Coat of Arms image SA Govt Info image
row image www.gov.za what's new links faq's sitemap feedback row image
speeches & statements documents our leaders about government about sa events search
 
Homepage Homepage

Documents

>

Documents for public comment

>

Constitution

>

Acts

>

Bills

>

Notices

>

White Papers

>

Green Papers

>

Tenders

>

Statistical documents

>

Parliamentary documents

>

Annual reports

>

Provincial documents

>

Other documents

>

International reports

>

Forms

>

All documents by subject

>

Search on documents

Integrated National Disability Strategy White Paper

Office of the Deputy President
November 1997

Foreword

Among the yardsticks by which to measure a society's respect for human rights, to evaluate the level of its maturity and its generosity of spirit, its by looking at the status that it accords to those members of society who are most vunerable, disabled people, the senior citizens and its children.

The concept ot a caring society is strengthened and deepened when we recognise that disabled people enjoy the same rights as we do and that we have a responsibility towards the promotion of their quality of life.

We must stop seeing, disabled people as objects of pity but as capable individuals who are contributing immensely to the development of society.

We must play an active role in working with them to find joy and happiness and the fulfilment of their aspirations.

Through the establishment of the Office on the Status of Disabled Persons, in my office, our government wishes to express its unswerving commitment to the upliftment and improvement of the conditions of those members of our society who are disabled.

Research estimates that between 5 and 12% of South Africans are moderately to severely disabled. Despite this large percentage of disabled people, few services and opportunities exist for people with disabilities to participate equally in society.

Throughout the world disabled people are organising themselves to engage society on the question of their fundamental rights. The United Nations has issued two documents dealing with the concerns of people with disabilities. These are the United Nations Standard Rules for the Equalisation of Opportunities for Persons with Disabilities and the World Program of Action Concerning Disabled Persons.

Both documents call for extensive changes in the environment to accommodate the diverse needs of disabled persons in society. The emphasis is on a fundamental shift in how we view disabled people, away from the individual medical perspective, to the human rights and development of disabled people.

As a government we endorse these principles.

This White Paper represents the government's thinking about what it. can contribute to the development of disabled people and to the promotion and protection of their rights. We believe in a partnership with disabled people. Therefore the furtherance of our joint objectives can only be met by the involvement of people with disabilities themselves.

This document is the product of an intensive and thorough process of consultation with all the relevant organisations of and for disabled people.

We believe that this White Paper reflects the aspirations of many disabled people in our country. But this is not the end of the process.

The Integrated National Disability Strategy will kick-start a further process involving disabled people in the development of specific policies and legislation aimed at giving effect to the recommendations contained in the White Paper.

Finally, may we take this opportunity to thank the many individuals and organisations who have contributed to the development of this White Paper.

Your contributions will prove to be invaluable to the process of the creation of a truly people centred society.

T M MBEKI

[ Top ]


Acknowledgements

The Deputy President wishes to acknowledge the contribution of all individuals and organisations who participated in the production of the White Paper. In particular he would like to acknowledge the following:

Core Group:

Charlotte McClain, Community Law Centre, University of the Western Cape
Colleen Howell, Disabled People South Africa
Fadila Lagadien, National Co-ordinating Committee on Disability
Lidia Pretorius, Rural Disability Consultant
Maria Rantho MP, Chairperson, Disabled People South Atrica
Philip Thompson, Chairperson, South African Federal Council on Disability.

Publication

Sue de Villiers, for her patient editing of the Draft White Paper. and numerous other tasks.
Benny Gool for providing the cover picture.
Rustica Press for the publication of the White Paper.

International support

The Swedish International Development Authority (SIDA) provided financial support for the entire process. Johan Brisman and Lotta Sylwander gave immeasurable support at critical moments in the development of the White Paper.

Organisations

The critical and valued comment received from the member organisations of the South African Federal Council on Disability, especially, Disabled People South Africa, National Council for Persons with Disabilities, Deaf Federation of South Africa, National Epilepsy League, Quadriplegic Association of South Africa, and the South African National Council for the Blind.

Office of the Deputy President

Dr Essop Pahad, Deputy Minister in the Office of the Deputy President, provided guidance throughout the process of compiling the White Paper.

Reverend Frank Chikane, Director-General, and Lucille Meyer, Chief Director, Office of the Deputy President, provided technical support throughout the entire process of producing the White Paper.

Shuaib Chalklen, Director, Office on the Status of Disabled Persons, co-ordinated the overall process of producing the White Paper.

A special word of thanks to all the individuals who made the valuable submissions at the national and provincial public hearings. Your efforts are sincerely appreciated.

[ Top ]


Table of Contents

FOREWORD
ACKNOWLEDGEMENT
EXECUTIVE SUMMARY
CHAPTER ONE: SITUATION ANALYSIS
CHAPTER TWO: NATIONAL INTERNATIONAL CONTEXT
CHAPTER THREE: POLICY GUIDELINES
CHAPTER FOUR: LEGISLATION MONITORING
CHAPTER FIVE: PROGRESS TO DATE
CHAPTER SIX: RECCOMMENDATIONS
Appeddix A: Monitoring Structures
Appendix B: Glossary of Terms
Appendix C: Glossary of Acronyms


Integrated National Disability Strategy

Executive Summary

There is a serious lack of reliable information about the nature and prevalence of disability in South Africa. A 1995 estimate puts disability prevalence in our society at 5% of the population.

People with disabilities are excluded from the mainstream of society and experience difficulty in accessing fundamental rights. There is, furthermore, a strong relationship between disability and poverty. Poverty makes people more vulnerable to disability and disability reinforces and deepens poverty. Particularly vulnerable are the traditionally disadvantaged groups in South Africa including, additionally, people with severe mental disabilities, people disabled by violence and war and people with AIDS.

Disability tends to be couched within a medical and welfare framework, identifying people with disabilities as ill, different from their non-disabled peers, and in need of care. Because the emphasis is on the medical needs of people with disabilities, there is a corresponding neglect of their wider social needs. This has resulted in severe isolation for people with disabilities and their families.

Over the past decade, disabled people's organisations all over the world have worked to reposition disability as a human rights issue. The result is a social model for disability based on the premise that if society cannot cater for people with disabilities, it is society that must change. This model requires substantial changes to the physical environment. The goal must be the right of people with disabilities to play a full, participatory role in society.

This changing ethos has taken place within an international context which finally gave rise, in 1993, to the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities. A key principle of disabled people's movements throughout the world, and indeed of the social model itself, is the involvement of people with disabilities in the process of transformation.

The vision of the Integrated National Disability Strategy proposed by the White Paper is a society for all. This means that there must be an integration of disability issues in all government development strategies, planning and programmes. There must be an integrated and co-ordinated management system for planning, implementation and monitoring at all spheres of government. And, to complement the process, there must be capacity building and wide public education.

Key policy areas have been identified. These include prevention, health care, rehabilitation, public education, barrier free access, transport, communications, data collection and research, education, employment, human resource development, social welfare and community development, social security, housing and sport and recreation. The White Paper has developed policy objectives, strategies and mechanisms for each of these areas. Where necessary, different components have been identified. Recommendations highlight specific areas for action.

The right of people with disabilities are protected by the Constitution. Government departments and state bodies have a responsibility to ensure that, in each line function, concrete steps are taken to ensure that people with disabilities are able to access the same fundamental rights and responsibilities as any other South African.

To co-ordinate this activity, the Office on the Status of Disabled Persons has been established in the Office of the Deputy President. The Office on the Status of Disabled Persons will work together with, and parallel to, the various state bodies and departments in order to further the development of a disability friendly environment. It will maintain close working links with the NGO sector.

The legislative framework is crucial. There is a need to examine the need for new legislation. Existing legislation must be scrutinised and amended where necessary. Ultimately, legislation should comply with and give substance to Constitutional requirements.

Finally, in order to ensure that legislation is effective and policy implemented, research and monitoring are essential. Transformation must involve practical change at every level of our society.

[ Top ]


Chapter One

Situation Analysis

Prevalence of Disability in South Africa

There is a serious lack of reliable information on the nature and prevalence of disability in South Africa. This is because, in the past, disability issues were viewed chiefly within a health and welfare framework. This led naturally to a failure to integrate disability into mainstream government statistical processes.

Statistics are unreliable for the following reasons:

  1. there are different definitions of disability;
  2. different survey technologies are used to collect information;
  3. there are negative traditional attitudes towards people with disabilities;
  4. there is a poor service infrastructure for people with disabilities in underdeveloped areas, and violence levels (in particular areas at particular times) have impeded the collection of data, affecting the overall picture.

Some useful statistics are, however, available from the United Nations Development Programme (UNDP) and the Central Statistical Service (CSS)(1). These provide some guidance to estimated disability prevalence in South Africa.(2)

The UNDP estimates that, in 1990, 5,2% of the world population was experiencing moderate to severe disability. This ranged from 7.7% in so-called developed countries to 4,5% in less developed areas.

In its 1995 October survey, the CSS reported a disability prevalence of approximately 5% in South Africa.

It is critical to note that disability does not only affect the disabled individual but also the family and the immediate community.

