© Independent Living Institute
Independent Living Institute,
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Integrated National Disability Strategy
Office of the President
CHAPTER THREE: POLICY GUIDELINES
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 Co-ordination
Although there are a number of policies aimed at preventing disabilities, there is no coherent co-ordination 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. (Footnote 1)
Lack of Identification and Intervention
Existing prevention policies are not effectively linked to identification and early intervention policies.
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.
Specific protective measures such as immunisation, protection against accidents, and protection against occupational hazards.
Secondary prevention means early identification of impairments and disabilities followed by prompt treatment (or early intervention). Secondary prevention may result in:
- a cure; (Footnote 2)
- a slower rate of progression of the impairment;
- the prevention of complications. (Footnote 3)
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:
Reduction in Accidents
- 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).
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.
Regular check-ups for workers at risk.
Monitoring of Diseases
The regular monitoring of all potentially disabling diseases.
Adequate resource allocations, both human and financial.
Co-ordination of Services
The co-ordination 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 inter-sectoral 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.
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
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. (Footnote 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.(Footnote 5) Public education and awareness are central to the changing of attitudes.
Policy objectives for public education and awareness raising include:
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 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 for public education and awareness raising include:
National Disability Awareness Strategy
The development of a multi-sectoral integrated national disability awareness strategy;
The development of disability awareness projects aimed at journalists and the public broadcaster;
The development of a disability awareness programme within every line function in government;
Increased visibility of people with disabilities in the media.
The success of the Public Education and Self Awareness initiative will depend on:
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.
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.
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.
South Africa has a number of public holidays related to human rights promotion. (Footnote 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.
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 out-patient 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.
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.
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. (Footnote 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 should be used to increase access to specialised medical care, especially in rural areas.
National norms and minimum standards for the building of health facilities to ensure barrier-free access must be developed.
Appropriate communication strategies at service-delivery points must ensure equal access for people with communication disabilities.
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 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 disabled 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.
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 for rehabilitation include the following.
Personnel Training (Footnote 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.
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.(Footnote 9)
Role of Disabled People/Parent Organisations (DPOs)
DPOS play a key role in the provision of accessible rehabilitation services within the community. (Footnote 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.
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.
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 focuses on mental health and is used to assist people with brain injuries and/or psychiatric illnesses. (l3)
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 focuses on social functioning.(16)
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.
Without access to these devices, people with disabilities endure:
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.
- 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.
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
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 Building 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.
Specific problem areas include:
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.
- 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.
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 environmentãincluding access to information and communication, especially for disabled people.
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 required to ensure that policy goals are met include:
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.
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.
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 advise is sought from the legitimate representatives of disabled people's organisations to ensure that a representative and not a personal viewpoint is obtained.
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.
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 of the transport system include:
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.
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.
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 to ensure that policy goals are met include:
Personnel training has been identified as a key component in providing a more user-friendly public transport systemãnot 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.
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.
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.
Communication as it relates to disability has two major components:
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.
1 Sign Language is the first and natural language of Deaf people, whatever the spoken language of his or her hearing parents may be. Sign Language is the central focus of Deaf people's human rights. It is important to note that Sign Language is a language in its own right, with its own grammar and syntax. Sign Language uses the modality of space, in contrast with the spoken language which uses the modality of sound. There are several regional variations of Sign Language in South Africa.
2 Special Language Systems/Augmentative and Alternative Communication refer to any mode of communication used by people who can not use a spoken or sign language. They include Braille, touch, Bliss symbols or other means of communication.
3 Interpreter services are linked closely to the communication needs of Deaf people and people with limited or no speech. These services enable them to communicate freely with society, and are an essential element in the achievement of equal opportunities for people with communication disabilities. They include both Sign Language interpreters, lip speakers, note takers and communication facilitators.
Technology that will ensure inclusive use of public amenities by all consumers is required. (31)
Data, Information and Research
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 disabilityãits classification, definition and measurementãnecessarily 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.
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 to 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)
There is presently no co-ordination 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.
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)
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 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 co-ordination 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.