KidsAudiologist

Archive for the ‘special educational needs’ Category

Updated February 2019

Resources to support Improving participation of children and young people in audiology:

Guidelines for research with children and young people (National Children’s Bureau, 2011)

Listening to children’s views on health provision – a rapid review of the evidence (National Children’s Bureau, 2012)

The Participation Toolkit (Scottish Health Council, 2010)

Association for Young People’s Health

A literature review on the participation of disabled children and young people in decision making (VIPER project, 2014)

Getting services right for adolescents (Health Service Journal, March 2010)

Not Just a Phase; A Guide to the Participation of Children and Young People in Health Services (Royal College of Paediatrics and Child Health, 2010)

‘You’re Welcome’: quality criteria for young people friendly health services (Department of Health, 2011)

Understanding what matters A guide to using patient feedback to transform services (Department of Health, 2009)

Quality of Life of Deaf and Hard-of-Hearing Children and Youth (Project HQL) (University of Washington & partners, 2010)

Over to you report (NDCS, 2011) Over to you was a one-year project which looked at the experiences of deaf young people of their audiology service. This project was completed jointly by NDCS, in partnership with the audiology services based in the London boroughs of Newham, Tower Hamlets and City & Hackney. From April 2010 to January 2011 we met with 100 deaf young people aged 12 to 18. ”

Audiology; What young people think (NDCS, 2011) A leaflet written for young people about the results of the Over to you project

Going to the audiologist; Deaf young people have their say (NDCS, 2014) Between April and August 2014, NDCS asked deaf children and young people aged 12–18 to tell us about their experiences of going to the audiologist

This article was originally written for the Netbuddy website which has since merged with Scope where an edited version appears. I have re-published it here for Learning Disability Week 2015.

https://www.mencap.org.uk/get-involved/learning-disability-week

Research suggests that as many as 40% of adults with a learning disability have a hearing loss although for some groups this figure can be much higher. For example, hearing loss affects up to 75% of young people with Down syndrome.

Hearing problems may be unrecognised or undiagnosed because behaviours associated with hearing loss may have been thought of as being part of the learning disability, or because local audiology services are not accessible to them.

Unrecognised and unmanaged hearing loss can cause or contribute to speech or language delays, difficulties learning and reading, and cause difficulties communicating with others. Hearing loss can therefore have a significant impact and exacerbate the effects of an individuals learning disability.

Some people are born with a hearing loss but for many people it develops later in childhood or as an adult.

Types and levels of hearing loss

Conductive hearing loss happens when sound cannot pass efficiently through the outer and middle ear to the cochlea and auditory (hearing) nerve. Conductive hearing loss is most common in childhood and is usually caused by ‘Glue ear’ (Otitis media). Glue ear is a build up of fluid in the middle ear that makes it harder for sound to pass through to the inner ear. Glue ear causes the hearing to fluctuate and often clears up on its own without needing any treatment. However, for some children with learning disabilities glue ear may persist longer term.

Sensori-neural (or nerve) hearing loss happens when there is a fault in the inner ear (most often because the hair cells in the cochlea are not working properly) or auditory (hearing) nerve. Sensori-neural deafness is permanent. Sensori-neural deafness is most common in adulthood and is usually caused by normal wear and tear of the ear and the ageing process. In some individuals with learning disabilities this ageing may happen much earlier than would be expected in the general population.

It is also possible to have a sensori-neural and conductive hearing loss together and this is known as mixed hearing loss.

There are different levels of hearing loss that are measured in decibels (dB) and described as mild (21-40 dB), moderate (41-70 dB), severe (71-95 dB) or profound (95+ dB).

Balance

As well as hearing our ears also help us to balance. The brain uses information from the eyes (what we see), our body (what we feel) and the inner ear to balance. The semicircular canals in the inner ear are three tubes, filled with liquid and movement-sensitive hair cells. As we move, the fluid moves. This creates signals that are sent to the brain about balance.

Balance problems can occur when the organ of balance in the inner ear does not work properly (vestibular hypofunction). Children can be born with this or acquire it with illness or trauma. With hypofunction development of balance function may be delayed and this might mean that babies and young children take longer to reach developmental milestones such as sitting unsupported and walking. Older children may have difficulties with certain activities such as learning to ride a bike. This is called imbalance.

Other types of balance problem can give rise to dizziness or vertigo or episodes of unsteadiness. These can occur at any time in childhood.

