ACCESSING PARENT GROUPS
By Suzanne Ripley
kinds of groups are there?
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.
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.
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.
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.
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?
can begin by contacting the National Information Center for Children
and youth with Disabilities at their website www.nichcy.org
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
can also contact a variety of other organizations and ask for information
about and referral to local parent groups. For example:
to the special education staff at the local schools (both public
and private) and preschool and early intervention program staff;
to social service departments at children's hospitals;
to vocational rehabilitation counselors and the staff at independent
living centers or group homes;
in the phone book under either the specific disability or in the
yellow pages under Disability Services.
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.
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.
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.