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Mutual help groups and the rehabilitation process.

Mutual help groups can be defined as community-based, consumer-driven social organizations whose primary focus is on collective action to improve the lives of members and others with specific disabilitiesw and needs. Beyond this definition, however, lies the hopes and aspirations of all those with disabilities who participate in mutual help groups as a way of practicing active self-determination in the course of their own lives. The act of participating gives members a way to better understand disability and to take a personal interest in the future.

The collective action of mutual help groups often constitutes a political base whose purpose is to educate and influence the community, including rehabilitation agencies, about the needs of group members. Some rehabilitation professionals tend to avoid such groups because they are uncertain about the intent or the "target" of such political power. However, the professional who recognizes this power as a natural expression of disability rights can establish valuable relationships with such groups. Groups look upon rehabilitation professionals as assets to help members, not as "targets" for political action. Because group members and professionals share many common goals, these relationships benefit individual rehabilitation clients by enhancing the rehabilitation process within the community.

Benefits to the Client

Mutual help groups offer the person with a disability a variety of benefits and assistance. Chief among these is social support among people with similar situations and aspirations. The mutual help group as a personal support system gives the individual a safe arena in which to explore options and goals, and to come to terms with many of the psychosocial implications of disability. Groups provide a sense of belonging that helps reduce social isolation that can arise from disability. Participation also translates into helping others with similar conditions and needs. Participation is a consumer-driven form of "barter economy" in which members help others in exchange for help for themselves (Vash, 1981, pp. 208-209).

A typical group operates like any other social organization with a special interest. Groups generally elect officers to manage the logistical needs and to supervise group planning. Mutual help groups usually include activities such as the following in the plan for a scheduled meeting:

* welcoming members, new members and visitors;

* guest speaker or educational session;

* socializing period;

* planning future activities; and

* handling any special problems presented by members.

Such activities can enhance an individual's sense of self-worth by providing a direct method whereby he or she can contribute to society and to the welfare of others. To belong to such a group can signify that the person with a disability is involved in life. Such involvement reflects a level of social interest which can serve to reduce the stress related to disability by giving the individual the opportunity to utilize existing social skills. Recent research in social interest suggest it may be closely linked to overall good health (Zarski, Bubenzer & West, 1986). Additionally, the member contributes by helping the group carry out its collective goals.

Because the member's family may also participate in the group, existing natural support systems can be strengthened in the process. Over time, belonging to a mutual help group can assist the individual in the process of self-assessment. He or she can identify and clarify realistic needs, strengths and rehabilitation goals through interaction with other members who provide information about disability. Accordingly, groups provide a forum in which people can discuss their own progress toward specific goals during the rehabilitation process.

The experience of belonging to a mutual help group can lead to member empowerment by giving each person an active voice in dealing with disability. Active participation can help preclude social withdrawal and dependency and can encourage a greater sense of personal responsibility. In essence, the mutual help group constitutes a community for its members that is geared toward their needs, but which is also an integral, functioning part of the community at large. Inasmuch as rehabilitation takes place within the community, group participation is itself a form of rehabilitation. Although membership can have therapeutic value for the individual, groups usually have other goals as well. The sharing and mutual support generated among members puts each member in a position to give help as much as to receive it, thus providing a learning experience through give-and-take.

For example, a woman who lives in a small town in Kansas joined a women's mutual help group when she faced both a divorce and a disabling medical condition. She said that she received from other members strong support, suggestions for alternatives and non-judgmental acceptance. In summarizing her experiences with the group, she said, "My friends were too emotionally involved to give me realistic feedback. The group emphasized confidentiality, so I was able to be open with them."

Group membership, then, is not so much a matter of casual affiliation as it is a matter of belonging. This belonging may represent a way of life from which the individual derives coping experience, a sense of responsibility to others, the capacity to envision personal change, and a feeling for the continuity of life. All these experienced and values can help an individual get the most from the rehabilitation process.

Participation in a mutual help group is often a growth experience in itself. The individual joins with others to share information and experiences about disability and about life with disability. He or she can learn how others have dealt with the day-to-day demands of normal living and how others have handled unique or situation-specific challenges. In our society there are few opportunities and occasions that provide a setting in which people can relax and tell their stories.

