Create a Support Group

Organizing any group of volunteers can be rewarding, keeping in mind the following principles:

  1. Working together creates unexpected joyful results.
  2. When the load is shared the work is light.
  3. Despair will turn to hope when participants realize they are not alone.
  4. You won’t always know how much you helped someone, but pay it forward anyway.

Getting Started: You can start with just 2-3 people over coffee – and allow your group to grow from there, through word-of-mouth and public relations activities. You may be able to form an affiliation with an existing organization such as a hospital, YWCA or rehabilitation organization.

Getting Going: You can start with just 2-3 people over coffee – and allow your group to grow from there, through word-of-mouth and public relations activities you may be able to form an affiliation with an existing organization such as a hospital, YWCA or rehabilitation organization

Here are the key elements to work on when you are planning to set up a support group in your community:

  • Purpose
  • Location
  • Communication
  • Style & Frequency
  • Child Care
  • Structure & Leadership
  • Follow-through

Purpose: As a group, decide on what you want to accomplish over the short term – six months to a year. As you work through your process and the family issues you will have a better sense of what you really want to do with your support group. Start out with a reasonable objective that you know will have a good chance of success. There’s no point in being too ambitious at the start and consider yourselves to have failed only because your objectives were too hard to achieve.

Location: look for a central location in your community that you can use for your meetings at no charge. Because FASD is a major problem for many agencies working with single parents, acting out children and many other issues relating to mental health, education, children’s services and other kinds of social work, you may find space in the premises in one of these agencies. Don’t overlook the possibility of meeting room space in a local hospital which can also give your group an unofficial stamp of approval. Because of your interaction with a local agency or hospital, you will also be providing new insights to workers there on the scope and ramifications of FASD. You may find that, as the group grows, you may have to move to bigger quarters.

Communication: Once you get rolling, you will find that word of mouth will draw new families to your group. However, at the beginning you will need to let families know what you are doing, where and when. You don’t need to spend any money get the word out. Make sure that all the agencies working with families or young women at risk have notices about your group that they can post in their offices. Also, prepare brief notices for the ‘community news’ section of the local weekly and daily papers.

Remember that e-mail, listservs and websites can be inexpensive yet powerful communication tools. At FASworld we organized the first International FAS Awareness Day on September 9, 1999 around the world using only e-mail and the internet. Make sure you let the Special Education or Psychology Services Departments at your local school board and adoption and foster care agencies know about your group and your objectives.

Designate someone in your group as the spokesperson who will respond to queries from the local media and to act as the central information point. When preparing messages, posters, etc. to let families know that you are having meetings to support parents, do not focus on the diagnostic terminology. Rather, talk about the behaviours of the children that families have in their care because many may not recognize or understand terms like FAS, FASD, ARND, and so on.

Keep track of everyone who expresses interest in you r group as well as those who come out to meetings. Maintaining a roster with e-mail addresses, postal addresses and telephone numbers will be critical to the success of your group. Designate a volunteer to let everyone on the roster know when the next meeting is scheduled 5 – 7 days in advance. This is a great opportunity to heighten interest in the meeting if you have specific topics to discuss or a guest speaker.

When you have established a regular schedule, location and format for your meetings, you may want to consider creating a simple 3-panel, double-sided folder on letterhead paper that you can use to promote your activity with local agencies, libraries and community resource centres. These folders can be produced on a home computer at low cost or by a copy shop.

Style & Frequency: The group must decide how often and on what day that the meetings take place. Some groups feel the need to meet weekly, others find once a month is all they can manage. Be consistent – have your meetings every week or month on the same day (e.g. every Thursday evening or the last Saturday morning of each month). Keep the sessions informal with a break in the middle for tea and coffee. Informal does not mean unstructured, simply that there should be a certain amount of flexibility and there must be provision for both tears and laughter. Do not make the meeting overlong – 2 to 3 hours is about maximum for this kind of session as emotions can run high at times and a certain fatigue factor can easily set in if the closing time is not followed. Too long meetings can keep families from returning on a regular basis.

Of prime concern is the explanation at each meeting that every discussion of family issues is confidential and must remain within the group. You may also want to ask for a dollar or two per family to cover the cost of refreshments at each meeting or you may want to bring cookies and drinks during the early stages of development. Although it is not necessary to keep minutes of your meetings, it is worthwhile to track attendance and to keep a record of phone numbers, postal and e-mail addresses.

