People for Awareness on Disability Issues (PADI)
Personal Assistance for Independent Living Programme (1995-1997)
Country: South Africa
Sector: Disability and Independent Living
Project Title: Personal Assistance for Independent Living (PAIL)
Implementing Agency: People Awareness on Disability Issues (PADI)
Contact Person and Address: Fadilla Lagadien, Director, PADI
7700 Cape Town, South Africa
Telephone: (27-21) 6973944 or 6960366
Fax: (27-21) 696 9171
Proposed Duration of Programme: Three Years
Proposed Starting Date: As soon as funding is secured.
Proposed Level of Funding: Total Amount (Rand)
Year One 368 220
Year Two 405 040
Year Three 441 870
Total Applied For 1 215 130
Summary of Project Proposal:
The PAIL Project will increase by at least 20% over 1995 population (within a period of ten years) the number of rural and urban severely disabled persons living an independent life.
The immediate objective of the PAIL Programme is that by the end of the project period a minimum of five hundred severely disabled people per year per operational region will have achieved greater independence than in 1995, through the phased implementation of comprehensive independent programmes in South Africa.
Some of the anticipated outputs are:
1. Programme Context
1.1 Description of the Sector
Traditionally, disabled people have been thought of as a very small sector of the population whose needs are best taken care of by either charity or through the welfare sector.
This perception began to change when - during the International Year of Disabled Person (1981) - the World Health Organisation estimated that the average number of disabled people in any country was as high as 10 per cent of the population.
The South African Department of Health and Welfare, usually known for its conservatism, has put the figure of disabled people in South Africa as even higher than the international average - that is, at more than 12 per cent. Clearly, the myth that disabled people comprise an insignificant portion of the population could no longer be sustained.
An important movement which has developed within the broader struggle of disabled people is the independent living movement.
The Independent Living Movement was started by persons with extensive disabilities, because it is this group that is exposed most to the attitudes of protectionism, paternalism and pity that persons with disabilities commonly face.
Persons with extensive disabilities are people who need assistance by other persons for daily basic life supporting activities, which other people carry out by themselves. The definition includes both women and men, persons with mobility impairments, intellectual disabilities, persons who become disabled in childhood or late in life.
'User Rights' is a particularly appropriate theme for the PAIL project as it reflects a change in emphasis from 'the service' to 'the user'. The users, their needs and their rights form a more appropriate focus, than having the service provision viewed in isolation from those benefiting from such service provision.
The main assumption behind user rights is that consumers should, whenever possible, be able to exercise the same degree of control over their lives as any other member of the community. In fact, they should be encouraged to continue the exercising of rights and interests.
The rights include attaining a level of care that is:
The consumer has a right to know what he/she should be getting. Also, the consumer should be able to participate in decisions that affect him/her, including whether or not he/she receives a service.
1.2 Overall Government Strategy
As with so many other issues in South Africa, the undemocratic nature of apartheid did not favour the development of 'marginal concerns', ranging from the rights of the black majority to the protection of the environment.
The current circumstances of political transition and democracy in South Africa present a unique historical opportunity to impact upon national policies to the benefit of disabled people.
It is well known that thousands of people have died in political violence in South Africa in recent years. What is less recognised is that, according to reputable international estimates, for each person killed in such violence at least three are permanently and severely blinded, paralysed or otherwise disabled.
Disabled people from disadvantaged and poor sections of the population face inadequate rehabilitation and health services in hospitals, and are often discharged back to the same conditions of deprivation and discrimination which lead to their injuries in the first place, and there will be little or no follow-up or aftercare.
Although the new government of national unity has recognised the need to support programmes in the disability sector, no practical programmes and funding support has as yet been received from the government for personal care users and independent living projects.
1.3 Prior or Ongoing Assistance
The Reconstruction and Development Programme (RDP) of the Government of National Unity is an integrated socio-economic policy framework which seeks to mobilise all of the country's people and resources toward the final eradication of apartheid and the building of a democratic future. The RDP makes frequent reference to disability, an acknowledgement of the suffering and neglect of disabled people as a result of South Africa's apartheid past.