Another factor that must be taken into account is the tendency of society to view people with disabilities as a single group. Thus, people in wheelchairs have become the popular representatation of people with disabilities. This ignores the diversity of disability and the variety of needs experienced by people with different types of disability.(3)


Disability and Exclusion

Introduction

The majority of people with disabilities in South Africa have been excluded from the mainstream of society and have thus been prevented from accessing fundamental social, political and economic rights

The exclusion experienced by people with disabilities and their families is the result of a range of factors, for example:

  • the political and economic inequalities of the apartheid system;
  • social attitudes which have perpetuated stereotypes of disabled people as dependent and in need of care; and
  • a discriminatory and weak legislative framework which has sanctioned and reinforced exclusionary barriers.

The key forms of exclusion responsible for the cumulative disadvantage of people with disabilities are poverty, unemployment and social isolation.

[ Top ]

 

Poverty and Exclusion

Poor people face a greater risk of impairment or disability. In addition, the birth of a disabled child, or the occurrence of disability in a family, often places heavy demands on family morale, thrusting it deeper into poverty.

This means not only that there is a higher proportion of disabled people amongst the very poor, but also that there is an increase in families living at the poverty level as a result of disability. This phenomenon seriously hinders the development process.

The International Labour Organisation (ILO) and the UN Development Programme (UNDP) state that a key indicator of poverty is the degree to which people are excluded from accessing basic goods and services. Poor people do not have sufficient income to purchase goods. They also live in underdeveloped areas where there is a lack of sanitation, water, electricity, health services, job opportunities and educational and recreational facilities.

The CSS 1995 October Household Survey confirms this, pointing out that large numbers of people with disabilities live in areas where the infrastructure for the provision of basic services is at its weakest. Hence, a relatively low percentage of disabled people have access to piped water, electricity and inside toilet facilities.

Unemployment and Exclusion

People who receive social security benefits in South Africa tend to be totally dependent on them for their survival. The majority of people with disabilities, however, receive no grant at all.(4)

At the same time, an estimated 99% of disabled people are excluded from employment on the open labour market.

The extremely high levels of unemployment amongst people with disabilities can be attributed to a number of factors:

  1. low skills levels due to inadequate education;
  2. discriminatory attitudes and practices by employers;
  3. past discriminatory and ineffective labour legislation;
  4. lack of enabling mechanisms to promote employment opportunities;
  5. inaccessible public transport;
  6. inaccessible and unsupportive work environments;
  7. inadequate and inaccessible provision for vocational rehabilitation and training;
  8. generally high levels of unemployment;
  9. the fact that menial labour is often the only option for poorly skilled job-seekers;
  10. inadequate access to information, and
  11. ignorance in society.

The high level of functional illiteracy amongst disabled adults is a direct result of the lack of educational opportunities for children with disabilities, especially in rural areas. The result is low skills levels and a correspondingly limited access to employment opportunities.

As a result, those people with disabilities who do have jobs often find themselves working in sheltered/protective workshops run either by the Departments of Welfare and Labour, by private welfare organisations or by disabled people themselves. Although the nature and scope of these workshops and self help projects vary considerably, they do not provide people with disabilities and their families with sustainable incomes or opportunities for competitive economic activity.

Exclusion Through Legislation

Legislation has contributed to the social exclusion of people with disabilities. First, legislation fails to protect the rights of people with disabilities and, second, through legislation, barriers are created to prevent people with disabilities from accessing equal opportunities.

Although there has, since 1994, been some attempt to identify and eliminate discriminatory legislation from our statute books, many aspects of past discriminatory legislation remain. In addition, some new laws and amendments contain sections which directly or indirectly lead to discrimination against people with disabilities. As a result, large sections of the legislative framework in South Africa still fail to meet international human rights standards and principles with regard to the rights of people with disabilities.

One of the main reasons why legislative discrimination continues to take place is that discrimination is not always obvious merely from reading a statute. Problems often arise when the law or statute is applied.

[ Top ]

These include:

  • the way regulations governing specific acts are drawn up;
  • the way acts and/or their regulations are administered;
  • inappropriate and/or ignorant interpretation of the law, and
  • poor monitoring of the law.

Although the rights of people with disabilities are enshrined in the Constitution, there is, as yet, no disability specific legislation.


Sectors Experiencing High Levels of Exclusion

Introduction

It is important to recognise that there are sectors within the disabled community which have experienced greater discrimination than others. These sectors have experienced, and still experience, comparatively higher levels of exclusion from the social, economic and political environment.

This demands special targeting in order to redress past and present inequalities. Special attention must also be given to understanding and addressing the conditions which have led to the extreme vulnerability of these sectors. The following are the most vulnerable groups:

Women with Disabilities, particularly Black Disabled Women

South African society is still very patriarchal and discriminatory. Although attitudes are changing, women are still typically viewed as second class citizens, subservient to men and in need of protection. Their social role is, by and large, defined through motherhood and homemaking.

Disabled women experience the same oppression as non-disabled women, but often without even the status that women traditionally receive as mothers or wives. In addition, disabled women experience more discrimination than other women from being unable to live up to the demanding ideals for womanhood imposed by society.

Thus, while it is commonly said that disabled women are women first, then disabled, their circumstances need to be socially contextualised. The very focus of the women's movement - the advancement of an image of women as powerful and competent - has tended to marginalise disabled women. In this context, women with disabilities seem to reinforce traditional stereotypes of women as dependent, passive and needy.

The consequent isolation of disabled women means:

  • disabled women are more likely to be poor or destitute;
  • disabled women are more likely to be malnourished;
  • disabled women are more likely to be illiterate, and
  • disabled women have a lesser chance of founding a family.

In addition, women who bear disabled children sometimes face rejection and even scorn. Such women, especially in poverty-stricken areas, also often find themselves excluded from social and economic activities due to the additional attention required by, and lack of facilities for, their disabled children.(5)

An alarmingly high proportion of care-givers of disabled children are grandmothers, further exacerbating the disadvantaged circumstances of elderly women in South Africa.

Thus the stigma of disability, its myths and fears are likely to increase women's social isolation in society.

Children with Disabilities, particularly Black Disabled Children

South African society still regards children with disabilities as incapable, ill and a burden on society. In other words, they represent a 'problem' to be dealt with separately from other children's issues.

More than 80% of black children with disabilities live in extreme poverty in inhospitable environments. They have very poor access to appropriate health care facilities and early childhood development opportunities.

When born into families of poor socioeconomic backgrounds, such children frequently grow up believing that their disabilities are an economic and social curse and burden on their families. As a result, they often perceive themselves to be worthless.

The fact that children with disabilities are unable to defend themselves, are often alone at home and are undervalued by those around them also makes them particularly vulnerable to physical, sexual and emotional abuse.

[ Top ]

Such children are also less likely than their siblings to attend school, to go on outings, to experience situations where they have to solve problems or to contribute to household chores. As a result, they grow to be disempowered adults, unable to take decisions, solve problems or take the initiative. This, in its turn, contributes to high unemployment figures amongst adults with disabilities.

Children with disabilities fear and experience exclusion from a very young age. Separation from family, friends and peers is common. Non-disabled children, in their turn, learn that the exclusion of children with disabilities is the norm and therefore socially acceptable. These early experiences reinforce acceptance of segregation in later life.

Although the parents of children with disabilities have a special and specific role to play in the development of their children, mothers (especially) of children with disabilities often face ostracism from their partners, their families and their communities. This exclusion badly affects other non-disabled siblings, the survival of the family as a unit and the meaningful development of the disabled child.

This situation is frequently exacerbated by professionals who take over decision making from the parent(s), insisting that they know what is best for the child. As a result, the mother may lose self-confidence in her abilities not only as a mother, but also as a competent human being.

People with Severe Intellectual or Mental Disabilities

It is commonly considered that the specific needs of people with severe mental/ intellectual disabilities fall outside the ambit of development. Such people are likely to be regarded as ill and in need of constant care. They are not, therefore, provided with opportunities to participate in society to the best of their abilities.

People with severe intellectual or mental disabilities are particularly vulnerable during a period of transition from institutionalisation towards community-based services.

A number of investigations in recent years have unearthed gross human rights violations in institutions for people with mental and/or intellectual disabilities. Yet experiences in the United States, United Kingdom and Europe have shown that a move away from institutionalisation often results in people with severe intellectual or mental disabilities becoming homeless and living on the streets, with little or no community support.

People with intellectual disabilities or mental illnesses are also particularly vulnerable when confronted with the justice system. Their testimony is often not taken seriously, they are not regarded as reliable witnesses and they seldom have access to advocates through whom they can speak.

People with severe intellectual disabilities living in rural areas often have a low life expectancy, due to lack of care, support and access even to the most basic services. Families can seldom meet the additional financial burden of regular visits to hospitals, additional expenses for equipment and assistive devices, and other necessaries.

Elderly People with Disabilities

The prevalence of disability increases drastically with the onset of old age. It follows that, as the life expectancy of South Africa's population increases, so too will the prevalence of disability in our society.

Poor access to home-based health and social services, especially in rural communities, means that elderly people with disabilities often live in the back-rooms of their children's homes.

Inaccessible public transport and barriers in the built environment mean that services aimed at the elderly seldom reach those with disabilities. This further contributes to the isolation and depression experienced by this group.

People with Disabilities Living in Remote Rural Areas

One of the many features of apartheid was a severe under funding of social and economic services in the former Bantustans and 'independent' states. This had a particularly severe impact on people with disabilities who found themselves in an inhospitable environment, facing poor living conditions and unable to access the help they needed.

