About half of families with a disabled child are living in housing unsuitable for them and their child. Current policy does not adequately address the housing needs of disabled children. In particular, the means-test and the delays associated with the Disabled Facilities Grant system leave many families in very difficult circumstances.
Families with very disabled children, who are increasing in number, are particularly likely to have difficulties with their housing, as are families from black and minority ethnic communities. They also often experience a lack of information about their entitlements and a lack of understanding on the part of housing and other professionals.
Not enough resources – in terms of financial assistance and availability of technical advice – are made available to families of disabled children who face housing difficulties. This results in a poor quality of life for many children and an undermining of their human rights to privacy, to play, and to involvement in family life.
Research on the housing circumstances of disabled children also illustrates their families’ experiences of social exclusion and the importance of including these families in national and local initiatives to tackle social exclusion.
Mr and Mrs A lived in a four-bedroom house on an estate with a bad reputation on the edge of the city. They had six children, two of whom were severely disabled. One child had a serious heart problem and the other had cerebral palsy. Their ‘people carrier’ was frequently vandalised but was too big to go into the local garage block. The family reported that their council had been very dismissive of them when they asked if their garage could be made larger. A specialised buggy had just been stolen from the shed. The garden was unusable – it had neither grass to play on nor a hard surface. The house was in poor repair and very cramped.
From “Homes unfit for children”, Oldman and Beresford (1998, p. 15).
Children who have a range of health and support needs often receive many assessments and uncoordinated services from different agencies. They are also particularly at risk of unequal access to health care and education. Access to both primary care and hospital services can vary from area to area. Schools have different policies concerning support to children who need medication or who use ventilators etc. Some children’s human rights to good health care and to education are being contravened.
Childcare services and play and leisure activities open to non-disabled children and young people frequently exclude disabled children and young people. The ordinary sources of having a ‘break’ are therefore closed to parents and they have to look to specialist provision which often means segregated provision – facilities and services which separate their children from their peers and the wider community.
We like to have fun, we like to go partying but this society won’t make it possible for us.
From “The Road to Freedom”, Jawaan Aur Azaad (1994)
The relationship between social services departments and families with disabled children is dominated by parents’ requests for a break and the most common service provided is ‘respite care’. Parents ask for services they know are available, and social workers focus on whether the child and family meet relevant eligibility criteria, which tend to be related to level of impairment rather than to family and support needs.
There is a significant amount of unmet need amongst families with disabled children: even amongst those with very disabled children, most do not use existing respite care services. They may not know about such services, or they may feel existing services are inappropriate for their child. Children with very challenging behaviour and those with nursing care needs are often not catered for.
There are increasing numbers of children with continuing nursing care needs, whose parents may be in particular need of a break from looking after them but who may find that local short break services do not cater for their needs. Some of these families use children’s hospices as a source of support: most children staying in hospices are not in fact terminally ill. Children Act regulations do not cover placements of disabled children in hospices.
Disabled children and young people are rarely consulted or involved in decisions about their care. It is rare for children to be consulted on their views, partly because many of them have communication impairments and social workers do not feel they have the necessary skills or experience to communicate with them.
The Children Act 1989 requires social services departments to "ascertain the wishes and feelings" of children who spend time away from their families in "respite care" services, and to carry out reviews and care plans. Nevertheless, disabled children whose parents use "respite care" services are often not recognised as "accommodated" and "looked after" in the terms of the Act; their "wishes and feelings" are seldom ascertained; reviews and care plans are often not done. Many children are not visited at their shared care placement and most families using this type of service do not have their own social worker.
Anyone, whatever their level of communication impairment, can express their views on what is happening to them. Disabled children’s human rights are more likely to be protected and promoted when all those in contact with them address the barriers to listening to what children have to say (however they communicate this).
Parents find that getting a diagnosis for their child is important: having a ‘label’ gives access to, and credibility with, health, social services and education professionals. Parents often find that the most helpful sources of information and advice come from others with similar experiences. Getting information about what they and their children are entitled to, as early as possible, is very important.