Child Care: Many of the families you are supporting will need child care in order to attend your meetings. Thus, you will need a nearby room to your meeting for the children and the child care providers. You may be able to call upon volunteers from among your families or from agencies interested in first hand observation of affected children. Depending on the number of children involved, at least two mature caregivers should be present to back each other up and spell off for washroom breaks. Families must be urged to call ahead if they need child care, so that there will be sufficient volunteers on-hand.

The caregivers must be briefed on the nature of FASD behaviours so they know what they might expect in case of meltdowns or other acting-out behaviours. There is usually no problem mixing affected and unaffected children together for these periods of time but constant supervision is absolutely critical. Toys, games and snacks are essential for success along with easy access to the parents when necessary. The availability of a VCR or DVD player and monitor is a definite asset if the group meeting tends to go long.

Structure & Leadership: Every organization needs a leader to ensure that procedures are followed appropriately. Natural leaders will come forward almost automatically but you will need to establish guidelines for those taking on responsible positions within the group. Even a small group – say three or four people — will need a chair, a secretary and a treasurer for a start. To keep everyone happy (in case you happen to choose a chair who is ineffectual or counter-productive) you must have a term of office outlined in your guidelines. One year should suffice for most groups. You want the group to be as dynamic as possible so it’s important to keep track of all the individuals who come to meetings and to delegate someone to follow-up, meeting by meeting, to ensure continued interest.

Follow-Through: No organization will sustain itself unless the leadership pays attention to the needs of those who come out and share their concerns.  Thus, individuals within the group can volunteer to follow-up with others who have had some recent difficulties and to see if they have had an opportunity to follow through on suggestions given to them by the group. Also, try to include, from time-to-time some social activities where you don’t talk about family problems but simply enjoy the fellowship of the group. This may be done informally at a member’s residence for a BBQ or some other kind of low key party. This kind of informal event could have some formality attached to it by starting out as an annual meeting to review progress, elect new officers and to set new goals for the year.

Typical Meeting Format

The group chair can take the lead in organizing and managing each meeting or your group may choose to rotate the chairmanship of each meeting among the participants to help them understand the dynamics of good meeting protocol.

  1. Gather all participants around a table or in a circle.
  2. Welcome everyone and acknowledge newcomers.
  3. Explain the importance of confidentiality
  4. It’s usually best to keep the organization as non-sectarian as possible and non-religious. However, depending on the composition of the group you may want to open the proceedings with a generic prayer or a smudging ceremony.
  5. Call for a check-in:  individuals will state their names and the reason why they have come out. These are brief statements of a minute or less and not the time to discuss troubling issues. For example, “My name is George and I’m here because of my daughter Susie. She has ARND and has been having some difficulty recently holding a job and may be on the verge of using street drugs again.”
  6. The chair will ask individuals during check-in if they need any   ‘work’. In other words, do they need some time to discuss an urgent problem with the group.
  7. Keep track of those who need work and allocate the remaining time for each. Let each individual explain the problem and encourage the others to comment and provide supportive suggestions. These individual sessions should not take more than 15 – 20 minutes.
  8. Keep the discussions on point and curtail rambling/complaining about life in general.
  9. Ask the group to suggest some action that the individual, who has explained a problem, can do to provide some relief until the next meeting. This suggestion should be written out with a copy for the individual and a copy kept for the next meeting. Ask for a volunteer to follow-up with that individual between now and the next meeting to provide help or moral support. The individual will be expected to report on progress at the next meeting.
  10. Thank everyone at the end for their participation, reminding them that all family issues discussed are to be kept within the group. Take a short break at any appropriate point during the meeting or suggest to members that they can help themselves to tea or coffee throughout the meeting. Keep tissues handy and be prepared to delegate someone to take the individual aside to a private place should that person become emotionally overwhelmed.

Note: most people cannot attend every meeting so don’t be concerned if the same members aren’t there every time. However, have someone delegated to follow-up with those who missed the meeting by calling to check that everything is OK.

As the support group grows: If your group is not affiliated with an existing organization or agency, your group will likely want to incorporate as a not-for-profit organization and seek charitable tax status. You will then require a board of directors along with a pro bono lawyer to help you create bylaws and keep legal and accounting requirements up-to-date.

Bonnie Buxton & Brian Philcox, co-founders of FASworld Canada, are experienced support group facilitators and are available for consultations and in-person presentations to help you start your group. They can be reached at 416-264-8000.