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. We have different peer support groups for different acquired brain injury conditions. Befriend Sabi Sue. She will be able to help you determine which of our groups you might be eligible for. But, you must message Sabisue your interest in joining one of our peer support groups. (Sabi Sue is depicted as a cat sitting on top of a computer on Facebook.) If you qualify for one of our groups Sabisue will be able to add you. Our groups are private-posting groups. We do not have, nor do we encourage, public groups. Please note that we vet all potential members. You will be asked questions to make sure you are eligible to join the particular group that interests you.
You might like Brain Injury Network Facebook pages. However please note that all Facebook pages are public so anyone can read Facebook comments on pages. Therefore, we suggest you like Facebook pages and read Facebook pages but don't post on them. Instead, post on Facebook private groups. They are a bit more private. Also, please note that you should take everything you read on Internet social communities with a grain of salt. One hopes information on said communities is accurate but there is no guarantee.
For the Sonoma County, California face-to-face peer support 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. Note: Due to the Covid pandemic we are not currently having face-to-face meetings. However, one can join our local online support group on Facebook. Please contact Sabisue.