Parents

Disabled children's action group (DICAG) South Africa

" We have begun to actively seek the views of disabled learners themselves. At a recent workshop… many children with cerebral palsy and other disabilities expressed their dreams and ambitions."

"We experience an on-going tension between our dual approaches of advocacy and development. We experience a continuous struggle against sliding into service provision because of the pressure of needs at grass roots level."

DICAG was established in 1993 by the parents of disabled children. One of our main aims is to empower ourselves to educate our children in an inclusive environment. DICAG was initially affiliated to Disabled People South Africa (DPSA), the national disabled people's umbrella organization, but is now an independent organization. DICAG has 311 support centres, 15,000 parent members and 10,000 children actively involved.

DICAG is a campaigning organization, which helps to raise the level of awareness of disability and which challenges stereotypes and perceptions of disabled people in South Africa. DICAG aims to ensure equal opportunities for disabled children, especially in education.

Stone soup, Kwazulu Natal

In Kwazulu Natal, a group of our parents started with nothing. Disabled children are excluded from mainstream school and special schools are a long way away. Local school authorities were hostile to the idea of inclusion and told the parents who approached them, "You cannot tell us what to do!" and "We have no facilities for teaching disabled children!"

A group of us, all unemployed mothers, many with little or no education got together and decided that, "We must do something for these children!" We decided that one or two of us would look after the children for the others who would then be free to look for work. We had no funding, no special resources. We agreed that each parent would send something with their child - half a cabbage, a carrot, a potato, an apple - whatever we could manage. With these ingredients, those of us who were caring for the children would cook soup.

We organised a rota for caring for our children. One of us volunteered to cook; one became a teacher; others looked for piece- work. Parents who managed to find work began to contribute a little to those who cared for the children and to the emerging school. One worker began to buy bread for the children.

A social worker heard about the group and came to see what we were doing. She was successful in negotiating an allowance to be paid to those of us who stayed to care for the children. That was the start of our early childhood development centre.

Facing school authorities (North Western Province)

In North Western Province the chairperson of the local group of DICAG heard that there was to be an Education meeting at the local school. She arranged to take two disabled children in their wheel chairs to the school.

"I brought the two children in with me. I talked to the education officers on the platform and all the staff about the education needs of disabled children and how they could be met. I pointed out that disabled children whose mobility depended on wheel chairs could be included in classes if they were held on the ground floor. I suggested that simple ramps could be made to increase access to the school."

Her words and, importantly, the presence of the disabled children themselves made a dramatic impact and has increased the local education department's motivation to make a start in implementing inclusion.

Establishing Kamagugu primary school - a new beginning

Kamagugu is a suburb of Nelspruit, the capital of Mpumalanga Province. We experienced serious problems in trying to enroll our disabled children in public schools. Even when we succeeded in finding a school to accept our children, there was the problem of getting there as none of the schools were within walking distance of Kamagugu and we had no transport.

So, when the Kamagugu Residents' Committee was set up, education was high on our agenda. The whole community and those of us who are parents in particular have been very much involved in promoting a culture of learning, teaching and service within Kamagugu.

Estimates suggested that as many as 80 - 85% of disabled school age children were excluded from school and formal education. Deaf and blind learners faced virtually total exclusion, as the province had no special facilities for learners with visual disabilities (eg Braille, independence training), nor for teaching through sign language for deaf learners.

Four major disabled people's and parents' organisations came together to form the Mpumalanga Special Education Initiative Voluntary Association (MSEIV) to develop strategies to gain access to education for disabled learners, as well as to try to set up pilot projects to demonstrate good inclusive practice. A grant from the Independent Development Trust for the building of classrooms provided funds to support this initiative. We decided to use the funds to educate deaf and visually impaired learners within inclusive learning environments.

We set up a steering committee, consisting of representatives of residents, parents and special education professionals, to take responsibility for the development of a new local school. The committee has adopted the principles of non-discrimination, inclusion, community involvement, excellence through partnerships and participation and social integration.