A lack of timeous and appropriate medical care has contributed significantly to an increase in preventable secondary and tertiary disabilities.

Although a percentage of people with disabilities receive social security benefits, these benefits are often used to pay neighbours and family members to perform tasks.(6)

In addition, people with disabilities in rural areas seldom have any prospect of engaging in the informal sector, due to poverty, inaccessible public transport systems and social rejection.

[ Top ]

Youth with Disabilities

Youth with disabilities are less likely to access youth development programmes than their peers for the same reasons as other groups with disabilities. As with other groups, it is also important to note that there are specific subgroups that experience particular difficulties. These include:

  • homeless youth with disabilities (e.g. street children);
  • youth with disabilities who have clashed with the justice system (e.g. those in schools of industry or reform schools), and
  • the so-called "out-of-school out-of-work" youth with disabilities who have had little or no access to formal education.

People with Disabilities who have been Displaced by Violence and War

South Africa is slowly emerging from a very violent past. The violence attendant on the implementation of apartheid policies and during the pre-1994 election period contributed not only to disability prevalence, but also to the displacement of large numbers of people with disabilities. In addition, the previous government's policies of destabilisation in neighbouring states resulted in large numbers of disabled refugees entering South Africa.

People with disabilities who have been displaced by violence and war are particularly vulnerable and may suffer additional hardships.(7)

People with Acquired Immune Deficiency Syndrome (AIDS)

People who are HIV positive suffer from social discrimination similar to that experienced by people with disabilities. This does not, however, imply that they are necessarily disabled. For the purpose of the Integrated National Disability Strategy therefore, they are not included in the definition of disability, except where symptoms, such as prolonged fatigue, interfere with their normal functioning.

People who have acquired disabilities due to the progression of the illness to full-blown AIDS are a particularly vulnerable group. Often they do not survive the time-consuming processes of applying for social security benefits, assistive devices and other necessities. Furthermore, the very stress brought on by efforts to access the assistance they need often hastens the progression of the illness.

People with Multi-Disabilities

People with a number of disabilities experience greater problems still. Society is completely unprepared for the integration of this group of people, and their families cannot normally afford to care adequately for them. People with multi-disabilities need special care, a routine stable environment and a wide range of specialised services.
 

[ Top ]

Causes of Disability

Many factors are responsible for the rising numbers of people with disabilities and their consequent isolation from the mainstream of society.

Violence and War

Disabilities are caused by violence, especially against women and children; injuries as a result of landmines, and psychological trauma.

Poverty

Disabilities are caused or exacerbated by overcrowded and unhealthy living conditions. Disability feeds on poverty, and poverty on disability.

Lack of Information

People do not have accurate information about disability, its causes, its prevention and its treatment. This is because of a high illiteracy rate and poor knowledge about basic social, health and education services.

Failure of Medical Services

The occurrence of disability is increased by the inadequacy of primary health care and genetic counselling services; weak organisational links between social services; the faulty treatment of the injured when accidents occur, and the incorrect use of medication.

Unhealthy Lifestyles

Disability is caused by the misuse and/or abuse of medication as well as the abuse of drugs and other substances. It is also caused by deficiencies in essential foods and vitamins. Disability may also be caused by stress and other psycho-social problems in a changing society.

Environmental Factors

Disabilities are caused by epidemics, accidents and natural disasters; pollution of the physical environment, and poisoning by toxic waste and other hazardous substances

Accidents

Disabilities are caused by industrial, agricultural and transport related accidents and sports injuries.

Social Environment

The fact that people with disabilities are marginalised and discriminated against creates an environment in which prevention and treatment are difficult.
 

The Medical Model

Introduction

Disability has historically been regarded predominantly as a health and welfare issue and state intervention has, therefore, been channelled through welfare institutions. The responsibility for 'caring' for disabled people has thus generally fallen on civil society. There has been little or no commitment to addressing disability in other areas of government responsibility.

The Medical Model of Disability means that organisations for people with disabilities are usually controlled by non-disabled people who provide services to people with disabilities.

The vast majority of organisations for disabled people were founded by people concerned with creating a more 'caring' environment for different groups of disabled people.

Their aim was usually to provide treatment, or to create alternatives to begging or 'hiding away'. The philosophy was that disabled people were not to be hated or feared, but rather to be pitied or helped as part of the 'deserving poor'.

People with disabilities very seldom had any say in the aims, objectives and management of these organisations. The emphasis was on dependence and the focus on the nature of impairment. This meant that all interventions were based on assessment, diagnosis and labelling, with therapy programmes developed separately and through alternative services. Generally, ordinary needs were not taken into account.

The social attitudes which resulted from the perception of disability as a health and welfare issue have invaded all areas of society. The result is that disabled people and their families have been isolated from their communities and mainstream activities. Dependency on state assistance has disempowered people with disabilities and has seriously reduced their capacity and confidence to interact on an equal level with other people in society.

[ Top ]

Thus the dependency created by the medical model disempowers disabled people and isolates them from the mainstream of society, preventing them from accessing fundamental social, political and economic rights.

Social exclusion manifests itself in:

The Family

Children as young as three years old are sent off to board at special schools(8);

The Built Environment

Barriers in the built environment prevent people with disabilities from participating in society.(9)

Mainstream Services

Ordinary services are designed and planned on the assumption that they will not be used by disabled people.(10)

Social Relationships

People with disabilities tend to spend much more time on their own than their non-disabled peers due to the barriers in society.

Communications

Information systems(11) are often inaccessible to people with disabilities. Sign Language is seldom used.

The Labour Market and Employment Opportunities

A 1985 HSRC/NTB investigation showed that 72,6% of people with disabilities were then economically inactive. Another study estimated that some 0,26% of people with disabilities were employed in the open labour market.

The Social Model

People with disabilities in South Africa came together in the early 'eighties to mobilise and organise themselves. Their aim was to build a strong civil movement of organisations controlled by disabled people themselves. Central to the disability rights movement is the assertion of disability as a human rights and development issue.

Disability as a Human Rights and Development Issue

An understanding of disability as a human rights and development issue leads to a recognition and acknowledgement that people with disabilities are equal citizens and should therefore enjoy equal rights and responsibilities.

This implies that the needs of every individual are of equal importance, and that needs must be made the basis for planning. It further implies that resources must be employed in such a way as to ensure that every individual has equal opportunities for participation in society.

In addition to rights, people with disabilities should have equal obligations within society and should be given the support necessary to enable them to exercise their responsibilities. This means that society must raise its expectations of people with disabilities.

A human rights and development approach to disability focuses on the removal of barriers to equal participation and the elimination of discrimination based on disability.

The Social Model of Disability

The social model of disability suggests that the collective disadvantage of disabled people is due to a complex form of institutional discrimination. This discrimination is fundamental to the way society thinks and operates.

The social model is based on the belief that the circumstances of people with disabilities and the discrimination they face are socially created phenomena and have little to do with the impairments of disabled people. The disability rights movement believes, therefore, that the 'cure' to the 'problem' of disability lies in restructuring society.

The social model of disability implies a paradigm shift in how we construct disability. Thus:

  • It is the stairs leading into a building that disable the wheelchair user rather than the wheelchair.
  • It is defects in the design of everyday equipment that cause difficulties, not the abilities of people using it.
  • It is society's lack of skill in using and accepting alternative ways to communicate that excludes people with communication disabilities.
  • It is the inability of the ordinary schools to deal with diversity in the classroom that forces children with disabilities into special schools.(12)

The social model therefore emphasises two things: the shortcomings of society in respect of disability, and the abilities and capabilities of people with disabilities themselves.

This results in an approach that requires that resources be made available to transform so-called 'ordinary' amenities and services to cater for a more diverse environment.

The Social Model, therefore, implies that the reconstruction and development of our society involves a recognition of and intention to address the developmental needs of disabled people within a framework of inclusive development. Nation building, where all citizens participate in a single economy, can only take place if people with disabilities are included in the process.
 

[ Top ]

Existing Disability Structures

Introduction

The paradigm shift (from the medical to the social model) has come about largely through the development of strong organisations of disabled people (DPOs). Central to the concept of the social model of disability is the principle of self representation by people with disabilities through DPOs.

One of the most important initiatives undertaken by the DPOs over the past few years has been the development of a number of charters which express the demands and rights of people with disabilities in South Africa.

Disabled people's organisations

Disabled People International (DPI) is recognised by the United Nations as the international assembly of disabled people. DPI recognises Disabled People South Africa (DPSA) as the national assembly of disabled people in South Africa. DPSA is a national organisation of smaller community-based disabled people's organisations.

Over the years, a number of parent organisations have also been founded. The Disabled Children Action Group (DICAG) has the largest membership, with affiliated community-based parent organisations throughout the country.

A number of national disability-specific DPOs, with international links, has also emerged over the years. These include:

  • The Deaf Federation of South Africa (DEAFSA)
  • The South African Blind Worker Organisation of South Africa (SABWO)
  • The National Organisation of the Blind in South Africa (NOBSA)
  • The South African Mental Health Federation
  • The Quadriplegic Association of South Africa (QUASA)
  • The Down Syndrome Forum of South Africa
  • The South African Epilepsy League

It is also important that people with intellectual or severe mental disabilities are able to speak for themselves through the use of advocates. The South African Federation for Mental Health has embarked on an advocacy programme to develop the concept of self representation by people with severe mental and/or intellectual disabilities.

