BATOD
The British Association of Teachers of the Deaf
Promoting Excellence in Deaf Education

Following Peter’s untimely death in 2009, some of the family and friends of Peter Preston sent BATOD a substantial cheque to provide funding for an award in his name. It was agreed that the Peter Preston Audiology Award would be given to an article judged by the National Executive Council, to be the best article on audiology published in the previous year’s Magazine written by a practitioner with practitioners in mind.

2011 is the first year of the award and the winning article is Jo Franklin's about testing children with complex needs in Wandsworth published in January 2010.

‘Special’ school clinics

Holding clinics for audiological testing of children with complex needs in Wandsworth has enabled many children to be assessed who might otherwise slip through the net, as Jo Franklin reveals.

Assessing the hearing of children with complex needs is, as we all know, no easy endeavour. A joint education and health audiological assessment project in Wandsworth has proved beneficial for children with hearing concerns in addition to a wide variety of complex needs. Over the past nine years that these joint clinics have been running, the range of children seen and the repertoire of tests used have been huge. The outcomes have been equally varied: we found many highly educationally significant hearing losses, we provided information vital for amplification provision or educational modifications and, equally importantly, we were able to clarify for some children that hearing loss did not form a part of their multiple disabilities. The following is offered as food for thought for others to see if a similar approach could be helpful for their pupils.

Some of the background issues in Wandsworth

  • The population is very varied, with a huge diversity of need.
  • There is an unusually large special school population (the ILEA legacy of eight special schools including a school for the deaf – Oak Lodge). Within that population there are also children with highly complex needs in specialist units within the schools (for example, PMLD at the Harris Centre at Linden Lodge).
  • There is a range of levels of parental involvement and attendance at hospital/community clinics. The main audiology department serving the area at St George’s Hospital has the usual frustratingly high rate of non-attendance at appointments, often due to totally understandable parental pressures. This is particularly an issue for children with complex needs as the multiple hospital appointments (requiring time off work and school) take their toll in disruption and additional stress for parent and child.
  • The high level of families with English as an additional language and refugee families also has an impact on attendance levels in hospital settings.
  • Demands on resources for St George’s Healthcare Trust are high and more effective assessment for children with complex needs is beneficial.
  • Most importantly, for children with complex needs an unfamiliar environment (place and people) is unlikely to ensure reliable audiological test results.

The ‘special’ school clinics – the commitment

  • Audiology clinics are offered to the special school population at a level that is felt to be appropriate; up to once a term to the schools for the visually impaired/multiply disabled visually impaired, physically disabled and those with moderate and severe learning difficulties. Visits are offered but not always taken up at this level. For example, at the school for the physically disabled the initial task was to work through the very long inherited list of children with unsatisfactory audiological investigations. The list got shorter and more focused which in turn meant that on occasions there was not a viable ‘group’ to be seen so one term’s clinic might be ‘missed’ but the commitment stood to offer a visit the following term.
  • A paediatric audiologist and audiological technician bring an array of testing equipment and work with a specialist ToD and through school staff. The school needs to provide as quiet a room as possible for the testing. This is often the most difficult aspect of the clinic. Special schools are usually noisy places but we have to be pragmatic, always balancing whether the results are scientifically ‘valid’ if they are not from a sound-proofed room versus whether they are more representative because they are from the child’s familiar surroundings.
  • Staff/therapists/parents can suggest children about whom they have concerns – but after that the ToD prepares the ground. This involves talking to staff and possibly observing children highlighted by staff. Also there is liaison with school health and parents to establish if the child has been thoroughly and appropriately clinically assessed previously, in which case he or she would not be seen.
  • Children are chosen who have had a history of hearing problems or ambiguous test results, who have not had suitable hearing tests previously (difficulties with distraction testing of VI children often come to light for example), who are new to the country or who may have developed further since previous inconclusive results – so that the team feels there is now a realistic chance of adding to knowledge about the child’s hearing. In many of these cases with children with such myriad needs, parents may be unlikely to invest the time and energy involved in a referral through community or the hospital for something that they may not consider a major priority and these are children who are likely candidates to not turn up for clinic.
  • There is a lot of preparation work before and between assessments – collecting evidence and observations from home and school and liaising afterwards to inform all concerned of the findings – but also in preparing children, for example desensitising a child to headphones or working on conditioning with the child/teacher/family.

What makes a difference with this type of assessment?

  • A highly skilled team – an experienced paediatric audiologist and audiological technician and a specialist ToD (and the child’s familiar adults – LSA/teacher/parent as dictated by the child’s needs).
  • The ability to compromise – we need to be led by these children’s needs – not the other way round. That does require a practical approach – and sometimes a compromise – but some of these children have never produced any repeatable results in other settings. We have a huge array of ‘travelling’ equipment for doing whatever assessment a child seems ready for at ‘that’ moment. We also adapt where necessary and where it will not affect the validity of the findings.
  • Multiple assessments may be necessary to build a picture of otherwise very ‘difficult to test’ children; they may need a ‘little and often’ approach.
  • Really good multi-agency working, with all parts of the whole making something better than the sum of its parts!
  • Vitally – the team is determined to ‘make it work’.

A selection of illustrative case studies (there are many more!)

