I speak from the experience of the rise and fall of a disabilities support group my wife and I initiated during 2011.
To prepare to start a group, I communicated with Mark Stephenson, Director of Christian Reformed Disability Concerns, after noting the resources mentioned in the Spring 2010 Breaking Barriers. Mark provided numerous suggestions, a list of resources including some from the Disability Concerns website, and dos and don’ts advice such as "Walking in Their Shoes: Seven Ways to Love Families with Disabilities". In addition, I sought and received the support of our congregation’s Small Group Ministry Team for backing with any incurred expenses, and met with two other couples from our congregation who were also affected by disability to help prepare for the first meeting. I presented the support group plan to the rehab department of our local hospital who agreed to cooperate by placing promotional fliers in their waiting rooms. We distributed numerous fliers around town too. The meeting announcement read, “SUPPORT GROUP for people with physical disabilities and their families will meet regularly for fellowship, information and encouragement, plus time and location.” In addition, we sent a request to all area churches to print bulletin/newsletter announcements for two weeks, communicated with our local newspaper which ran an article, and ran a two-week ad in the local advertiser.
We chose to meet Sunday afternoon from 3:00 to 4:30 PM once a month in a large accessible lower level room of a senior care facility with ample parking spaces. The local hospital administration granted us free use of this “neutral” meeting place.
At the first (organizational) meeting, 17 adults and two infants attended. We asked people to use name tags and write their names and contact information on a sign-up sheet. Another couple was asked to do an "introductions/get acquainted" exercise. I introduced the “what and why” of a support group using ideas from the Breaking Barriers article referred to earlier. Then we broke into small groups to discuss a couple questions:
What do you want a support group to accomplish for you?
What are you willing and able to contribute to a support group?
After talking in groups, suggested topics, possible speakers, and other activities for future meetings were listed on a marker board. Some people requested that time for sharing be set aside at each meeting. I made a plea for three to five volunteers to help me serve as a steering committee for the first year, to decide on target audience, to craft a mission/purpose statement, and to plan future meetings.
Subsequent meeting topics, speakers, and activities were based on suggestions from support group participants:
- “What is a support group?” - Hospital Chaplain
- “Share Your Story: Coping Strategies” - Group participants
- “Medicare and Medicaid as They Pertain to Disability Concerns” – Attorney
- "Discussion on Disability Beatitudes” – Group participants
- “Biblical basis for Including People with Disabilities in Church Life” – Mark Stephenson
- "General Tips and Accommodations for Effective Participation in Society" – group participants described reactions to each of the following: grocery store, prosthesis, stairways, winter, crowds, church, curbs, privacy
- Pot-luck lunch and board games
Repeated requests were made for volunteers to serve as a steering committee and help plan meetings. The group decided to skip an August meeting and reorganize at a September meeting. However, after a couple poorly attended meetings, we decided not continue.
Evaluation from group members:
Several regular participants of the support group were asked to evaluate what went well and what didn’t, why attendance dwindled, and what they would do differently if we were to start a support group again. Input included the following:
- Attendance was good at the beginning, but that made it difficult to feel connected because there were so many people.
- Focus groups were too varied in needs, issues, interests and ages.
- Random small groups were too diverse in terms of disability making it difficult to relate to others in the group.
- Difficult to share deeply with people experiencing different disabilities.
- Preferred a presenter/speaker format – to be able to participate as little or much as comfortable.
- Personally overwhelmed with own situation– didn’t have the energy to “give” to the group but needed only to “receive”.
- Topics discussed were good but not always of interest to us personally.
- Would prefer to have been in a separate wheelchair small group to work through mobility issues.
- Dislike sitting in circles/sharing times – felt pressured to participate.
- Allow a social time but also allow attendees to feel free to leave.
- Easier to participate when there’s a commonality among the participants.
- Have separate support groups for disabled and for caregivers/family members.
My personal assessment:
- Meanwhile my wife Ruth had numerous issues that required trips to Mayo Clinic and at times prevented her from speaking. In addition, she had fallen, broken two bones in her right leg, ending her ability to walk, necessitating me to commit to an approximate every-two-hour transfer routine, day and night. For one month we needed to make a daily trip to Des Moines for treatments.
- Overall I feel satisfaction for what was done. We had an average attendance of fifteen – February through July.
- In hindsight, we should have given participants more specific opportunities to evaluate process and procedure while the group appeared to be going well so that we could keep shaping the direction of the group.
- Suggestions from participants provided plenty of meeting ideas.
- I was disappointed that attendance dwindled at the end of the year, but with everything going on at the time for my wife and me, we were too tired to continue.
- Group participants usually did not offer to help with work of maintaining the group; most help had to be solicited.
- I was disappointed there was no core group willing to serve as a steering committee to provide sustained leadership.
It was a good experience, and I believe it was helpful for participants while the group lasted. I believe we did some things well, but once again while the group had the most attendance we should have solicited feedback regularly about the group from those who were attending.