The disabled people and parent organisations concentrate on advocacy and development work aimed at empowering people with disabilities. Very few of them receive any government support.

South African Federal Council on Disability

The South African Federal Council on Disability (SAFCD) is the national umbrella body for all national disability NGOs. It is the national forum where all national welfare organisations, as well as national organisations of disabled people and parents, come together to negotiate and develop common visions for the equalisation of opportunities for people with disabilities. The national welfare councils concentrate on service delivery(13) and are part-subsidised by government.

The following service/welfare organisations are affiliated to the SAFCD:

  • The Deaf Federation of South Africa (DEAFSA)
  • The South African National Council for the Blind (SANCB)
  • The National Council for the Physically Disabled (NCPD)
  • The South African National Epilepsy League (SANEL)
  • The South African Federation for Mental Health (SAFMH)
  • The South African Foundation of Cheshire Homes
  • Occupational Therapy Association of South Africa (OTASA)
  • The Cancer Association of South Africa (CANSA)
  • South African Council for the Aged

Disabled and parent organisations that have affiliated include:

  • Disabled People South Africa (DPSA)
  • Disabled Children Action Group (DICAG)
  • Down Syndrome Forum of South Africa
  • The National Council of Quadriplegic Associations in South Africa (QUASA)

The SAFCD is the recognised structure interacting with Government on disability issues. Government and the SAFCD are currently investigating the feasibility of transforming the SAFCD into a statutory body.

The paradigm shift away from the medical towards the social model implies a change in the way financial support is provided by government. This means that the development work engaged in by DPOs must be carefully evaluated against work done by the currently funded service organisations.

National Coordinating Committee on Disability

The National Year of the Disabled in 1986 saw the establishment of the Inter-Departmental Committee on Disability (ICCD). Its function was to implement the recommendations of the 1986 Report on disability. This structure was, however, disbanded in 1992 after the national disability rights movement pointed out that not a single recommendation had been acted upon.

The National Coordinating Committee on Disability (NCCD) was eventually established in 1993 to serve as a coordinating and advisory body to government on disability matters during the transitional period. Membership falls within three main categories, namely: key national government departments; national disability service/welfare organisations, and national disabled people organisations.

Four permanent working commissions (on prevention, rehabilitation, equal opportunities and public awareness) and a committee on legislation spearheaded policy proposals in key areas during the transitional period. The South African Disability Institute (SADI) was founded to lend a facilitating, coordinating and supporting role.

The NCCD is currently being restructured. After extensive negotiations between government and the NCCD, it was decided that SAFCD should become the representative structure of people with disabilities.

Office on the Status of Disabled Persons

The NCCD played a key role in the establishment of the Disability Programme in the Ministry without Portfolio in the Office of the President which was responsible for the Reconstruction and Development Programme (RDP). On the closure of this Ministry, the Office on the Status of Disabled Persons was moved to the Office of the Deputy President where it now has directorate status.

[ Top ]


Footnotes

1. 1995 October Household Survey

2. Although estimates of disability prevalence vary considerably, the studies completed by the UNDP and the Central Statistical Service provide important information on the nature and effect of disability on individuals and families in South Africa. This information is reinforced by the recorded experiences of disabled people and their families. Data has also been collected by organisations representing and working with this sector of the population.

3. Reports of the abuse of deaf children in schools are common. These children are a particularly victimised group because, without an interpreter, they are unable to communicate their plight.

4. In 1993, disability grants were paid out to 593 162 people. The average grant (1993) of R350 paid out to approximately 30% of people with disabilities was often used to support entire families.

5. The Disabled Children Action Group (DICAG) estimates that 98% of mothers of children with disabilities living in rural areas are unemployed, semi-literate or functionally illiterate single women. Deserted by husbands and lovers, often socially ostracised by their communities, and banished into isolation by their extended families, they tend to withdraw into a world of their own.

6. such as fetching water or firewood, and paying dearly for private transport to hospitals, schools and pension pay points.

7. For example, the loss of social security benefits; the inability of agencies to provide safe accessible shelter; abuse etc.

8. Although the overall policy recommendation is for the inclusion of children with disabilities in mainstream education, the Deaf community believes that Deaf children need special schools, claiming that this is of cardinal importance for their concept and learning acquisition.

9. For example, entrances and toilet facilities of public buildings, poor town planning, etc.

10. Such as day care, education, transport, health, sport and recreation, etc.

11. Such as public media, public service communication systems.

12. Footnote 16 refers.

13. For example, social work services, sheltered employment, assistive device provisioning, rehabilitation services, employment placement.

[ Top ]


Chapter Two

National and International Context


National and International Scenario

World Programme of Action Concerning Disabled Persons

1981 was declared the International Year of Disabled Persons by the United Nations. This year was not recognized by the South African government. It was, nevertheless, promoted by the NGO sector whose adopted theme was 'Full Participation and Equality'.

It was this that gave rise to the development of a disability rights movement in this country.

The most important outcome of the International Year of Disabled Persons was the adoption of the World Programme of Action Concerning Disabled Persons during the UN Decade of Disabled Persons (1983-1993). The purpose of the World Programme of Action was to promote effective measures for the prevention of disability, rehabilitation and the realization of equal opportunities for persons with disabilities.

1986: National Year of Disabled Persons

1986, the International Year of Peace, was also not recognized by the South African government which, apparently in an attempt to divert attention from the violence raging in the country at the time, declared a National Year of the Disabled.

Investigations carried out on the circumstances of disabled people by NGOs (including the DPSA and the Government) revealed the complete absence of any workable policy on disability. Gross discrepancies in the few existing services were also revealed, in terms of both racial and rural/urban distribution.

Following the 1986 investigation, an Interdepartmental Coordinating Committee for the Care of the Disabled (ICCD), involving state departments and the NGO sector, was established. Its role was to implement the various recommendations arising out of the 1986 investigation. Because, by the end of 1991, it had not succeeded in implementing a single one of its tasks, it was disbanded and a restructured South African Federal Council on the Rehabilitation of Disabled Persons (SAFCD) was given responsibility for policy development.

In doing so, it was to build on the experience and creative interaction between service providers and representatives of organizations of disabled people over the preceding seven years.

It was also decided that the Federal Council should interface with the political negotiating process rather than the government of the day. However, this structure also struggled due to lack of capacity and other factors.

Standard Rules on the Equalisation of Opportunities for Persons with Disabilities

The UN facilitated the drafting of the Standard Rules for the Equalisation of Opportunities for Disabled Persons to provide governments with clearer guidelines on actions to be taken. The Standard Rules were adopted by the UN General Assembly on 20 December 1993.

[ Top ]

Aims of the Standard Rules

The aims of the standard rules are as follows:

  1. They imply a strong moral and political commitment by the State to take action for the equalization of opportunities for persons with disabilities.
  2. They offer an instrument for policy-making and action. The purpose is to ensure that all persons with disabilities may exercise the same rights and obligations as other citizens.
  3. They outline crucial aspects of social policies in the disability field, and provide models for the political decision-making process required for the attainment of equal opportunities.
  4. They propose national mechanisms for close collaboration between the State, organs of the UN, NGOs and DPOs(1).

Objectives of the Standard Rules

The objectives of the Standard Rules are to:

  1. stress that all action in the field of disability presupposes adequate knowledge and experience of the conditions and special needs of persons with disabilities;
  2. emphasise that the process through which every aspect of the organisation of society is made accessible to all is a basic objective of socio-economic development;
  3. outline crucial aspects of social policies in the field of disability, including, as appropriate, the active encouragement of technical and economic cooperation;
  4. provide models for the political decision-making process required for the attainment of equal opportunities, bearing in mind: widely differing technical and economic levels; the fact that the process must reflect keen understanding of the cultural context within which it takes place, and the crucial role of persons with disabilities in it, and
  5. propose national mechanisms for close collaboration among states, the organs of the UN system, other intergovernmental bodies and organisations of persons with disabilities.

Political and Moral Foundation

The international Bill of Human Rights comprises the Universal Declaration of Human Rights, the International Covenant on Economic, Social and Cultural Rights and the International Covenant on Civil and Political Rights, the Convention on the Rights of the Child and the Convention on the Elimination of All Forms of Discrimination against Women, as well as the World Programme of Action concerning Disabled Persons. It constitutes the political and moral foundation for the Standard Rules on the Equalisation of Opportunities for Persons with Disabilities.

Disability Rights Charters

The following disability rights charters are pertinent.

[ Top ]

The Disability Rights Charter of South Africa

During 1991, the Disability Rights Unit of Lawyers for Human Rights (LHR), together with DPSA, began working on a charter of demands of disabled people in South Africa.

The development of a draft charter involved a lengthy process of consultation with many organisations of disabled people throughout the country. The demands of disabled people were collected in this process. The final charter, after various processes of ratification, was finally adopted by the DPSA Council in December 1992.

The Disability Rights Charter of South Africa reflects demands from disabled people. The aim is to promote equal opportunities for all disabled people. It is a document which asserts the right of all disabled people to live independently in a safe environment and in a society free from all forms of discrimination, exploitation and abuse.

Specific Disability- Related Charters

In order to address the more specific needs of people with different disabilities, various sectors within the disabled community have been involved in developing charters. These express the specific demands and rights of different sectors of the disabled community. These charters are important in highlighting the fact that people with different disabilities experience discrimination in different ways, and thus reflect the importance of a comprehensive and integrated approach to addressing disability issues in South Africa.(2)

1996 Constitution

Another important development for the disabled community in South Africa took place when the 1996 Constitution came into effect.

