Friends of Brian: Achieving Quality of Life Through GAP
Group Action Planning
We aren’t nearly done! This inescapable fact confronted me as we approached the last of three Person-Centered Planning (PCP) meetings for my son, Brian, who was 16 years old. Brian has significant autism and intellectual disability. I had loved the PCP process so far: we had brainstormed strengths and weaknesses, what works and what doesn’t, and had listed our dreams and nightmares for Brian’s future. But as the process drew to a close, I feared my husband and I would be left on our own with the monumental task of making the aspirations of the PCP a reality. We had just been through an incredibly difficult year with Brian, with psychiatric hospitalization and medication required to address unexplained rages, aggression, and severe self-injurious behavior. Drained and exhausted from the ordeal, I wasn’t sure we were up to this new challenge.
Fortunately, I had read about a process called Group Action Planning (GAP), developed by Ann and Rudd Turnbull, founders of the Beach Center on Disability, to help address their family’s stress in trying to provide a high quality of life for their adult son with developmental disabilities. GAP involves bringing together a committed group of people, meeting on a regular basis, to help support an individual with a disability and their family. I decided to try the process.
My husband and I started inviting others who knew Brian to participate in our GAP, which we called the Friends of Brian (FoB). Eleven years later, FoB is going strong and has been key to Brian’s quality of life and our family’s stability and happiness. This article describes how our group works, with the hope that it might help other families who are interested in trying out GAP.
Steps of Group Action Planning
Forming the team. GAP teams are supposed to be made up of people representing key aspects of an individual’s life: family, school, friends, employment, and community. You can see a list of our current members in Table 1.
Having representatives from all parts of Brian’s life creates a full picture of Brian’s life and helps in coordinating the supports and actions the group develops. There is no limit to whom you can invite. In our group, some people have moved away over the years, but new people have continually joined as they have entered Brian’s life. Some members have been there since the beginning.
I have never liked asking people for help and at first, it was hard for me to ask people to join our group. However, a core idea of Group Action Planning is that you are creating a process that creates real value for people beyond just helping your family. It is a process in which people can enjoy themselves, reenergize, and obtain personal gratification and validation. This idea appealed to me and helped me to feel comfortable in asking for people’s help.
GAP meetings happen on a regular basis. FoB has typically met about every six months, sometimes more often when we hit times of crisis. Often not everyone can make every meeting, but those with conflicts will contribute by email or phone conference.
An important element of GAP is making the meetings a social event as well as a time to focus on supporting the individual. This helps ensure that all members benefit from participation. Although GAP meetings could be held in a variety of locations (e.g., schools, churches) or members could take turn hosting, we’ve always hosted the meetings at our home, providing food and socializing before and after meetings for anybody who wants it. It helps create a positive setting and promotes deeper connections between group members. Once a year we invite team members to a purely social gathering to thank everyone for their contributions.
Establishing a meeting topic
If a PCP has been developed, it provides a wonderful framework to help a GAP team develop a road map for a family’s and loved one’s future. We always have a designated topic or area of concern for our FoB meetings. In the early days of FoB, topics always come from the “dreams” section of Brian’s PCP (Chart 1).
As Brian moved into adulthood, other topics presented themselves. Other topics we tackled as a group included a smooth transition to life after school, increased community participation, integration into a group program for young adults, and a plan for living independent of parents.
Running the Meetings
I typically lead our FoB meetings, but anyone in the group can take that role if the parent isn’t comfortable. We always start by reviewing the goal: the “dream” we have outlined, and then spend the meeting brainstorming concrete steps we could take right now to ensure that the dream will come to fruition. As we develop different action items during the meeting, group members volunteer to take them on, ensuring that work is spread among many people.
It is always amazing to see the brainstorming process at work in these meetings. One person’s ideas will stimulate an idea from another person, which will stimulate another idea, and so on. The process is always invigorating to see and leaves us all feeling positive and excited. I always jot down ideas on an easel pad as people generate them. I also type up a summary email to members after the meeting. This lets members who couldn’t attend know what occurred and reminds everybody of their contributions and action items. Between meetings, those “assigned” continue to communicate progress towards completing their tasks.
The benefits of GAP for both Brian and our family have been immeasurable. We were at a point of crisis at the time of the group’s formation. FoB provided the support we needed at that critical time and has continued to provide help in countless ways since. The positive, problem-solving spirit of the group has helped us sustain our faith in our ability to achieve the life we want for Brian. The infectious group optimism has been particularly important during some of the inevitable rough patches when we have questioned our ability to cope. Brian has a quality of life that we barely dared dream about eleven years ago. He has a job, he has chores and leisure activities at home, he is regularly out and about in the community, and people often describe him as “the happiest person I know.”
It wouldn’t have happened without FoB. We are thankful to the Turnbulls for inspiring us and giving us a roadmap for getting the support we needed to achieve a high quality of life for our son. Now we hope we can pay it forward, using our example of successful Group Action Planning to inspire and support other families struggling to build quality lives for their loved ones with disabilities.
Replay of LIVE Chat
Resources Mentioned in LIVE CHAT
Finding Wonderful Horizons: Improving Children’s Quality of Life, Tom Tutton & Meme Hieneman (May/Jun), pp. 26-29.
Working Together: Family-School Collaboration in Positive Behavior Support, Meme Hieneman, Andrew Garbacz, & Kimberli Breen (Jul/Aug, 2018), pp. 20-22.
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This post originally appeared on our July/August 2020 Magazine