Self-Help Organizations of Disabled Persons

Contents

VI. How to Strengthen a Self-Help Organization

A. Guiding principles

1. Self-determination by disabled persons

Disabled persons should have the possibility to make decisions within the scope of their abilities on matters which affect their lives. Furthermore, they should be given the support that they need to assume responsibility for contributing to the well-being of the community.

Similarly, as members of a self-help organization, disabled persons should make decisions on the policies and programmes of the organization. By this is meant that a majority (51 per cent or more) of the decision-making body (e.g. board of directors) of a self-help organization should be composed of people with disabilities.

To maintain the self-help nature of such an organization, it is essential that most of the personnel in administrative and policy-making positions should also be disabled persons. Employing disabled people to fill staff positions constitutes a statement to society about the principles of the organization. It makes the organization an example of what people with disabilities can accomplish.

2. Empowerment of disabled people through peer support mechanisms

Disabled persons are often overprotected by their families. Many, especially those disabled from childhood, internalize the low expectation imposed on them. Because society has prejudged disabled persons to be incapable of assuming responsibility, opportunities for basic education and skills training are usually denied them. Thus, many disabled persons in the developing countries of the region have a low self-image and low self-esteem. They lack confidence that they are capable of self-improvement.

Empowerment of disabled persons is a process whereby skills, confidence and self-respect may be acquired. This process enables people with disabilities to explore the extent of their potential and overcome the limitations set by the negative attitudes of society. It is therefore essential for self-help organizations of disabled persons to empower each member to her or his optimum capacity.

This could be accomplished through peer support mechanisms such as peer group discussion, presentation of role models, social skills training and income-generation activities.

3. Application of equal opportunity principles to benefit all disability groups

A self-help organization of disabled persons must be exemplary in ensuring equal opportunities for all members. If it has a cross-disability membership, particular attention must be given to meeting the needs of members who may have mental health problems, those with intellectual disabilities (general learning problems), those who do not have speech (e.g. people with severe cerebral palsy and communication problems), those who have hearing impairment, negative Hansennites and people with acquired immune deficiency syndrome (AIDS). In both cross- and single-disability organizations, efforts should be made to ensure equal opportunities for members who may be additionally disadvantaged as a result of poverty, gender, youth and ethnic origin.

Special attention needs to be paid to ensure equal participation in organizational activities. For example, women with disabilities can be actively encouraged to play a leadership role in the organization. Provision of sign-language interpretation is a means of encouraging members with hearing impairment to express their opinions and participate in activities. When an organization has gained more experience, it should assist people with intellectual disabilities and those with psychiatric disabilities to undertake self-advocacy and self-representation.

4. Emphasis on accountability

There are many levels of accountability of a self-help organization of disabled persons. Most important is the commitment of all concerned individuals to the integration of disabled persons into society. All activities and services conducted by the organization should be designed to meet this goal. The next level of accountability concerns the leadership of the organization. The leaders of a self-help organization of disabled persons should see themselves as facilitators who are accountable to rank and file members. They should view their work in terms of its contribution to or detraction from the strengthening of a grass-roots movement of people with disabilities.

Democratic procedures should be observed to ensure the participation of each member in organizational activities. Adequate opportunity for free discussion of issues of concern to members must be provided, as also all information concerning the organization.

Within the organization, accountability requires individual members to uphold its constitution, abide by its by-laws, and implement its policies.

5. Dialogue and cooperation among diverse disability groups

Where organizations of disabled persons do not exist, and where a small number of disabled persons are dispersed over a wide geographical area, it may be feasible for them to strive for cross-disability membership. If this is the case, a self-help organization should serve people with all types of disability.

Despite differences in disability type and degree, the basic needs of disabled persons are similar. These are needs for housing, transportation, technical aids, access to information in appropriate formats, income-generation, employment, as well as religious, cultural and recreational activities.

At the same time, single-disability groups have specific needs. Sight-impaired people need mobility training and aids. Hearing-impaired people need sign-language training and interpreters. The need for personal assistance is common to physically disabled persons, including those with orthopaedic disabilities.

In a cross-disability organization or forum, adherence to the self-determination principle requires that all disability groups be represented on its decision-making body. A cross-disability milieu provides more opportunity for members to acquire understanding of the specific needs of peers with different types of disability, and to learn to complement each other's abilities.

Where single-disability organizations already exist, dialogue and joint action among these organizations to fulfil common goals would expand their capacity for increasing the impact of their actions on issues of common concern. The stronger organizations should assist the less developed ones by sharing information and providing technical support.

6. Self-advocacy for full participation and equality

Self-advocacy for equal opportunity and full participation of disabled persons in society is a main principle that should guide the endeavours of self-help organizations of disabled persons. In this regard, such organizations should seek opportunities to express, in public forums, their views and opinions regarding issues which influence the lives of their members. They should seek involvement in the processes of planning and implementation of policies and programmes on disability matters at appropriate levels.

Effective self-advocacy requires the members of a self-help organization to have the requisite technical skills and experience. Those skills may be acquired through training programmes. However, the best training is to be acquired through actual involvement in self-advocacy campaigns.

Establishing a network of all self-help organizations of disabled persons is an essential step towards influencing national policies and programmes that have a bearing on disabled persons' full participation and equality. The maintainance of close contact with concerned government agencies and legislative bodies facilitates exchange of information and conduct of timely and effective advocacy work. Building a broad-based coalition of self-help organizations will increase the number of people involved in self-advocacy. More important, a coalition that is fully representative of the entire disability community can speak with a stronger voice than a single organization, however many its members.

7. Provision of close working relations with government agencies and other NGOs

To avail themselves of scare resources in the community, disabled persons' organizations should work closely with government agencies, other NGOs in human development, in particular grass-roots NGOs (people's organizations) and other development-oriented NGOs, and participate in their respective networks. Government development programmes provide various forms of assistance, including technical expertise and other resources for grass-roots organizations. Information on funding sources, know-how on organizing community members, and training opportunities are often provided by those NGO networks.

The involvement of self-help organizations of disabled persons with government agencies, and other development-oriented NGOs, can help raise awareness of disability issues among those agencies and organizations. Direct contact between disabled persons and the staff of those agencies and organizations helps each of the parties concerned to develop better ways of working together. Over the long term, such contact may contribute to the integration of disabled persons into mainstream development programmes. Participation and membership of disabled persons' organizations in coalitions of NGOs in human development can serve as an effective means of advocacy of disability issues as a part of issues that concern all marginalized groups. In this way, disability issues can be included in the agenda of major national forums on development issues.

B. Strategies for strengthening self-help organizations

1. Research on the situation, needs and potential of people with disabilities, and community resources and needs

During the first few meetings, a research project should be carried out by the members. A working group or subcommittee should be elected to lead this project. The research should focus on the situation, needs and potential of disabled persons in the community. Problems and needs expressed in meetings should be recorded.

Information may be sought on:

• Number of disabled persons in the geographical area from which the organization aspires to draw its members;

• Types of disability in that area;

• Gender, age, economic status, employment status, and levels of education and skills of disabled persons;

• Composition of disabled persons' families;

• Extent and nature of support provided by family members.

