Gottfried Diller
addresses questions which occur when additional difficulties or disabilities – e.g. additional sensory impairments or syndromes – have to be taken into account during the intervention.
Introduction
If a baby or toddler is diagnosed with severe hearing impairment, for example, they are both generally labelled and generally viewed as disabled (here, specifically, as hearing-disabled). A blind child, a Down’s Syndrome child or a child with physical malformations will also be regarded as being disabled. Most of us know of cases, however, in which one cannot be sure whether the child is disabled or not. Take, for example, a child who is lagging well behind at school: are they simply ‘lazy’ or might they actually be learning-disabled? Or a child who, even at the age of three, still does not say a word: is this a phase they will grow out of, or do they have a developmental disorder? Or a child that exhibits extremely aggressive behaviour while playing: do they act like this only because these are behaviour patterns learned at home, or is there an underlying psychological disability?
These examples show that the term ‘disability’ cannot be used with precision. Rather, it can cloud the issue and may on occasion incorrectly label traits and behavioural patterns as ‘not normal’.
In special education, therefore, this term is used with caution. For some time now, many different academics have been continually endeavouring to conceptually pin down, in new ways, what is meant – and what is NOT meant – by ‘disability’. One of the reasons why this debate has not produced an outcome which is acceptable to all is that there are some considerable differences in the basic underlying assumptions held – with regard to the theoretical understanding of the academics involved and the view of humanity and model of society they adhere to. One thing has, however, already clearly emerged in the course of this discussion: namely, the fact that there is no longer a consensus that the origin of disability lies solely within the disabled person themselves; indeed, this view is no longer acceptable. Focusing on the ‘deficiency’ angle in this way simply ignores the reality that there is also a second aspect necessarily involved in the manifestation of the disability, namely the social environment of the disabled individual. This is why modern definitions of disability have a different ring about them, as exemplified by that drawn up by Alfred Sanders: “Disability is present when a person with an impairment or reduced capability is insufficiently integrated into their multi-facted human-environment system” (Translator’s translation of quoted passage) (H. Eberwein, S. Knauer: Handbuch der Integrationspädagogik, Beltz 2002). Here, disability is defined not only in terms of the impairment or diminished capability of a given individual, but also the inability of those in this person’s social environment to integrate him or her.
The definition of disability that one embraces also, of course, has important implications for how one engages with what are termed multiple disabilities (these being the main theme of this Module). As can perhaps be imagined, this technical term is also subject to fundamentally different interpretations and, in turn, equally diverse classifications, ultimately leading to differing criteria for diagnostic determination and different types of intervention solutions in special education. This need, not, however, necessarily be seen as a bad thing, as the plurality of approaches and schools of thought fuels continuing professional discourse and thus ongoing development in both theory and practice.
By way of closing these introductory remarks, readers are reminded that the focus in this Module is on multiple disability where hearing impairment is present. Of course, these different kinds of disability need not occur concurently: a hearing impairment may occur in isolation or, conversely, a child may have multiple disability without having a hearing impairment. Take, for example, a child with cerebral palsy who has an additional visual impairment or a child with a physical disability in the form of a cerebral movement disorder who (as is often the case) has an additional language or learning disability. The different forms and phenomena that are inherent to all these types of multiple disability are dealt with by the individual specialist disciplines within special education. Of course, especially in cases of multiple disability, it is essential to take an interdisciplinary view and (when it comes to the practical work itself) to collaborate. And yet, as will be shown, the main focus will differ depending on the situation.
Here, the emphasis is on the specialist discipline of ‘education for the hearing impaired’ and on the problems facing hearing-impaired children with at least one additional disability.
Chapter 1: Impairment, functional disorders and their impact on participation in life and society
Chief learning goals: the reader should…
know how isolated impairment differs from multiple impairment;
understand what is meant by isolated and multiple functional disorders;
appreciate what is meant by a disability/multiple disability.
.
The number of children with multiple disabilities is rising, which is partly attributable to medical advances that boost the prospects of survival for many of them. It can be assumed that some 30 % of all hearing-impaired children have an additional impairment. These children are described as having multiple disabilities.
Studies show that around 20 % of all hearing-impaired children of preschool age have additional disabilities or difficulties (Diller et al. 1997: 21.4 %, Hartmann 1974: 22.4 %, Meadow-Orlans et al 1995: 20 %). The risk, therefore, that hearing-impaired children will have developmental and learning problems on top of their hearing impairment is considerably higher than for hearing children. We can assume that around one-quarter of all children with hearing impairment are affected (Hintermair 2003, Rowell 1987, Funderberg 1982). For school-age children, the figures are 30 % and above (Meadow-Orlans et al. 1995: 30 %, Meadow-Orlans et al. 1997: 32 %, Schwope 1995: 29.9 %). “The reason given for these differences is that many children are, at an early age, not yet recognized as being additionally ‘impaired’ , that is to say, often clear-cut diagnoses cannot be made (or there is a reluctance to make them)” (Hintermair 2003, 271) [Translator’s translation of quoted passage].
