Deaf pupils with complex needs
by Susan Gregory
Complex needs and deaf children is itself a complex topic despite the relatively small number of children and families involved. This is for a number of reasons:
The different terminology for disability used both in different places and at different times.
The different statements made about the incidence of complex needs in deaf children depending on the criteria taken.
The different professionals who may be involved and their different priorities.
Deafness in children is a low incidence special educational need (LISEN) and within the population of deaf children the number with complex needs is even smaller, meaning children with a disability or disabilities in addition to their deafness. Yet despite the relative smallness of the population this is a very diverse group with diverse needs.
The diversity of the group arises from the potentially significant number and permutations of disabilities. However, in addition to this we need to recognise that within the combination of disabilities there can be a difference in degree of the implications; for example a moderate hearing loss combined with a severe visual difficulty has different implications from a profound hearing loss with moderate visual difficulties. Furthermore, the combined effect of any two or more disabilities on each other is more than simply the addition of one to another. Thus the number of possible additional complex needs, the degree of deafness and the varying combinations and extent of the other needs mean there is a great range of profiles of these children.
To consider the history of educational provision for this group in the period 1960 to 2010 is complicated for a number of reasons. While provision for these pupils has changed significantly in the period from 1960 to 2010, it is not only developments in provision that are relevant but also changes in educational categories, in terminology and in incidence.
Changing terminology: The terminology relating to disability in the 1960s was different from that used now. In fact, the term ‘complex needs’ was not used then but the combination of each category of disability noted, a point to which we will return. An example of terminology used then is the descriptors for children with severe or moderate learning difficulties included the terms ‘backward’ ‘severely educationally subnormal, SSN’ or ‘educationally subnormal, ESN’ – attributions that would not be used now. Such changes in terminology are indications of changes in attitudes in society to particular disabilities over this period.
Changing population: But it is not just changes in terminology that affect practice with pupils with complex needs but changes in the incidence of complex disabilities. Some of these are due to reductions in the numbers of children with particular disabilities because of, for example, the immunisation against rubella programmes or the decreasing impact of childhood illnesses such as measles. Other factors may have increased the number of children with complex needs such as the greater survival rate of premature babies.
Changing attitudes to disability within society: Legislation affecting the participation of disabled people in society has resulted in a society where disability is more visible and more accepted. This has come about partly through technological advances which have facilitated disabled people’s access in society, and thus participation. However overall there has been a move to recognise and value diversity within society.
Thus any discussion of a history of the education of deaf children with complex needs takes place against the backdrop of all these changes.
The period 1960-1980
In the 1960s special education was concerned with a number of specific categories of disability. From 1959 (revised in 1963) there were ten categories of pupils requiring special educational treatment.
Children with a disability in addition to their deafness were usually described by naming both the deafness and the additional disability. In order to get an idea of the attention given to specific combinations of disabilities an inspection of the journal ‘The Teacher of the Deaf’ for the period 1959-1976 was carried out. A number of additional disabilities of deaf children were addressed, which included deaf blind children, children with learning difficulties in addition to deafness, and children with specific language impairment such as aphasia, cerebral palsy, neurological damage or emotional problems (Grewel, 1965, Purdie, 1966, Nicholas, 1962).
And while most discussions were in terms of named disabilities linked with deafness, there was also a consideration of children with multiple disabilities, some papers linking such problems with prematurity. (Grewel, 1965, Henderson, 1969, Johnston, 1968, Veal and Woodford, 1969, Knee, 1966, Green, 1975).
The two categories of children which received the most attention were those who were deaf blind and those who had learning difficulties variously described as backward children or brain damaged. A paper by Mitchell (1971) gave a comprehensive account of provision for deaf blind children in New Zealand. The emphasis was very much on ways of developing communication and the need to use any residual hearing or sight to do this. The journals also included several discussions and pressure for attention to be paid to the provision and teaching of teachers for this particular group (1959, 1960 (2), 1966). In 1959 the Teacher of the Deaf Journal reports a correspondence between the Ministry of Education, Special Services Division and the Rubella Parents Group about provision for children who are both partially sighted and deaf due to rubella. The Ministry considered the available provision to be adequate, mentioning Condover Hall School, a school for blind children with additional disabilities, but the parents’ group were clearly not happy that response was adequate. Such children at that time were usually educated within provision for children with severe learning difficulties. The parents’ group remained active holding further meetings and a conference in 1961. In 1966 a post was set in in Camden with one worker, the aim being to ‘form the basis of a more reliable and continuous service, with greater individual attention being given to each case, the aim being to put an end to the near-isolation which can be the position of the deaf blind even in their own families’ (Teacher of the Deaf, 1966). In 1974 Hills and Best carried out a study looking at the then current provision made for deaf blind children in mental subnormality hospitals, finding that many of the children classified as deafblind were functioning at a very low level. It was not until 1981 that more dedicated training and provision was developed which is discussed later in this paper.
Deaf children with learning difficulties were also a focus of attention and in January 1965 the Teacher of the Deaf devoted an issue to the publication of proceedings of a conference on ‘Brain Damaged Children with special reference to deafness’. A paper by Simpson (1961) points to the problems of deaf pupils with learning difficulties in developing language using the oral approach which was dominant at that time. He pointed out that poor communication could make a deaf child seem less able than they were and the need to use some signing with some of the more disadvantaged pupils. Much emphasis at this time was placed on the measurement of intelligence and a number of studies are reported including Simpson (1962) and HMSO (1965). The general conclusion of this work was that deaf children with learning difficulties had a lower average IQ than hearing children.
A significant change applying to childhood disability in general, not just deaf children, was in 1971 when the education of children with severe learning difficulties was made the responsibility of Local Education Authorities rather than being provided in training centres which were the responsibility of Health Authorities. This shifted the emphasis from the care of this group of children being a medical provision to being an educational one.
