National Spinal Cord Injury Association Resource Center
Factsheet #18:
Starting a support group or a discussion
group
We frequently receive calls for information on local
support groups. Although there are thousands of people
with all over the US, there are not always support groups
for those that want them. Support groups provide a
valuable service not only for counseling and support, but
also for socializing and information sharing. "Old
timers" have information to share with newer
injuries, and groups have more influence with vendors or
medical professionals to present information and
products. If there is not a support group in the area,
people frequently ask how they can start one in their
area. The process of beginning a support group can
initially seem daunting, however, it is easier if we
break it into little pieces -- what I call the five P's:
People
Planning
Place
Publicity
Programming
Step One - People
After you have decided that you want to start a
support group, identify two or three persons who share
your interest in starting (not simply joining) a support
group. Although it is possible to run a support group by
yourself, you it is easier and you reduce the chance of
burn-out if you have other people assisting you. If one
of the people assisting you has a computer, that is an
additional benefit, as they may be willing to maintain
the mailing list, make flyers and print minutes and
notices.
You also need to have an idea of how many people want
a support group. Is there a group who have expressed an
interest in meeting for support? Is there a concentration
of people with SCI in one area? A feel for the
demographics will affect not only who you have in the
group, but where you meet and even what will be the
group's emphasis.
Who can Attend You have to decide who can attend the
meetings. Do you want the group to be only for people
with SCI and spinal dysfunction, or can individuals with
other disabilities attend. Another very important
decision is whether you want the meeting to be only for
people with disabilities, or also for family members and
friends. Many times, people with disabilities will want a
place where they can talk about their own issues without
family around. Of course, family members have their own
issues and they may want to speak about them without the
person with a disability around. Possible solutions are
to have 2 separate meetings, one for individuals with
SCI, and one for family members. Another solution is to
open the meeting to family members every 3 months. Of
course, another option is not to include family members
at all in the beginning phases of the support group.
Step Two - Planning
You will need to decide quite a number of things
before the first meeting of your group, such as the
frequency, location and emphasis of the group.
Decide how often your group will meet (NSCIA support
groups must meet at least once a month.) If your group
meets less often than once a month, it runs the risk of
losing momentum and focus; interest may die out in the
long weeks before the next meeting. Some groups may have
the interest to meet more than once a month. If so, feel
free to go with the interest, but don't feel that every
two weeks is the norm. Many starting groups only meet
once a month and are quite successful.
Decide how you will get the word out. Most people will
have a list of people who would be interested in a SCI
support or discussion group. A local rehab hospital may
be willing to make a mailing to former SCI patients for
you to advertise the meeting, but don't expect them to
turn their list over to you. Many times a local hospital
may also assist with mail and photocopying costs. Other
places to advertise and solicit names are your local
Independent Living Center (ILC), and with medical supply
retailers. Don't overlook Vocational Rehabilitation.
Remember, VR counselors are always seeing people with
various disabilities, and are usually looking for ways to
educate and train their clients. Don't forget to
advertise in the local newspaper; most papers have a free
section to advertise meeting notices.
What Kind of Group? There are many kind of support
groups. Each has its own style, and each speaks to people
in a different ways. You and the other people who are
interested in starting a Support Group probably already
have the type of support group you want in mind. Major
types of support groups are as follows:
Peer Support groups. Groups led by others with similar
disabilities. Usually these groups are not led by a
professional like a social worker or rehab psychologist
or counselor. A reasonable compromise might be a
psychologist or counselor with a disability.
A professionally led support group. These groups are
led or advised by a professional like a rehab
psychologist, social worker or rehab counselor.
A discussion group. Not necessarily a support group,
but a group with an educational emphasis to them. These
groups may have a video or a speaker or topic each
meeting. These groups may also provide a time where
individuals can discuss issues of interest and concern to
them to see if others have suggestions or have
experienced a similar situation.