Nowadays hearing disorders can be diagnosed even in the very first days after birth (==> newborn hearing screening, Module 1).
Subsequent to diagnosis, then, early childhood intervention can begin in the very first weeks of life. This provides an opportunity to pay attention not only to hearing and language development but also to monitor the extent to which all of the child’s other abilities are developing appropriate to its age. This gives us the chance to detect in good time any ‘potential risks’ of additional disabilities or difficulties and, perhaps, to prevent them or limit their impact.
When the term ‘multiple disability’ is used, there is often considerable confusion as to what is meant by this, about the interrelationships between the individual disabilities present, and the impact on the lives of sufferers. Before going any further, the relevant terms will therefore be briefly defined and explained, as disability is a generic term that can be classified in terms of impairment, functional disorders, and their impact.
Impairment (illustrated by reference to hearing impairment)
Isolated impairment: A hearing impairment is present if there is, medically speaking, a physical defect of the outer ear, middle ear, inner ear and/or the central auditory system.
Hearing defects may be either congenital or acquired. Congenital hearing loss is either dominant or recessive in origin. For a dominant hereditary trait to be passed on, only one parent needs to have the relevant gene; for a recessive trait to be handed down, both parents must have the gene concerned.
Acquired hearing loss can be caused by (among other things) premature birth, meningitis, rubella, serious infections, oxygen deprivation, toxic damage or (accidental) medication overdoses. Often several disabilities can have the same origin; for example, oxygen deprivation may simultaneously affect cognitive and motor development as well as hearing ability.
Hearing defects can arise during and after birth, or may develop progressively later in life – as, for example, when there is increasing deterioration in hearing ability. Degeneration in hearing may be genetic in origin, or alternatively caused by illness or the aging process.
Today, medicine has means at its disposal for treating (up to a certain extent) hearing disorders through medicinal, technical or surgical intervention – by fitting assistive hearing devices such as hearing aids and cochlear implants (CIs), for example.
Multiple impairment: If several impairments of a physical and neurophysiological nature are present at the same time, we speak of multiple impairment; this is the case when, for example, hearing impairment is accompanied by another physical impairment and/or an impairment affecting the brain or central nervous system.
There are a number of syndromes and genetic disorders that are associated not only with a hearing impairment but other impairments as well – affecting such things as vision or physical and mental development. Multiple impairments may be present from birth onwards or result from an unfortunate cumulative effect (‘secondary impairment’), as for example when a deaf person suffers additional physical or visual impairment through illness.
Functional disorders
Isolated functional disorders: Functional disorders may develop as a result of an impairment; in other words, the part of the body in question (in our case the ear) is not able to perform its function (in our case hearing) fully – or indeed at all. These auditory functions include:
the perception of sounds, noises and speech, and their pitch, loudness and quality;
directional hearing (i.e. the ability to detect where a sound or noise is coming from);
the perception of prosodic elements (e.g. intonation, rhythm, stress and sound) in spoken language;
the ability to distinguish between sounds or noises and speech;
the ability to discern whether two sounds are the same or different;
identifying sound events, including recognizing the meaning of a noise that is heard (for example, the child hears something and recognizes that it is their mother’s voice, the ringing of a telephone, etc., without having a comparative frame of reference available); and
the comprehension of spoken language (e.g. knowing what another person has said). The child understands the meaning of what they hear.
Functional disorders as the manifestation of multiple impairment: We speak of multiple impairment when, in addition to an impairment (such as hearing impairment) that can have specific effects, one or more other impairments are also present that can, in their own right, also affect the child’s development.
Functional disorders may occur as a result of an impairment (‘multiple primary defect’); for example, a motor disorder of cerebral origin can affect a function somewhere in the body but often, at the same time, also bring about a functional disorder in language development, language use or learning. These are obligate consequences, i.e. disorders that are unpreventable and may result from a multiple primary impairment. It is, however, also possible that several individual impairments may occur concurrently, which can – not only depending on the individual disorder but also as the outcome of the interrelationships within the whole – give rise to complex functional disorders.
If a person has not only a hearing disorder but additional impairments as well, other functional problems may emerge that can be attributable to many different kinds of impairment. These factors do not act in isolation, with a purely additive effect – rather, in their entirety, they have a synergistic influence on the development of the individual functions.