Possible indicators of a hearing loss

The list below contain behaviours that can indicate a problem with the ears or a hearing loss. It is also possible that they could be explained by a persons learning disability but it is worth asking for a hearing test to rule out any hearing difficulties particularly if it is noticed for the first time or it is a change from their normal behaviour:

  •  Does not respond when called by name
  • Does not respond to verbal instructions or needs visual clues
  • Watches faces intently
  • Appears to hear some voices better than others (e.g. low or high pitched)
  • Has difficulty following a conversation in a group (e.g. when there is a change in topic of conversation)
  • Struggles to hear conversation in the presence of background noise
  • Sits very close to the television or turns the volume up loud
  • Is upset by loud noises
  • Is startled by people approaching from behind who they haven’t seen/heard
  • Speaks very quietly or loudly, or vocalises very loudly
  • Breathes through their mouth and has a ‘blocked nose’ most of the time
  • Has discharging ears and/or ears have an unpleasant smell
  • Frequently rub or poke the ears
  • Problems with balance

What can be done to help?

Ask your GP for a referral to an audiology service. For children you should be referred to your local paediatric audiology service. For adults ask your GP to refer you to an audiology service that runs special clinics for adults with learning disability. Hearing tests can be carried out from birth on children and adults with all developmental abilities.

The audiologist will work with the individual, family, carers, key worker and support workers to find the most appropriate hearing tests and best way to get hearing test results. Sometimes this can mean undergoing a series of appointments. It may be necessary for some individuals to get used the audiologist, department and procedures very gradually, including getting used to having their ears touched etc. The audiologist will discuss with the individual, family and carers an Individual Management Plan for assessing the hearing and managing any hearing loss that is identified.

There is a wide range of equipment that can be helpful including:

  • Hearing aids
  • Radio aids or soundfield systems (specialist listening equipment mostly used in schools)
  • Assistive listening devices that can be used with or without hearing aids, such as amplified headphones, amplified telephones, flashing and/or vibrating doorbells, alarm clocks and fire alarms

People with learning disabilities communicate in lots of different ways including speech, makaton or other sign language, communication systems using pictures and symbols or a combination of these. Additionally it can be helpful just to know that an individual has hearing difficulty as this means that parents, carers, teachers, family and friends can make simple adjustments that make hearing and listening as easy as possible. Here are some communication tips that will help:

  •  Make sure you have the person’s attention before you start to talk to them.
  • Make sure you are facing the person you are talking with and maintain good eye contact.
  • Try to be get down to the same level as children, or adults who use wheelchairs, and allow some space for them to see you clearly.
  • Use a well-lit room and don’t have your back to a window, as this creates a shadow and makes it difficult to read facial expressions or to lipread.
  • If you are naturally a fast talker you may need to slow down a bit, but try to speak clearly, naturally and at a normal pace. Don’t shout as it distorts lip patterns and facial expressions, and can appear as if you are angry.
  • Try to make sure that background noise is kept as low as possible. A room that is carpeted or that has curtains will help cut down the effects of noise in a room.
  • Don’t be afraid to use gestures and facial expressions to support what you say.
  • While speaking don’t smoke, eat or block the view of your face. Keep beards or moustaches trimmed and also remember that glasses and sunglasses can make it difficult to maintain eye contact.
  • When in a group, speak one at a time and indicate when a different person starts speaking.
  • Make sure you make it clear when there is a new topic of conversation.
  • Some words or signs may not be easily understood or may not be in the vocabulary of the listener. Try a different word or sign with the same meaning.
  • Always give plenty of time for the person to respond to anything you say.
  • Pause between sentences and check the listener has understood you, and that you have understood them. Encourage them to stop you if they don’t understand what you are saying.

Further information and advice

For further information on any aspect of hearing loss, equipment, or accessing audiology and hearing tests contact:

 

For children – National Deaf Children’s Society (NDCS)

Freephone Helpline 0808 800 8880 (Monday to Thursday 9.30am-9.30pm and Friday 9.30am-5pm)

Or email helpline@ndcs.org.uk

 

For adults – Action on Hearing Loss (formally the RNID)

Information Line 0808 808 0123 (Monday to Friday 9.00am-5.00pm)

Or email informationline@hearingloss.org.uk

 

Scope have an active online forum to ask questions and get support from other families, including a ‘Community Advisor’ section where professionals will reply to your queries. Catch me here if I can help.

 

Useful Resources

Hearing and Learning Disabilities (HALD)

HALD is a special interest group for professionals who work in ENT and audiology services. Their website contains example information leaflets developed for adults with learning disabilities about audiology appointments, including easy read language as well as photos and symbols including:

  • using and looking after hearing aids
  • ear infections
  • wax
  • how people can help

 

Foundation for People with Learning Disabilities

The Foundation for People with Learning Disabilities has published Good health care for all: What can I expect from the NHS? that provides practical hints and tips for people with learning disabilities, family carers and anyone who supports a person with learning disabilities on how to go about using the NHS, what to expect, real life examples of challenges and how they can be overcome as well as some advice about how to get help and some useful contacts to get more information.

