Inclusive and Supportive Education Congress International Special Education Conference Inclusion: Celebrating Diversity? 1st - 4th August 2005. Glasgow, Scotland

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Developing inclusive school communities:
experiences of parents of children with disabilities

Prof Petra Engelbrecht, Prof Estelle Swart, Ms Marietjie Oswald
University of Stellenbosch, Stellenbosch, South Africa
Prof Irma Eloff
University of Pretoria, Pretoria, South Africa
peng@sun.ac.za  

This paper represents a summary of a South African research project which is fully described in Swart et al. (2004) and Engelbrecht et al. (in press)

Introduction

In South Africa, parents became the advocates of the inclusion movement in the nineties, promoting the placement of their children with disabilities in mainstream schools. A growing recognition among parents (for example, that children with Down Syndrome can make much better progress when brought up in ordinary family, school and community environments instead of in more isolated settings like special schools) led to the first placements of learners with disabilities in mainstream schools in 1994 (Bellknap, Roberts and Nyewe, 1999; Schoeman, 1997; Schoeman 2000). The advocacy role that parents of children with disabilities played in the movement towards inclusive education in South Africa was therefore groundbreaking. It paved the way for parents to be involved in the decision-making process regarding school placement and the learning support involved in the programmes of their children (Engelbrecht et al., in press).

The Constitution of the Republic of South Africa Act of 1996 includes a Bill of Rights which entrenches the rights of all learners, regardless of race, gender, sex, colour, sexual orientation, disability, religion, conscience, belief, culture or language, to basic education and access to educational institutions (Republic of South Africa, 1996a). The South African Schools Act 84 of 1996 (Republic of South Africa, 1996b) acknowledges the Bill of Rights in that learner diversity and quality education for all within a single system of education are recognised in The Act. These two documents provide the foundation and impetus for the eventual initiative to implement inclusive education in South Africa. Inclusive education, as discussed in White Paper 6 of 2001 (Department of National Education, 2001), finds its philosophical position within the niche created by the ideal of freedom, equality and justice, as described in the Constitution, and is defined as a single system of education dedicated to ensuring that all individuals are empowered to become caring, competent and contributing citizens in a changing and diverse society. The policy documents preceding White Paper 6 of 2001 also drew attention to the disempowerment of parents in the education of their children and the necessity to heed and facilitate the ongoing recognition of the rights and the roles of parents in making choices and informing educational policy. This commitment is emphasised in the following statement: The establishment of partnerships with parents is essential to the success of the inclusive approach to learning and development … (Department of National Education 1999:1) (Engelbrecht et al., in press).

This mandate for parental involvement which entitles parents to share with professionals in the decision-making of their child’s education, strives to even out the lack of parental involvement and the balance of power between professionals and parents that has historically been skewed in favour of professionals (Kalyanpur et al., 2000). The South African Schools Act (Republic of South Africa, 1996b) for example, stipulates that the rights and wishes of parents must overrule the admission policy of any governing body of a school, thus giving parents a choice in the placement of their children. The Act embodies the constitutional right to equal access and the right of parents to choose, manifesting in the understanding that rights are entitlements, not favours. It is therefore clear that the values of equity, individual rights and freedom of choice are embedded in the legal requirement for parent participation in their children’s education in South Africa. These values contribute to the expectations of parents that inclusive education can more effectively meet their children’s needs and that they will be considered equal partners with professionals in ensuring an appropriate education for their children with a disability (Grove and Fisher, 1999; Kalyanpur et al, 2000). In the guidelines for the implementation of inclusive education in Education White Paper 6 of 2001 (Department of National Education), it is clearly stated that the active involvement of parents in the teaching and learning process is central to effective learning and development. Such involvement includes recognition for parents as the primary care givers of their children and as such they are a central resource to the education system (Engelbrecht et al., in press).

International literature has however indicated that there is a chasm between the expectations of parents of inclusive education and the actual practice of having a child included (Fisher, Pumpian and Sax, 1998; Grove and Fisher, 1999; Duhaney et al, 2000). The purpose of this research project was therefore to gain an understanding of parents’ experiences of inclusive education in South Africa as it can ultimately contribute to a richer understanding of inclusive education and inform the process of involving parents as partners in developing an effective inclusive education system and community .