Perhaps most important, the individual can learn how others have managed to maintain or construct interpersonal relationships. Mutual help stems mostly from mutual support and education. Such support places the group in the position of functioning as an extended family. Even thought the individual's actual family may participate in the group, the extended family nature of the group bolsters other existing support. The member's actual family also receives this support. This augmentation is particularly important when an individual experiences a setback in dealing with the world. Disability can have just as much impact on the family as it can on the individual with a disability. So the mutual help group makes a place for everyone, a place in which family relationships can be strengthened through better understanding.

As an extended family, a mutual help group can add new dimensions to the client's life. A man in Topeka, KS, who for several years has attended a support group for professional people with alcohol-related problems, explained that the personal importance of group participation may remain even after an initial problem has been resolved. "I no longer attend for any therapeutic value related to my past drinking. Now I attend to help others who could not make it unless we continue providing support and encouragement," he said.

Political Issues

Mutual help groups are often organized to improve members' welfare through direct political action. This characteristic, however, should be welcomed and respected by rehabilitation professionals. It forms the basis for self-advocacy and self-determination, two concepts that traditionally have given meaning and power to the rehabilitation process. As a politically oriented organization, a mutual help group typically arises as a grassroots movement to improve the quality of life for people with a specific disability. For the individual member the group becomes yet another resource within the rehabilitation community through which one can gain access to new opportunities.

Political power of a group grows out of the collective strengths and goals of the members. Typically, a group seeks first to educate its own members about their rights and obligations by exploring laws and policies pertaining to services and opportunities in the public sector. So a primary task of the group is to understand the services, programs and goals of public agencies that have roles in rehabilitation and client welfare. The political agenda of the group becomes a matter of helping one another obtain available services in accordance with the intent of public laws and policies.

This political agenda is based on the notion that public agencies are accountable to those they serve. In general, a group's interests are not so much different from those of a public agency, unless of course the group perceives that an agency is not living up to its mission. Such a view is consistent with the ethics of rehabilitation professionals and of public agencies that strive to fulfill their respective missions. In this sense a mutual help group shares common values with public programs and agencies throughout the rehabilitation community. The political interests of a group are usually well-intentioned. mutual help groups generally recognize that public agencies have finite resources and specific missions which cannot be altered except through formal changes in public law or policy. Groups can and do put their political clout to use when they perceive that members are not receiving from an agency those services for which they are eligible. Again, this is an expression of consumer awareness and self-determination. Such awareness can have a positive impact on the relationship between a group and the rehabilitation professional who serves the members. The client and the professional may have a similar knowledge about client needs and the rehabilitation process itself.

The client who possesses a clear understanding of the rehabilitation process, the agency's mission and available services can enhance the rehabilitation process by arriving at a meeting with the professional with specific and realistic goals to discuss. In turn, this can help the professional move more quickly through assessment and planning phases so that rehabilitation services can be allocated that much sooner for the client's benefit. For example, a vocational rehabilitation counselor who encounters such a client may find that the client has already given much thought to an appropriate vocational objective and to how that objective can be reached. Such a client can be highly motivated and well-informed. An attitude of optimistic self-determination may characterize the client's first contact with the rehabilitation professional. This psychological posture can give rise to improved self-worth, a sense of active responsibility for one's own rehabilitation and a willingness to enter into the rehabilitation process as an equal, cooperative partner.

A rehabilitation professional welcomes such attitudes as important contributors to rehabilitation outcomes. In this way, the mutual help group can help a client develop the wherewithal to seek a better life through planned, intentional change. Much of the political effectiveness of mutual help groups stems from their concerted effort to keep group members informed about pertinent disability research, programs and laws. The well-informed member makes a well-informed rehabilitation client, one who can have high expectations of rehabilitation professionals. These expectations, as well, signify that the client is from the start an active participant in his or her own rehabilitation.

Many resident rehabilitation programs now allocate time for client-driven mutual help groups to meet during resident phases of client training. For example, the Kansas Rehqabilitation Center for the Blind in Topeka encourages informal meetings so clients have the opportunity to share experiences with one another. The administrator of that facility said such groups are particularly valuable and effective because the clients have different degrees of vision loss and thus experience disability in different ways. As the administrator put it, "Sometimes the informal sharing of experience serves as the catalyst which leads to adjustment and acceptance by the clients." She added that this sharing often is more meaningful to the client than the more formal rehabilitation counseling process. Thus clients help one another understand the loss of vision as a life adjustment issue, not merely as a disability.

