ACCESSING PARENT GROUPS
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.
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.
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?
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.
are parent groups?
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.
sort of help can parents really offer each other?
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.
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.
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.
This publication is approximately
10 pages long when printed.