Method

This paper presents the integrated findings of the main phase (Engelbrecht et al., in press) preceded by a pilot phase (Swart et al., 2004) of a collaborative research project broadly aimed at exploring and understanding the experience of parents who have children with disabilities in mainstream schools in Gauteng and the Western Cape provinces. Since the researchers wanted to establish a thorough understanding of parents’ experiences of including their children in mainstream schools, a qualitative approach was decided upon. Working within a qualitative design enabled the researchers to participate in the world of the parents (Cantrell, 1993; Morse and Field; 1995) and to explore the meanings parents give to inclusion and their interpretation of their experiences (Merriam, 2002; Leedy, 1997; Morse and Richards, 2002).

Context and participants

The participants were parents of children with a range of disabilities in mainstream schools in the Western Cape and Gauteng provinces in South Africa. The choice of sites (schools in Gauteng and Western Cape) was dictated by the affiliation of researchers in the project with higher education institutions in the two provinces .

A purposeful sample of 47 parents considered as “information-rich cases“(Merriam, 1998: 61) and “believed by the researchers to be sufficient to provide maximum insight and understanding” (Denzin and Lincoln 2000: 6) was selected in collaboration with principals, district support personnel and support groups for parents. The specific selection criteria described the participant as a person who is the parent or primary caregiver of a child with a disability who has been included in a mainstream school for at least one year. All the parents were informed about the general subject of the discussion when invited to take part in the research process.

Data collection

An interview schedule developed by the group of researchers was used merely to guide these interviews. The focus question of the schedule was: Tell us about your experiences as parents of your child’s inclusion in a mainstream classroom and school. Data were collected by means of semi-structured focus group interviews conducted with groups of participants with reliance on interaction within the group, to produce data and insights that would be less accessible without the interaction found in a group.

The researchers who are considered the main instruments in the qualitative research approach conducted the interviews (Denzin and Lincoln, 2000). Each interview lasted about one and a half hours. All interviews were recorded on audiotape and transcribed verbatim.

The interviews as primary data sources were complemented by secondary data that included field notes and documents. The researchers in their role as participant observers made field notes of a descriptive and reflective nature (Denzin and Lincoln, 2000). Documents that were analyzed included biographical questionnaires with information on the child and the family.

Data analysis

The multi-sites involved in the research project complicated the decision about structuring and analyzing data. The question was whether to write across sites by focusing on key themes or to aim for depth and complexity by keeping data within single sites (Savin -Baden, 2000). The two approaches were combined by interpreting the data within the context of each site, using the constant comparative method, developed by Glaser and Strauss (Morse and Richards, 2002) and which combines inductive category coding with the comparison of all the units of meaning derived from the data (Merriam 1998). Data were then categorized across sites.

Trustworthiness was verified throughout the study by using a variety of strategies. These included:

• Multiple data sources;
• The building of a trial of evidence, including tapes with raw data, interview schedules, data reduction and data reconstruction products;
• Working within a research team;
• Member checks after completion of the project that involved taking research results back to the participants (Merriam, 1998).

Findings

The findings indicate that the values of equity, individual rights and freedom of choice manifest clearly in the implementation of inclusive education and the way in which parents experience the inclusion of their children. Table 1 provides an overview of the overall theme of rights along with its respective categories and subcategories. It should be emphasised that the categories and subcategories are highly interrelated and that often, a comment by a parent would relate to more than one category. The two categories presented are therefore presented as interrelated and containing potential indicators of the way in which parents experience how their and their children’s' individual rights are recognised in the practical implementation of inclusive education.

Table 1

( Engelbrecht et al., in press)

Placement process

The inclusion of a child into mainstream education is a dynamic process that starts with the parents' decision to place their child in a mainstream setting. The most obvious motivation parents have for including a child with a disability into mainstream education is the fact that they want their child to be socially included. It is considered to be more important than academic achievement. Parents are even prepared to compromise by giving academic support at home and let their children take extra lessons to enable them to stay in the mainstream school, because this can facilitate successful inclusion into broader society after leaving school.  Social inclusion of their child also encompasses an acknowledgement of the fact that the child has the right to stay part of the community in which the family lives.  The acceptance of friends who have grown up with the child also plays an important role in the placement decision as it offers emotional security for the child.

The way the principal and teachers acknowledge the rights of parents and children plays the most important role in parents' final choice of school. Some schools tend to find excuses such as insufficient funds and inappropriate development of the physical environment, which according to these parents are invalid reasons for keeping these children out of mainstream schools. Parents who are aware of their rights in some instances insisted on the acceptance of the child. Other parents realise that they have a right to insist on inclusion in mainstream education, but they also realise that the negative attitude with which their children are accepted, will not be conducive to their successful inclusion. Parents who are not that well-informed about the policy on inclusive education (Department of Education, 2001) often accept the refusal of access to their children without challenging the process.