Chapter 2 of the 1996 Constitution guarantees fundamental rights to all citizens. It includes, in Section 9, the equality clause, and the right to freedom from discrimination based on a number of social criteria. Discrimination based on disability is specifically mentioned and disabled people are thus guaranteed the right to be treated equally and to enjoy the same rights as all other citizens.

The inclusion of this provision in the Constitution has far-reaching implications for preventing discrimination against disabled people in our society. It now requires practical implementation.

Provision is also made for affirmative action. Persons with disabilities have clearly been disadvantaged in the past, and should benefit from this clause.

The Right to Franchise, however, excludes from voting people with mental disabilities confined to institutions.

The Reconstruction and Development Programme

[ Top ]

The RDP White Paper

The White Paper of the Ministry without Portfolio in the Office of the President commits itself to the following:

    "The Government will design, in consultation with disabled people, a comprehensive programme for the disabled which will enhance their engagement in society and remove discriminatory practices against them, especially in the workplace. Government will also discuss means to reintegrate mentally and physically disabled people into their communities ..."

Despite this significant commitment by the Government of National Unity, it is also important that the needs of disabled people be integrated into all components of the RDP. In this regard, the Government has acknowledged that the first RDP White Paper did not address disability in an integrated manner.

As a consequence, a Disability Programme was established in the Office of the Minister Without Portfolio in the Office of the President to facilitate the full integration of disability into the RDP. With the closure of the Ministry, the Office on the Status of Disabled Persons was formally established in the Office of the Deputy President.

Implementation of the RDP to Date

The importance of integrating disability issues into all areas of policy development and strategic planning, and the weaknesses inherent in programmes where this does not take place, is demonstrable. An evaluation of the implementation of the Presidential Lead Projects (PLPs) thus far, and their capacity to meet the needs of disabled people, showed that:

  1. Free health care for children under six years old has not always automatically been extended to include rehabilitation and the provision of assistive devices.
  2. The Primary School Nutrition Scheme has not reached the majority of disabled children as they are not presently in schools.
  3. The National Literacy Campaign may fail to reach the majority of disabled adults, particularly those who are Deaf and/or blind, due to inaccessible communication and teaching methods. Physically disabled adults may also be excluded as a result of inaccessible public transport and centres of learning.
  4. Schools and classrooms built or renovated under the Culture of Learning Programme are, generally, in contravention of the National Building Regulations of 1986 and therefore tend to be inaccessible to wheelchair users.

An Integrated National Disability Strategy

Vision: A Society for All

In a society for all, the needs of all citizens constitute the basis for planning and policy, and the general systems and institutions of society are accessible to all.

By accommodating the structures of society so that they function in a way that meets the needs of all, society mobilises the potential of all its citizens and, consequently, strengthens its developmental potential.

People with disabilities are a natural and integral part of society as a whole, and should have opportunities to contribute their experience, talents and capabilities to national and international development.

The concept of a society for all, encompassing human diversity and the development of all human potential, captures the spirit of the human rights instruments of the United Nations.

Defining and translating the human rights of disabled persons into specific measures and programmes, however, remains the major challenge. The Standard Rules are the main instrument guiding public policy in the direction of ensuring the human rights of disabled persons. They will also assist Government in creating an enabling environment that will lead to the full participation and equalization of opportunities for persons with disabilities at all levels of society - during and after the period of reconstruction and development. This includes the right of disabled people to assume full responsibility as members of society.

[ Top ]

Objectives

The objectives of the Integrated National Disability Strategyinclude:

  1. the facilitation of the integration of disability issues into government developmental strategies, planning and programmes;
  2. the development of an integrated management system for the coordination of disability planning, implementation and monitoring in the various line functions at all spheres of government;
  3. the development of capacity building strategies that will enhance Government's ability at all levels to implement recommendations contained in the Integrated National Disability Strategy.
  4. a programme of public education and awareness raising aimed at changing fundamental prejudices in South African society.

Principles

Principles upon which the Strategy is based include:

A People-Driven Process

A fundamental principle which informs the outlook of the disability rights movement in South Africa and internationally is the right to self-representation. This means that the collective determination of disabled people must be used to inform the strategies of the government.

In recognizing this principle, the government acknowledges the advisory role of organisations of persons with disabilities and their representatives in the decision-making processes.

The right to equality guaranteed in the 1996 Constitution must include social and political equality at all levels. This means that disabled people should enjoy equal access to fundamental rights, even if the exercise of these rights involves removing barriers and creating enabling mechanisms. For example:

  • the right to vote is restricted by inaccessible polling booths and voting material;
  • the right of access to public information is restricted as a result of inaccessible public media;
  • failure to recognize Sign Language prevents Deaf people from enjoying access to full participation in the social, political and economic life of the country.

Integration and Sustainability

Historically, disability issues have been addressed in a piecemeal, fragmented way. This has been one of the key factors contributing to the marginalisation of disabled people and the dire poverty of the circumstances in which the majority find themselves.

If the needs of disabled people are to be effectively addressed and the objectives of the RDP are to be met, disability must be fully integrated into the principles, strategies and framework of the programme. This will ensure that the effects of apartheid as they have affected disabled people will be eradicated in a sustainable process of reconstruction.

Strategic Guidelines

The development of the Integrated National Disability Strategyneeds to take place within a coherent programme of reconstruction and development and must be planned and implemented in terms of strategic guidelines.

The pursuit of goals of freedom from want, hunger, deprivation, ignorance, oppression and exclusion should underpin strategies for disability planning.

The funding of the Integrated National Disability Strategyas part of reconstruction and development should link up with potential sources of finance and related policies, whether from the public or private sector.

All disability programmes should be carried out with appropriate consultation and facilitation, and should include the necessary monitoring mechanisms.

The Standard Rules on the Equalization of Opportunities for Persons with Disabilities, the World Programme of Action Concerning Disabled Persons and the Disability Rights Charters will be the guiding documents in developing, implementing and monitoring the Integrated National Disability Strategy.

[ Top ]


Footnotes

1. through the SAFCD

2. The SA Blind Workers Organisation (SABWO) drafted a Charter of Demands for Persons with Visual Disabilities that has subsequently been endorsed by the SANCB's Council as representative of the views of persons with visual disabilities. The Deaf community initiated a process of listing their specific demands in response to the Disability Rights Charter of South Africa.

 


Chapter Three

Policy Guidelines

Prevention

Introduction

One of the cornerstones of disability policy is prevention. The majority of disabilities are preventable. There are, however, a number of reasons why there is a failure to prevent disabilities.

Lack of Coordination

Although there are a number of policies aimed at preventing disabilities, there is no coherent coordination between the various government departments to ensure that these policies are properly carried out.

Absence of Policies

There are a number of areas in which policies should exist, but do not.(1)

Lack of Identification and Intervention

Existing prevention policies are not effectively linked to identification and early intervention policies.

Policy Objectives

Primary prevention means trying to prevent the diseases and accidents which may cause impairments and disabilities. Policy objectives are therefore:

Healthy Lifestyle Promotion

The promotion of a healthy lifestyle in the home, at school, in the workplace and on the sports field.

Protective Measures

Specific protective measures such as immunisation, protection against accidents, and protection against occupational hazards.

Secondary Prevention

Secondary prevention means early identification of impairments and disabilities followed by prompt treatment (or early intervention). Secondary prevention may result in:

  1. a cure;(2)
  2. a slower rate of progression of the impairment;
  3. the prevention of complications.(3)

Strategies

Avoidance of Conflict

The avoidance of conflict, war and violence. This includes observance of South Africa's ban on landmines and the pursuit of peace initiatives.

Decrease in Poverty

An improvement in the educational, economic and social status of the poor.

Improved Health Services

A continued improvement in health services. This must include:

  • immunisation;
  • early identification of impairments and appropriate interventions;
  • mother and child health care;
  • appropriate health care instruction;
  • family planning;
  • genetic counselling;
  • rapid and effective emergency medical treatment;
  • effective management and control of disabling and degenerative diseases, and
  • devolvement/decentralisation to primary level of historically secondary level services (e.g. management and control of priority chronic diseases, diseases of older persons and basic rehabilitation).

Reduction in Accidents

A reduction in occupational and environmental accidents through the adaptation of the environment.

Laws to Prevent Accidents

The adoption and implementation of legislation and regulations to prevent accidents at work and on the roads.

Worker Check-ups

Regular check-ups for workers at risk.

Monitoring of Diseases

The regular monitoring of all potentially disabling diseases.

Resources

Adequate resource allocations, both human and financial.

Mechanisms

Coordination of Services

The coordination of services and programmes between all line functions at all levels of government, establishing early identification and intervention network structures and referral systems.

Public Education Programmes

On-going intersectoral national awareness programmes focusing on disability prevention.

Involvement of the Disability Sector

Disabled people's organisations are a key component of disability prevention at community level. Their involvement is particularly important in the facilitation of public education programmes, early identification and referral.

[ Top ]

Personnel Training

All health workers, sports administrators, audiologists, speech therapists, shop stewards, teachers and other local role players should receive orientation courses in prevention and intervention.

