From the NYS Office of Mental Health, Office of Consumer Affairs
This document was developed to create a framework for government and individuals to support the development of peer support groups for individuals who are or have been in the mental health system. This standardized menu of service offerings creates a service model, which can become the basis of a government contract or funding as a complimentary augmentation of the traditional mental health service array. The service array described in this document is nothing more than a compilation and synthesis of the actual services provided by the great variety of peer support groups that exist.
Self-help, mutual or peer support, and peer-run organizations exist on a continuum from doing things for one-self to large multi-faceted organizations. Since many use the term self-help when referring to mutual support groups, lets begin with definitions that this document will use consistently in order to promote understanding. Self-help as this document will use the term, refers to methods that individuals use to help or improve oneself without assistance from others. Mutual or peer support as this document will use the term, refers to groups of people who share a common experience (having received a diagnosis of mental illness) who come together in order to provide each other with moral support, information, and advice. Lastly this document will use the term peer-run organization to refer to those organizations (including mutual or peer support groups) that are member-run, in which the majority of staff and a majority of the board are made up of people who would qualify for membership (i.e. individuals who have used mental health services or been psychiatrically labeled). Many peer support groups, peer run organizations and some traditional mental health providers provide information on self-help but have come to use the term in ways that refer to the “industry” of peer support or peer-run organizations.
There are four characteristics which make up a peer support or mutual help group as cited by the American Self-Help Group Clearinghouse. They are:
- Mutual Help – This is the primary dynamic process that takes place within the group — it’s people helping one another and helping themselves in the process. Experiences are shared, knowledge is pooled, options are multiplied, hopes are reinforced, and efforts are joined as members strive to help one another.
- Member-Run – Member run and “owned”. Providing a sense of belonging and reflecting members’ felt needs. They are not professionally run groups. If professionals are involved (and in many cases they are) they serve in ancillary supportive roles, i.e., they are “on tap, not on top” as some groups describe it.
- Composed of Peers – members share the same problem/experience, providing a powerful “you are not alone” sense of understanding, which can often lead to an almost instant sense of community at the first meeting.
- Voluntary Non-Profit Organization – volunteer-run” or at a minimum voluntary participation, “no fees; dues if any are minimal. They are, as described by A. Tofler in his 1980 book, The Third Wave, as “prosumers,” rather than “consumers.”
Peer support groups often begin with a single individual or small group wanting to meet their own specific need for support. Peer-run organizations are the outgrowth of these groups as they grow and develop creating more groups to address identified need. This document in addition to providing government with a potential framework for contracting can provide developing groups with ideas and methods to address need.
Many groups begin in a more formalized way with the creation of a drop-in center. This is a place where people can stop by at any time to enjoy a cup of coffee, socialize or just hang out in a low stress, low demand environment. Centers are typically staffed with volunteers at first who insure a safe, comfortable and friendly atmosphere. The drop-in center becomes a focal point from which to offer other services. A drop-in center is often used as an engagement strategy attracting those not interested participating in traditional mental health service offerings. Many centers begin operation in donated space as part of a church and sometimes formal mental health center. Hours of operation vary from a few hours one day a week (typical in donated space), to evening and week-end hours for those complimenting traditional service providers, to 24 hours a day/7 days a week for those providing homeless support services.
Individuals who have used mental health services often identify co-occurring substance use as an issue they would like help with. For this reason, many peer support groups and drop-in centers offer or support substance abuse groups like AA (Alcoholics Anonymous), NA (Narcotics Anonymous) or DTR (Double Trouble and Recovery) by holding meetings at their locations. Specialized groups like DTR address the concerns of people who use psychotropic medications in ways that some typical AA meetings can’t (some groups require no drugs of any kind including prescriptions). Groups often begin by partnering with a AA , NA or DTR group offering space and refreshments. Some drop-in centers have volunteers and or staff with training and backgrounds specific to facilitating a group.
As groups develop and members gain more experience in their personal recovery journeys, helping members find ways to insure their treatment preferences are respected and followed is a natural development. Advanced directive training and support follows with groups providing information, education and some offering workshops. Some groups take the legal concept of advanced directives to incorporate treatment preference planning beyond just a crisis plan. Most places that provide workshops recommend that an advanced directive be developed over a period of time in discussions with the supports that an individual desires. In this way, the people providing support know the exact preferences of the individual they are supporting and under what circumstances they should take action. This service provided by a peer support group in a traditional provider setting, can create opportunities for traditional mental health staff to not simply understand the preferences of their clients, but can allow them to create service options that actually promote recovery. Wellness Recovery Action Plans (WRAP) is a process many peer organizations endorse which supports each individual in creating a plan for themselves through structured discussions and activities. Many peer groups offer members, volunteers and staff the opportunity to attending WRAP facilitator training so that they are credentialed to run WRAP groups.