The rehabilitation professional who serves such a client can find both challenge and opportunity. While it may be a challenge to live up to the client's expectations regarding quality of services, the professional also has an opportunity to help a client realize his or her full potential. The client and the professional share a common value of making the rehabilitation process as meaningful as possible.

Mutual Help Groups as a

Rehabilitation Resource

Any community group which provides help to people with disabilities can be considered a rehabilitation resource. Mutual help groups, however, are special in several ways. Because they are consumer organizations operating outside the agency arena, they are neither owned nor controlled by rehabilitation agencies. Mutual help groups have as much to offer the professional as the professional has to offer the groups. The rehabilitation professional who has a genuine desire to help such groups and to work with them on the behalf of clients will generally find them receptive. Accordingly, the professional can consider the groups as natural community resources for rehabilitation clients in the future and should treat such groups with respect and professional courtesy.

Mutual help groups typically provide members with a variety of services aimed at helping them achieve specific goals. Specific services can include transportation, employment information and education, disability education and service information, family and individual social support, daily living skills training, peer counseling, community exploration, personal advice, planned entertainment, self-advocacy training, help with problem resolution, and housing and financial information.

A member who is also a rehabilitation client can thus make use of these services to enhance his or her own rehabilitation plan; and when these services are used instead of agency services, the agency may show a "net gain," since its own similar services can be used to help other clients.

This is not meant to suggest that an agency uses a mutual help group's resources to preserve its own or merely because they are available. Any services the group offers are allocated according to member needs and desires. The client receiving help from the group responds by helping other members. In this way the service or help is more akin to normal community interaction in which friends help friends. This quality leads to consumer empowerment--people helping themselves toward self-determination.

The rehabilitation professional can honor this spirit of empowerment by asking the client to explore any help available through the group. While this help is taken into account as a resource when the client and the professional plan the rehabilitation process on an individualized basis, an agency can provide any other services the client needs to achieve identified rehablitation goals.

The professional can also serve as a guest speaker at meetings where her or she can help clarify information a group might have about policies and services. Thus the professional can learn about any special problems the members may have and can display a willingness to assist the group in any appropriate way.

While mutual help groups operate on a voluntary basis according to the interests and abilities of the individual members, most derive a certqin stability from being consumer-driven. An important feature is that services and support provided to members can continue long after professional rehabilitation services are completed. Groups continually attract new members who help provide continuity of support, as givers as well as recipients of support. Mutual help groups stress a common identity through a shared life situation more than other groups (Corey & Corey, 1987, p. 13).

The Rehabilitation Professional and

Mutual Help Groups

Rehabilitation professionals should identify the following characteristics of mutual help groups in his or her community:

* Which groups are active in the community and which disability groups do they represent?

* What educational and service programs does each group provide to its members?

* Are family members invited to participate in the groups?

* Have groups offered support in the past to help members during and after the period in which rehabilitation services were provided by agencies?

* What can the rehabilitation professional do to help the group provide support to its members?

It is not usually difficult for a rehabilitation professional to learn about mutual help groups in the community. In many urban areas directories of groups are published and updated regularly, while in smaller communities the rehabilitation professional can discover such groups through day-to-day contacts. The rehabilitation professional who works with people who have different kinds of disabilities may find that a good working relationship can be formed with a few prominent groups that address the needs of the majority of clients. Other groups can be contacted on an "as needed" basis for clients who have less common disabilities.

In some instances participation in a mutual help group may be included as a needed service in rehabilitation planning. For example, group participation is often incorporated into "treatment" plans for people with disabilities, such as alcohol and drug abuse disorders, and becomes a routine part of many aftercare programs (Seligman, 1990, p. 172). Such treatment remains consumer-driven even when group involvement is identified as a needed service. It is important that the rehabilitation professional remember that his or her relationship with any mutual help group is a give-and-take proposition, and that even when specific clients are not involved professionals can help groups in a variety of ways. Since most groups welcome professionals who are willing to explain agency programs and policies at meetings, this serves an educational function to prepare members should they later become rehabilitation clients.