We planned barrier-free school buildings, tried to get additional funds and donations; organised meetings with the local community to explain our aims and ideas for the school and all this activity mobilised support. The soil turning ceremony at the start of building the school received considerable media coverage in the province. Further donations have enabled us to buy essential equipment.

Three teachers have been seconded from Mgwenya College and six volunteers assist the teachers on a daily basis. So far the school has neither non-teaching staff, such as cleaners, administrative clerks not support staff such as therapists, interpreters etc. Negotiations with the district education office are under way and subsidies for the disabled children have been paid from the academic year 1999-2000. There are to be six teaching posts.

51 learners have been enrolled and formal assessment of their needs is a priority. 10 of the children are intellectually disabled and they will remain in the present temporary classrooms when the deaf and visually impaired learners move to the new school. Mpumalanga Primary School is the first multi-lingual school in the country with South African sign language as one medium for teaching and learning. The school is inclusive, with both disabled and able-bodied pupils.

"DICAG has helped us to include our children. We already see lots of change in our children. We are so proud!"

" Before we started work with the parents of other children, many parents were against the idea. They feared that disabled children 'would spoil our children'. Now parents are very willing to take all their children to that school."

This initiative has already led to further plans for the establishment of other schools in the province which will be resourced to include disabled learners.

How DICAG developed

We were able to develop rapidly. Local groups within the various provinces formed provincial teams with their own Provincial executive. The National Council, where the "heart of DICAG's power lies", is made up of provincial team representatives. The Council has its own national executive which is also the management body of DICAG.

DICAG operates in eight provinces of South Africa and is in the process of mobilising a ninth. Each local group elects its own officers and determines its own priorities and methods. So there are considerable differences locally and regionally. Our strength comes from local parents coming together to share experiences and deciding on joint strategies.

The organisation supports local groups by informing parents of their children's rights to education and by providing training as well as advice on how to mobilise other parents of disabled children to be active in relation to issues that affect their children's development. DICAG is governed by, for, and with parents of children with disabilities.

DICAG's Role in relation to Inclusive Education

Parents within DICAG have high expectations. We expect our children to have access to appropriate education and all teachers to be adequately trained to meet the diverse needs of all the children in their classrooms. We expect transport to be made available. The difficulty of getting to and from school remains a major barrier to education.

Education has been a priority from the outset. Our aim is to ensure that all children have access to a range of educational opportunities that can best help them fulfil their learning potential. In order to achieve this, DICAG tries to ensure that all children with disabilities are given the opportunity of an early start to education through early childhood development programmes and facilities which can offer early intervention and stimulation.

DICAG's concept of education is broad. We emphasise the importance of stimulation for children with the most severe physical and intellectual disabilities to enable these learners to respond and communicate their needs. The need to communicate in a wide variety of ways, to be as independent as possible and to develop the learner's potential are all regarded as vital educational goals.

Recently we have begun to actively seek the views of disabled learners themselves. At a workshop with pupils from special schools, including deaf children, children with cerebral palsy and other physical disabilities, many expressed their dreams and ambitions. Most children wanted to enter tertiary education and expected education to give them the opportunity to obtain employment. Deaf children also expressed dissatisfaction at the low level of signing among their teachers!

Difficulties and Barriers facing us

• Disabled children and their families experience considerable isolation and encounter negative social attitudes.

• Parents of disabled children are themselves very suspicious of organisations that try to offer support and help. We met considerable reluctance when we first tried to contact parents. Most parents did not want people to know that they have a disabled child for fear of victimisation. Others did not believe that their children were capable of benefiting from education.

• Professional service providers have also not always welcomed DICAG initiatives in promoting the development of parents of disabled children and of the children themselves. They have often seen DICAG as a threat.

• Many educators in special schools have resisted the idea of inclusion. Parents who promoted and advocated in favour of inclusion were subjected to many threats and under-hand tactics. Staff in residential education referred to the concept as "preposterous"! Managers of special institutions funded by public money protested most loudly in defence of their "white elephant empires"!