In the past, most mutual support groups for mental health recipients were begun as a way to change the system. Individual and systemic advocacy is a service that many peer support groups still perform both as a way of assisting members in addressing issues and a method of engagement of new members. Advocacy has also taken new directions as some jurisdictions employ peer support groups to gather input into governmental processes. Other groups provide individual advocacy training to enable members to become better self-advocates. There are peer support groups that contract with the federal PAIMI (Protection and Advocacy for Individuals with Mental Illness) agencies to act as lay advocates and do case finding. Some service systems provide advocates contracted from peer support groups to assist individuals in navigating complaint and grievance processes or other part of the system.
New people receiving mental health services and individuals who have been in the system who desire to work, often seek guidance from peers on benefit issues. Many peer support groups provide benefit education and assistance ranging from social security supports (SSI / SSDI), Medicaid, Medicare to emergency energy assistance. With the turnover rates for mental health workers being high, individuals who have been in the system are the best source of practical information on benefits. Many programs, like those from Cornell exist to provide training for individuals in peer support groups on benefits advisement.
As peer support groups are and grow in membership issues of recovery often begin to focus on employment. Coupled with benefits advisement which is critical when considering work, peer support groups have created job/career clubs to provide mutual support for members seeking and struggling with returning to work. Coupled with traditional employment or job coaching services, this mutual support activity provides a unique assistance to aid individuals in transitioning from an individual identity of a disabled person to that of productive employee. Some peer support groups have created agency run business enterprises as a way of creating supportive job opportunities for members.
Depending on the needs of members, some peer support groups working with other community organizations provide a “Clothes Closet” for members enabling members for example to find warm clothing in the winter when they lack financial resources. Often these are as simple as a closet in the drop-in center in which people place clothing they no longer want that others can search. In some peer support groups this activity has grown to the point of an agency run thrift shop that generates both employment opportunity for members as well as income for the group.
In starting a peer support group, one will find that an easy way to entice new members is provide food. Many peer support groups offer community meals as a way also of addressing member’s issues in making limited financial resources stretch. Peer support groups that provide homeless services find that meals become a necessity to meet the needs of their members. No matter the reason that a peer support group provides meals, they become an attraction and engagement tool for finding new members and building a true community of support for existing members. Meals are frequently begun as pot-luck suppers where each member agrees to bring one item to share. Working with food pantries and extension agents, community meals can provide opportunities to teach meal preparation and nutrition to members enabling them to stretch their limited food budgets.
Once a peer support group grows, its need for a computer to keep records and write reports necessary to satisfy funding sources becomes critical. Groups have found that making that same computer available to members to aid in resume writing, and job searches addresses immediate needs. Some groups augment their single computer by seeking donations from companies like insurance carriers that regularly replace their equipment upgrading it. This has created an opportunity for these peer support groups to establish computer training programs which in some cases include industry standard certifications recognized by Microsoft and Novell as well as employers. Internet access is frequently available at free or reduced rates from local internet providers once the group has it’s non-profit status. This allows the groups members to conduct their own research and education on topics such as medications, diagnosis, wellness self management, or other topics of interest. Some peer support groups serve as pre-vocation site and even vocational employment training sites for the traditional service system.
As peer support groups grow, many begin to provide a variety of crisis support, usually beginning with in-home peer support during a time of crisis using volunteers. Some groups expand that concept to more formal crisis option with several establishing crisis emergency residences under contract with local government as hospital diversion staffed by peers. Many also begin informal telephone support trees where members provide informal support to each other. In a number of instances, these have grown to more formal warm lines staffed by peers to provide telephone support.
Many groups, particularly those that have established community meals, begin to explore creating food pantries in collaboration with local food banks. These pantries provide members with low cost or emergency food options that enable individuals living on the fixed income from disability to be able to maintain a healthy diet. Some programs also work with local cooperative extension or homemaker services to provide education on meal planning and preparation as part of their service.
In some areas, peer support groups who have members involved in the criminal justice system provide a variety of support activities specifically aimed to help re-integration and maintenance of positive community involvement. As groups have provided training and support to local law enforcement, some groups have developed a variety of formal and informal mechanisms to assist with diversion activities. These typically involve crisis support for individuals whom police are called as a result of unusual behavior.