Our position is that support groups for people with brain injuries should be operated by people with professional level training in some field related to brain injury. Doctors, neuropsychiatrists, neuropsychologists, special education teachers, speech therapists, occupational therapists, rehabilitation counselors, cognitive therapists, nurses, social workers, and others, assuming that they have been trained in brain injury rehabilitation, are suitable candidates.
However, there is also a strong desire by some brain injury survivor advocates, that is to say, people who have themselves sustained brain injuries, to operate support groups for other survivors. We strongly recommend that said survivors seek out and gain education and training in order that they properly operate any support group they might implement. It is insufficient for survivors to "start a support group" because they feel driven to do so, if they have not had training. They must have studied and learned terminology, rehabilitation methods, etc. They must also follow legal requirements for accessibility, insurance, and confidentiality etc. that go hand in hand with operating any support group. It is wise for anyone attempting to operate a survivor peer support group to seek out an affiliation with an insured entity, such as a hospital, school system, church or non-profit organization, that will provide insurance and accessible meeting locations.
Accountability is another issue. It is a good idea to have some kind of system whereby survivors who participate in peer support are able to complain, in case of any problems, up the ladder. This in and of itself is a good reason to have "a ladder," a chain of command, so to speak. Informal support can sometimes be sloppy support. Participants with grievances as to service delivery can, in the model situation, find redress if the support is organized. This means that peer support is undertaken with the additional feature of organizational support. Organizations are able to have protocols in place that can be followed. Organizations can provide oversight. Organizations are more likely to have the means and experience to properly access service delivery and correct service flaws. Organizations have protocols to follow - or should. Protocols help keep support groups safe for survivors.
We are not saying that survivors should never operate peer support groups. What we are saying is that survivors need to be trained, just like anyone else, to properly operate peer support groups. Survivor support group leaders must follow the same guidelines that any other trained service provider would follow. Being a survivor does not exempt one from following the same high standards that are expected of any other support group leader. A red flag is raised if the survivor has no credentials or qualifications to operate a peer support group. On the other hand, a thumbs up is warranted if a survivor advocate has completed some college level course of study in a field related to brain injury rehabilitation and is operating a peer support group for people with brain injuries in conjunction with a properly constituted organization that has protocols and safety guidelines.
Brain Injury Network Social Communities, Support Groups, and Pages
If you are a brain injury survivor and you would like to join one of the BIN online brain injury support groups (for tbi or other abi conditions), please access your Facebook account and befriend Sabi Sue. (Sabi Sue is depicted as a cat sitting on top of a computer on Facebook.) Please advise Sabi Sue of your interest in joining a BIN group. Once you befriend Sabi Sue, she will be able to add you to one of our private-posting Facebook groups.
Please see our Brain Injury Help, News, and Support Community Group on Facebook. This is our universal peer and family support group on Facebook. It is a closed Facebook group. The group is for brain injury survivors, their family, and their friends. Service providers are not eligible to join this group.
For Sonoma County support groups, including both our online groups and our face-to-face group which meets in Santa Rosa, California, please call (707) 544-4323. The face-to-face group is open to members only and is by invitation only.