Parents appreciate professionals who value their children and recognise the expertise they have as parents. Most parents want one point of contact for access to services and a co-ordinated approach is especially important for families with more than one disabled child, and for those whose children have continuing health care needs. Parents are more concerned about personal qualities and skills than about the professional background of keyworkers.
Parents want support which is flexible enough to respond to their particular families’ needs, and which is both available in an emergency and can also be planned in advance. Children and young people want support which enables them to do the kinds of things their peers do: this can vary from going swimming with their siblings to spending time away from home with their friends. The most popular services are often those developed by parents themselves, and by local disability organisations.
One of the most popular services amongst parents in the county was a scheme which allocated 80 hours of support workers’ time throughout the year for parents to use when and how they chose. The hours can be used for help in the home, or going out, and can also be used for looking after non-disabled children within the family as well as the disabled children).
From “Still Missing?” Vol. 2 Disabled Children and the Children Act, Morris (1998, p. 20).
Families of disabled children need to get all the social security benefits they are entitled to, as early as possible. Good quality welfare rights advice is vital, particularly for people from minority ethnic groups who are less likely to get their entitlements. Enabling parents to have paid employment is also important and research has identified the factors which make this more likely. These include: appropriate childcare; flexible working hours and ‘family friendly’ work cultures; education and health professionals taking account of parents’ employment when making appointments.
Organisational and professional practice sometimes lose sight of children’s human rights. Keeping these rights in mind can act as a valuable check. Disabled children have the same rights to freedom of expression, to play, leisure and cultural activities, to privacy, a family life, safety, health care and education as other children.
Regarding an education provision for disabled children teachers can be helped to organise their classrooms in ways that foster the learning of all of their pupils. The research has found that certain factors seem to be particularly important. Perhaps surprisingly the availability of material resources, although very helpful, of course, is rarely the key factor. Much more important is the way the task is conceptualised. In this respect the following strategies for teacher development seem to be important:
- Opportunities to consider new possibilities
- Support for experimentation and reflection
In encouraging teachers to explore ways in which their practice might be developed in order to facilitate the learning of all their pupils, we may well be inviting them to experiment with ways of working that appear alien, given their previous experience. Consequently, it is necessary to employ strategies that will enhance confidence and support a degree of risk-taking. Our experience is that a powerful strategy in these respects involves teachers participating in experiences that illustrate and stimulate a consideration of new possibilities for action.
Within the UNESCO project child carers and educators place considerable emphasis on learning through experience. With this in mind workshop sessions are led by teams of resource people who are highly skilled in organising sessions during which participants have opportunities to experience a variety of active learning approaches. In this way they are encouraged to consider life in the classroom through the eyes of learners and, at the same time, to relate these experiences to their own practice in school.
These workshop sessions emphasise three key factors that seem to be important to the creation of more inclusive classrooms. The first of these relates to the importance of planning for the class as a whole. In this respect, we in special education may well have made a tactical error in placing too much emphasis on planning for individuals. Whilst this may have been appropriate when our work was carried out in relatively small, separated contexts, it is to a large degree impractical in mainstream schools. There the teacher's first concern has to be with planning activities that cater for the class as a whole. It can also be argued that an overemphasis on individualised planning of the sort that has been dominant in the special needs field distracts attention from other contextual factors than can be utilised to stimulate and support the learning of each member of the class. This points us to a second key factor.