• Objections to inclusion persist. The Education Commission's report was tabled in November 1997. Still no legislation is forthcoming. There seems to be a very uncaring attitude towards the education needs of children who experience barriers to learning. While there is some acceptance of the idea that children with disabilities should be included in a transformed education system, this is not extended to the wide variety of other children who experience barriers to learning. Many children, such as farm workers' children and street children remain outside the education system.

• The government pleads inadequate funding to address the concept of inclusion in such a broad sense. The government lacks a unified policy on subsidies for early education and care centres, either in relation to the informal centres initiated by parent groups or in subsidies to the children attending them. There is a marked disparity between subsidies available to able-bodied children and those available to disabled children, who receive less on a daily basis. As a result most provinces could not meet the demand and many early education and care centres were forced to close down. The disabled children who had attended and benefited from them were again confined to their homes.

• Many of the schools that cater for children with special needs follow a rigid set curriculum. Very few teachers take the initiative in adapting the system to the needs of the individual child.

• The special school system has, on the whole, encouraged dependency. This causes particular difficulties when students have to leave school and the services which they received suddenly cease. There is, as yet, no follow up in relation to career planning or preparation for leaving school and post-school years. In most cases, where disabled children wish to continue their education beyond grade seven within mainstream school, the curriculum is not compatible with their needs. Many children remain at home, unable to complete their education.

• Parents are only marginally involved. Many parent bodies are expected to organise fund-raising activities as their only contribution to the development of school and students.

• Some of the worst experiences we have encountered have demonstrated the level of abuse of learners in special schools. We have experience of both physical and sexual abuse and are trying to determine the level of abuse that disabled children experience.

• Finally DICAG experiences an on-going tension between our dual approaches of advocacy and development. We experience a continuous struggle against sliding into service provision because of the pressure of needs at grassroots level.

Strengths and Strategies

DICAG's strength lies in the commitment of our members to improving the situation for their own children. Through parent to parent support, and their participation in decision-making, parents are empowered to represent their own and each other's children. This makes our voice so much stronger in the fight for equal educational opportunities. The most effective strategy DICAG has developed lies in fostering the collective voice of parents and using the power of our numbers!

Strategies we have found useful include the following:

• We found that visiting families door-to-door and talking to parents on a one-to-one basis was the only way to gain their trust, engage their interest and mobilise their commitment.

• We had to be sensitive to and address the pressures on parents. Mothers have to cope with a multitude of tasks and activities as well as caring for their disabled child. We had to offer support to enable parents to attend training and other activities and to participate in planning.

• To counteract the hostility from other service providers we have initiated a focus on partnership-building between ourselves, as consumers, and official service providers to create goodwill and collaboration. Partnership contracts between the Department of Education, Health and Welfare and ourselves are already evidence of some success.

• Gathering and providing relevant information has been invaluable in advocating for disabled children's rights. Parent empowerment is a key factor as it enables parents to act on information and plan collectively how to overcome the obstacles we encounter.

• Public demonstrations are an effective means of getting our message across. A successful example of this was a huge demonstration in 1992 demanding a single care grant. This led to new legislation giving a Care dependency grant to children with disabilities who now include children under 3 years and children who are physically disabled. Public demonstrations have also helped us in Mpumalanga to get a school set up by parents registered and in Kwazulu Natal to help parents gain a seat on the provincial Education Committee.

• Another key strategy is to make use of existing influential structures. The Office of the Status of Disabled Persons has been very useful to DICAG's campaign for the equal rights of disabled children. Our peer group organisation, Disabled People South Africa (DPSA), is a valuable asset. Together, DICAG and DPSA have a powerful, united voice in joint lobbying and advocacy ventures. Our two organisations jointly represent the majority of South Africa's disabled community.

• DICAG and the whole disability movement argues for ALL to be catered for and emphasises that children with disabilities are only one group among disadvantaged learners.

Our Achievements

In spite of many difficulties and challenges we also have some considerable successes:

• From an early stage we lobbied strongly to influence national policy. We succeeded in having DICAG's chairman selected as a commissioner on the National Commission on Special Needs in Education and Training and DICAG became a member of the National Coordinating Committee for the Commission reference groups. We were successful in ensuring that there was a strong focus on children with disabilities and in 1996 we developed a position paper on Education for ALL by 2000. In 1997 DICAG provided direct input into the National Report and into the Commission's National Conference. DICAG is currently part of a monitoring group relating to government plans to bring in legislation regarding barrier-free education based on recommendations in the Commission's report.