Once the professional establishes a sound working relationship with a mutual help group, the group may serve as a referral source; the group can refer members in need or rehabilitation services and the professional can refer to the group those clients wanting to participate. This exchange is aimed at the same common goal of helping people with disabilities improve their lives. Such a relationship reflects the fact that the client, the professional, the agency, and the mutual help group all belong to the same rehabilitation community in which the client's needs can be voiced.

Because client confidentiality as provided by law must still be respected, the rehabilitation professional can only refer clients to mutual help groups with the clients' permission. Additionally, the professional cannot discuss one client's rehabilitation with other group members unless specifically requested to by the client. Conversely, clients referred to the rehabilitation professional by mutual help groups enjoy the same right to privacy.

On a policy level, mutual help groups can provide public agencies with unique and valuable information in the form of feedback. Groups can help to inform agencies of the changing needs of specific disability groups and can serve as critics of the policies and programs offered by rehabilitation agencies. It is important that the individual rehabilitation professional working with mutual help groups be sensitive and receptive to such feedback.

Being open to such information means that the rehabilitation professional must respect the source, must assume that the information has merit and value, and should pass the information on to rehabilitation managers or administrators who can weigh it against other data. It is vital to the professional's relationship to a group that the group be notified when information has been given to agency managers; when this is done, group members are better able to sense that their views are being heard by the agency.

Accordingly, the group should be informed of any policy or program changes resulting from information it provided to the agency. On the other hand, if the information does not lead to changes, the group should be told the reason. Such information cannot always be acted upon immediately by an agency, since other demands, priorities and limitations can serve to postpone or nullify changes group members may think are warranted. When the group understands the reasons for such decisions, its members are more likely to understand the agency's position.

Conclusion

Mutual help groups can serve as an important community resource for people with disabilities and rehabilitation professionals alike. As a social organization espousing a cmoon goal with people who have disabilities, a mutual help group can play an important role in the rehabilitation process and in helping the individual cope with the social and personal impact of disability. Much of the popularity and success of such groups stem from the experience of shared concerns (Seligman, 1977, p. 7), an experience which serves to focus a group's direction toward specific goals. Social involvement, self-esteem and rehabilitation aspirations can be improved through group participation.

For a group to function as a resource, the professional must recognize its legitimacy and must work to establish a meaningful relationship with its leaders and members. The political orientation of most mutual help groups must be viewed by the professional as an effective and appropriate method for people with disabilities to voice common concerns.

Mutual help groups look upon rehabilitation professionals in the community as resources in their own right. The professional who is willing to invest time and effort in building sound relationships with mutual help groups will find that they add "depth" to the rehabilitation community. Although rehabilitation professionals stand to gain from such relationships, it is the people with disabilities who stand to gain the most--better opportunities to live and work within a community in which empowerment is a reality growing out of a collaborative effort to make rehabilitation as meaningful as possible.

Bibliography

1) Corey, M.S. and Corey, G. (1987). Groups: Process and practice (3rd ed.). Pacific Grove, CA: Brookes/Cole.

2) Seligman, L. (1990). Selecting effective treatments: A comprehensive, systematic guide to treating adult mental disorders. San Francisco: Jossey-Bass.

3) Seligman, M. (Ed.). (1977). Group counseling and group psychotherapy with rehabilitation clients. Springfield, IL: Charles C. Thomas.

4) Vash, C.L. (1981). The psychology of disability. Springer Series on Rehabilitation (Vol. 1). New York: Springer.

5) Zarski, J.J., Bubenzer, D.L. and West, J.D. (1986). Social interest, stress, and the prediction of health status. Journal of Counseling and Development, 4, 386-389.

Mr. Holmes is an instructor in the rehabilitation counseling program at Emporia State University, Emporia, KS, and is a doctoral student at Kansas State University.

Dr. Karst is Coordinator, Rehabilitation Services Program, Emporia State University.

Dr. Goodwin is Associate Professor, Department of Rehabilitation Studies, School of Allied Health Sciences, East Carolina University, Greenville, NC.
COPYRIGHT 1990 U.S. Rehabilitation Services Administration
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1990, Gale Group. All rights reserved. Gale Group is a Thomson Corporation Company.

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Author:Goodwin, Lloyd R., Jr.
Publication:American Rehabilitation
Date:Sep 22, 1990
Words:3649
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