It may be prudent to start with collecting basic data and expanding the data later. Existing data should be used to the extent possible. Local health centre personnel, especially community health workers or public health nurses, may have statistics concerning disabled persons. If the data are old, try to update them. Special attention needs to be given to identifying girls and women with disabilities, with a view to involving them in the organization.

Recording the specific needs of disabled persons will help the members in prioritizing those services that they feel the organization should provide. Such a record will also be useful for the preparation of proposals for funding assistance.

It may be beneficial for the organization to undertake a community survey to identify systematically the resources that are available for disabled persons in the community, as well as sources of competition for the use of those resources. In addition to identifying resources that are immediately available for mobilization by the organization, resources that are potentially available may also be identified. Further, resources in kind are often more readily accessible than financial resources. Due attention should be given to seeking both for inclusion in the survey.

The community survey should include:

• General demographic information on the community;

• The community's political structure and decision-making process;

• Cultural patterns and religious practices, especially concerning disability issues;

• Service infrastructure (public and private), e.g. housing, schools, transportation system, recreational and health facilities, with emphasis on accessibility for people with disabilities; and costs for the use of those services;

• Type of social development/social service activities and projects supported by various members of the community, especially those related to disability issues;

• Support of those activities and projects, e.g. by politicians, public figures, government officials, entrepreneurs and NGOs.

(a) Devise a disability-focused map of the community

Based on survey information, a disability-focused map of the community may be drawn. The map may show households, roads, paths, waterways, health and social service facilities, recreational places, administrative buildings, places of training and employment, and markets.

Mark those facilities that are accessible for disabled persons and those warranting action to improve their accessibility. Households on the map should be numbered consecutively. Households that are known to have disabled members should be identified.

This map will help members grasp visually the proportion of the families with disabled persons and their locations, and the location of accessible facilities in the community.

The map should be updated regularly. The map, together with other information yielded by the research project and survey, can provide a good basis for planning the scope of action to be taken by an organization.

(b)Compiling a directory of community resources

With a view to developing information and referral services, a directory of community resources may be compiled. The directory could include services and programmes designed specifically for disabled persons and those which, although designed for the general public, could be used by disabled persons. Vocational, educational and recreational services, programmes and facilities are community resources for inclusion in the directory. Names and contact addresses of doctors, lawyers, teachers, sign-language interpreters, and other professionals and organizations that are particularly interested in serving disabled people should also be listed.

If it is kept updated, the directory can be an excellent source of information and referral for members. Directory users should be encouraged to provide regular feedback for updating the directory.

2. Planning as a key to success

Planning skills are a key to the successful operation of any organization. A fund-raising plan, publicity/media plan and staff training plan are examples of the plans of an organization. Organizational planning can be time-consuming because of the need to develop among all concerned a clear understanding of goals and objectives, and a sense of responsibility for assignments. Time is also needed to obtain a consensus on the course of action discussed.

Therefore, when developing a plan for the first time, it is advisable to involve an experienced facilitator, who may be someone from outside the organization.

Organizational planning is simply defined as deciding WHERE the organization is heading, WHO and WHAT are available to help, HOW the organization will arrive at where it is heading, and HOW the members can know where their organization stands at a particular point in time. Careful planning can help minimize the risks, and ensure the best possible outcome.

(a) What are the problems?

Identifying problems

To enable all members to contribute to the identification of problems faced and possible solutions to those problems, brainstorming sessions may be organized. At those sessions, all members should be encouraged to express their views.

A preliminary list of all the problems perceived by the members should be made without criticizing and analysing them. Clarification should be sought if certain problems have not been clearly expressed. If possible, similar problems may be regrouped together. In order to assign priority collectively to the problems expressed, each member could prioritize the problems on a piece of paper. These should be compiled to form the organization's collective decision. In this way, each member could contribute equally to the development of a collective priority list for action.

(b) What do members hope to achieve?

Setting goals and objectives

Now the members have a clearer view of the problems. Next, it is useful to encourage them to visualize a situation wherein the problems faced no longer exist. This is the situation that the organization hopes to bring about and is called a goal.

"GOALS specify the hopes of the group in terms of the particular situation to be reached within a specified time period. They are usually general statements of intent, expressed as long-range, achievable destinations."

Example of a goal:

To improve self-determination and self-reliance among all disabled persons in the community through their participation in a self-help organization within five years.

"OBJECTIVES are more specific statements of accomplishments that the organization is determined to achieve through each project activity."

Examples of objectives:

(1) To improve skills for independent living of physically disabled persons who have lived in institutions for periods of three to five years.

(2) To improve disabled people 's access to and use of public services and facilities.

(c) Who and what are available to help?

Identifying resources for specific activities

A variety of resources may be used to enable an organization to fulfil its goals and objectives. At the planning stage, a preliminary list may be made of resources needed for project activities (see chapter VI, section B. 1 (b) above on "Compiling a directory of community resources").

Project proposals may be developed to mobilize resource for specific activities to address the problems that members have identified. Proposals should include a resource/budget plan. Such a plan helps members set targets for resource mobilization and allocation. The plan should take into account the availability of community resources identified, operational costs, personnel, equipment and supplies.

Although donors tend to be reluctant to provide funds to cover administrative or operational coasts, many self-help organizations of disabled persons need funding assistance for precisely those items. Thus, they should be included in the resource/budget plans of project proposals. Particular attention should be given to addressing those item over the long term.

A sample budget plan is contained in the annex to Part one.

(d) How can the goals/objectives be achieved?

Preparing a plan of action

A plan of action includes objectives and their related activities. The plan of action indicates WHO should do WHAT and BY WHEN to complete each activity.

At the outset, there are usually many more options than the members could ever hope to work on. Members need to choose a balanced set of activities that is optimum for their organization.. A good way to choose is to examine the objectives one by one and consider those activities; that could best be undertaken to achieve each objective.

Example of objective and activity

Objective: To improve skills for independent living of physically disabled persons who have lived in institutions for periods of three to five years.

Activity: Establishment of a peer counselling service and peer support groups.

RESPONSIBLE PERSONS: A member of the Board of Directors and three volunteers who may be members and supporters of the organization.

The persons who are responsible for implementing the activity should develop a detailed roster of tasks, with a schedule for the accomplishment of each task. The detailed roster may be developed using a broad time-frame, an example of which is provided below.

Activity: Establishment of a peer counselling service and peer support groups

Time-frame for the activity: January 1993-December 1994

(i) Analysis of members¹ needs for peer counselling - January 1993

(ii) Identification of members to serve in core peer counselling team - January 1993

(iii) Organization of training programme for peer counselling team - January-February 1993

(iv) On-the-job training of peer counselling team; initiation of peer counselling service by team - March - August 1993

(v) Initiation by core team of peer support groups to work on specific issues - June - July 1993

(vi) Monitoring of quality of service provided, and effectiveness of peer support groups - Monthly from March 1993

(vii) Strengthening of peer counselling service and peer support groups through mobilization of resources for advanced training programme, and recruitment and training of additional peer counsellors from among members - September 1993; March 1994; September 1994

(viii) Evaluation and planning for further development: self-evaluation by core team and peer support groups; evaluation by service users, members of organization and external trainers and resource persons involved in the organization's peer counselling training programme - November-December 1994

(e) How can members know where their organization stands at a particular point in time?