Involvement of Role Players

The following role players should be involved in pursuing policy objectives:

  • government, particularly the Departments of Health, Welfare, Labour, Sport, Mineral and Energy Affairs and Education;
  • the disability sector (SAFCD);
  • other role players such as trade unions and the Medical Research Council, and
  • international organisations such as the ILO and the WHO.

Public Education and Awareness Raising

Introduction

One of the greatest hurdles disabled people face when trying to access mainstream programmes are negative attitudes. It is these attitudes that lead to the social exclusion and marginalisation of people with disabilities.

Negative attitudes are continually reinforced. Disability is portrayed as a 'problem'. People with disabilities are viewed as helpless and dependent; as ill and in constant need of care and medical treatment, or as tragic victims.

Culture plays an important role in the way we relate to people with disabilities.(4) This contributes to the perception of people with disabilities as different or 'outsiders'.

The changing of attitudes is not something that happens automatically or spontaneously. Attitude changing is a complex process which involves moving, in a series of stages, from one set of attitudes to another.(5)

Public education and awareness are central to the changing of attitudes.

Policy Objectives

Policy objectives for public education and awareness raising include:

[ Top ]

Awareness Raising

The raising of awareness of disability as a human rights and development issue, and the implications of pursuing the social model of disability. Every component of government and society at large should be targeted.

Decreasing Discrimination

Decreasing discrimination against people with disabilities based on archaic beliefs and customs.

Putting a Value on Diversity

Creating a positive and accommodating environment in which diversity is respected and valued.

Strategies

Strategies for public education and awareness raising include:

National Disability Awareness Strategy

The development of a multi-sectoral integrated national disability awareness strategy;

Media Awareness

The development of disability awareness projects aimed at journalists and the public broadcaster;

Government Awareness

The development of a disability awareness programme within every line function in government;

Media Visibility

Increased visibility of people with disabilities in the media.

Mechanisms

The success of the Public Education and Self Awareness initiative will depend on:

[ Top ]

Self Representation

People with disabilities are best equipped to change perceptions and attitudes towards disability, and should therefore play a central role in the development of strategies and projects through their legitimate organisations. The appointment of a disabled representative to the SABC Board (1996/97) was an important first step.

Public Media

The public media plays a central role in the way society constructs images and beliefs, and should therefore be utilised as a key mechanism in changing attitudes.

South African Human Rights Commission (SAHRC)

One of the responsibilities of the SAHRC, as defined by the Constitution, is human rights education. It is, therefore, essential that the SAHRC takes the lead in the promotion of human rights education pertaining to people with disabilities.

Personnel Training

All training of personnel who deal with the public should contain disability awareness components so that they may understand the Social Model of disability and its implications.

Public Holidays

South Africa has a number of public holidays related to human rights promotion.(6) The International Day of Disabled People falls on 3 December. These days should be used to contextualise and promote disability as a human rights and development issue.


Health Care

Introduction

Appropriate, accessible and affordable health services at primary, secondary and tertiary level are essential to the equalisation of opportunities for people with disabilities.

Such services should include general medical and nursing assistance on an in-patient, out-patient or community home care basis, and specialised health professional assistance.

Where the disability permits, special forms of assistance, offered either on an outpatient basis or at home, are preferred to hospital care. It is believed that such an approach will increase access to comprehensive, extensive medical and psychological/psychiatric assistance services.

Other health care related services are dealt with under separate sections in this document.

Policy Objectives

The development of a comprehensive universal health care system, at primary, secondary and tertiary level, that is sensitive to the general and specific health care needs of people with disabilities.

[ Top ]

Strategies

Elimination of Discrimination

Measures must be developed and implemented to identify and reduce discrimination on the basis of disability in the health sector. Particular attention should be given to the elimination of discrimination against women with disabilities.(7)

National Data Base

A national data base is currently being developed to provide information on the medical causes of disability, health-related disability services, health-related needs of people with disabilities and the incidence of impairment.

Child Health Care

Measures need to be undertaken to implement comprehensive free health care for all children with disabilities under six, including free access to assistive devices and rehabilitation services.

Computer Technology

Computer Technology should be used to increase access to specialised medical care, especially in rural areas.

Barrier-Free Access

National norms and minimum standards for the building of health facilities to ensure barrier-free access must be developed.

Communication

Appropriate communication strategies at service-delivery points must ensure equal access for people with communication disabilities.

Training

Training programmes for medical and allied health personnel must be developed. These should be geared to the development of an understanding of the implications of the delivery of health services within the Social Model.

Rehabilitation

Introduction

Rehabilitation is the word used to describe ways of helping people with disabilities to become fully participating members of society, with access to all the benefits and opportunities of that society.

This means that disabled people should have access to such benefits as early childhood development opportunities, education and training opportunities, job opportunities, and community development programmes.

Rehabilitation services have traditionally been neglected in South Africa. Predominantly based within the health sector, with the Departments of Labour and Education carrying some rehabilitation related programmes, these services tend to be fragmented and uncoordinated. This is due mainly to the lack of a comprehensive national inter-sectoral rehabilitation policy.

The Social Model of disability proposes a more central role for disbled people in the planning, development, implementation and monitoring of rehabilitation services. There will, in other words, be a shift in power away from professionals towards people with disabilities.

To achieve its aims, the rehabilitation process requires a number of supportive services, but its impetus must come from community action and involvement. Community-based rehabilitation should, therefore, form the basis of the national rehabilitation strategy, supported by secondary and tertiary rehabilitation services as proposed in the Health Department's Technical Committee on Rehabilitation Policy.

New labour, social welfare, education and health policies will also have an influence on the scope of rehabilitation in this country.

Policy Objectives

Access to appropriate rehabilitation services can make the difference between leading an isolated and economically dependent life and leading an economically independent life and playing an active role in society. This goal must be reflected in policy on rehabilitation. The main policy objectives are:

  1. to enable people with disabilities to reach and maintain their optimal physical, sensory, intellectual, psychiatric, and/or social functional levels;
  2. to provide people with disabilities with the tools to change their lives and to give them a greater degree of independence;
  3. to prevent secondary disabilities or to reduce the extent of disability;
  4. to take into account the specific needs of different disability groupings.

Strategies

Strategies for rehabilitation include the following.

[ Top ]

Personnel Training(8)

The appropriate training of people involved in rehabilitation services is a core component of a national inter-sectoral rehabilitation strategy.

Training should be understood in its widest sense and should include general training, further training and in-service training, specialised training, retraining and re-orientation, as well as induction/introductory courses for personnel not directly involved in the rehabilitation process.

Inter-sectoral Collaboration

Rehabilitation is a cross-sectoral issue. Major stakeholders are Health, Welfare, Education and Labour, together with DPOs and NGOs. Services should be developed in collaboration with all relevant sectors. The planning, monitoring and evaluation of services must be done with the full participation of people with disabilities and parents of children with disabilities.

DPOs and parent organisations often form a focal point for inter-sectoral collaboration at local level.(9)

Role of Disabled People/Parent Organisations (DPOs)

DPOs play a key role in the provision of accessible rehabilitation services within the community.(10)

These informal activities need to be formalised as a key component of the delivery system. This can be done by providing access to appropriate training to improve and enhance activities; providing subsidies to DPOs involved in rehabilitation activities, and including DPOs in the referral system and data collection process.

A shift in financial resources is also required, with rehabilitation subsidies reflecting the contribution made by DPOs.

Components

Rehabilitation can be provided in a number of contexts.(11) However, rehabilitation services should, wherever possible, be provided within the existing health, education, social welfare and labour structures. This helps ensure the participation by people with disabilities in regular community activities. Where this is not achievable, one stop service stations should be developed at district level in rural areas.

Components include:

Medical Rehabilitation (Therapy) (12)

Medical rehabilitation is an essential part of the rehabilitation process. It involves detailed and timely diagnosis and a whole range of specialised treatments and appropriate techniques.

Medical rehabilitation may occur within the primary health care delivery system, and as specialist services within the secondary and tertiary health service delivery system.

Psychological Rehabilitation

[ Top ]

Psychological rehabilitation focuses on mental health and is used to assist people with brain injuries and/or psychiatric illness.(13)

Educational Rehabilitation (14)

Educational rehabilitation is a component of education support services (ESS).

Vocational Rehabilitation (15)

ILO Conventions 159 (1983) and 168 (1983) provide extensive guidelines for the development of vocational rehabilitation services.

Vocational rehabilitation should be aimed at people with disabilities whose prospects of securing and retaining employment are substantially reduced as a result of their disabilities, but who have reasonable prospects of securing and retaining suitable employment.

Social Rehabilitation

Social rehabilitation focuses on social functioning. (16)

Assistive Devices

Assistive/rehabilitation technology enables individuals with disabilities to participate on equal terms. If people with disabilities are to access their rights and responsibilities and participate in society as equal citizens, they must have access to appropriate and affordable assistive devices.

Assistive devices can be divided into the following categories. They may enhance: Mobility (17); Communication (18); Daily living (19).

Without access to these devices, people with disabilities endure:

  • prolonged periods of hospitalisation (as independence is not promoted) and remain dependent for longer periods;
  • continue to be accommodated in segregated 'special' institutions where they are 'cared for', and
  • continue to experience great difficulties in securing rights to education, employment, etc.

The production, supply and maintenance of assistive devices is presently uncoordinated. Imported devices are steeply taxed, making them very expensive. Initiatives to develop appropriate and affordable assistive technology have, to date, taken place in isolation from general technology development (i.e. they are aimed at a 'special market'), with very little participation by consumers, or collaboration between the various sectors and agencies.