Step Three - Place
Decide on a central location. In many areas
transportation is a major problem. A rehab hospital can
provide a good location, as many people already know
where it is, and you will have access to large meeting
rooms as well as professionals interested in SCI. Some
people may not feel comfortable meeting in a medical
facility for personal reasons, so polling a few people
about the location is wise. A private residence with a
large room, or a clubhouse makes a good alternative, as
are church halls, Independent Living Centers, etc. The
location should, of course be accessible, with plenty of
parking and accessible via wheelchair accessible
transportation if possible. Don't forget to make sure the
bathrooms are accessible.
Some people may be tempted to have a rotating meeting
place to make the meeting more accessible to people with
transportation problems. This has benefits and potential
problems. A benefit is that some people will have at
least a few meetings in their area. This can increase the
total number of people attending throughout the year. A
potential problem is that the group becomes fragmented
because only certain people attend certain meetings.
Also, unless the meeting locations are well publicized in
advance, people may forget where the meeting is and
decide not to attend. With the same location, people
always know where to go.
Step four - Publicity
Publicity is crucial to a beginning support group. It
is important to leverage all available media (especially
free outlets). For example:
- Newspapers usually have a place to announce
support meeting and clubs;
- Radio stations do PSA (public service
announcements). Make a special effort to try for
stations that serve the population you want
(usually young males)
- TV and cable. Ditto on the PSAs, but also contact
your local community access cable channel. Many
cable channels have a scrolling marquee that
announces meetings in the area. You may also be
able to get air time on your local channel, since
many of them are in need of programming.
Make up a flier announcing the meeting. You're not
writing the great american nover here, sojust give people
the basics - date, location, time, and a brief
description of the purpose of the group. Remember, if
you're putting the flyer up in a public place you may
have only 2-3 seconds toget a passerby's attention, so
use large type and few words. Distribute the flyer to all
the people on the mailing list. Try to make a personal
visit to organizations like ILCs and hospitals so that
you post the flyer yourself. If not, then print
"Please Post" somewhere on the flyer. Again,
ask Rehab Hospitals, ILCs, and other organizaiions and
businesses to do a mailing for you.
Step five - Programming
So what will you do in your meetings? If your meeting
is strictly a support group meeting, you will want to go
around and check in with everyone and then begin the
meeting using whatever model you choose. If your meetings
will have an eduational component to them, then planning
the meetings will require additional effort. Topics for
meetings include sports and recreation (vendors are a
good source of information on the latest equipment), jobs
and housing (ask a local ILC and/or your Voc. Rehab.
department for a speaker), ADA training, etc. Your local
rehab hospital is also an excellent resource for medical
information, if members express a desire for that. Ask
participants what they would like to hear about. The
attendees are an excellent resource for information, each
of us has special skills and insights on certain topics
that others may be interested in. There are also books,
videos and movies dealing with disability, as well as
mainstream materials that discuss or portray disabilities
that can make good topics or jumping off points for
discussion on disability. Fanlight Productions is an
excellent (though pricey) source for specialty videos on
disability. You can reach Fanlight at (800) 937-4113.
Another activity that most people enjoy and which can
generate enthusiasm in a group is to begin a peer
visitation program or perform preventation and education
programs at schools. We will cover these issues in a
later issue.
Plan a time for people to just hangout either before
or after the meeting, and make sure that people don't
leave without signing up with their address and telephone
number. Not only does this keep your mailing list up to
date, but it also allows your support group to grow.
Running a meeting is learned skill, so don't feel
discouraged if you're not perfect at it. It helps to have
someone available who has done this before, so ask
around.
This is not a comprehensive list of what to do, and
running a support group is not easy, but it is a very
rewarding and important service to the community. If you
want additional information, feel free to call NSCIA. If
your support wants additional information on becoming a
part of the NSCIA Support Group Network, call and ask for
the Support Group info packet.
5/96
This Factsheet is offered as an
information service and is not intended to cover all
treatments or research in the field, nor is it an
endorsement of the methods mentioned herein. The National
Spinal Cord Injury Resource Center (NSCIRC) provides
information and referral on many subjects related to
spinal cord injury. Contact the resource center at
1-800-962-9629.
Browse the Fact Sheets
|