Getting feedback

A good work-plan has to include measures for checking on the progress being made in the implementation of activities. When this is properly carried out, information will be generated which can inform members of the extent of progress made and the difficulties faced that require remedial action. This kind of information also serves as a good input to further planning. (For details, see the next section, "Monitoring and evaluation").

3. Monitoring and evaluation

(a) Monitoring

When the implementation of a project is under way, its progress should be monitored. Monitoring is the continuous or periodic review of progress of implementation to ensure that activities cited in the work-plan of the project are proceeding according to that work-plan.

Monitoring generates feedback that is required for timely remedial action to be taken in the case of problems or constraints. As an essential aspect of good management practice, monitoring needs to be conducted at every level of management of a self-help organization of disabled persons. It is concerned with observation of the efficiency of project implementation at several points in time in terms of:

1. Timely delivery of supplies and funds for project implementation;

2. Actual expenditure against estimated costs;

3. Efficiency and effectiveness of all parties involved in the project;

4. General working conditions of staff;

5. Chances of adhering to timely delivery of results anticipated in the work-plan.

Monitoring consists of comparing planned tasks against the actual work carried out. For example, check whether:

1. Invitations have been sent out on time to participants in the meeting;

2. An accessible venue for the meeting has been found and reserved;

3. Transport has been arranged to receive participants arriving from out of town.

Check-lists should be developed for those who are responsible for implementing tasks and for easy monitoring. Monitoring provides feedback so that the work-plan can be revised if necessary.

In the case of large national self-help organizations of disabled persons, which have chapters at the provincial and district levels, requesting a regular report from each branch organization or chapter may be one of their monitoring techniques. Each chapter may submit a report on a monthly or quarterly basis. The report may include information on items such as number of new members recruited, meetings held and their agendas, any other events organized, number of participants, and financial statements.

A summary of the reports may be put into the organizations' newsletters, if such exist, for distribution among members. Circulation of the outcome of monitoring exercises in appropriate formats enables members to note the overall progress of their organization, as well as that of individual chapters. This information can help motivate members to improve on their efforts. It is also a useful source of information for supporters and donors.

(b) Evaluation

Evaluation is a process for determining systematically the extent to which objectives have been attained. Its purpose is to provide information that is useful in future planning and programming. Evaluation may be undertaken to provide donors with information required for decisions on continuation of funding. It may also be undertaken to improve organizational activities such as fund-raising, service delivery or overall functioning of the organization.

Whereas monitoring is carried out only during implementation, evaluation is carried out:

(a) During implementation (ongoing evaluation);

(b) At completion (terminal evaluation);

(c) Some years after completion, when the activities are expected to have been completely developed and their full impact is expected to have been realized (ex-post evaluation).

Ongoing evaluation examines whether the assumptions made during the project formulation stage are still valid or whether adjustments are required for project objectives to be achieved.

Terminal evaluation is undertaken 6-12 months from project completion and before initiating follow-up to the project.

Ex-post evaluation is undertaken some years after project completion.

Evaluation may therefore be viewed as a learning process. "The very process of carrying out an evaluation can be just as important as the conclusions drawn, since involvement in the process itself often induces a better understanding of the activities being evaluated, and a more constructive approach to their implementation and to any future action required."

Both monitoring and evaluation generate information for decision-making. Monitoring analyses, supplemented by in-depth studies, provide the information base for ongoing evaluation. The two processes together, further supplemented by information on the status of intended beneficiaries before and after a project, provide the information for ex-post evaluation.

Approaches to evaluation can be categorized as:

(i) Participatory approach

(ii) Administrative approach

(iii) External approach

(i) Participatory approach

As full participation is a key principle guiding self-help organizations of disabled persons, each member should be actively involved in the evaluation process. Therefore, the participatory approach to evaluation constitutes self-evaluation by the management and members of the organization. This approach should not only evaluate the outcome of projects or activities against their stated objectives, but also examine the overall level of communication and mutual support among members of the organization, the level of participation in projects or activities, and their impact on members' daily lives.

In this form of evaluation, it is important that members' full access to the results of monitoring and evaluation exercises should be guaranteed. Evaluation questionnaires may be distributed to members. Simple pictures may be used to assist members who are not literate to register their views on particular issues.- Meetings should be arranged to provide forums for members to express their feelings and opinions regarding their involvement, services received and operation of their organization and projects. Feedback from the members should be analysed and reflected in the next round of the planning process. The outcome should be further disseminated in a circular or newsletter to members.

The following chart is proposed as a modality for participatory evaluation in self-help organizations of disabled persons.

	Objectives	Methods	Means	Results
Planned	1. Why did members start this activity?	2. How have members planned to carry out this activity?	3. With what (material, people, money) have members planned to carry it out?
Achieved		4. How did it actually happen? According to plan or otherwise?	5. With what was it carried out? As planned or otherwise?	6. What precise results have members obtained? Are members satisfied? Why?
Future	7. Why do members wish to continue with this activity?	8. How do members plan to carry it out?	9. With what (material. people, money) do members plan to continue it?

Chart 1. A modality for participatory evaluation in self-help organizations of disabled persons

(ii) Administrative approach

The administrative approach to evaluation involves evaluation by the administration (management) of the organization. Its results can be used as part of the annual reports of self-help organizations of disabled persons. This type of evaluation is usually required by funding organizations.

The administrative approach to evaluation requires that organizations have available data and information, both qualitative and quantitative, on project and organizational activities collected over time on:

(a) Range and number of activities (e.g. community awareness-raising campaign, training courses);

(b) People who participated in those activities (number, and type and quality of participation);

(c) Services provided (objectives of service delivery and types of services);

(d) People who received services (how many people received what kinds of services, how satisfied they were with the services received).

It is therefore necessary to develop a system for maintaining accurate and up-to-date records of project and organizational activities. At the minimum, a weekly report containing essential data should be submitted by each member responsible for implementing a particular activity. A monthly report should be made using the weekly reports. Monthly reports serve as the basis of an organization¹s annual reports.

Some objectives of self-help organizations of disabled persons are less easy to measure. Each organization needs to develop criteria for measuring the extent to which its activities contribute to achievement of organizational goals and objectives, within the specific context of the community in which it operates.

In this task, new self-help organizations may consider the experiences of those established NGOs in the field of social development which have rigorously sought to undertake such evaluation. Self-determination, independent living, improvement in accessibility of the built-environment, and improvement in community attitudes toward people with disabilities are examples of goals for which indicators of progress have to be developed by self-help organizations of disabled persons.

It is advisable that data be supplemented by case history vignettes. Such vignettes can illustrate the degree of effectiveness of activities pursued and the quality of satisfaction on the part of members as active agents or as recipients of services.