In addition to planning for all children it has been found that it is helpful to encourage teachers to recognise and use more effectively those natural resources that can help to support children's learning. In particular we are referring to a range of resources that is available in all classrooms and yet is often poorly used, that of the pupils themselves. Within any classroom the pupils represent a rich source of experiences, inspiration, challenge and support which, if utilised, can inject an enormous supply of additional energy into the tasks and activities that are set. However, all of this is dependent upon the skills of the teacher in harnessing this energy. This is, in part, a matter of attitude, depending upon a recognition that pupils have the capacity to contribute to one another's learning; recognising also that, in fact, learning is to a large degree a social process. It can be facilitated by helping teachers to develop the skills necessary to organise classrooms that encourage this social process of learning. Here we can learn much from certain developing countries where limitations of resources have led to a recognition of the potential of 'peer power', through the development of 'child-to-child' programmes (Hawes, 1988). The recent interest in co-operative group work in a number of Western countries has also led to the development of teaching specifications that have enormous potential to create richer learning environments (e.g. Johnson and Johnson, 1994). The introduction of such approaches, however, seem to require more than a knowledge of techniques. What is important is the responsiveness of teachers to the feedback provided by the pupils as the activities within a lesson take place.
This takes us to what we see as the third key factor in creating more inclusive classrooms, i.e. improvisation; in other words, the ability to be able to modify plans and activities whilst they are occurring in response to the reactions of individuals within the class. It is largely through such processes that teachers can encourage active involvement and, at the same time, help to personalise the experience of the lesson for individuals. This orientation is in line with much of current thinking in the teacher education world where there is increasing acceptance that practice develops through a largely intuitive process by which teachers 'tinker' with their classroom plans, arrangements and responses in the light of feedback from members of their classes (Huberman, 1993). Changes in practice, where they do occur, often seem to involve small adjustments, as teachers refine their existing repertoires in response to unusual circumstances, i.e. what Schon (1987) refers to as 'surprises'. Wholesale changes rarely occur, whilst teachers are understandably reluctant to give up ways of working that have proved to be helpful on previous occasions. The research suggests that significant change represents an enormous risk for any teacher and, of course, it is a risk that has to be taken in front of an observant and potentially threatening audience, the class. In a more positive sense, however, it is the reactions of this same audience that can be the stimulus for the tinkering that seems to be an important and necessary factor in the development of practice.
Beyond this emphasis on providing teachers with opportunities to consider new possibilities, the other strategy that we have found useful involves providing support for experimentation in the classroom in forms that encourage reflection on these activities. The key to this seems to be in the area of team work. Specifically we encourage teachers to form teams and/or partnerships within which the members agree to assist one another in exploring aspects of their practice. In the main we have found it to be preferable that such teams involve groups of teachers who work with the same age group of pupils, or teach the same subject. For example, they may be asked to select a forthcoming unit of work or topic and consider how it might be planned in order to incorporate approaches that have been discussed during previous workshop sessions. They are also encouraged to form teaching partnerships that can assist one another during the process of implementing what has been planned. The role of the partners is to be together in the classroom during periods of experimentation, sometimes team teaching or occasionally observing one another more systematically in order to provide feedback and 'coaching' as new possibilities are explored. These forms of in-class support have proved to be a highly effective means of facilitating the development of classroom practice, confirming similar evidence from other studies (e.g. Joyce and Showers, 1988).
Throughout all these processes of teamwork and partnerships a strong emphasis is placed upon what Gitlin (1990) calls...'dialogues'. These go well beyond simple discussion in order to create forms of interaction that encourage a consideration of alternative ways of addressing particular tasks or problems. It leads to what Aoki (1984) has called 'critical venturing', where a community of teachers involved in a development activity use their multiple perspectives as a means of providing opportunities for a reciprocity of interpretation. During such dialogues teachers are stimulated to engage in forms of reflection that go beyond a simple consideration of whether or not what they are doing with their pupils is successful. Rather they can help teachers to consider why they do what they do, what influences have led to these responses and, as a result, what other possibilities have been overlooked.
This form of critical reflection, carried out in collaboration with colleagues, seems to be particularly important in the special needs field. Here our traditions have led us to conceptualise our work in a relatively narrow way, thus missing many possibilities that might lead to better learning opportunities for the children we seek to help. Specifically our traditions have led us to see our work primarily in technical terms (Heshusius, 1989; Iano, 1986). This leads to a concern with finding the 'right' teaching methods or materials for pupils who do not respond to existing arrangements. Implicit in this formulation is a view that schools are rational organisations offering an appropriate range of opportunities; that those pupils who experience difficulties do so because of their limitations or disadvantages; and that they, therefore, are in need of some form of special intervention (Skrtic, 1991). The research revealed that through such assumptions, leading to a search for effective responses to those children perceived as being special, vast opportunities for developments in practice are ignored.