Disabled people in South Africa (notably led by Disabled People South Africa (DPSA) have succeeded in creating the potential for disabled people to enjoy more equal opportunity and development through its lobbying of the main players in the negotiations for a new South Africa.
As a result of this advocacy, the RDP identifies disabled people as one of four priority population groups together with women, the rural population and the youth. There is a clear need to enable disabled people in the country to develop the capacity to seize this opportunity. This will be achieved through the planning and implementation of an empowering programme that will enable disabled people (particularly those with severe disabilities) to make use of their full potential.
1.4 Socio-economic Context
South Africa is often described as a country with two worlds in one. The well developed urban infrastructure is a sharp contrast to the poor and marginalised rural areas and urban townships, where the majority of disabled people reside.
Average per capita income of people living in the non-independent homelands and on South African Development Trust land was approximately R45 a month. In 1990, 42% of South Africans lived off an income below the minimum level, set by Vatcom at R600 per month. By the year 2000, fourteen million people will have to be accommodated in the rural areas, but only 2.5 million of them will be able to generate an income from agriculture (Source: SAIRR)
The foregoing clearly demonstrate an unfavourable scenario which affect disabled people three times as much as able-bodied people in South Africa. With the state social security programme still based on previous racial laws, and the inadequacy of monthly disability grants (currently at about R350 per month), disabled people in South Africa are severely affected and live far below the poverty datum line.
1.5 Problem To Be Addressed: The Present Situation
Disabled people in South Africa, estimated at over 4.8 million, have been among the worst victims of apartheid policies and practices. Apartheid has been a direct cause of disability in terms of people injured in the apartheid struggle, as well as through the structural poverty imposed on the Black population of the country. These same circumstances have caused the lives of disabled people to be characterised by poverty, deprivation, isolation and gross violation of human rights.
Until the recent change of government, the vast majority of disabled people in South Africa found themselves doubly discriminated against, on the grounds of their disabilities and on their race as a result of apartheid policies and practices.
There are chronic housing shortages in black townships, purposely created by the previous government authorities as a means of discouraging urbanisation of blacks. These townships function even worse for disabled people because of the small size of houses and due to the factor of overcrowding.
Levels of education among black disabled people are low as a result of the notoriously inferior Bantu education system, and also due to the fact that many have had their formal education interrupted by medical treatment and other factors.
When a family lives in poverty, it does not devote its scarce resources to the education of those least likely to bring the family an income in the future.
Most disabled people are unemployed as a result of prejudice, inadequate training, and the inaccessibility of transport and buildings. Disabled people are thus generally excluded from such critical development inducing life experiences as decision making and normal social interaction. Many just sit at home alone while their peers go to school, work, fall in love and marry.
The net effect of all these factors is that the disabled community in South Africa is the most disadvantaged in respect of education, health, housing, employment, and social interaction. The level of self-esteem among disabled people is very low, thus contributing to the non-participation of disabled people in the decision making processes currently taking place in South Africa.
South Africa has one of the highest levels of social inequality in the world. The majority of people live in abject poverty while a significant minority enjoy high standards of living.
Projections for future economic growth are poor. Proposed economic restructuring is likely to increase marginalisation of large sectors of the population, leading to further urbanisation and drawing resources away from rural areas. The new government of national unity will be forced to use all available resources on basic provision of education, health, and welfare. The backlog in these sectors is estimated at R75 Billion.
There has been a declining growth rate with GDP per capita down by 3% in 1990. Acute structural problems persist and serious structural unemployment exist. The Development Bank of South Africa (DBSA) estimates that 41.5% of the work force has been without formal employment since 1989.
The current recession and limited future prospects emphasise the position of the poorest of the poor and particularly vulnerable groups such as the severely disabled people. The failure of the previous government to make any meaningful provision for social welfare means that the growing unemployed and homeless sector have no relief.