The 1981 Education Act
The most significant development for children with disabilities came with the1981 Education Act, based on the Warnock report of 1978, which addressed the issue of the diversity of need:
‘Whether a disability or significant difficulty constitutes an educational handicap for an individual child, and if so to what extent, will depend on a variety of factors (3.5)’. The report then lists the various factors, differences in schools, differences in degree of disability, differences in impact of disabilities on a particular child (similar to those discussed above) (DES, 1979).
It proposes ‘We wish to see a more positive approach and have adopted the concept of SPECIAL EDUCATIONAL NEED, seen not in terms of a particular disability which a child may be judged to have, but in relation to everything about him, his abilities as well as his disabilities – indeed all the factors which have a bearing on his educational progress’ (3.6)
While this applied to all children and not just to those with complex needs, the implications for those with complex needs were great. It changed the emphasis so that all pupils receiving special provision were classed as pupils with special educational needs and not defined in terms of the provision they needed. This had the advantage of addressing all the needs of the child together and also potentially made the consideration of the special educational needs of pupils with complex problems more straightforward. It meant that for many children the whole range of disabilities could be taken into account.
However, despite the emphasis on recognising complex needs for some groups of deaf children, in some instances the dual terms remained, particularly for deaf blind children, as their unique needs seemed to warrant particular consideration. The terminology used now, however, is more often ‘multi-sensory impairment’. This emphasises that children are not simply deaf and blind but, in considering their special educational needs, the more complex interaction between the two disabilities needs to be considered. In the past these children were often placed in schools for the deaf or the visually impaired but, as one commentator pointed out, teachers trained to work with deaf children were trained to use a child’s vision to assist their learning while those trained to work with visually impaired children were trained to use hearing. Both of these approaches would be counterproductive in working with deaf blind children or multi-sensory impaired children. The prevalence of multi-sensory impairment has been difficult to establish. Different studies over the period 1986-1993 have varied greatly suggesting 1 in 10,000, 2 in 10,000, and 3.5 in 10,000 children (reported in Murdoch 1994).
The incidence of complex needs in deaf children
In order to assess the need for services, many studies have attempted to determine the proportion of deaf children with complex needs. However, the absence of any agreed definition has made this difficult. It is also necessary to decide the degree of hearing loss to be considered, and also whether to include conductive losses. The most widely used figure in the UK is that arrived at by the very comprehensive MRC study carried out in the Trent area and covering the period 1985-1993. This suggested that 39% of all deaf children had additional or complex needs (Fortnum et al 1996). However, the additional disabilities they included were, among others, asthma, hepatic dysfunction and eczema which some would consider to have educational implications.
McCracken has summarised various similar studies carried out in the period 1985-1996 which illustrates the possible variability.
Karchmer (1985); overall incidence 31%
Schildroth and Motto (1994); overall incidence 34%
Stredler-Brown and Yoshinago-Itano (1994); overall incidence 41%
Fortnum et al (1996); overall incidence 39%
The training of teachers working with deaf children with complex needs
There are now courses established for training Teachers of the Deaf and while some courses, e.g. Manchester, may include elements looking at deaf children with complex needs, it is not a major focus in many courses. Also in those courses which look at the teaching of children with other disabilities, very few include elements looking at the particular issues that affect children with a hearing loss in addition to another disability.
Currently, as part of the inclusion agenda, there is discussion about the need for specific courses for those teaching the whole range of pupils with special educational needs and whether such training would be more effective in focussing on need rather than the disability label given to a child. In the concluding chapter of a book of papers addressing the range of special needs covered in specialist teacher training, Lewis and Norwich conclude ‘It is interesting that there were no clear links between these different areas of special educational needs [the majority] in which contributors call for variations from dominant curriculum practices. This contracts with the two related areas of SEN, deafness and visual impairment (sensory impairments) where the chapters indicated the need for additional curriculum programmes’ (Lewis and Norwich, 2005, Gregory, 2005). Thus it seems that both deafness and visual impairment, and by inference deaf children with complex needs, are recognised as needing specialist courses to train teachers.
In terms of training teachers, multi-sensory impaired children have for some time been considered a special group. As was discussed earlier, the need for special training was the focus of campaigning by parents in the 1950s and 60s. However, it was not until late 1980s that training became available following a pilot study in 1988. A one-year course was set up at Birmingham University and in its first five years 46 teachers were trained. Such courses have implications beyond the training of particular teachers in a particular area of complex needs because they also established a forum for the discussion of the needs and abilities of such groups of children.
Cochlear implants and deaf children with complex needs
This is a pertinent issue in any consideration of deaf children with complex needs because it has raised a number of questions and been the focus of research. In the early years of paediatric cochlear implantation, deaf children with complex needs were not considered to be eligible for implantation. This was due largely to the fact that implantation took place in a medical setting where it was influenced by notions of evidence based practice. The evidence for the efficacy of implantation was mostly based on measured improvements in the ability to hear sound, particularly speech, and the development of spoken language. Most deaf children with complex needs would be unlikely to show such improvement. However, this was changed in the early part of the twenty-first century where different benefits were proposed for children with complex needs. Research showed that outcomes which might seem very small, such as improvements in participation in family life, or greater general understanding, had major and significant beneficial consequences for the life of the child and family (Waltzman et al, 2000, Hamzavi et al 2000).
This paper has illustrated that, while the number of deaf children with complex needs is small ‘the number of possible additional complex needs, the degree of deafness and the varying combinations and extent of the other needs means there is a great range of profiles of these children’.
I would like to acknowledge the contribution of Wendy McCracken in discussion of the ideas developed in this paper.