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Khasnabis C, Heinicke Motsch K, Achu K, et al., editors. Community-Based Rehabilitation: CBR Guidelines. Geneva: World Health Organization; 2010.
Self-help groups are informal groups of people who come together to address their common problems. While self-help might imply a focus on the individual, one important characteristic of self-help groups is the idea of mutual support – people helping each other. Self-help groups can serve many different purposes depending on the situation and the need (15). For example, within the development sector, self-help groups have been used as an effective strategy for poverty alleviation, human development and social empowerment (16), and are therefore often focused on microcredit programmes and income-generating activities (see Livelihood component).
Over the past 20 years, self-help groups have been used in various forms in the disability sector, and self-help groups of people with disabilities and their families are engaged in a whole range of activities including health care, rehabilitation, education, microcredit and campaigning. Self-help groups can facilitate empowerment; belonging to a group (or organization) is one of the principal means through which people with disabilities can participate in their communities (see Disabled people"s organizations), and it is through the involvement in groups that they can begin to develop their awareness and the ability to organize and take action and bring about change (2).
While many CBR programmes focus their activities at the level of the individual, e.g. on providing direct assistance, such as basic therapy, they are encouraged to bring people with disabilities and their family members together to form self-help groups to address and resolve their own problems. Self-help groups are a key element of the CBR matrix and can be a means to achieving the newly emerging CBR goals of inclusion of and ownership by people with disabilities, and to enhance their participation in development processes (15). This element mainly focuses on how CBR programmes can facilitate the formation of new self-help groups, but it also looks at the linking of CBR programmes with existing self-help groups of people with disabilities and their families, including mainstream self-help groups.
Self-help groups for landmine survivors
The Landmine Survivors Network (LSN) started working in the Quang Binh Province of Viet Nam in 2003, where the network has helped establish 15 self-help groups for landmine survivors. Many of these survivors have injury related impairments but a unique characteristic of the groups is that they also include people with disabilities unrelated to conflict. These groups aim to facilitate the process of self-empowerment by overcoming social exclusion, enhancing participation in decision-making processes and improving quality of life. The ultimate goal of LSN-Viet Nam is to have a self-help group in each commune.
Outreach workers from LSN-Viet Nam, many of whom have a disability, are responsible for supporting communes that have expressed an interest in forming a self-help group. These workers start by fostering collaborative relationships with the local authorities as well as with major representative organizations such as the Farmers" Association, the Women"s Union and the Veterans" Association. They provide training on the concept of self-help groups for the organizing group and guidance on the legal steps associated with registration of the group with the local authorities, and arrange initial stakeholder meetings.
Once groups are formally registered and formed, they are run independently by the members. Outreach workers provide ongoing support where required. For example, they may provide training for group members on disability issues and/or group facilitation (e.g. how to chair meetings). Group members are responsible for directing activities which may include: inviting representatives from local authorities to discuss health services for people with disabilities, working with local authorities to improve the quality and accessibility of health services for people with disabilities, organizing local sports events, participating in national sports events, providing peer education on health care and treatment, creating small business ventures and work opportunities, and promoting a positive image of people with disabilities in the local community. Many self-help groups have assumed responsibility for the National Day of People with Disabilities in Viet Nam by setting the agenda for the day and leading public celebrations.
One of the greatest achievements of the self-help groups is the impact they have had on raising the awareness of local authorities about the needs of people with disabilities and the important participatory role people with disabilities can play in addressing their needs. The next step is to bring all self-help groups together under one umbrella.
People with disabilities and their family members participate in groups to resolve common problems, enhance their individual strengths, and improve their quality of life.
The role of CBR
The role of CBR is to provide support and assistance to people with disabilities and their families to form new self-help groups or sustain existing ones. Where mainstream groups exist within communities, e.g. women"s groups and microcredit groups, the role of CBR is to promote the inclusion of people with disabilities and their family members in these groups.
Self-help groups exist within local communities for people with disabilities and their family members.
Self-help group members develop knowledge and skills that enable them to become contributors in their families and communities.
People with disabilities and their family members are able to access mainstream self-help groups that are available to other members of the community.
Self-help groups promote CBR, and members become involved in the planning and implementation of CBR programmes.
Self-help groups join together to form federations and become self-sufficient.
Some common characteristics of self-help groups that are associated with CBR programmes include their:
generally being formed in response to a particular issue, e.g. no access to education for children with disabilities, limited income-generating opportunities;
informal structure and basic rules, regulations and guidelines to show members how to work effectively together;
shared responsibility among group members – each member has a clear role and contributes his/her share of resources to the group;
Self-help groups provide livelihoods
In Kodobeda, Akwapim South District of the Eastern Region, Ghana, four people with disabilities decided to form a self-help group to improve their economic situation. At a meeting with the chief and elders of the village, they asked to be given three female goats to help them start an animal husbandry initiative. It was agreed, and the group started their initiative. The goats soon gave birth. The young goats were given to one member to rear, whilst the original goats remained with the first member of the group. When the goats gave birth again, the kids remained with the member and the original goats were sold, and the money used to buy another goat for the next member. The process went on until all the members had goats to rear and were able to earn enough to sustain themselves.