According to the World Bank, in 1988 59% of the South African population was urbanised and of these, many live in informal settlements estimated by the South African Institute of Race Relations as ranging from 3.5 to 7 million.
1.6 The Reason for External Assistance.
The current transitional phase going in South Africa presents unique opportunities for disabled people to participate in the decision making process, and to secure the commitment of the new government of national unity to policies that benefit disabled people. It is essential that disabled people should guide the process of establishing policy instruments and mechanisms aimed at benefiting disabled people in South Africa, particularly the severely disabled.
The PAIL Programme has both upstream and downstream benefits in terms of the positive policies around Independent Living that will flow out of the policy development process, and the participation of disabled people in self-help oriented socio-economic activities aimed at increasing independence, income and employment opportunities.
The project was planned in a participatory manner and will be implemented in a participatory manner involving personal care users. The availability of technical support services is crucial to the achievement of the project's objectives. Hence, it is planned that the programme will benefit from international experience and expertise from consultants and resource persons who will be identified from time to time.
The project will provide an opportunity for the transfer of knowledge, experiences and resources to South Africa to benefit disabled people.
2. Development Objective
The development objective of the PAIL Project is to increase (within a period of ten years) the number of rural and urban severely disabled persons living an independent life by at least 20% over 1995 population.
The achievement of the development objective will be objectively verified through an analysis of three-yearly evaluation and review reports to determine annual variations in the number of severely disabled people with access to personal assistance and other essential services and products as a result of the implementation of the programme.
3. Immediate Objective
By the end of the project period, a minimum of five hundred severely disabled people per year per operational region will have achieved greater independence than in 1995, through the phased implementation of comprehensive independent programmes in South Africa.
The achievement of the immediate objective will be objectively verified through an analysis of independent living documents and reports to determine whether or not the independent living programmes are fairly comprehensive and fully operational.
The immediate objective will also be verified by an analysis of success in the implementation of the initial phase of the programme planned for the Cape Province
The programme has both downstream and upstream benefits to rural and urban disabled people. The anticipated outputs of the programme are as follows:
4.1 A single independent living unit will have been established in the Cape Province by end of 1995, subject to the assumptions stated below. The achievement of this output will be verified by a study of minutes of meetings of the unit and staff reports to establish whether or not the proposed unit is established and operational.
4.2 A phased establishment of independent living units in nine provinces of South Africa will have been completed by the end of the fifth year of the programme. Regional and staff narrative reports will reflect the number of regional independent living units/programmes established and operationalised in the nine regions within the specified time frame.
The implementation of the PAIL Programme will initially be confined to the Western Cape Region with subsequent phases of the programme involving other regions of South Africa. With an area of 1,223,201 sq. km., South Africa covers a wide geographical area.
4.3 At least twelve peer support sessions per year per region will have been implemented to benefit severely disabled people for the duration of the project. An assessment of the number of peer support sessions (and the beneficiaries of these sessions) successfully implemented each year will be made by analysing annual narrative and peer support session reports.
4.4 Two independent living seminars will have been implemented by the end of each twelve month period for the duration of the project. Seminar and other reports will be analysed to determine the number of seminars implemented.
4.5 Two workshops of a self-help nature for a total of sixty severely disabled people will have been implemented by the end of each year. This will be objectively ascertained by an analysis of dated workshop reports.
4.6 By the end of the project, a single research exercise on the situation of persons with spinal cord injuries and persons with other severe disabilities will have been concluded. The achievement of this output will be objectively verified through an analysis of research reports to ascertain the success or otherwise, in the implementation of practical action-oriented research on the needs of severely disabled personal care users.
4.7 Two training sessions for forty facilitators will have been implemented by the end of the project period. The number of sessions and participants will be verified through an analysis of session reports.
4.8 By the end of the project a comprehensive planning and resource mobilisation strategy for independent living programmes to benefit severely disabled people will have been launched. This will be verified through an assessment of programme documents and funding proposals to determine progress in the launching of the resource mobilisation campaign.
