Developing Communities of Support. Another look

In light of  our recent experience at the Foundation for Excellence in Mental Health Care symposium this seemed like a good thing to repost.

 

Too often people with mental illness are a casualty of a system broken, confusing and too fragmented to meet their needs. The model of treatment that tends to often prevail is inadequate for the experience of being a human being, and leaves them discouraged, feeling inadequate and believing life offers no hope or possibility. It is not just learning to cope with mental illness, but the experience of mental illness within a cultural, social, economic, and political context that says that mental illness makes them fundamentally different and limited as human beings. The peer support model however is one hopeful option that is gaining traction throughout the country.

There are many different versions of it, but the basic ideas of most peer support approaches are roughly the same:

• Recovery is about finding something more and better in life.
• Recovery is a realistic possibility.
• Mental illness does not make you a deficient person lacking in human capability.
• People should be in charge of their own lives.
• Recovery should be about helping people to get the tools, the encouragement and support they need to successfully and effectively manage their own lives.
• People who have been there, who have dealt with mental illness in their own lives and who have a personal experience and knowledge of what works can have a unique and important role in helping others with mental illness.

Many treatment providers give some degree of support to these ideas, but have little or no idea how to make peer support an integral part of the services they offer.  Many do not understand the model and do not see how peer support offers something that more orthodox services can’t.  Peer support centers do exist in some communities, but in my experience, only serve a small measure of mental health consumers.  Many  who could benefit from some connection to other peers in recovery simply never have the chance to make those connections.

People who are involved in support groups, some research has shown, are typically more involved in treatment, but support groups, particularly in small towns and rural areas are few and far between.  Support groups in general do not always survive because they are hard to establish and maintain and are usually led by people with little or no financial backing.

The result is we have a system of diminishing resources due to financial constraints stretched to the breaking point with demands.  Often there is no access to needed services or long waits.  Many services are just not availible.  Our jails and homeless shelters become home to more and more of the mentally ill.  Peer support services are minimal and normally one of the first to be cut when the budget is diminished.

For many people, being mentally ill means in practice being left to their own resources and isolated within the communities in which they live.  They may rely on family, on their church, on a few friends or medically on a primary care physician.  The results are uneven at best and, for most, life is a tragedy of opportunity denied.

What we are proposing is to try to develop communities of support.  These communities would not be based on their participation in any specific treatment program or services, although most of them would probably be involved in some type of treatment.  It is an approach that might be best suited to small towns and rural areas, but one that should have considerable  application elsewhere.  The process would work like this:

• A primary goal would be community organizing.  The organizer would try to help consumers in a given community who might be interested in developing a supportive group identify themselves and each other.
• Skills would be taught that would enable these consumers to start, develop and maintain their own support groups.
• The recovery model would be taught as a way to change the vocabulary and sense of possibility that people see in coping with mental illness.
• These skills and knowledge would be used to help people newly diagnosed or just coming to terms with their issues to be more successful.
• Each community would develop a working list of resources available  in their communities to help peers in whatever area of life they have need in.
• Each community would be encouraged to develop a sense of advocacy and the importance of speaking up for themselves and on the topic of mental illness in general.
• Each community would develop the skills and resources to try to educate the wider community about mental illness and to let them know that consumers are just people …just like them.
• Each community would be encouraged to find ties with other communities knowing that in that a larger voice and more knowledge is found.

Many of the ideas I have described are not really unique.  In some combination they have been used in other programs.  There are a couple of differences I believe.  One is the idea of actively trying to organize a community and not just simply wait for it to happen.  Many communities have never anybody step forward because the task seems so overwhelming and impossible.  Another difference is the idea that this idea isnt based on a governmentally funded program, but on a network of voluntary affiliations by people in a community with like issues and concerns. It is based on the idea that people caring for each other has a practical  relevance and effect not dependent on professional qualifications.  It doesnt deny the importance of professional services.  It simply says that they are not all that is important and that as peer support becomes more real and active the combination of the two makes things more effective and life changing.

Hopeworks is interested in developing a project to help establish communities of support.  We are seeking possible sources of grants that would help underwrite such an effort.  Our first effort would be to do this in East Tennessee, but we feel like this is an approach that would work anywhere.  If you know of possible grant sources that might be interested in a proposal like this we would be grateful if you would share that  with us.  If you have comments or suggestions about what you have read we would be interested also in hearing that.  And finally if you would like to talk with us further about these ideas we would love to hear from you.

Thank you very much