(iii) External approach

A team of experts may be engaged to analyse organizational strengths and weaknesses in objective terms. Sophisticated professional evaluation is usually undertaken for two reasons, i.e. either as part of a major research project or to justify a major expansion of an organization. This is an excellent opportunity to identify areas and measures for strengthening an organization. Thus, weaknesses inherent in the organization should be expressed. Members can learn from the team evaluation techniques which may be useful for internal evaluation.

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4. Resource mobilization

Lack of skills among members in generating or mobilizing resources can be an obstacle, especially at the initial stage, to the development of self-help organizations of disabled persons. Those skills may be acquired through direct involvement in developing and implementing a resource mobilization strategy for an organization.

In the identification and mobilization of resources, organizational rather than individual effort is usually more effective because it casts a wider net over the community and strengthens the solidarity and commitment of individual members to the organization. Organizations should avoid over-dependence on a few individuals for the resource mobilization which is vital to organizational survival.

Types of resources

Resources may be in the form of cash, expertise, labour, opportunities, ideas, relationships, facilities or services. Festivals can be an occasion for distributing information sheets as part of an organization's membership drive. Personal contacts that members or their families maintain may be helpful in linking an organization with influential public figures whose support can sometimes be more valuable than cash contributions per se.

There are resources which are ready to be used (e.g. a building, furniture, equipment) and resources which have to be developed before they can contribute effectively to an organization (e.g. an influential public figure who has the potential to mobilize support for the organization, but who has not yet developed an in-depth understanding of disability issues).

Some resources have to be developed. Volunteers may need to be trained to provide appropriate assistance. Community leaders, public figures and leaders of professional groups need to be adequately informed on disability issues before they can become effective supporters of a self-help organization.

Community education should be undertaken as a major ongoing activity of the organization to improve public understanding of its purpose and activities. It has been observed that better results are achieved in resource mobilization when an organization has had regular contact with a potential supporter before requesting assistance. Therefore, a community education programme should be an integral part of an organization's overall resource mobilization strategy.

Maintaining a flow of resources

Maintaining a constant flow of resources requires special effort. This is often neglected to the detriment of inexperienced organizations of disabled people. Keeping supporters regularly informed of the progress of the organization and inviting them to events are good ways for an organization to express its appreciation to supporters, while building a long-term relationship with them. (See also "Relations with donors" in the following sub-section on "Financial resources").

Publicly acknowledging supporters and expressing appreciation to volunteers are also effective means of maintaining a long-term relationship with them. Public acknowledgement may be in the form of cultural performances by members at social functions with which their supporters are associated. Volunteers may be encouraged through the presentation of certificates of appreciation and small gifts handcrafted by members.

(a) Financial resources

While not all projects require big budgets, without financial back-up some projects may not be launched. To begin with, membership fees may be collected.

For the philosophy of self-help to be translated into actual programmes, members need to acquire fund-raising skills. Fund-raising activities should be initiated at the startup of an organization.

There are two primary ways to raise money: (i) personal appeal via members' fund-raising activities, and (ii) grants from foundations, aid organizations, government agencies or other sources.

A fund-raising committee may be set up to develop short- and long-range plans regarding fund-raising, and to assign specific tasks to various members.

Personal appeal fund-raising

Personal appeal fund-raising is a step towards increasing an organization's economic self-sufficiency. Members can organize special events, such as bazaars, walkathons, concerts and cultural shows, sports tournaments, celebrity talks, special luncheons, dinners, dances, telethons and radio marathons, direct mail, raffles, and auctions.

The organization may seek donations from well-to-do individuals in the community who support disadvantaged groups. People are more likely to contribute to a cause that they view as being worthwhile. Through personal contact, members may impress on prospective donors their sincerity and commitment to their organization's activities. Members of the community who have moved away and are enjoying relative affluence may also be contacted to extend their financial support.

When approaching prospective donors, members need to know the answers to possible questions that may arise about the organization and its activities. Members also need to have sound social skills for approaching donors on a personal level. They should respect others' time and schedules, be courteous, and make a good physical presentation. At the same time, they should be personal without being too familiar, and appreciative while maintaining their dignity. It may be a good idea to have role-play practice sessions for members who need to develop their social and communication skills.

Good publicity will help an organization to receive public recognition. It is, however, up to all members and the Board of Directors to ensure that the integrity of the organization is not compromised by the actions of self-seeking individuals.

When seeking donations it is of the utmost importance that a self-help organization does not project an image that its members are disabled persons in need of charity. Rather, it should convey a clear message that disabled persons are self-reliant but disadvantaged due to social and physical barriers. Thus the organization is seeking assistance in overcoming those barriers so that its members may lead productive lives as full citizens.

Self-help organizations of disabled persons should adhere scrupulously to the following principles in undertaking fund-raising activities.

• Fund-raising terminology and related publicity endeavours must not perpetuate negative images of people with disabilities, e.g. as being pathetic, dependent or helpless, nor reinforce discriminatory behavior towards them;

• Fund-raising activities should present positive images of people with disabilities;

• If a diagnostic term is to be used, it should be the term preferred by the group in question, e.g. "people with cerebral palsy" rather than "spastics";

• Age-inappropriate images are not to be used in fund-raising campaigns of organizations providing services for adults

• Service-users should not be coerced in any way to assist in fund-raising activities;

• People with disabilities should only choose to participate in fund-raising activities if the resources generated are to be channelled to services that will assist in disabled people's integration into society;

• Fund-raising publicity should not create the impression that giving money is the only way to assist people with disabilities.

Applying for grants and funds

It is sometimes necessary for a self-help organization to request aid from funding organizations in order to develop the infrastructure of the organization at the beginning.

When seeking grants or funds, members may study funding sources through established NGO networks, government information centres, university libraries, and the public relations departments of corporations.

Next, it is useful to study the donors and their funding patterns. In this regard, the study should cover areas of interest and priority, the maximum amount of assistance offered, past projects that have received funds, persons to be contacted, procedures to be followed, and deadlines for application. If possible, members should meet with personnel dealing with applications to obtain up-to-date information.

Learning to write a good proposal is essential. Find a guidebook to write a proposal. Experienced persons in established NGO networks may be able to assist in project writing. Project proposals that have received funding can serve as reference material.

Donors are typically interested in the following questions when considering a proposal:

• Is the proposed project compatible with the funding priorities of the donor?

• What is the proposed budget?

• Are the costs fully justified?

• Is the organization trustworthy?

• What are the history and experience of the organization?

• What is the problem, need or want addressed? What solution is being proposed, and why has it been selected?

• Is the project operationally feasible?

• Are the costs and needed expertise within the means of the donor?

  Essential features of a project proposal are:

• A project title that accurately reflects what the main purpose of the project is;

• Project objectives;

• Rationale for the project: why it should be undertaken;

• Work-plan: Activities and schedule for implementation

• Budget;

• Funding assistance requested and resource inputs that the organization will contribute to project implementation;

• Expected outputs and results.

A sample format is provided in "Project idea" in the annex.