4.9 A review exercise will have been implemented by the end of the third year of the project. The review report will be studied to determine whether or not the review will have been successfully completed.
A range of activities have been planned in order to achieve the outputs and immediate objective referred to above thus contributing to the achievement of the project's development objective. The range of activities is as follows:
5.1 Personnel and Extension of Services
An independent living unit will be established initially in the Western Cape Province, and subsequently (subject to availability of funding) in other regions of South Africa. A two-member staff team will be recruited and appointed to implement the project. The completion of the appointment process will be verified through an analysis of letters of appointment and job description.
The program team will be responsible for the day-to-day implementation of the project, including the organisation of seminars, workshops, training sessions and self-help initiatives of personal care users.
The project team will initiate and facilitate the further extension of the PAIL project to other regions of South Africa. The necessary planning and fundraising work will be implemented in each region in phases.
5.2 Regional Planning Sessions
Regional planning sessions with personal care users and independent living activists will be conducted in each region. Ideas for peer support, self-help initiatives and independent living centres will be assessed and put through the planning and fundraising process.
Eight planning sessions will be planned, and this will be verified by an analysis of session reports and other resultant documents.
5.3 Peer Support Sessions
Peer support sessions will be planned and implemented. Both formal and informal peer support counselling will be provided to severely disabled persons, personal care users, and independent living activists.
The successful implementation of a peer support schedule will be verified by analysis of peer support session reports. The sessions will serve the useful purpose of:
providing the participants with the actual experience of formal peer support;
teaching basic peer support skills;
demonstrating the practical benefits of peer support to participants; and,
training some members in peer support group facilitation.
5.4 Independent Living Seminars
Two independent living seminars per year will be implemented to benefit independent living activists, personal support users, and other severely disabled people.
The purpose of the seminars will be to discuss and make decisions relating to the establishment of independent living centres within close proximity to the users. Independent living centres are essential for the following reasons:
Follow-up activities will include the establishment of peer support groups within the community, providing input in the disability policy development process, planning and fundraising work for independent living centres.
The achievement of these activities will be verified through an analysis of seminars reports and terms of reference of task groups to determine success or otherwise in the planning and implementation of the proposed seminars and agreed follow up work.
5.5 Self-help Initiatives Workshop
At least two self-help oriented workshops will be planned and implemented to benefit personal care users, independent living activists and other severely disabled persons.
The purpose of the workshops will be to determine the unsatisfied needs of personal care users and independent living activists and to develop strategies of addressing these needs. Self-help initiatives workshops will be planned to address the following issues:
5.6. Practical Research and Follow-up Work - Policy Development Proposal
A practical action-oriented research exercise will be undertaken to determine the living conditions and work opportunities for severely disabled personal care users, particularly those with spinal cord injuries or disorders.
The research work will also be aimed at informing the development process aimed at lobbying for the provision of services to personal care users and independent living programmes in South Africa.
The achievement of this activity will be determined by analysing letters of appointment and terms of reference for the proposed research in order to determine the completion of the recruitment and appointment of a research consultant. The research report will be analysed with a view to determining its usefulness in the disability policy development process.
A follow-up policy development proposal on personal assistance programmes, independent living initiatives and the service delivery mechanics to severely disabled people, will be designed as a follow-up strategy to the research exercise. The policy development proposal will be submitted to the relevant national and regional government departments.
The completion of the policy and submission to government will be objectively verified through an analysis of the policy document itself and dated correspondence to and from government.
5.7 Training Sessions for Facilitators
The program team will plan and implement two training sessions to which severely disabled persons and personal assistance users will be invited.
The purpose of training is to:
create a group of committed and experienced peer support group facilitators;
increase peer support skills in the area of personal assistance;
increase the motivation and personal satisfaction of the peer group facilitators; and
provide PADI with a pool of experienced peer group facilitators.
The training will cover such areas as:
The training will be offered free of charge. Its format consists of a 5-day workshop with presentations and ample room for discussions. The major part of the workshop will be made up of exercises in group facilitation, role play and evaluation of each trainee's performance by the group. Up to 15 persons can be trained.
