Support and discussion groups provide peer mentoring, socialization, camaraderie, and information-sharing opportunities. However, sometimes there isn’t a group available for all that want one. If this is your situation, consider starting your own!
To make the process less daunting, we broke it down into the five P’s: People, Planning, Place, Publicity, and Programming.
People
First, identify two or three people who share your interest in forming a support group. Although it is possible to run a support group by yourself, it is easier if you have other people assisting you.
You also need to know how many people in your area want a support group. Do a lot of wheelchair users live in your community? Have they expressed a desire for such a meeting? Then you must decide who your group will target. Should only people with a specific mobility disability be encouraged to join, or can people with other types of disabilities attend? Will it be open to family members and friends?
Many times, people with disabilities will want a place to talk without family around. Similarly, family members have their own issues and may wish to speak freely without the person with a disability present. Some groups handle this by running two separate meetings, one for wheelchair users and another for family members and caregivers. Other groups open the meeting to family members every three months. Some do not include family members or friends at all. It’s up to you and your group organizers to decide what’s right for your community.
Planning
Now that you have determined a need for a group in your area and have identified people to help you plan, you have some decisions to make.
First, how often will your group meet? We suggest meeting at a minimum once a month. Monthly meetings help build consistency, and the frequency is just right to keep people engaged and coming back. However, we have found some groups do better with even weekly or biweekly schedules. Again, you must gauge your community’s needs and do what works best for your group.
Next, what kind of support group do you want to create? There are three main types:
- Peer support group leaders have the same or similar disabilities as the participants.
- Professional-led support group leaders are usually rehab psychologists, counselors, or social workers.
- Discussion groups have an educational emphasis. They feature a video or a speaker or specific topic in addition to time set aside for sharing experiences.
Also, think about what to call your group. Sometimes people are reluctant to attend a group with the word “support” in the name, so choosing something catchy and intriguing may be more inviting. Some examples are Here and Now Project, Rolling Together Atlanta, and Rolling Inspiration San Antonio.
Place
Try to find a central location to hold your group meetings and keep transportation in mind. Is it on an accessible bus route? Is there plenty of accessible parking with a clear pathway into the building? Popular meeting sites include rehab hospitals, centers for independent living, church halls, housing complex clubhouses and private residences. The location should, of course, be accessible, including the bathrooms.
Sometimes groups attempt to have a rotating meeting place to accommodate people without access to transportation. This structure could ensure that people who otherwise could not regularly attend can make it to a few meetings in their area. But it also may lead to the group becoming fragmented as not all members would be able to attend most meetings. Also, people may forget where the meeting is and decide not to attend.
Publicity
Publicity is crucial to a beginning support group. How will you get the word out? To start with, you probably already have a list of interested people. A nearby rehab hospital may be willing to contact its outpatient wheelchair users on your group’s behalf and even provide meeting space. Your local wheelchair supplier, repair shop, or accessible vehicle dealer may also let their customers know about you. Who knows, they may also provide some sponsorship to get you going.
Other places to recruit are centers for independent living and vocational rehabilitation offices. Don’t forget to advertise on social media. Many United Spinal Association chapters have their own Facebook or Instagram accounts. Apps like Meetup and Nextdoor can connect you directly to people in your community who might be interested. Make sure your post announcing the meeting gives people the basics — date, location, time, a brief description of the group’s purpose and who can attend. Turn that post into a flyer that you can pin on the bulletin boards of local, accessible community hotspots like restaurants or coffee shops and rehabs or disability organizations.
Newspapers usually have a place to announce support groups, and radio stations often do free PSAs. Many local cable channels have a scrolling marquee that announces regional meetings. You may also be able to get airtime on your local channel since many of them need programming.
Programming
Ask participants what they would like to learn about or discuss. Organizing the group around shared interests will keep participants coming back for consecutive group meetings. Common topics include sports and recreation, jobs and housing, ADA training, health and wellness, advocacy, disability-themed books, movies and other media. You can tap local vendors, CILs or rehabs for speakers.
Plan a time for participants to just hang out before or after the meeting, and make sure that people don’t leave without signing up with their email and telephone number.
Running a meeting is a learned skill, so don’t feel discouraged if you find it difficult at first.
For more information, please contact United Spinal Association’s Director of Peer Support, Lindsey Elliott at lelliott@unitedspinal.org or 718-803-3782 ext. 7241. Join our community by signing up for a free membership. To support our mission, donate here.
The group photo shows Rolling Inspiration San Antonio.