Multiple functional disorders constituting multiple disability: Rehabilitative education deals with the effects of an impairment, i.e. the resulting functional disorders. The term ‘multiple disability’ is used differently in different contexts. For example, in pedagogical theory it refers to a complex interwoven whole of interrelationships: a structure and not the sum of various disabilities. The pragmatic definition of the term, however, relates to the need for rehabilitative assistance that goes above and beyond what is required for a particular type of disability.
It is possible to speak of ‘multiple disability’ when, for example, hearing impairment is accompanied by a mental disability, other sensory damage, physical disabilities (especially cerebral palsy and movement-related problems), speech disorders of cerebral origin, neurogenic learning disorders, perceptual disorders and/or attention-deficit hyperactivity disorder (ADHD).
If one speaks of multiple disabilities (or multiple disability), as opposed to additional disabilities, this indicates that not only does each individual disability have its own impact but that, acting in concert, all disabilities present in the child affect his or her development. For example, hearing impairment and blindness have their own specific effects. If the child is unable to see, this leads to restrictions in (say) mobility, whereas normal language acquisition may be perfectly possible. Not being able to hear usually entails difficulties with acquiring language. If both occur together, then both mobility and language acquisition are affected. No mutual compensation can take place; indeed, where both types of disability occur in combination, additional problems may arise.
Depending on the number and degree of severity of the individual impairments, disabilities (ranging from mild to complex) may develop that can considerably affect the child’s development.
If multiple impairments are present that affect almost all aspects of life and development, the term ‘multifunctional disorders’ is used. From the pedagogical standpoint, these are children with multiple (or even severe multiple) disabilities.
Functional disorders need not necessarily occur: If medical, technical, therapeutic or pedagogical and psychological intervention is able to lessen the impact of an impairment, then fewer functional disorders will be evident.
In the case of hearing impairment, this can be understood as follows: we are nowadays in a position to enable the hearing-impaired child to develop their hearing ability by means of technical aids. If we do not do this the child will find it much more difficult, for example, to acquire spoken language. A speech or language disorder will then result as a secondary disability. To a large extent, however, this can be prevented.
Impairment and additional difficulties: We speak of ‘additional difficulties’ when their origin cannot be attributed to an organic disorder, as for example in problems relating to child-rearing and behaviour, learning, concentration, memory and perception. Often it is external influences that may impede – or even sometimes prevent – certain aspects of developments from taking place. Having a child with a hearing disability is a far from easy situation for many families. It can lead to problems in parent-child communication that may have an impact on the child’s psychosocial development. Here, too, intervening at an early stage may prove beneficial.
“It can be assumed that the learning and developmental problems in hearing-impaired children greatly exceed those of their hearing peers.” (Hintermair 2004, 12ff) [Translator’s translation of quoted passage]. This kind of disability need not be caused by organic malfunction. It may arise, but it does not have to. What is pedagogically important is that not all signs of developmental delay will necessarily manifest themselves; it is possible to prevent the negative effects of these delays.
The impact of impairment and functional disorders on participation in life and society
A large number of impairments and the multiple functional disorders associated with them may affect the development of a hearing-impaired child, and thus their ability to fully take part in life and society. It is only when this participation is affected – i.e. when the effects come into play and the disorder has a detrimental impact on life – that disability in its strictest sense arises.
“People whose are hampered in going about their everyday lives or in their participation in life and society owing to impairment in physical, mental/psychological and intellectual functioning, are classified as being disabled.” (Bleidick, 1992) [Translator’s translation of quoted passage].
Disorders of hearing function may have different impacts, not only on the typical, directly ‘hearing-related’ aspects but also on those that are not directly associated with hearing. The ‘hearing-related aspects’ include:
listening (including imitating and copying what the person hears);
understanding what is heard;
the development of language and speech;
hearing in one-to-one and group conversation with known and unknown people;
hearing in noise (in a loud environment, when many people are talking at once, etc.); and
the use of audio-visual media.
The aspects that are not directly related to hearing include:
motor skills;
psychosocial aspects;
emotionality; and
cognitive abilities.
All of these skills play a part in determining these children’s future prospects – in the family and in their wider social world, at school and nursery, at work, and in society in general.
Review questions
1) We speak of isolated hearing impairment when …
a) the hearing impairment affects only one ear;
b) there is, medically speaking, a physical defect of the outer ear, middle ear, inner ear
and/or the central auditory system;
c) the hearing impairment can be isolated from other defects;
d) other impairments are also present, but these do not occur in conjunction with the hearing impairment.
2) Multiple impairment is said to be present if …
a) a person is socially ostracized because of their hearing impairment;
b) binaural hearing impairment is diagnosed;
c) other impairments are present in addition to hearing impairment;
d) the parents and/or siblings are also hearing impaired.