 

General Medical Council’s Learning Disabilities website

The General Medical Council (GMC) has launched a new website which aims to help doctors provide better care for people with learning disabilities by:

  • identifying the issues
  • highlighting patient perspectives
  • showing how to put GMC guidance into practice.

The website expands on the guidance in Good Medical Practice and Consent and demonstrates how it applies to practices when treating patients with learning disabilities.

 

 

 

Atresia or microtia is the absence or underdevelopment of the outer ear and is frequently associated with other craniofacial conditions that may impact on all aspects of their lives. It is essential that these patients and their families have access to specialised microtia teams able to provide up to date and unbiased information. A multidisciplinary approach should be taken to provide holistic, individualised assessments and interventions. This should encompass cosmetic, audiological and psychological aspects of their care. Close liaison between local services and the ear reconstruction team is a key component to achieving the best outcomes for these patients. There is a recognised need for agreed care standards for these patients, and this document aims to reflect a consensual view of how this care can be provided in an integrated fashion.

I was pleased to be involved in their development for NDCS along with other patient, parent and carer groups, working together with a passionate group of professionals who work with children and adults born with atresia or microtia.

Download UK Care Standards for the Management of Patients with Microtia and Atresia (Edited by: Henderson, R., Moffat, C., Stewart, K., and Clapperton, K.) March 2015

For further information about microtia and atresia you can also order or download a free booklet on atresia and microtia written for families from NDCS here, contact Microtia UK or join the Microtia Mingle Facebook Group.

 

One in 10 children who survive meningitis are deafened as a result of the illness. Great strides have been made in vaccination for some types of meningitis including the vaccination for Hib (Haemophilus influenzae type b) which was the biggest cause of meningitis in children under the age of 5 years and a major cause of deafness. The Hib vaccine was introduced in 1992 into the childhood vaccination schedule. However, even after this, hearing problems remain one of the most common after effects of bacterial meningitis.  Other forms of meningitis which are not vaccine preventable, and which pose a significant risk of hearing loss, are group B streptococcal and E coli meningitis, which together account for most cases of meningitis in newborn babies (neonatal meningitis). This means that health professionals working in paediatrics must remain vigilant and refer all babies and children who have had meningitis to audiology for hearing tests, and audiologists must continue to educate their local teams about the risks.

In November 2009 I spoke at the ‘After Meningitis Conference’ in London hosted by the Meningitis Trust on the ‘Impact and Challenges of Hearing Loss Following Meningitis’. I have uploaded the slides below for those that are interested in the facts and figures, and listed the references below.

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Resources, references & further information

Good toy hearing aids and cochlear implants are hard to come by but some parents have ordered the Build-A-Bear soft hearing aid from the USA. In what has to be the best example of ‘if you don’t ask, you don’t get’ that I’ve seen in a while it’s wonderful to see that Build-A-Bear in the UK are now stocking soft hearing aids for their toys. Sarah Smith, who is the mother of a deaf child and active contributor in the Pimp my hearing aids / cochlear implants UK Facebook group, tweeted the CEB of Build-A-Bear in the USA and as you can see the result was positive and speedy.

So far they have no plans to make a cochlear implant for their teddies so who is going to begin the asking? If you don’t ask…

NDCS are calling on the Department for Education to intervene to protect specialist services for deaf children as a matter of urgency. We know that local authorities are cutting these services to save money, without being transparent about their decisions and actions. These services are not a luxury. They are vital to deaf children’s education, health and wellbeing.

We need 100,000 signatures. Please sign today and share with your friends and family. Thank you.

CLICK TO SIGN HERE!

Protecting specialist services for deaf children

Children in the UK who are clinically suitable candidates and whose family chooses this option for them, have been offered bilateral cochlear implants since 2009. This followed recommendations made by the National Institute for Health and Clinical Excellence (NICE) who also said that children who had one cochlear implant prior to their guidance being published could be offered a second implant in the other ear (sequential implantation). At the time the evidence base was poor due to the small number of studies and the small numbers of participants, but NICE were persuaded that there were benefits to children having two implants including improved speech understanding in noisy situations, directional perception of sound, easier and less exhausting listening, and prevention of auditory deprivation and impaired development of central pathways by early stimulation of the auditory nerves. Within the guidance NICE recommended further research into the benefits of bilateral cochlear implantation in children and plan to review the evidence and their recommendations in the future.

As a result of this recommendation 15 cochlear implant centres across the UK formed a consortium and agreed on appropriate test procedures to audit the benefit children receive from bilateral cochlear implants. This group now have data from around 900 children and will be presenting their findings at a conference in Southampton on 11th April 2013. The conference is free to attend for adults and parents of children who use cochlear implants, and costs £50 for professionals. The National Paediatric Bilateral Audit website includes more information on the research, some preliminary results and online booking form for the conference.


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