Suitable trainers (to be brought in from partner organisations outside South Africa) will be identified and given the task of providing training.
After the training, the trainees are expected to form a leadership group that takes on the responsibility for on-going peer support activities including selecting suitable facilitators, scheduling meetings, establishing evaluation procedures, and advertising the meetings. The group will offer peer support sessions, free of charge, to the membership and other persons with disabilities. PADI will assist persons with extensive disabilities with free transportation to the meetings.
The achievement of this activity will be measured by the completion on time of all planning and implementation of training sessions for personal assistance users and severely disabled persons.
5.8 Resource Mobilisation Strategy
PADI has identified a planning and fundraising consultant to undertake ongoing fundraising and project planning work with programme personnel, PADI members, and users of personal assistance. The achievement of this activity will be measured by the completion of contractual arrangements with the consultant and the effective launching of the resource mobilisation campaign as per evidence from the contract for professional services and list of fundraising proposals and letters of communication submitted to potential partners.
The program team, PADI leaders, and users of personal assistance will be facilitated by a consultant to review progress in the implementation of the PAIL project and other independent living initiatives.
The successful implementation of the review process will be verified by analysing the review report by the consultant.
For the successful implementation of the above activities the following inputs are essential:
6.1 One Project Director and one Assistant Coordinator will be recruited to work on a full time basis. The appointments will be verifiable by analysing letters of appointment.
6.2. One planning and resource consultant will be contracted to provide technical and fundraising back up support services.
6.3 External facilitators (some from Sweden) will be identified and appointed on a one-off basis to perform the training sessions for peer support counsellors.
6.4 It is anticipated that at least a three-year budget will be approved in order to provide funding for personnel, consultants, and other programme expenses. This will be verified by studying funding agreements for this programme.
The initial phase of the PAIL project will initially be implemented in the Western Cape Province of South Africa. It is anticipated that other regional projects will be initiated as funding resources are secured, hence the importance and relevance of fundraising and planning services.
The range of services that will be provided will include the following:
self-help initiatives for personal care users
practical, action-oriented research and follow-up work to inform the policy development process
training sessions for facilitators
planning and resource mobilisation work, and
review and on-going monitoring.
8. Assumptions and Risks
8.1 The achievement of the development objective will depend on the assumption that the political situation in the country will continue to be stable. The achievement of both the development and immediate objectives will depend on government continuing to be responsive to policy reform proposals on disability issues.
8.2 The success of fundraising and resource mobilisation strategies will depend on the positive response from local and international funding partners, and on whether the international and local fundraising climate will continue to be favourable to initiatives from South Africa.
8.3 The implementation of the activities and procurement of the inputs for this project will depend on the approval of anticipated funding from PADI's partners. It is also assumed that at least three-year funding will be provided, and released on time in sufficient amounts, to enable the implementation of the program to be initiated.
9. Organisation and Administration
PADI will take the implementation role, and will plan outreach activities aimed at increasing the number of personal assistance users and independent living activities, initially in the Western Cape and subsequently in other regions.
PADI proposes a close working relation between itself and funding partners for the PAIL Programme based on close cooperation and partnership.
The PAIL implementation team will perform the following key administrative duties:
10. Organisation and Financial Sustainability
By engaging the services of a fundraising and technical services consultant, PADI has placed itself in a good position to have access to more information and support services in terms of long term planning of its programmes and resource mobilisation strategies. The consultant, himself a disabled person, has a database of potential sources of support, and strategies for sustaining project activities beyond the funding period. He has many years of experience of working on disability programmes in Southern Africa.
By increasing the resource base for its work, PADI will be able to obtain the necessary assistance to continue to implement the programme.
12. Indicators and Means of Verification
All indicators and means of verification are mentioned in each section above and listed in the project matrix provided.
13. Project Review, Reporting and Evaluation
A project review exercise will be undertaken after the end of the first three-year cycle. The review will analyse implementation strategies, experiences, opportunities and constraints. Recommendations for consideration during the next project cycle will be made.
