Introduction
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.
BOX 13Viet Nam
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.
Goal
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.
Desirable outcomes
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.
Key concepts
Self-help groups
Characteristics
Some common characteristics of self-help groups that are associated with CBR programmes include their:
voluntary nature – they are run by and for group members, have regular meetings, and are open to new members (
17);
generally being formed in response to a particular issue, e.g. no access to education for children with disabilities, limited income-generating opportunities;
clear goals, which originate from the needs of group members and are known and shared by all members (
15);
informal structure and basic rules, regulations and guidelines to show members how to work effectively together;
participatory nature – involving getting help, sharing knowledge and experience, giving help, and learning to help oneself (
18);
shared responsibility among group members – each member has a clear role and contributes his/her share of resources to the group;
democratic decision-making;
governance by members, using an external facilitator only if necessary in the formation of the group (
15);
evolution over time to address a broader range of issues;
possibility of joining together to form a federation of groups across a wider area.
BOX 14Ghana
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.
Membership
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.
BOX 15China
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.
Challenges of organizing self-help 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.
Single-impairment groups
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.
Dependency
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.
Suggested 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.
Getting started
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.
Planning
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.
Ask people what resources they are willing to contribute for the benefit of the group.
Identify a group leader or coordinator – it may be necessary to have more than one.
Allocate tasks as early as possible to help promote ownership and responsibility.
Establish a group identity by adopting a name for the group.
Decide who can join the group – try to keep the group small to begin with as this will provide everyone with a chance to participate.
Decide on how often to meet, setting a date and time for the first meetings. Ensure meetings are arranged in accessible locations and not too far from where the group members live. Consider holding meetings in community locations, e.g. schools, to ensure visibility of the group and the CBR programme.
If necessary, decide how to publicize the group to encourage people to attend the first meeting. This might include talking to people, putting up a poster or advertising on the local radio station or in the newspaper.
Running the meetings
While CBR personnel are encouraged not to be in charge of running meetings, they need to be aware of the basic structure for a self-help group meeting so they can support and assist groups where necessary. The basic structure involves:
welcoming people to the meeting as they arrive;
opening the meeting and encouraging members to introduce themselves;
establishing the rules for confidentiality – for keeping private what is discussed and what happens during a meeting – different cultures may interpret confidentiality in different ways, so it is important to decide what the group wishes to keep confidential;
carrying out the main activities of the meeting;
taking minutes of the meetings, making a record of attendance, key topics of discussion and decisions made;
dealing with administrative matters, e.g. date and time of next meeting;
closing the meeting.
Facilitating
CBR programmes should fulfil a facilitative role in self-help groups, enabling them to work cooperatively and effectively. For example, CBR programmes can:
provide support and assistance for group leaders when requested;
ensure meetings are run so that all members understand what is going on and are able to take part;
encourage the rotation of roles and responsibilities within the group;
assist the group to see how they can provide mutual support to one another, e.g. companionship, taking children to school, starting group saving activities;
check to see that there are fair and transparent methods for sharing the benefits of group activities;
assist with drafting group rules and regulations once the group is well established;
provide financial contributions, e.g. seed money or matching grants to enable self-help groups to expand their activities, and to open bank accounts.
Building capacity
Groups often need considerable support and capacity-building before they can function effectively and independently. Important skills for group members include: preparing agendas, conducting meetings, speaking in public with confidence, writing minutes, resolving conflicts, problem-solving, democratic decision-making, delegation of tasks, monitoring progress. Sometimes self-help groups will benefit from the development of specific skills, and sometimes the skills may already exist within the group. Self-help group meetings in themselves provide a good opportunity for members to practise new skills.
New self-help groups can learn from already established groups in the community. New groups may benefit from inviting members from existing self-help groups within the community – a new self-help group will value most the experience of people in circumstances similar to their own. Early contact between self-help groups of people with disabilities is important for learning, future links and mutual help.
Groups may be hesitant about getting involved in social or political action at first because they feel they lack the know-how or ability. But with time, patience and encouragement, group members will begin to discover their ability to understand, plan and implement the activities needed to change their situation, e.g. mobilizing the community in the form of a petition to local authorities as a first step towards safe drinking water and improved sanitation.
