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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
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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.
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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.
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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:
- there are different definitions of disability;
- different survey technologies are used to collect
information;
- there are negative traditional attitudes towards people with
disabilities;
- 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.
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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:
- low skills levels due to inadequate education;
- discriminatory attitudes and practices by employers;
- past discriminatory and ineffective labour legislation;
- lack of enabling mechanisms to promote employment
opportunities;
- inaccessible public transport;
- inaccessible and unsupportive work environments;
- inadequate and inaccessible provision for vocational
rehabilitation and training;
- generally high levels of unemployment;
- the fact that menial labour is often the only option for
poorly skilled job-seekers;
- inadequate access to information, and
- 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.
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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.
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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.
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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.
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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.
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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.
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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.
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Aims of the Standard Rules
The aims of the standard rules are as follows:
- They imply a strong moral and political commitment by the
State to take action for the equalization of opportunities for persons with disabilities.
- 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.
- 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.
- 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:
- stress that all action in the field of disability
presupposes adequate knowledge and experience of the conditions and special needs of
persons with disabilities;
- 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;
- outline crucial aspects of social policies in the field of
disability, including, as appropriate, the active encouragement of technical and economic
cooperation;
- 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
- 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.
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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
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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:
- Free health care for children under six years old has not
always automatically been extended to include rehabilitation and the provision of
assistive devices.
- The Primary School Nutrition Scheme has not reached the
majority of disabled children as they are not presently in schools.
- 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.
- 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:
- the facilitation of the integration of disability issues
into government developmental strategies, planning and programmes;
- 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;
- 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.
- 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:
- a cure;(2)
- a slower rate of progression of the impairment;
- 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:
- to enable people with disabilities to reach and maintain
their optimal physical, sensory, intellectual, psychiatric, and/or social functional
levels;
- to provide people with disabilities with the tools to change
their lives and to give them a greater degree of independence;
- to prevent secondary disabilities or to reduce the extent of
disability;
- 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
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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.
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Specific problem areas include:
- Planning professionals do not recognise the specific details
required in providing a barrier free environment.
- 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.
- Standards prescribed by the National Building Regulations
require review.
- No barrier free design norms have been incorporated in the
Public Sector Briefing Document.
- 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.
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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.
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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
- 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.
- 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.
- 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.
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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:
- There must be regular, appropriate data collection on the
living conditions of people with disabilities.
- 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.
- Disabled people should have full access to all information
that affects their lives.
Strategies
Strategies necessary for proper data collection and
research include:
- Data collection in conjunction with national censuses and
household surveys, undertaken in close collaboration with, amongst others, universities,
research institutes and DPOs.
- The facilitation of better coordination of
disability-focused research.
- The facilitation of access to disability-focused research by
the general research sector.
- 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.
- The development of a national database on existing research
aimed at identifying gaps.
- The development of national guidelines and minimum norms and
standards for disability related research.
- The development of national guidelines for the integration
of disability into general research.
- The facilitation of the publication of market relevant and
significant research findings.
- 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)
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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:
- Not all learners with disabilities have special needs in
education and training, as they do not experience learning break-down.
- Special needs in education exist both in ordinary centres of
learning (mainstream) and in specialised centres of learning.
- Special needs in education and training also exist outside
the classroom.
- Various stakeholders
(36)
play important roles in responding to special needs in education.
- 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:
- to facilitate equal access to education - including
community initiatives - and equity in education provision at all levels;
- to develop a single education system that will cater for the
needs of all learners within an inclusive environment with various placement options;
- to facilitate capacity building for all stakeholders
(parents, teachers, students and planners);
- to facilitate earlier access to education for all learners,
but in particular for learners with special education needs;
- to facilitate effective and relevant research.
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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:
- have access to the widest possible educational and social
opportunities;
- receive education and training in as normal an environment
as possible (38);
- 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:
- The development of clear policy that includes all
stakeholders and which is understood and accepted at school level and by the wider
community.
- 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.
- On-going pre-service and in-service teacher and support
teacher training.
- Parent empowerment programmes to encourage parent
involvement in assessment and decision-making concerning their children.
- Appropriate technology development in education and
training.
- The development of effective inter-sectoral collaborative
mechanisms at national, provincial and school level.
- The development a long term vision for teachers fluent in
Sign Language and Sign Language instruction in all centres of learning.
- Adequate and appropriate education support services to all
learners.
Components
Components to be included in the meeting of objectives
include:
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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:
- increased participation in the system by a diverse range of
constituencies;
- increased co-operation and more partnerships between higher
education and other social actors and institutions;
- 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).
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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 |