open about their fears and concerns. There is a great benefit in learning that there are other families going through the same kinds of situations. Families join parent groups to end the sense of isolation their unique situation can create. Often, families in atypical situations find that traditional sources of help are unable to understand their particular needs or to help them solve problems. By expressing their concerns and problems to other parents, families can get reactions and advice from others who may have experienced similar situations or needs. They can share the daily coping techniques that help keep families together, as well as tips that can make life run more smoothly. Parents can help each other to renew their spirit, determination, and enthusiasm for life. Being able to discuss concerns with others in the same situation can bring about realistic, pragmatic solutions and is often exactly the support families need.

Parent groups also serve other important needs and offer several advantages. For example, as a group, parents can form a united voice like any other special interest group. In this united voice, they can then present their concerns to school administrators and community leaders.

Note: This publication is approximately
10 pages long when printed.

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