The outcome of prior research on the funding preference of a prospective donor may be used to highlight aspects that would be particularly attractive to that donor.

In addition, if a prospective donor is not familiar with an organization seeking its assistance, it is useful to attach a concise description of the organization, its goals and objectives, membership, activities undertaken and evidence of its credibility.

Donors may be categorized as follows:

• NGOs (religious and secular) and private foundations.

  Examples: OXFAM, Christoffel Blindenmission (CBM), Swedish Organization of Handicapped International Aid Foundation (SHIA), Action on Disability and Development (ADD).
  

  
  

• Bilateral (government to government) aid agencies: it is possible for an NGO to draw from bilateral aid grants, subject to agreement between the government of the recipient NGO and the concerned donor government.

  Examples: Canadian International Development Agency (CIDA), Japan International Cooperation Agency (JICA), Swedish International Development Authority (SIDA), and Norwegian Agency for International Cooperation (NORAD).
  

  
  

• Multilateral (involving more than two governments) aid from inter-governmental agencies.

  Examples: United Nations Children's Fund (UNICEF) (childhood disabilities, children, young people, women); International Labour Organisation (ILO) (vocational rehabilitation, employment, technology, non-formal sector, handicrafts); World Health Organization (WHO) (health, primary health care, community-based rehabilitation); United Nations Development Programme (UNDP) (small enterprises, industry, matching funds for NGO activities); and United Nations Environment Programme (UNEP) (environment).

  Usually, these agencies work with and through national governments. Some agencies may also fund NGOs directly.
  

  
  

• Others: A number of donor governments, through their embassies in developing countries, may make available to NGOs small grants for disability activities. Again, this may be subject to clearance by a recipient NGO's government.

Relations with donors:

It is desirable to develop mutual trust with donors. Organizations that deal directly with donor representatives should do so in a straightforward and positive manner.

Show them the successes and failures of the organization and the difficulties it is facing. If progress reports are specifically required, these should be sent on time. In any case, it is good practice to keep donors well-informed through periodic progress reports. If possible, supplement written reports with photographs documenting project progress.

Donor representatives may be invited to observe at firsthand the outcome of funding assistance provided. Moreover, articles may be written on the project being implemented, with highlights on its donors, for publication in disability newsletters and the mass media. Copies of published articles should be sent to each donor.

As a self-help organization becomes successful, it may attract more funding. However, care should be taken to ensure that only those projects which the organization has the capacity to manage are embarked on.

In the long term, an organization should aim to self-finance the running costs of its projects. Otherwise it will always be dependent on external resources, thus contravening the goals of self-help and self-reliance of disabled people that are its raison d'etre.

(b) Non-financial resources

The services of volunteers and donations in kind constitute non-financial resources.

Volunteers may be students, laypersons and professionals who are willing to share their talents and skills with voluntary non-profit organizations, including self-help organizations of disabled people. Some examples of volunteers' involvement are their services as instructors for recreational activities and literacy classes, administrative and clerical assistants, event organizers, and personal assistants for severely disabled members.

A self-help organization of disabled persons should formulate clear policy guidelines on the involvement of volunteers, particularly if members are to adhere to the principles of self-determination and majority control of the organization. An orientation module may be developed to inform volunteers of the principles of the organization and to introduce volunteers to members.

As for in-kind donations, commercial enterprises often prefer to donate services, e.g. professional skills of its staff, transport services, products, e.g. food and drink, and office equipment, e.g. computers and audio-visual equipment. Consider these more, rather than requesting only monetary assistance.

5. Income-generation

The economic security of members is one of the most important long-term goals of any self-help, organization of disabled persons. This goal is especially important in societies that do not provide social security for people with disabilities. It is also of particular importance given the lack of work opportunities for disabled persons in the open market in most developing countries in the ESCAP region. Therefore, there is an urgent need to create employment for disabled persons in those countries.

However, relatively little attention has been given to developing disabled persons' potential for achieving economic independence. Pursuit of self-employment, especially through group-based income-generation schemes, may be a valid option for disabled persons in those countries.

(a) Individual self-employment

"Self-employment" or "small enterprise" means the smallest type of enterprise that employs a few workers, maybe only the owner. A successful self-employment scheme requires a good opportunity, the willingness to take risks, the ability to work hard, and above all entrepreneurial spirit.

Disabled people may venture into self-employment because there are no other alternatives. However, there may be other reasons why self-employment suits some disabled persons. Self-employment is considered to be the most cost-effective means of creating jobs. The capital requirements are usually very small. The self-employment activity usually starts at a location close to the owner's home. Thus, it does not require long distance travel to and from the business site. Some small businesses can be undertaken at home. They tend to involve the whole family, particularly in rural areas. This mode of enterprise creates mutual support and security that benefits most disadvantaged groups, including people with disabilities. Basic literacy and numeracy skills are needed for operating small enterprises, but higher education may not be necessary or desirable for the endeavour.

The variety of small enterprises is countless. A disabled person may thus be able to choose one which best suits her or his conditions, including capital, family support, skills, and mobility. The kinds of small enterprises that disabled persons are engaged in range from traditional activities such as tailoring, farming, poultry-raising, massage, lottery ticketselling and shoe-shining, to such unique activities as song writing, telephone booth operation, petrol selling, toy shop management and library operation.

However, self-employment is obviously not for everyone. It requires entrepreneurship, which is not a characteristic common to each person, whether or not she or he is disabled.

(b) Group-based self-employment

Self-employment can be a group activity whereby a number of people come together to pool their resources and skills. There are many advantages in this form of self-employment: shared responsibility; larger-scale operation; and benefits of mutual support and encouragement. However, group enterprise has its own problems owing to the very characteristic of a group operation. A group of people sometimes fail to work together effectively. Jealousy and inability to accept leadership among the group may be a common cause of failure to cooperate.

Disabled people have, however, more reasons that motivate them to work together effectively. They share the common bond of being disabled and the consequences of being discriminated against on the basis of their disabilities. A self-help organization of disabled persons may play an important catalytic role in encouraging members to initiate income-generation schemes.

Suggested steps for a self-help organization of disabled persons to establish an income-generation scheme

STEPS

1. Identify disabled members who are interested in working collectively to generate income for themselves. Cooperation with non-disabled persons may be sought, but decision-making should remain with the disabled members.

2. Observe and study the experiences of income-generation projects run by grass-root NGOs, especially women's organizations.

3. Determine members' skills that are relevant for initiating an income-generation scheme.

4. Contact a government agency which is responsible for promoting community development activities to find out what kind of government support and resources are available.

5. Undertake a feasibility study jointly with a government extension worker, after interested members have formed a group and discussed the type of scheme that they wish to initiate. The study should cover such vital questions as demand and supply, availability of raw materials, market trends and competition, training needs, production costs, pricing and profitability, marketing and distribution.

   Some examples of income-generation schemes are egg production, making of furniture, jewellery, candles and uniforms, silk-screen printing, and production of technical aids and appliances, including low-cost wheelchairs.