3) Examples of isolated functional disorder resulting from damage to the ear could include:
a) perforation of the eardrum;
b) problems with directional hearing;
c) a highly stressful family situation;
d) underperformance in important subjects at school.
4) What is the meaning of the term ‘multifunctional disorder’?
a) Hearing impairment can have many possible causes;
b) Owing to multiple impairment, almost all aspects of life and development are
affected;
c) Several ear-related functions are damaged;
d) These children can no longer be helped by therapeutic means.
5) When do we speak of ‘disability’?
a) When several disorders occur in combination;
b) Only when physical or sensory handicap is present;
c) When the impact of an impairment makes it more difficult to participate in life and
society;
d) Disability is a purely medical notion.
6) What impacts can hearing impairment have?
a) Some impacts are directly related to hearing, and others only indirectly.
b) Hearing impairment itself has no impact; it is only social circumstances that lead to
negative consequences;
c) The adverse effect of hearing impairment can be fully eliminated by technical
intervention;
d) Hearing-impaired people are completely isolated from society.
Chapter 2: The role of auditory rehabilitation
Chief learning goals: the reader should…
know the prerequisites for successful rehabilitation;
be able to explain the most important factors in auditory rehabilitation of children with multiple disabilities;
understand why it is important to use professionally prepared development profiles.
The role of auditory rehabilitation is to positively influence the effects of a hearing disorder on hearing function through models of intervention and therapy. This can substantially counteract the negative impact of the disorder and thus the extent of the disability, assuming that:
hearing impairments are diagnosed as early as possible;
the child is fitted with assistive hearing devices immediately after the diagnosis;
multiple impairments or disabilities are detected; and
developmental delays are picked up on.
The consequences that may be associated with a hearing impairment depend on the time of the diagnosis, the extent of the impairment, and medical and technical intervention: its scope, nature and time of onset.
Each type of disability entails different priorities in intervention. If the child has additional disabilities as well as hearing impairment, these must of course be taken account of in the intervention strategy, for example through cooperation with other specialist disciplines.
In the case of hearing impairment, the main focus is defined in the context of the child’s overall development. Hearing, as a fundamental perceptual skill, influences not only the child’s linguistic and communicative ability but also their motor, socio-emotional and cognitive development.
Hearing has an impact on a child’s learning, concentration, memory and behaviour. Work on improving their hearing will help a child to achieve age-appropriate development.
As the impact of impairment is not ‘fixed’ from the start, it is important to carefully monitor progress in the various aspects of development and, as far as possible, to record this objectively.
The intervention strategy for a hearing-impaired child immediately post-diagnosis – which it will, in the future, be possible to embark upon with children only a few months old – must incorporate whether additional disabilities are known or become evident at this time.
But what exactly is to be done? It is not only the parents of a disabled child who are initially not at all sure about the best course of action. Family and friends, childminders and teachers in mainstream nursery schools may well share this uncertainty.
Of course, specialist professional expertise will first need to be sought. Information and ideas about the kinds of support available for particular disabilities are one aspect: what should I pay particular attention to; how can I help the child to develop their all-round abilities? How much assistance is needed by the parents, childminders, nursery school teachers and the disabled child themselves? What stage of development is the child at? (This last question is especially important). The answers I find will help boost my confidence in relating to the child, or they may prompt me to be more aware of developments that I may not have seen or registered. In obtaining this information, one’s own observations are highly valuable. In addition, however, a more objective approach to monitoring should also be taken, which may include the use of development profiles; these may be particularly helpful if the child has several disabilities. Such profiles should be based on knowledge of the milestones in childhood development, which are outlined elsewhere in this course (=> Module 8).
Review questions
1) Why are early diagnosis and technical intervention important with regard to hearing impairment?
a) So that the impairment does not deteriorate;
b) So that the existing rehabilitation centres and hearing-aid manufacturers can operate
at full capacity;
c) So that the therapists can guide the parents to act as co-therapists from an early stage;
d) So that one can, in intervention and therapy work, effectively compensate for the
negative impact.
2) Children with multiple disabilities are dealt with in exactly the same way as those with only hearing impairment.
a) This statement is completely true;
b) This is true, but other technical and science professionals need to be consulted as
well;
c) If the child has other disabilities in addition to hearing impairment, these must be
taken account of – by, for example, working together with other specialist disciplines;
d) Children with multiple disabilities require completely different intervention than
those with only hearing impairment.
3) What benefits do development profiles have to offer?
a) They enable subjective impressions of the child’s development to be recorded;
b) They make it easier to detect hearing impairment;
c) They relate to the milestones in child development and thus provide more objective
measures;
d) They do not provide any benefits, offering merely a notional ‘norm’ for comparison
with a given child’s actual individual development.
References
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