Group members are volunteers, in the sense that they are not paid, but they work systematically and regularly to change their own situation through mutual support. Within the context of CBR, self-help groups usually comprise people with disabilities and their families. These groups are usually small, consisting of only a few people, but over time may grow and include 7–30 members. Small groups enable effective participation of all members in discussions and decision-making, whereas larger groups may have more power and influence.
Facilitation and leadership
CBR personnel may be required to take on a facilitator role, particularly when new self-help groups are being formed. CBR personnel can provide guidance to ensure chosen leaders do not dominate the group; they can prevent the hijacking of benefits by some individuals, keep the group motivated, and provide training on different aspects of group functioning (15). It is not necessary to be a person with a disability to work with people with disabilities, but the shared experience of discrimination may strengthen understanding and empathy between an external facilitator and a group. A facilitator with a disability may also be a role model for people with disabilities in the group.
Promoting self-help groups
The CBR project in the Tibet Autonomous Region, People"s Republic China, works with parents of children with disabilities to discover new ways of responding to their children"s needs. These parents identified that prejudicial attitudes and discriminatory behaviour directed towards their children was a priority issue because it prevented their children from attending school, and it was uncomfortable taking their children into the community. CBR personnel, who had previously been introduced to the concept of self-help groups, saw the potential benefit that a self-help group would have for this group of parents.
A couple of parents decided to create a self-help group and started by focusing on raising public awareness about disability. They held these awareness sessions in local tea houses. As the parents came to rely upon one another, and drew increasing comfort from sharing their similar experiences, the group grew from two to 12 members. The community was positive and slowly their attitudes began to change, with many community members offering support, e.g. through donating wheelchairs, during these awareness sessions. This was a great source of encouragement. Many children with disabilities also started attending schools and families are now accepted and included in community activities.
The self-help group has slowly branched into other activities with the support of the CBR programme. It has opened a teahouse, dedicating the profits to poorer families who have members with disabilities. The CBR programme provided the initial grant and business training. The self-help group has also started visiting families at home to provide assistance when they are finding it difficult to follow their child"s rehabilitation plan, due to low educational levels or work obligations. The CBR programme provided training for self-help group members on simple rehabilitation activities to promote child development and CBR personnel accompany them on home visits, to slowly build their capacity and confidence levels. The success of this self-help group has inspired others to form similar groups.
Rural vs. urban self-help groups
CBR experience shows that it is often easier to facilitate the formation of self-help groups in rural areas. Formation of self-help groups in urban settings can be particularly difficult (15) because of frequent migration and difficulties in building trust and a sense of belonging among group members. Although it should be noted that, in rural areas, geographical isolation and the long distances group members may need to travel, and the limited means of communication, may make it difficult to hold regular meetings.
Women and men
The CBR experience indicates that women"s groups are generally easier to form than groups for men. Women tend to have a stronger sense of solidarity towards one another and work more easily in a collaborative way. Where groups have both male and female members, it is important to ensure that women are represented, their voices heard and their issues discussed.
Levels of education
Within self-help groups, members may have varying levels of education. It is likely that people with disabilities will have lower levels of education and therefore may be disadvantaged. It is important that self-help meetings are not monopolized by those people who may have a higher level of education, and for those self-help groups that are based around microcredit, it is important that there is not an uneven distribution of benefits. To prevent inequalities from arising within groups, time needs to be dedicated in the early stages of group formation to building a sense of cohesion and empowerment among the less literate or vocal members.
Many groups have been formed for and by individuals with similar impairments. While single impairment groups have a clear and well defined purpose, often cross-disability groups are more practical in small communities where there are few people with one particular type of impairment. The basic needs of people with disabilities, irrespective of their impairments, are the same, e.g. food, shelter, health care, education. Single-impairment groups can often divide people with disabilities and set up competition for scarce resources.
Disability is often associated with dependency, e.g. with doing things for people with disabilities rather than doing things with them. As a result, people with disabilities who are used to being recipients rather than contributors may lack the motivation and confidence to participate in self-help groups and activities.
Provide assistance to form new self-help groups
CBR programmes need to play an active role in creating self-help groups of people with disabilities and their family members. The process of forming a self-help group will vary according to the local situation, with different levels of support required for each group. A general outline of suggested activities is provided below.
CBR personnel usually start working with people with disabilities and their families in their homes, identifying their needs and providing basic information about disability and the types of support available. As trust and confidence strengthens over time, they can be encouraged to meet with others who share similar experiences. At this stage CBR personnel can:
provide information to people with disabilities and their family members about the concept of self-help groups and encourage them to form a group in their community – this may include talking about the advantages of being in a group and the types of concerns that can be addressed, e.g. concerns about forming a group when the primary focus is to generate income to sustain the family – people may want to know how the group can help them directly by providing regular work and income;
encourage people with disabilities and their family members to identify and talk with other people in their communities who may be interested in joining;
organize a formal planning meeting in an accessible location, if there is enough interest and motivation.
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Discuss what the shared concerns are and establish what the initial focus of the group will be, e.g. sharing feelings and experiences, raising awareness, exchanging information and resources.