6. Subject ideas and proposals to critical examination by group and community members and government fieldworkers. To the extent possible, the resources needed for the scheme should come from the local community. External assistance in the form of tools, equipment and training should be considered as a last resort.

7. Write a project proposal to obtain seed money (see "Applying for grants and funds" in section VI, B.4, "Resource mobilization").

   All group members should be involved from the beginning in planning the scheme in detail. Democratic procedures (one person, one vote) should be strictly adhered to, to avoid domination and possible exploitation by a few members of the group. The consensus reached after thorough discussion of the opinions and ideas of all members should be fully reflected in the final structure of the scheme.

8. Design a flexible structure for the scheme to permit division of responsibility for tasks and effective teamwork. Each member should choose her or his area of work on the basis of her or his strengths and weaknesses. The training needs of members should be assessed and training should be arranged accordingly.

9. Ensure that all members participate in decision-making, monitoring and evaluation of the scheme. Feedback from the members should be reflected, as appropriate, in further planning and should be used to motivate members to improve their own performance.

10. Guarantee a fair share of benefits accruing from the scheme. All members should be involved in decision-making on sharing of benefits among themselves. A distribution plan may be developed. Members should be given the opportunity to express freely their satisfaction, or otherwise, with the actual sharing. This step is important, as the members' commitment to continued cooperation in the group may be enhanced by this process.(39)

11. Set aside, if possible, a portion of the benefits for expansion of the scheme and/or for the provision of services for the welfare of members.

12. Once the scheme is operational, and regular production and sales take place, any external assistance that the group may have depended on should be reduced and eventually withdrawn.

(c) Meeting members' needs for support services:

One advantage of a group-based income-generation scheme over individual self-employment is the possibility of service provision for the welfare of members by using its annual surplus. The most common services that a traditional income-generation scheme or cooperative of disabled persons (see the definition of "cooperative of disabled persons" in the next section) provides for its members may be small loans for incidental expenses, sickness benefits, and obituary gifts or funeral allowances upon a death in the family. In view of the lack of community support services, including rehabilitation, for disabled persons in many developing countries, it may be desirable for an income-generation scheme or a cooperative of disabled persons to assume a role in organizing support services for its members. Thus, those schemes or cooperatives may fulfil dual functions: provision of jobs, and provision of rehabilitation and other support services for their members.

To sustain the dual functions, the annual profit (surplus) earned by a group can be ploughed back into the creation of activities which serve the welfare of members. Support service provision may be started on a small scale and be developed in progressive stages.

The first service could be enhancement of members' skills. This may be achieved through on-the-job training for members, in collaboration with existing facilities. Experienced personnel may also be invited to upgrade the expertise of members.

When the group grows to such a stage that it expands its membership to severely disabled persons, personal assistance should be part of the services provided by the group for those members. Personal assistance includes assistance in basic personal care such as bathing, grooming, toileting, transferring, as well as in home chores such as cleaning, washing, shopping and cooking, and the performance of tasks at the workplace. Interpreter service for hearing-impaired workers, and reader service for sight-impaired workers are further examples of services that make it possible for disabled people to be productive workers. The use of income generated through group effort to provide personal assistance in an organized manner enables severely disabled persons in developing countries of the region to live independently in the community and become productive members of society.

When an income-generation scheme expands and begins to provide extensive services for its members, it is advisable to consider the formation of a cooperative. Forming a cooperative provides a legal structure to an income-generation scheme, and could help its members gain more access to services from government agencies and other organizations that are available to the community in general.

(d) Cooperative of persons with disabilities

The ILO definition of a cooperative is as follows:

"A cooperative is.. an association of persons who have voluntarily joined together to achieve a common end through the formation of a democratically controlled organization, making equitable contributions to the capital required and accepting a fair share of the risks and benefits of the undertaking in which the members actively participate." (Article 12, the Cooperatives Recommendation 1966 (No. 127), ILO)

A cooperative of disabled persons is considered to be one form of self-help activities. This section examines the establishment of cooperatives of disabled persons as a viable vehicle for income generation as well as the provision, within the community, of rehabilitation and other support services for members.

The objectives of a cooperative of disabled persons are to:

• Assure its members of employment and a decent wage, in accordance with their physical and mental abilities, and adequate working conditions, with a view to instilling a spirit of participation and mutual help;

• Create, or ensure access to, services of basic rehabilitation as well as other facilities that are needed for protecting, maintaining and increasing the working capacity of members, as well as (re-) stimulating their social activity.

Membership of cooperatives of disabled persons

Potential members of cooperatives of disabled persons are individuals whose prospects of securing, retaining and advancing in suitable employment are substantially reduced as a result of duly recognized physical or mental impairment. In practice, however, membership, at least in the initial stages, may be more selective, in view of the economic nature of a cooperative.

A cooperative of disabled persons often starts with a group of ex-trainees of the same institution. They usually have the same disability and share a strong common bond based on their training. They are likely to be accustomed to a common discipline in learning and working. Thus, cooperatives of disabled persons tend to be founded by groups that are homogeneous in terms of disabilities and training experience.

The membership of a cooperative of disabled persons should, however, be extended to various categories of disabled persons, including people with severe disabilities. The question here is how a homogeneous group of founders can develop facilities for other disability groups, including severely disabled persons. This process must be undertaken step by step in order to maintain sound economic performance by the cooperative. Expansion of membership to other disability groups could in fact improve the performance of the cooperative by complementing the limitations of one disability group with the strengths of others, through careful planning of the production process.

People with disabilities can undertake tasks which had earlier been considered unconventional for them, if they have personal assistance services. There are instances of people with intellectual disabilities working as the personal assistants of people with physical disabilities. With personal assistance services, a cooperative of disabled persons can have the heterogeneous (cross-disability) membership that enhances its productivity.

An alternative approach for a cooperative of disabled persons may be to create within its enterprise a sheltered workstation for those who are not able to work in the environment of a cooperative of disabled persons. Home-based work programmes set up by a cooperative also have the potential to benefit those severely disabled persons who prefer to work at home. Such programmes, run by a cooperative of disabled persons, could, with relatively modest investment, provide jobs for a large number of disabled persons.

It is imperative that governments recognize cooperatives of disabled persons as "economic units with social welfare aims" rather than only as "economic enterprises". In this regard, Governments may be requested to make certain amendments to cooperative laws and regulations in support of the activities of cooperatives of disabled persons. The amendments could be along the lines of the following:

• Total tax exemption for the first five to seven years of operation; thereafter the cooperatives would be authorized to deduct training/rehabilitation costs, cost of adapting equipment, etc., from revenues subject to income tax;

• Exclusive production rights for certain products and services; certain types of work in government offices (e.g. maintenance of furniture) and in State-owned industries (e.g. production of selected components under subcontract) should be reserved for cooperatives of disabled persons.

