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A Parent's Guide: Accessing Parent Groups

by Suzanne Ripley



National Information Center
for Children and Youth with Disabilities

Part 2


Learning and Other Disabilities

Related Articles

Rights and Responsibilities of Parents of Children With Disabilities

The Teacher's Role in Developing Social Skills

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.

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.


Project Staff

Project Director: Susan Elting
Deputy Director: Suzanne Ripley
Editor: Lisa Kupper
Author: Suzanne Ripley

This document was originally developed in June, 1993 by Interstate Research Associates, Inc., pursuant to Cooperative Agreement #H030A00002 with the Office of Special Education Programs of the United States Department of Education. The contents of this document do not necessarily reflect the views or policies of the Department of Education, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.

The updating of resources listed in this document and the document's availability through the Internet were made possible through Cooperative Agreement #H030A30003 between the Academy for Educational Development and the Office of Special Education Programs of the U.S. Department of Education.

The Academy for Educational Development, founded in 1961, is an independent, nonprofit service organization committed to addressing human development needs in the United States and throughout the world. In partnership with its clients, the Academy seeks to meet today's social, economic, and environmental challenges through education and human resource development; to apply state-of-the-art education, training, research, technology, management, behavioral analysis, and social marketing techniques to solve problems; and to improve knowledge and skills throughout the world as the most effective means for stimulating growth, reducing poverty, and promoting democratic and humanitarian ideals.

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