  Children's specific disabilities can also limit placement options, because not all mainstream schools are as yet prepared to accept all kinds of disabilities or at the worse can even refuse to accept any child with a disability. One school responded by informing the parents that they cannot accept their child, because “if we do it for one child, we must do it for all”.

The placement process certainly reflects the uniqueness of every family’s situation. No clear pattern could be identified as some parents first placed their children in special schools for part of their school career before moving them into mainstream schools, while others were intentionally placed in mainstream education since pre-school. Finding the most suitable and accommodating school environment for their children is not an uncomplicated choice for South African parents as mainstream schools are not necessarily ready to acknowledge the rights of all learners to be included in mainstream schools (Engelbrecht et al., in press).

Collaboration

Inclusive education is concerned with providing opportunities for all children to become successful learners and shared ownership and collaboration between parents, teachers and learners are critical elements of inclusive education. Parents' experiences of the inclusion of their children with disabilities into mainstream education indicate that collaboration between different role players including professionals like educational psychologists in the inclusion process is either enhanced or impeded by different perspectives on the rights of parents and their children and the actions and attitudes of professionals towards diversity.  

Parents, who see it as their right to be involved in their child's education, see themselves as in collaborative partnership with teachers and professionals and take an active role in the schooling process of their children. They participate as far as possible in the adaptation of the curriculum and give clear guidelines in how to deal with their children in the classroom situation. They also set clear expectations for the role of the educator. They insist that teachers inform and guide other children to deal with their children with a disability. Furthermore they expect teachers to take responsibility for teaching their children and identifying problems in time (Engelbrecht et al., in press).

Parents who view the inclusion of their children into mainstream education, as a privilege rather than a right, tend to compromise and take sole responsibility for ensuring their children’s successful inclusion. They consider it their duty to support teachers and other professionals. Other parents however keep their distance, as they do not want to be labelled as interfering parents and accept that the school will let them know if there is a problem with the child, while some parents withdraw, because they doubt whether their children will do that well.   The challenge for parents seems to be the preparedness to be both assertive about their children’s rights, while simultaneously giving support to their children and members of a collaborative team. Effective collaboration between the parents and the school is to a large extent enhanced if the school acknowledges the rights of parents and their children. According to parents strong leadership is needed to successfully facilitate inclusive education in the schools and the whole ethos of the school should reflect values enhancing inclusive education (Engelbrecht et al., in press).

  The attitudes, negative as well as positive, of teachers have a profound influence on the children’s performance. Some parents reported that teachers who are positive towards inclusion as well as other professionals are also prepared to take up the challenges that the inclusion of children with a disability pose. According to parents these professionals are willing to collaborate and give additional support after hours to the children. They are also prepared to accept guidance from parents. Their focus is on the child as a person, rather than on the child’s achievements and they also encourage all children with a disability to achieve according to their potential (Engelbrecht et al., in press) .

At the other extreme, a negative attitude is associated not only with an inflexible approach to the acknowledgement of the values of equity and rights but also with a fear of the unknown. Schools who reflect these attitudes do not reach out to parents in spite of their efforts. Schools that are more flexible seem to adhere to the values of equity, individual rights and freedom of choice and are more prepared to make adaptations to accommodate the children. The accommodating attitudes of principals seem to be important for the process of inclusion in the school. Their willingness to discuss the child’s situation with the parents regardless of the time it takes and follow up on the conversation with interest in the child’s progress creates a sense of care and trust necessary for effective collaboration. On the other hand, if schools and classrooms are inflexible and unaccommodating, they will not adapt and go out of their way to walk that extra mile. According to parents teachers in these schools tend to have unrealistically high expectations and expect children with disabilities to adapt to their rules, often dictated by their quest for conformity rather than equity (Engelbrecht et al., in press).

Discussion

In spite of the radical changes on policy level in South Africa over the past ten years regarding the acknowledgement of human rights, difficulty in attaining the rights of parents and their children with disabilities is still very evident. The placement of a child with a disability in mainstream education is a challenging and ongoing process that reflects the uniqueness of every family’s situation, for each family has a unique set of needs, wants, capabilities and dreams for their children (Muscott 2002). The child’s specific needs determine the decisions made by parents. For these parents, placement of a child with a disability in a neighbourhood mainstream school means acceptance and emotional support within a familiar environment. The most evident motivation for the decision of parents to place their child in mainstream education is the social inclusion of the child. The inclusive school community consequently is considered a first step towards eventual inclusion into the broader community as being included means having an acceptable standard of living and having opportunities (Dyson 2001) (Engelbrecht et al., in press).