Regarding support for such cooperatives, there is a great need for consultation and cooperation between government departments concerned with cooperatives and those departments providing services for disabled persons, including social services, rehabilitation, vocational rehabilitation and employment. Whereas a department of cooperatives can provide technical support on cooperative matters, it may not have expertise on the rehabilitation of disabled persons or employment of disabled persons. In addition, other departments could contribute to a cooperative of disabled persons by providing special funds for the adaptation of equipment for use by disabled persons in the workplace, and in support of social service programmes implemented by the cooperatives. Opportunities for members to participate in training programmes conducted by various departments would also be a valuable contribution to strengthening the cooperatives.

How to set up cooperatives of disabled persons?

The following module summarizes one approach to setting up a cooperative of disabled persons.

Step 1: Formation of a core group of disabled persons who are committed to setting up a cooperative

Step 2: The conduct, by the core group, of a study of cooperatives

The Department of Cooperatives, a local cooperative union, federation college or training centre should be contacted for assistance in this endeavour. Visits may be made to cooperatives of disabled persons, or other types of cooperative, to observe the practical aspects of running cooperative.

For practical reasons as well as for the development of group work, subgroups could be formed. The following are examples of assignments that could be given to individual subgroups to study: organizational structure of cooperatives; choice of economic activity and marketing options; rehabilitation and other services provided; financial management and resource requirements; and reasons for the failure of cooperatives.

Step 3: Preparation for registration

As the procedure for the registration of a cooperative may be time-consuming and complex, this matter should be dealt with early in the founding process. Unlike other types of cooperatives, there are no model by-laws for cooperatives of disabled persons. Such cooperatives have not yet been given legal definition. The core group should examine carefully which type of cooperative by-laws would best suit the needs of the cooperative it intends to set up. There are various types of workers' cooperative in operation. The option of registering the cooperative as a "welfare cooperative", which exists in some countries, may be explored.

Step 4: Drafting of by-laws

By-laws, which should be approved at the first general meeting of a cooperative, may be drafted by the core group. To protect the essential nature of the cooperative as an organization of disabled persons, by-laws should specify the maximum percentage of non-disabled persons who can be admitted to its membership. A maximum of 25-30 per cent of non-disabled persons would appear reasonable. To further safeguard control by disabled members, the by-laws should also include a provision for a majority of the committee for management of the cooperative to be disabled workers.

Step 5: Surveys on choice of economic activities

Before deciding on an item that the cooperative is to produce, it is useful to carry out a survey on:

• Crafts whose current production is not meeting demands

• Industries that might be interested in subcontracting to the cooperative

• Business enterprises which are willing to purchase supplies locally rather than from outside the community

Step 6: Consideration of a management structure

To assist in the establishment of a management structure, an analysis should be made of the leadership qualities and the skills of the members. It should cover individual work capacity, skills and the type(s) and degree of disability of each member. The information has an important bearing on determining the type of economic activity of the cooperative of disabled persons.

An assessment of other resources at the disposal of the group needs to be made. Those resources could include tools and equipment, work experience, capital and resources available from family members.

More delicate questions concerning the social conditions of members of the group need to be answered. The needs of the members should be identified early so that some pre-emptive measures to meet those needs may be established as soon as possible. This would help obviate any sudden diversion of cooperative funds for investment purposes to assistance in meeting members' acute welfare needs.

Step 7: Identification of financial agencies and other possible sources of support

It is unlikely that the initial capital contributed by members will be sufficient. Work space and equipment need to be obtained, raw materials purchased, and some working capital ensured until revenue from work or service starts to flow in. Thus, support has to be sought from various sources. The support has to be sought from various sources.

(i) Share capital from a government agency or the local community, whose representatives may acquire a seat on the management committee;

(ii) Grants and subsidies from the department of cooperatives; grants from social service departments, or similar government agencies to be invested in special equipment; grants from the local community and international funding agencies (intergovernmental and non-governmental);

(iii) Loans from a cooperative bank, similar development financing organizations, and commercial banks.

In order to obtain a loan or a financial contribution, a financial projection must be presented. In many cases the agency concerned may help to make such a projection. If not, assistance from another cooperative or association of/for disabled persons may be obtained.

The founding process of a cooperative is a very important phase of its existence. Outside guidance and assistance are important factors, but these should always be rendered in a way that permits the initiative of the group to grow and prevail. As the talent and experience of the founders grow, their reliance on outside aid should diminish.

There are many questions to be asked before the actual setting up of a cooperative of disabled persons, including management, selection of economic activity or product, and training.

The formation of a cooperative of disabled persons can be one important way to meet the economic and social needs of disabled persons in both urban and rural areas. It is hoped that more self-help organizations of disabled persons in developing countries of the region will give serious consideration to this possibility.

 

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6. Official registration of an organization

When a group of people with disabilities decides to formalize its activities in an organizational framework, it is advisable that it should look into the possibility of official registration in accordance with government regulations. The benefits of being registered, and registration requirements and procedures, differ from country to country. Among the benefits of registration may be receipt of tax exemption status as a non-profit organization and/or becoming an official entity which can receive government grants and aid from funding organizations. In some countries, an organization has to have been in operation for at least one year prior to being eligible to apply for registration. Therefore, it is important to contact the government agency which deals with official registration of NGOs to determine the exact requirements and procedures.

Requirements for registration

Some common requirements that must be met by NGOs applying for official registration are listed below.

• Constitution of the organization

  The constitution of the organization should conform to government regulations concerning NGOs. It should include the name, address and purpose of the organization; membership rights and duties; structure of the organization, including general assembly, board of directors (executive committee), auditors, mandates and the responsibilities attached to the different bodies/committees in the organization.

  As a self-help organization of disabled persons, its constitution should mandate that disabled persons comprise a majority (51 per cent or more) of the board of directors of the organization.

  The constitution should be adopted at the inaugural general meeting of the organization.

• Minutes of the inaugural meeting

  The main points discussed and the decisions reached at the inaugural meeting Should be reached for future reference.

• List of members of the board of directors

  When the above requirements have been fulfilled, an official letter requesting official recognition and registration may be sent to the concerned government agency, with the documentation required.

Responsibilities of the board of directors

As an organization needs to carry out programmes on a regular basis, a number of people should be elected to its board of directors. Between annual general meetings, the board makes decisions on behalf of all members. Office-bearers, e.g. a chairperson (or president), vice-chairperson (or vice-president), treasurer and secretary, may be elected by the board, or elected separately from the board at a general meeting. Because the members of an organization delegate their decision-making power to the board of directors during the interim period between general meetings, the board is accountable to the members of the organization.

The responsibilities of the board of directors of a large self-help organization of disabled persons may include the following:

The board of directors:

• Is legally responsible for the management activities of the organization, including financial liability;

• Formulates long-term and short-term plans;

• Formulates organizational policies and procedures;

• Represents the interests of members of the organization and is accountable to members;

• Recruits, supervises and dismisses, if necessary, the co-ordinator of administrative staff, who is responsible for implementing the policies and plans decided by the board of directors. If the organization is unable to hire a co-ordinator, a member or a group of the board members may assume this task.

• Is responsible for fund-raising and represents the organization before the public.

Special attention should be given to achieving gender balance of the board.

If the organization has cross-disability membership major disability groups should be represented on the board.