• In 1996 DICAG developed a constructive critique of the national programme of Action following ratification of the Convention of the Rights of the Child. Despite the fact that the plan includes children with disabilities, actual educational programmes were not inclusive of disabled children. In Kwazulu Natal as a result of this critique, DICAG parents lobbied for greater inclusion for children with disabilities and now have a seat on the provincial Programme of Action Committee.

• Since 1997 DICAG has adopted a "reverse inclusion" policy within our early childhood development centres. There are now 311 community child development centres situated mainly in poverty stricken rural and peri-urban areas which provide about 10-12,000 children with early childhood development opportunities. Non-disabled children are accepted along with disabled children in the centres. This strategy has led to disabled children being placed in mainstream schools with their non-disabled peers. Their progress is monitored by the parents and the teachers of the centres.

• DICAG has helped to influence special schools which now zoom into extra activities for the children. Their achievements in sports, singing and drama greatly develop the children's confidence and their participation and expression through drama etc is a powerful means of shifting attitudes and beliefs to a more positive view of their talents.

• Our disabled children have become more visible in the daily life of the South African community through our support and empowerment of parents. This has made a difference at all levels. DICAG is approached for input in legislative and policy reforms as well as in community initiatives.

Plans for the Future

Our plans for 2000 and beyond include:

• We plan to increase our interaction with, and empowerment of, disabled children themselves.
• We plan to begin to include the brothers and sisters of disabled children in discussions and activities.
• We will continue to work for inclusion in education and in the community of ALL disadvantaged learners.

The Social Context in South Africa

South Africa's population is over 43 million. While the country is rich in natural resources and particularly in minerals, including gold and diamonds, the legacy of apartheid remains apparent in the vast disparities in wealth and opportunities between ethnic groups and rural and urban areas. South Africa has made considerable progress since the ending of apartheid in 1994, by instituting democratic elections and adopting one of the most progressive constitutions.

Education

In 1996 a new Education Act was passed to begin to redress injustices in provision. Previously there had been two forms of discrimination faced by disabled children: there was racial segregation through apartheid, and segregation based on the medical model of disability as a medical condition, rather than looking at social arrangements which create barriers.

The new Act aims to provide "asset-based development" for all children and to provide a national system for the organisation, funding and governing of all schools. School attendance is compulsory between the ages of 7-15 years. All public or state schools are required to admit ALL learners and to meet their educational needs. The Act and the South African constitution safeguards the right of ALL children to education.

However many groups of children are still poorly served by the current educational system. Early childhood development has so far been severely neglected. Estimates suggest that only 10% of children under 6 years have access to early childhood development programmes. Early child development centres now exist within many communities but rarely accept children with disabilities. Although no national data exists, one province that has undertaken a survey found that less than 1% disabled children were admitted to early education programmes. This is precisely why DICAG's priority was to support parent initiatives to set up early stimulation and development centres for their disabled children.

Another major concern is that children who are deaf or blind or both have to go to schools outside their communities and are often placed across provincial borders. This means that they are sometimes removed from their own family at the age of three years.

Very few disabled learners have access to basic adult education, further education and training or higher education. This is a key issue for disabled people.

But disabled learners are not alone in being poorly served by education. Street children are currently not catered for at all and a conservative estimate suggests there are at least 10,000! Many children who grow up on farms do not attend school. Children in poor rural communities are at risk of receiving no education whatsoever because of the poverty faced by their families.

Time Frame

Sources of information:

The consultant commissioned by EENET to work on this publication met with the National Coordinator and regional representatives who were in Cape Town for their annual National Planning Seminar. Their stories and views were supplemented by documentation produced by DICAG and provided by Washeila Sait, the National Coordinator.

DICAG
3rd Floor, Norlen House
17 Buitenkant Street
Cape Town 8001
South Africa

email: dicag@iafrica.com

Parents

05/06/2001