SB was an eight-year-old boy with severe cerebral palsy whom many experienced staff members had also assumed had significant learning difficulties. His new LSA, however, felt that ‘something was not quite right’ and asked us to see him. On investigation his early assessments had been inconclusive and at the time his mother was offered auditory brainstem response (ABR) under sedation for him which she declined, feeling that this was unnecessary when he had ‘so much else wrong’ (and because she felt that there was ‘nothing wrong with his hearing’). At each assessment throughout his school career until we saw him this was her answer and what remained on his records. He was assessed in the school clinic where we found him to have a bilateral profound loss (confirmed in hospital with ABR). He was in fact a very physically disabled but cognitively very able boy who had relied on his vision and his abilities to reach the age of eight undiagnosed. XG had syndrome-related difficulties but there was no evidence that he had ever been fully audiologically assessed – his parents would not have taken him to a clinic. At the first visit he only responded to a very limited amount of stimuli at very highly raised dB levels before he stopped responding altogether. A programme of active listening sessions was instigated in his class (an activity designed to help him learn how to concentrate his listening skills in a quiet, structured session). At the next school clinic it was possible to get reliable, repeatable responses to low and mid frequencies at minimal levels. At the next visit we got similarly reliable responses to high frequencies and he was felt to have ‘hearing within normal limits’. He would never tolerate tympanometry or otoacoustic emissions (OAEs).

MW was a blind boy who was referred to the team by his mobility officer at school as she felt that his pattern of movement was unusual. He used sound as he had been trained to do – he walked towards it – but consistently veered to one side. His mother felt that there was no problem with his hearing and did not want him referred to the hospital. It was felt that he would be difficult to condition so the ToD worked with him and his LSA before the next clinic on conditioning games. At the clinic visit he was able to wear headphones and proved to have a profound unilateral loss. His mother was able to be in school and started receiving support immediately (as did his school staff) from the ToD about the implication of this loss for a totally blind child who requires binaural hearing for location.

HM was a visually impaired young lady who had gone through most of her school career with ‘hearing? ...uncertain’ in her notes after an early ABR and observational assessment had suggested ‘a mild to moderate loss in the mid–low frequencies and a severe loss in the higher frequencies’. She definitely would not tolerate either tympanometry or OAEs but by allowing her rather idiosyncratic responses (she reliably said ‘No, I didn’t hear that’ to each sound) she was able to pass a sweep test. Without people who knew her well and a familiar, happy environment we would have been unlikely to get this result. Her parents did not want to re-refer her as they felt it was ‘just H – being H’. With this potential additional sensory difficulty taken out of the equation, however, her family made decisions about her next placement with a far clearer level of understanding of the degree of her learning difficulty.

JS was a little girl with considerable medical difficulties, including a tracheotomy and such noisy breathing that OAEs were impossible. Her general level of congestion made her vulnerable and people felt that she did not listen and so questioned her hearing. Due to the high number of invasive procedures that she had experienced she had quite a phobic reaction to anything that seemed ‘medical’. On our first visit she would not co-operate at all and so at subsequent visits over a period of 18 months she just came to the room and got to know us, and the ToD went into her class and became known to her. After this time we were able to do a toy test at minimal levels and a year later she passed pure tone audiograms. She had also had valuable work on concentrated ‘listening’ done with her.

There are very many more cases that could have been quoted from the numerous children we have seen. In many of these situations, even if there was a mechanism for referral of concerns, they would not have reached a conclusion; in so many cases the parents would not have followed this up if they had had to go to the community clinic, because they did not feel there was a problem or if there was that there were so many other problems that were ‘more pressing’.

Important audiological issues

  • Knowing what the ‘gold standard’ is and aspiring to it are vital aspects – within the constrictions placed on it by the child’s disabilities and the less than ‘clinical’ conditions, for example background noise.
  • We are very mindful of the audiological difficulties of working in surroundings which are not soundproofed and with changes of equipment. Moving all the possible equipment is a labour of love, but having the consultant audiologist, whose role it is to ensure that any adaptations that we make to accommodate the child do not interfere with the audiological validity of the findings, is paramount.

    Our findings have to remain as scientifically sound as possible. So often children with complex needs are wrongly labelled – or when it comes to audiological findings, barely ‘labelled’ at all – with vague terms like ‘hearing unknown’ or ‘could not be tested’ remaining part of their profile for years. We have found that some ‘difficult to test’ children are just that! We provided all the possible equipment and expertise that we could to this group and it still required several visits to some children for us to feel that we had a clear understanding of their needs. The gathering of this information, the impact of its dissemination and the importance that it has had in the education of these many children has, however, certainly repaid our efforts.

Further reading

The BATOD publication Guidelines for hearing assessment of children with complex needs (1997) is the foundation on which we build our adaptations to suit the individual children’s needs (this is out of print but forms part of the collection of Audiology Refreshers to be found on the BATOD website). For more details contact Jo Franklin

Jo Franklin is the specialist in deafblindness on the Wandsworth Hearing-Impaired Team. She would like to thank the St George’s Healthcare Trust staff (such as Sue Ives) who move so much equipment around with such good grace and in particular Dr Sarita Fonseca for her time and effort on this project.

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