With the assistance of modern technology, products should be developed for use by people with a range of different disabilities. The aim should be to reduce costs by producing for a larger market. This may require greater standardisation of products.

Assistive device services are presently available from a number of different sources. (20)

Barrier Free Access

Introduction

The way in which the environment is developed and organised contributes, to a large extent, to the level of independence and equality that people with disabilities enjoy.

There are a number of barriers in the environment which prevent disabled people from enjoying equal opportunities with non-disabled people. For example: structural barriers in the built environment;(21) inaccessible service points;(22) inaccessible entrances due to security systems;(23) poor town planning;(24) and poor interior design.(25)

The purpose of Section S of the National Buildings Regulations, and its associated Code 0400 (26) includes regulations setting out national requirements for an accessible built environment. Although this was an important development in the equalisation of opportunities for people with disabilities, these regulations have been extremely badly administered and monitored.

[ Top ]

Specific problem areas include:

  1. Planning professionals do not recognise the specific details required in providing a barrier free environment.
  2. Development agencies do not have clear policies on environmental access. The result is that hundreds of schools, clinics and other public buildings are presently being built with no regard for barrier free requirements.
  3. Standards prescribed by the National Building Regulations require review.
  4. No barrier free design norms have been incorporated in the Public Sector Briefing Document.
  5. Specialist expertise in the field of barrier free access is limited in South Africa.

Costs are often cited as the reason for the failure to provide a barrier free environment. Yet, when accessibility is incorporated in the original design, the additional cost does not generally exceed 0,2% of the overall cost of development.

The National Environmental Accessibility Programme (NEAP) was formed in 1993 by the various agencies working in the field of environmental accessibility. It is a programme of action designed to ensure a barrier free environment - including access to information and communication, especially for disabled people.

Policy Objectives

The policy objective is to create a barrier free society that accommodates the diversity of needs, and enables the entire population to move around the environment freely and unhindered.

Mechanisms

Mechanisms required to ensure that policy goals are met include:

Inter-Sectoral Collaboration

Barrier-free access must cut across line functions. (27) Collaboration with NEAP, as the most inclusive organisation addressing the question of barrier-free access, is essential.

Personnel training

All relevant personnel in local government and in the maintenance sections of the relevant departments, as well as all professionals involved in the building industry, should complete an orientation course on barrier free access/design to sensitise them towards the needs of people with disabilities.

Self Representation

People with disabilities experience problems arising from the lack of barrier free access on an almost daily basis. It is, however, important to ensure that advice is sought from the legitimate representatives of disabled people's organisations to ensure that a representative and not a personal viewpoint is obtained.

[ Top ]

Transport

Introduction

There is a need for rapid progress in developing a public transport system that is flexible and accessible. Without this, people with disabilities will continue to remain largely 'invisible' and unable to contribute to, or benefit from, the services and commercial activities available to most of their fellow citizens.

Given the fact that the ability to use services, or attend school or work, is largely dependent on the ability of people to get there, the lack of accessible transport is a serious barrier to the full integration into society of people with disabilities.

Transport services for people with disabilities are currently largely restricted to those who are either associated with a social service agency (i.e. predominantly in the metropolitan areas), or those who are able and can afford to drive modified private vehicles or employ the services of a chauffeur.

Accessible transport as a human right implies a departure from the traditional medical/welfare model of providing trips primarily for medical purposes. People with disabilities should be able to travel, regardless of the purpose of the journey.

Policy objectives

The objective is to develop an accessible, affordable multi-modal public transport system that will meet the needs of the largest numbers of people at the lowest cost, while at the same time planning for those higher cost features which are essential to disabled people with greater mobility needs.

Components

Components of the transport system include:

Road Transport

The White Paper on a National Transport Policy places the main responsibility for identifying the needs of specific categories of passengers on the respective metropolitan and local authorities.

Minibus taxis play a substantial role in the provision of public transport, especially in rural areas. It is therefore essential that this sector be fully integrated into the strategic plan for accessible transport. Such initiatives should form part of the initiatives for the regulation of the taxi industry.(28)

A large proportion of the population use the bus services as their chief mode of public transport. Policy makers tend to focus on wheelchair-lift equipped buses when considering access. There are, however, a number of low-cost accessible features that could be considered in the short term.(29)

Dial-a-ride services have proven particularly popular in densely populated areas. The primary distinction between this service and existing services operated by welfare organisations is that people are able to use the service for any purpose, whether to work, school or for social reasons.

[ Top ]

Railway Services

In its quest to create an accessible commuter service, Metrorail has initiated a pilot project aimed at designing accessible coaches and the redesigning of certain train stations to make them more user-friendly for people with disabilities.

Air Travel

Although the major airports have introduced extensive upgrading projects to make their facilities more user-friendly, smaller provincial and regional airports still remain extremely discriminatory against disabled commuters. This is, in part, due to a lack of information on national guidelines and minimum standards and norms.

The larger airlines have introduced personnel training programmes to facilitate a more sensitive service from airline staff.

Mechanisms

Mechanisms to ensure that policy goals are met include:

Personnel Training

Personnel training has been identified as a key component in providing a more user-friendly public transport system - not only for disabled commuters, but also for the broader South African and tourist population. It is essential that a disability awareness and orientation component for the transport industry is developed and implemented.

Self Representation

Different disability groups have different public transport needs. There are also differences in the needs of people living in rural and urban areas. It is therefore essential that processes to develop accessible commuter systems include participation by all stakeholders.

NEAP has representation from all these sub-groups and is the most representative organisation addressing accessible public transport.

Communications

Introduction

Communications is an important aspect of access to public services.(30) Access to communication, therefore, forms an integral part of the equalisation of opportunities for people with communication disabilities, such as Deaf people, people with speech disabilities and people with visual disabilities

Components

Communication as it relates to disability has two major components:

Message

The first is the manner in which the message is conveyed.

Harmful and negative attitudes are one of the biggest barriers disabled people face when trying to access mainstream programmes. Negative attitudes are reinforced every time disability is portrayed as a 'problem'; where disabled people are regarded as being helpless and dependent, as sick, or as tragic victims.

Cultural beliefs play an important role in the way we relate to people with disabilities, as do images and language.

Access

  1. Sign Language is the first and natural language of Deaf people, whatever the spoken language of his or her hearing parents may be. Sign Language is the central focus of Deaf people's human rights. It is important to note that Sign Language is a language in its own right, with its own grammar and syntax. Sign Language uses the modality of space, in contrast with the spoken language which uses the modality of sound. There are several regional variations of Sign Language in South Africa.
  2. Special Language Systems/Augmentative and Alternative Communication refer to any mode of communication used by people who can not use a spoken or sign language. They include Braille, touch, Bliss symbols or other means of communication.
  3. Interpreter services are linked closely to the communication needs of Deaf people and people with limited or no speech.. These services enable them to communicate freely with society, and are an essential element in the achievement of equal opportunities for people with communication disabilities. They include both Sign Language interpreters, lip speakers, note takers and communication facilitators.

Technology that will ensure inclusive use of public amenities by all consumers is required.(31)

Policy Objectives

The policy objective is to develop strategies that will provide people with communication disabilities with equal opportunities to access to information, as well as public and private services.

Data Information and Research

Introduction

In order to decide how best to deal with poverty and inequality in South Africa, we need to understand the exact size and dynamics of the problem.

The report on Key Indicators for Poverty in South Africa (October 1995) reports that South Africa's compilation of social indicators is one of the worst in the world.

Since April 1994, the data and information sector has begun moving away from researching the needs of the elite to poverty-focused research and data collection that can be used to implement programmes to alleviate poverty and create opportunities.

This has, unfortunately, not necessarily led to the inclusion of data and information on people with disabilities. This is demonstrated by the total exclusion of the relationship between disability and poverty in the report on Key Indicators of Poverty in South Africa (1995).

It is important that all data gathering, research and information dissemination reflects the fact that disability - its classification, definition and measurement - necessarily encompasses biomedical aspects as well as social, economic and political ones. Populations should not be conceived in terms of those who do have a disability versus those who do not. Instead, the concept should be of a continuum that covers the range of disabilities and degrees of disablement.

[ Top ]

Data Collection

Different line functions need different types of information on disability to enable them to target their resources where they are most needed. The lack of reliable information impacts severely on the planning and development of services and intervention strategies aimed not only at preventing disability, but at creating an enabling environment for the equalization of opportunities.

It is important to ensure that the information gathered is relevant to inclusive development planning, and to initiate a process of gathering data on social indicators and income inequality as it pertains people with disabilities.

The National Census of 1996, in conjunction with the annual October Household Surveys, will provide the government with extensive information on the status of living conditions in South Africa. Some NGOs have claimed that the inclusion of a question on disability in the Census Questionnaire, however, runs the risk of leading to undercounting due to the negative connotations and stigma attached to disability. It does not, therefore, provide government with an accurate assessment of the difference in status between disabled people and their non-disabled peers, making targeted intervention virtually impossible.

Back-up house-to-house surveys conducted by people with disabilities have proved to be the best complementary method of data collection.(32)

Research

There is presently no coordination or integration between research on disability and research on gender, social development, human sciences and so on. Disability-related research tends to focus predominantly on the health and/or social welfare aspect of disability.