Placement options are limited because not all schools are as yet prepared to accept children with all disabilities, therefore indicating a chasm between not only the philosophy of inclusive education and the actual practise of having a child included, but also between the content of policies and the acknowledgement of the rights of children and parents. Acceptance of the basic rights of children with disabilities is at the heart of placement issues and the formation of inclusive school communities.

The distinction between parents who are aware of and act on their rights and parents who are reluctant to claim their rights became very clear in this study. Parents who claim their rights consider themselves to be equal partners in ensuring appropriate education for their children with disabilities, hence subscribing to the equity principle as defined by Kalayanpur, Harry and Skrtic (2000). As active participants they set clear expectations and collaborate effectively with teachers. On the other hand, parents who still view inclusion as a privilege and not a right are prepared to compromise to keep their children in mainstream classrooms (Engelbrecht et al, in press).

Parents identify the attitudes of schools towards inclusive education and children with disabilities as a critical factor in successfully including children in mainstream classrooms. This is in agreement with the findings of Bennett, Deluca and Bruns (1997 in Wong 2002) and Forlin and Engelbrecht (1997) that the attitude of teachers is one of the hinges of the successful implementation of inclusive education. Parents perceive that the attitudes of the different role players in the school to a large extent inform their actions and that negative attitudes and actions impede the collaboration between parents and schools (Swart et al., 2004; Engelbrecht et al., in press).

The attitude of the principal as leader and vision builder is important in determining the attitude towards inclusive education. A positive attitude is reflected in the willingness of the principal to become involved in the process by making time for the parents, accepting their right to be involved and take an interest in their children’s progress. The principal with a positive attitude motivates teachers to accept the challenges posed by inclusive education and to be prepared to address the specific needs of the children with disabilities in the mainstream classroom. Principals with a negative attitude towards inclusive education tend to argue that they cannot make exceptions for children with disabilities and demonstrate a lack of insight in policy development regarding inclusive education. Parents perceive them as distancing themselves from the process of the inclusion of their children into mainstream schools and that they are only willing to become involved when problems arise (Swart et al., 2004).

Teachers are very often the primary link between the parents and the school and parents perceive teachers with a positive attitude as open-minded and accepting of their children. These teachers view the inclusion of a child with a disability in the mainstream classroom as a challenge. They are willing to learn from experience and welcome input from parents. This results in open communication between teachers and parents that enhance collaboration and can be considered as best practice in inclusive education (Ulrich and Bauer, 2003; Engelbrecht et al., in press).

In this research project parents in general tended to ascribe negative attitudes of professionals to a fear of the unknown and a lack of knowledge. Pivik, McComas and Laflamme (2002) identified these as unintentional attitudinal barriers. These professionals expect the children to adapt to the norm, rather than addressing the specific needs of the child. Parents find it difficult to collaborate with these professionals, but still seem to try and find a way to deal with the negativity in the best interest of their children. If the attitudinal barriers are intentional, professionals tend not to communicate with parents, but would rather avoid them. Findings indicate that some professionals do change their attitudes once they become more familiar with the child and better informed about the child’s disability. This correlates with the conclusion made by Balboni and Pedrabissi (2000) and Forlin and Engelbrecht (1998) that mainstream teachers and other professionals with direct experience of inclusive education and disabilities are more favourable towards children with disabilities than those without these experiences (Swart et al., 2004: Engelbrecht et al., in press).

Parents recommend training for professionals to support them in dealing with a child with a disability. Previous research in South Africa indicated that a lack of professional training when teachers and other professionals are being required to implement new collaborative practices in order to meet the needs of an increasingly diverse learner population is a particular source of stress (Engelbrecht, Swart and Eloff 2001). A central problem in the development of collaborative partnerships is failure to establish trusting, empowering relationships. Training should focus on collaborative partnerships because professionals do not know, in operational ways, what is expected of them regarding collaborative relationships. According to Blue-Banning, Summers, Frankland, Nelson and Beegle (2004) a deeper understanding of the perspectives of family members and professionals of the meaning of factors such as mutual respect and trust could lead to better guidelines for practice.

Conclusion

The implementation of inclusive education is a complex process experienced in diverse ways by all involved and in spite of legislation and the desires of parents, the development of inclusive educational practices in South Africa clearly does not always reflect the values of equity and individual rights. On the one hand, the identified disparity of power and authority in the relationship between parents and teachers and the failure to establish collaborative, trusting and empowering relationships poses a major challenge, but on the other hand, parents who had positive experiences of inclusive education indicate that this disparity can be overcome by shared understandings of the importance of communication, commitment, equality and respect for successful relationships (Engelbrecht et al., in press).

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