Consequently, it is necessary to shift from a narrow and mechanistic view of teaching to one that is broader in scope and takes into account wider contextual factors, including both community and organisational dimensions (Skrtic, 1991). In particular it is important that as educators we reject what Bartolome (1994) refers to as the "methods fetish" in order to create learning environments informed by both action and reflection. In this way, by freeing themselves from the uncritical adoption of so-called effective strategies, teachers can begin the reflective process which will allow them to recreate and reinvent teaching methods and materials, taking into account contextual realities that can either limit or expand the possibilities for improvements in learning. In particular, it is important that teachers keep in mind that methods are social constructions that grow out of and reflect ideologies that may prevent us from understanding the pedagogical implications of power relations within education.
As child carers and teachers we must remember that schools and other institutions in society, are influenced by perceptions of socio-economic status, race, language and gender. Consequently it is necessary to question how such perceptions influence classroom dynamics. In this way the present methods -restricted discussion must be broadened to reveal deeply entrenched deficit orientations towards 'difference'. As teachers, we must constantly be vigilant and ask how the deficit orientation has affected our perception s of pupils who come to be seen as being special.
Teaching strategies are neither devised nor implemented in a vacuum. Design, selection and use of particular teaching approaches and strategies arise from perceptions about learning and learners. The research suggests that even the most pedagogically advanced methods are likely to be ineffective in the hands of educators who implicitly or explicitly subscribe to a belief system that regards certain pupils, at best, as disadvantaged and, in need of fixing, or, at worse, as deficient and beyond fixing (Ainscow, 1995, p56)
References
Ainscow, M. (1995) Special needs through school improvement; school improvement through special needs. In C. Clark, A. Dyson and A. Millward, (Eds.), Towards Inclusive Schools, London: Fulton
Aoki, T. (1984) Towards a reconceptualisation of curriculum implementation.
In D. Hopkins and M. Wideen (Eds.), Alternative Perspectives on School Improvement. London: Falmer
Bartolome, L.t (1994) Beyond the methods fetish: towards a humanizing pedagogy. Harvard Education Review 64(2) 173-194
Dobson, B and Middleton, S (1998) Paying to care: The cost of childhood disability, Harvard Educational Review 60(4), 443-466
Hawes, H. (1988) Child-to-Child : Another Path to Learning
Hamburg: UNESCO Institute for Education
Heshusius, L. (1989) The Newtonian mechanistic paradigm, special education and contours of alternatives: an overview
Journal of Learning Disabilities 22(7), 403-421
Huberman, M. (1993) The model of the independent artisan in teachers' professional relations. In J.W. Little and M.W. McLaughlin (Eds.), Teachers' Work Individuals, Colleagues and Contexts. New York: Teachers College Press
Iano, R.P. (1986) The study and development of teaching: With implications for the advancement of special education Remedial and Special Education 7(5), 50-61
Johnson, D. W., Johnson, R.T. (1994) Learning Together and Alone, Boston: Allyn & Bacon
Joyce, B. and Showers, B. (1988) Student Achievement Through Staff Development London: Longman
Schon, D.A. (1987) Educating the Reflective Practitioner
San Francisco: Jossey Bass
Skrtic, T .M. (1991) Students with special educational needs: Artifacts of the traditional curriculum. In M. Ainscow (Ed.), Effective Schools for All, London: Fulton
Jawaan Aur Azaad (1994) The road to freedom, Race Equality Unit: Manchester
Morris, J (1998) Still Missing? Vol. 1, pp346-367: The experiences of disabled children and young people living away from their families, London