Committees should be formed within the board to undertake different responsibilities, e.g. administration, fund-raising and financial management, public relations, and project and service development. Each committee should draft a plan for the fulfilment of its responsibilities. These plans should be discussed, amended and approved at general meetings.

7. Financial management and budgeting

When a self-help organization is first set up, its board of directors should obtain the services of a professional accountant to advise the organization in an honorary capacity.

The type of accounting procedure employed by an organization depends on the particular stage of its growth, the number of funding sources, the sums of money involved, the range of expenditure, the number of its assets and the extent of its liabilities. A small, newly formed organization will only need basic bookkeeping procedures. As the organization expands its activities, the increasing complexity of the accounting procedures calls for the services of a professional bookkeeper or accountant.

To ensure proper control over the organization's finances, monthly financial statements and budgets should be presented by the treasurer to every meeting of the board of directors. This will enable the board to continuously monitor and review the income and expenditure of the organization.

Before the organization makes any payments, it must receive an account (bill) verifying the funds to be spent, or authorization from the board of directors stating that the amount stipulated will be spent. Prior to any payment being made, whether by cash or cheque, it is advisable to have at least two office-bearers sign their approval of payment. If the organization makes payments by cheque, it is imperative that no blank cheques be signed.

At the end of each financial year, an independent certified public accountant should audit all the organization's account books (ledgers, journals, receipt books and related documentation). The auditor's report must be presented by the treasurer to the annual general meeting of members that immediately follows the end of the financial year. The report should detail a statement of income and expenditure, a statement of assets and liabilities and the auditor's opinion of how the accounts have been kept, together with recommendations on any changes that should be made to the organization's accounting practices in the previous financial year.

Budgeting or cost monitoring is a critical procedure. Neglect of this procedure can lead to massive overspending and eventual bankruptcy. It is usually a 12-month plan of how the organization will spend its funding. It is based on income and expenditure advice on when the organization can expect to receive any income during the year and when it is likely to spend it. Therefore, by closely monitoring the organization's expenditure, its cash flow (more income than expenditure) is never a negative balance. The budget lists all the organization's sources of income, all its various types of expenditure, and shows that its income will cover its expenses.

There are two basic ways of calculating the budget:

• The first way is to use the previous year's income and expenditure figures and make adjustments for any new expenditure items or other changes, plus inflation.

• The second is to hold expenditure to the previous year's figure and possibly reduce it even further.

The budget amount is then divided by 12 to obtain an average rate of expenditure for each month.

It is then the duty of the treasurer, when she or he presents the statement of income and expenditure for the month and year to date to the board of directors, also to include the budget for comparison purposes. The board of directors then reviews the monthly income and expenditure in comparison with the budget. If it exceeds the budget forecast, the Board reduces expenditure. Control of income and expenditure allows the organization to implement all its plans over a 12-month period.

8. Ensuring accountability

The first step in this strategy is for the organization to agree as to what it expects of its members, elected officials, and paid and unpaid staff. These agreements are documented in the constitution, by-laws and policies of the organization. They set out the responsibilities and authority of each position, the limit to that authority and when it can be used. Although in theory each elected official and paid and unpaid staff should be accountable to members for their day-to-day work, in practice this is impossible. Therefore the constitution may stipulate that members elect their representatives to the board of directors at annual general meetings; these representatives will then run the organization on behalf of its members.

The office-bearers of an organization (president, secretary, treasurer, and others) are then responsible and may be held accountable for the management of the organization between meetings of the board of directors. Staff are responsible and accountable, through a senior staff member, to the office-bearers for their day-to-day work. Problems in organizations usually arise when one of the above groups bypasses its supervisors, whose duty it is to ensure accountability.

Each elected official, member and staff, in addition to receiving copies of the constitution, by-laws and policies of the organization, must also be fully informed in writing of the rights, responsibilities, duties and authority that she or he may have and the assistance that may be expected. For accountability to work smoothly and effectively, there must be a two-way flow of information through regular communication. This could include regular briefings, debriefings and written reports regarding the work of the organization or its committees and any matters it is currently trying to redress.

Within the constitution and by-laws should be set various procedures to ensure that the members, staff and elected officials can be held accountable for their actions and disciplined if necessary.

• Members

  A clause should be placed in the constitution to give
  members the right to call a special general meeting on any matter if a certain percentage, e.g. l0 per cent of the membership, sign a petition calling for such a meeting.

• Elected officials

  The constitution should give authority to the board of directors to discipline and/or remove an elected official for any serious offence committed.

• Staff

  The constitution should give authority to the office-bearers or board of directors to discipline or remove any staff for any serious offence committed.

Finally, the key to accountability is open communication at all levels and support for those who most need it. Clear understanding of the policies and philosophy of the organization and the responsibility of each member is essential. Willingness to listen to the opinions of others, focusing discussions on issues and not on personal differences, respect for the decisions and activities of the majority can all contribute to ensuring organizational accountability.

9. Peer support to empower disabled persons

When a self-help organization of disabled persons decides to provide support services to its members, and possibly other disabled persons in the community, empowerment of disabled persons should be the purpose of the provision of these services.

Disabled persons often lack the opportunity to develop their skills so that they can contribute to the community and develop a sense of self-respect. A self-help organization of disabled persons must therefore provide avenues for the personal growth and development of all its members. The importance of enabling and empowering members to make decisions about themselves and for themselves cannot be overemphasized.

The first step is for members to develop self-understanding in a mutually supportive group context. In the development of self-understanding, each member analyses how her or his own attitudes and behaviour reinforce or change the social environment in which she or he lives. The development of confidence, assertiveness and a constructive way of relating to one's social environment is built on this clear self-understanding.

Peer support, information and support service programmes are the means to help members achieve self-understanding, on an individual and a group basis, and to develop positive interpersonal relations.

Inaccessibility of services and facilities, imposed dependency on attendant care and lack of income are common problems experienced by disabled people. However, not all disabled people will have had the opportunity to learn to conceptualize those problems, or to relate them to their systemic roots in overall development processes.

It is important for individual disabled people to learn to articulate their problems for discussion within a peer-group context. Through peer-group discussion, members of self-help organizations can gradually develop mutual understanding of the problems faced by individuals. That understanding can then serve as the basis of the peer group's perception of the commonalities that bind members together as a distinct disadvantaged social group.

The process of articulation, conceptualization and the crystallization of members' perception of problems that are common to all is a vital ingredient in the development of organizational solidarity.

Peer-group discussion is sometimes referred to as "peer counselling". Peer counselling has been adopted by many self-help organizations as part of empowerment programmes for their members. A person who has attained knowledge and coping skills based on personal disability-related experience conducts peer-counselling sessions to assist others with disabilities in developing their own coping skills. The sessions may be on an individual or group basis. A good peer counsellor serves as a role model of a disabled adult who has transcended difficulties arising from her or his disabilities, to be recognized in the wider community as an equal member.

Peer counselling

In peer-counselling sessions, discussions are conducted with the aim of providing emotional support to and developing empathetic relations with the person(s