Research needs to overcome the person-centred approach where, to understand performance problems, equal attention is given to person, physical environment and machine environment. Attention must be given to the conceptualisation and measurement of disability so that research can incorporate insights on the interplay between people, resources and environment.

It needs to be acknowledged that the research process is as important as the outcome (results) of the research, and that specific attention needs to be given to both qualitative and participatory components in research methods to ensure that the different dimensions of disability are appreciated.

Information

The ultimate responsibility for the dissemination of information on the living conditions of people with disabilities lies with the Government.

It is the Government's responsibility to disseminate information on disability throughout both political and administrative levels of the national, provincial and local spheres.

People with disabilities should have access to full information on personal health, education and social aspects affecting their lives.

All strategies and mechanisms developed to make information accessible to citizens should be available in a format accessible to people with disabilities.(33)

Policy Objectives

The following policy objectives are identified:

  1. There must be regular, appropriate data collection on the living conditions of people with disabilities.
  2. Research should reflect the gaps between people's physical or mental conditions and their resources/capacity (personal, economic, social), and the environment (geographic, architectural, social, political) in which they live, work and play.
  3. Disabled people should have full access to all information that affects their lives.

Strategies

Strategies necessary for proper data collection and research include:

  1. Data collection in conjunction with national censuses and household surveys, undertaken in close collaboration with, amongst others, universities, research institutes and DPOs.
  2. The facilitation of better coordination of disability-focused research.
  3. The facilitation of access to disability-focused research by the general research sector.
  4. The integration of disability-focused and general research through the establishment of a forum where researchers and the disability sector can exchange information related to disability and research.
  5. The development of a national database on existing research aimed at identifying gaps.
  6. The development of national guidelines and minimum norms and standards for disability related research.
  7. The development of national guidelines for the integration of disability into general research.
  8. The facilitation of the publication of market relevant and significant research findings.
  9. Networking with regional and international research institutions.


Education

Introduction

A human rights and development approach to disability has significant implications for the way in which we provide education for the nation. Educationists tend to classify people with disabilities according to disability. Disabled learners are then either placed in special schools or classes, or totally excluded from any educational opportunity on the grounds that they are "too severely disabled".

The limited capacity of special schools, particularly in rural areas, has resulted in the majority of learners from these areas being excluded from education opportunities altogether, as the environment in regular schools does not facilitate integration.

It is estimated that almost 70% of children with disabilities of school-going age are presently out of school. This naturally results in illiteracy and low skills amongst adults with disabilities, contributing significantly to high levels of unemployment.

Disabled children and their parents have very little or no choice as to which option - mainstream or special school - they wish to access.

The first White Paper on Education and Training commits the Government of National Unity to a unified education and training system which is "committed to equal access, non-discrimination and redress". It also makes provision for a National Commission on Special Needs in Education and Training (NCSNET) and a National Task Team for Education Support Services (TTESS) (34).

These bodies must make policy recommendations to government on the inclusion of learners with special needs in education and training within a single equitable education system. Their work will cover all levels of education.(35)

[ Top ]

Lifelong Learning

Education has traditionally concentrated on years spent at school and, to a lesser degree, on tertiary education. Links with the world of work and training have been weak. Changes in educational policy are of particular importance to the future economic empowerment of people with disabilities.

Early childhood development and learning provides children with disabilities with access to early intervention and socialisation opportunities from an early age.

Outcomes based education will equip people with disabilities with the skills necessary to access the job market.

People with disabilities seldom receive recognition for the significant experiences they gain overcoming daily barriers in their environment. In acknowledging a broader range qualifications and acquired knowledge, the National Qualifications Framework will give people with disabilities better access to formal education and the job market.

Special Needs in Education and Training

It is important to note that:

  1. Not all learners with disabilities have special needs in education and training, as they do not experience learning break-down.
  2. Special needs in education exist both in ordinary centres of learning (mainstream) and in specialised centres of learning.
  3. Special needs in education and training also exist outside the classroom.
  4. Various stakeholders (36) play important roles in responding to special needs in education.
  5. Special needs in education include support in the form of: life skills and independence training; assistive devices and specialised equipment; and access to the curriculum.(37)

Policy Objectives

NCSNET and the NCESS (formerly TTESS) will work in close collaboration in order to make recommendations on the transformation of the education system as a whole, namely:

  1. to facilitate equal access to education - including community initiatives - and equity in education provision at all levels;
  2. to develop a single education system that will cater for the needs of all learners within an inclusive environment with various placement options;
  3. to facilitate capacity building for all stakeholders (parents, teachers, students and planners);
  4. to facilitate earlier access to education for all learners, but in particular for learners with special education needs;
  5. to facilitate effective and relevant research.

[ Top ]

Principles

All South Africans should have equal access to education opportunities, irrespective of the severity of their disability(ies). Every learner has unique interests, abilities and learning needs. Respect for diversity should thus be promoted. All South Africans should:

  1. have access to the widest possible educational and social opportunities;
  2. receive education and training in as normal an environment as possible (38);
  3. be provided with the resources needed to realise their highest potential.

Equity for learners with disabilities implies the availability of additional support mechanisms (39) within an inclusive learning environment.(40)

Target groups (41)

Urgent attention should be given to access to education at all levels by black disabled persons. In particular:

  • very young children with disabilities (pre-school);
  • children with multiple/severe disabilities;
  • the girl-child;
  • hospitalised children;
  • adults with disabilities;
  • people living in remote rural settings.

Key Areas

Key action areas to achieve objectives include:

  1. The development of clear policy that includes all stakeholders and which is understood and accepted at school level and by the wider community.
  2. Curriculum development to ensure flexibility, addition and adaptation according to the needs of individual learners, regardless of the category to which they seem to belong.
  3. On-going pre-service and in-service teacher and support teacher training.
  4. Parent empowerment programmes to encourage parent involvement in assessment and decision-making concerning their children.
  5. Appropriate technology development in education and training.
  6. The development of effective inter-sectoral collaborative mechanisms at national, provincial and school level.
  7. The development a long term vision for teachers fluent in Sign Language and Sign Language instruction in all centres of learning.
  8. Adequate and appropriate education support services to all learners.

Components

Components to be included in the meeting of objectives include:

[ Top ]

Early Childhood Development (ECD)

The majority of young children with disabilities within ECD centres, especially children with intellectual disabilities, is presently accommodated in informal community based day care centres run by parents of disabled children.

Early childhood development and stimulation within an inclusive environment is the cornerstone for the development and successful outcome of an integrated society.

All ECD provisioning should, therefore, be multi-sectoral, community based and integrated to enable all young children to benefit from learning in an environment that acknowledges and appreciates diversity.(42)

General and Further Education

Free compulsory education should apply to all children of school-going age equally. Thus it should include children with disabilities, irrespective of the nature of their disabilities.(43)

Where the general school system does not yet adequately meet their educational needs, students with severe disabilities should have access to special schools. Education in these schools should, however, always be aimed at preparing students for education in the general education system as soon as advisable, and should build and maintain close links with local communities.

Special attention should be given to vocational training in all schools in order to equip learners with special needs.

Parents' rights and preferences must be taken into account in the placement of learners with special education needs.(44)

Higher Education

Institutions of Higher Education are presently undergoing a period of transformation. The National Commission on Higher Education identifies three central features of the broad framework of transformation:

  1. increased participation in the system by a diverse range of constituencies;
  2. increased co-operation and more partnerships between higher education and other social actors and institutions;
  3. greater responsiveness to a wide range of social and economic needs.

The implications of the above as they relate to the inclusion of students with disabilities have not been clearly defined or researched. They will receive attention by NCSNET and NCESS (formerly TTESS).

[ Top ]

Adult Basic Education and Training (ABET)

Access to ABET is the key to the economic liberation of adults with disabilities. Yet present ABET policy guidelines make virtually no provision for the special needs of adult learners with disabilities.(45)

Education Support Services (ESS)

ESS should be seen as an integral part of special education needs with the purpose of providing a back-up or support service.

Every learner, irrespective of age or centre of learning, should have access to ESS.

ESS involves the partnership and coordination of special education needs in a continuum. It must involve professionals and other non-professionals in assisting learners to derive maximum benefit from the curriculum through differentiated (but not fragmented) education and training. (46)


Employment

Introduction

Unemployment remains a fundamental problem affecting the majority of people with disabilities and their families. A number of initiatives have been undertaken by the government since 1994 in an attempt to redress this dire situation in a more affirmative and comprehensive manner.

The new Labour Relations Act has introduced important changes in the area of employment practices. Some protection is provided for both employees and job-seekers against unfair discrimination on the basis of their disability, particularly in the areas of unfair dismissal and hiring practices.

The Code of Good Practice provides some guidance to employers on the importance of not equating disability with ill health, and cautions employers against dismissing people with disabilities on the basis of an incorrect assessment of ill health if they have the necessary capacity to meet the inherent requirements of the job.

The weakness of the Labour Relations Act lies, however, in the fact that this provision is not enforceable, but rather provides employers and the courts with guidelines for appropriate practice.

The extreme levels of inequality and ongoing discrimination experienced by disabled people in the workplace suggest that the provisions of the LRA are not, on their own, sufficient to remove discriminatory practices, nor to support the creation of equal employment opportunities for people with disabilities.

Experiences in other countries have shown that it is necessary to enact legislation expressly designed to re