BOX 16Dominican Republic
A mothers' self-help group improves the lives of their children
A self-help group for mothers of children with disabilities was formed in the slums of Santiago, in the Dominican Republic, with the assistance of an international nongovernmental organization. The common interest among the group members was to access services for their children. The government was unresponsive to their children's needs in both the health and education sectors. In the absence of government support, the mothers made a decision to undertake basic rehabilitation and education services themselves. They received training from the nongovernmental organization, and in time extended their services to include other children in the slum areas of Santiago. The mothers' group has continued to grow and has developed support services for adolescents with disabilities and a revolving loan fund. The mothers sought the expert help of the Government's Institute for Co-operatives in forming and managing their revolving fund. The mothers' group continues to grow as it identifies further areas of need; it now organizes social events, awareness-raising opportunities and income generation. The mothers are proud of their success and proud of the success of their children and teenagers.
Develop partnerships with existing self-help groups
In many communities, self-help groups for people with disabilities and their family members already exist and operate independently of CBR programmes. These groups might be for people with a specific condition or impairment, e.g. for people who are blind or deaf, have leprosy, or are victims of landmines. Some groups may focus on a specific topic or issue, e.g. disability rights, income generation, women. Other terms that may be used for “self-help groups” include: local disability groups, parents groups, social groups, peer groups, clubs or mutual aid groups.
The objectives of these groups and the self-help groups initiated by CBR programmes are often similar. Therefore it is important that CBR programmes identify and make contact with any groups that currently exist in the community and work towards developing partnerships to share knowledge and resources and ensure that more people with disabilities and their family members are reached.
Encourage inclusion of people with disabilities in mainstream self-help groups
While self-help groups specifically for people with disabilities and their families play an important role, CBR programmes should also encourage people with disabilities and their families to become members of mainstream self-help groups, e.g. women's groups, youth groups, microcredit groups, farmers' groups. The following activities are suggested:
encourage mainstream self-help groups to include people with disabilities as regular members with equal rights, e.g. ensure they meet in accessible venues;
highlight common issues faced by people both with and without disabilities, e.g. facilitate a discussion about gender discrimination with a women's group and highlight how this issue is shared by all women – this may provide an incentive for mainstream self-help groups to work in alliance with disability self-help groups and/or include people with disabilities in their groups;
identify existing members of mainstream self-help groups who are either disabled or have a family member who is disabled and encourage them to talk about the issues and problems they face and to put disability on the agenda of their self-help group for discussion and debate;
ensure people with disabilities and their families have the necessary skills and knowledge before linking them to mainstream self-help groups, as otherwise they may be vulnerable to discrimination.
Encourage self-help group members to participate in CBR programmes
Self-help group members (from both disability specific and mainstream self-help groups) have the potential to be important resources for CBR programmes, and thus need to be well informed about CBR. Self-help groups can play an important role in creating awareness about disability and promoting inclusive development. Self-help group members may also be able to volunteer their time and contribute to CBR activities, e.g. by identifying people with disabilities in the community, supporting people with rehabilitation activities, and providing follow-up. Disability-specific self-help groups should be particularly encouraged to gradually play a bigger role in CBR programmes. Their participation in the management (e.g. planning, implementing and monitoring) of CBR programmes can make programmes more appropriate, credible and sustainable.
Encourage self-help groups to join together
While self-help groups for people with disabilities and their family members may be able to make a difference at the local level, their members may be limited in capacity to make changes at higher levels. Greater numbers of people can bring about change and therefore the next step is to encourage self-help groups (both those which have been started by CBR programmes and those which exist independently) to come together under one “umbrella” – this is commonly known as a federation. CBR programmes can facilitate the formation of a self-help group federation by bringing together one or two elected representatives from each self-help group. Self-help group federations need to ensure that people of different groups (e.g. of different age, impairment, gender, socioeconomic status) are equally represented. A self-help group federation can also take on greater responsibilities and one day may become a formal organization in its own right.
BOX 17Bangladesh
Strength in numbers
Azgar became one of the first members of the Belgachi self-help group in Bangladesh. His enthusiasm and hard work led to his election as chairman. Today the group has 21 members and meets on a weekly basis to discuss problems and possible solutions. Azgar's physical difficulties, together with his limited access to land, meant that he found it very difficult to support his family. He normally had work for only 10 or 12 days each month. He applied to the Government for permission to farm on nearby wasteland. Although his application was opposed by some villagers, the self-help group continued to support him. After Azgar was awarded an acre of land, a nongovernmental organization provided him with training in agricultural techniques. Today, Azgar grows and sells vegetables and has raised his family's standard of living. Azgar stood for election in the Poradha federation of self-help groups and was elected vice-chairman. He persuaded a Government official to allocate a small piece of wasteland to the federation and inspired members to collect bamboo to build a meeting hall. His continuing task is to establish rights for people with disabilities and ensure their acceptance by the community.