The review will be jointly planned and implemented by representatives and/or consultants of PADI and the funding partners, if considered necessary.
Part of the monitoring process will include the preparation and submission by PADI to its funding partners of at least two narrative and financial reports per year, and a single final and evaluative report by end of the third year.
The evaluation of the programme will be participatory in nature and will be completed by the end of the first five years of the programme. Participants in the evaluation process will include members of PADI, personal care users, representatives of funding partners (if considered necessary) and the PADI Resources Consultant.
The purpose of the evaluation will be to determine the effectiveness of program strategies, identifying opportunities and constraints. An evaluation report will be prepared and circulated as widely as possible. This stage of the evaluation will cover the following elements (among others)
a. whether significant progress has been/is being made towards accomplishing set objectives;
b. comment on the method of implementation and exploring alternatives;
c. opportunities and difficulties encountered during the implementation process; and
d. any conclusions and recommendations.
Evaluation results will be widely circulated within the structures of PADI and the international independent living movement. The results will be used to plan the next phase of the programme and to secure additional resources for the programme.
14. Budget and Financial Pattern
14.1 An activity-based financial planning method was used in the designing of the budget. Historical performance and knowledge of current cost trends were used in determining the figures for each budget line in the budget. Main budget categories include the following (expressed as percentages of three-year totals of the submitted budget):
14.2 An extract of the master budget has been prepared. PADI proposes that an initial funding partnership be formulated around the budget extract either as a whole or on a contribution basis. The master budget of the PAIL Programme will be made available on request. However, the annual totals reflected in the master budget are as follows:
Year 1 - 825 870
Year 2 - 908, 450
Year 3 - 991 040
All figures are rounded off to the nearest ten and current exchange rates at the time of transaction will be used in converting the budget figures to other currencies. Once approved, the budget will be maintained in foreign currency to offset the effects of inflation and depreciation of the Rand currency.
15. Accounting and Auditing
15.1 PADI maintains a complete set of computerised accounts. Up-to-date financial reports will be prepared twice per year and submitted to funding partners. Financial decisions will be made after the approval of two authorised signatories to PADI's account.
15.2 A receipt will be issued for all income received from funding partners. PADI proposes a once-per-year disbursement plan whereby the whole budget for a given twelve-month period will be disbursed.
15.3 The books of accounts of PADI will be subject to an annual audit by a firm of independent auditors after 31 March each year. Should audited reports be required during the course of the financial year, the previous available audited report will be submitted. A consolidated audited account, reflecting all the financial details and income from all funding partners, will be produced and circulated to funding partners. In order to cut down on auditing costs, it will not be feasible to produce separate audited accounts for each funding partner unless specific provision is made as an additional element to the submitted budget.
16. Project Implementation Plan (PIP)
The project implementation plan is enclosed.
The right to development has now been added to the United Nations Universal Declaration of Human Rights as a fundamental right that had not been identified in the world movement of rights. It defines that every individual, including a person with a mental, physical, or medical disability, has the right to develop to full individual potential.
The PAIL programme provides an opportunity for severely disabled personal care users to take their rightful place in society, and away from the periphery to the centre of development activity, and to attain increased levels of independence. The programme fosters integration, interdependency, and equal participation as opposed to isolation.
Support to initiatives such as the PAIL programme will enable personal care users to actively participate in self-help activities and in the economic life and development of South Africa.
This programme document and funding proposal is based on the principle of integrating severely disabled people into the development process through (among other things) independent living programmes, policy development, and employment creation. The programme seeks to develop a strong institutional capacity for PADI in order to generate the necessary capacity to implement and sustain the programme.
For more information on this funding proposal, please do not hesitate to get in touch with Miss Fadilla Lagadien, Telephone 27-21 6960386 or 27-21 6973944, Rondebosch, Cape Town, RSA; or
Andrew K. Dube, Tel/Fax: 27-431-411050).