East Java Hearing and Communication Center: Current services for hearing-impaired children in East Java

January 2012

Executive Summary

This report presents a needs evaluation for establishing early identification and intervention services for deaf and hearing-impaired children in East Java, and follows the recent visit to Surabaya by members of the Patricia O’Sullivan Humanitarian Project (POSH) to study current services available. This visit was an outcome of the visit by East Java Government representatives to Perth in March 2011 which was undertaken as part of the sister state relationship between East Java and Western Australia. Indonesia is moving towards inclusive education of children with disabilities into mainstream schools, and the Indonesian delegation’s aim was to study current facilities and programs in Western Australia for disabled children. The Indonesian delegation comprised of representatives from the city of Surabaya and the Regencies of Gresik and Sidoarjo. All three locations are committed to establishing local “Hearing and Communication Resource Centres” which will provide support to hearing-impaired and deaf children, their families and associated professionals. The longer term plan is to extend these to support a wider range of disabilities.

There are an estimated 1800 – 3790 children born every year in East Java with a disabling hearing loss affecting their speech, language and educational development. By extrapolation, this suggests there are between 27,000 – 56,850 children less than 15 years of age with a significant permanent disabling hearing loss requiring hearing aids in East Java. However the cost of devices and batteries makes them unaffordable for most Indonesian families, with only 10% of children having hearing aids.

East Java has in place a “targeted” newborn hearing screening program for children identified as being “at risk” for hearing loss, and an excellent facility which can provide full diagnostic assessment. Unfortunately, an estimated at 90% of the children who fail the screening are unable to afford full diagnostic testing to confirm the severity of their hearing loss. These children would normally not proceed to any intervention program until they reach school age, when they would enrol in a school for deaf and hearing-impaired.

The proposed Hearing and Communication Resource Centres would be ideally placed to offer hearing assessment and rehabilitation services in geographically more accessible community-based locations. However, they will require staff that have received training in hearing testing of infants and young children, as well as staff that can provide families with information and support in teaching their children to communicate. They would also need to be trained in identifying and referring children that need medical attention and/or hearing aids. Some of this training can be provided in Perth and the Patricia O’Sullivan Humanitarian Project is well placed to coordinate a 2-3 week training program in Perth which would focus on early identification and intervention for hearing impaired children. The understanding from the Indonesian delegation which visited Perth in 2011 was that the accommodation, meals and costs associated with the training would be met by the WA Government. During February to March the East Java Government will be conducting an introductory training program for 20 trainees at the Dr Soetomo Hospital. Between 10 to 15 of the trainees will then be selected to attend further training in Perth later in 2012.

The East Java government is keen to progress the development of sustainable audiology and speech and communication education at tertiary level, and sees this as a longer term objective. The establishment of the Resource Centres provides the first step in the training of appropriate medical and education professionals to work with hearing impaired and deaf children. The initial move towards tertiary training was discussed at a meeting with the Australian delegation and the Vice Chancellor of Airlaanga University in Surabaya which is keen to establish a Master of Audiology program. It has an MOU with the University of Western Australian and had indicated it would approach UWA for further discussions.

Contents

Executive Summary ................................................................................................... 2

1. Background ............................................................................................................ 4

2. Incidence and Prevention of Hearing Loss in Indonesian Children ........................ 5

3. Identification of children with hearing loss .............................................................. 5

4. Hearing Aids and Cochlear Implants ......................................................................6

5. Early Intervention and education of hearing-impaired and Deaf Children .............. 7

6. Karya Mulia School ................................................................................................ 8

7. Perth Training......................................................................................................... 8

8. University Level Training ...................................................................................... 10

9. Recommendations ............................................................................................... 10

10.References .........................................................................................................12 Appendix 1: Meetings ........................................................................................... 13 Appendix 2: Students and Teachers at Karya Mulia School for the Deaf ............ 15

Cover photo: Students from Sidoarjo’s Special School for Deaf Children perform in the gamelan orchestra

Authors: H. Goulios, M. Kormendy, T. Henderson and J. Ratna Hearing Aid East Java (incorporating the Patricia O’Sullivan Humanitarian Project)

1. Background

The province of East Java, Indonesia, has a population of 40 million people. Its capital city, Surabaya, is the second largest city in Indonesia after Jakarta. East Java is divided into 32 Regencies and these include the city of Surabaya, and the Regencies of Gresik and Sidoarjo (each with populations of between 2-3 million people). All three locations are strongly committed to inclusive education of children with disabilities into mainstream schools. As part of this commitment the locations have agreed to set up local “Hearing and Communication Resource Centres” which initially provide support to hearing-impaired and deaf children, their families and associated professionals. The longer term plan is to extend these centres to support a wider range of disabilities.

The concept of the Resource Centres was initiated following the visit of East Java Government representatives to Perth in March 2011. This was undertaken as part of the sister state relationship between East Java and Western Australia. The program included visits to both the Telethon Speech and Hearing Centre and the Western Australian Institute of Deaf Education where members of the Patricia O’Sullivan Humanitarian Project (POSH) gave a presentation on the organisation’s past contributions in Surabaya, and proposed a model for future support. POSH has been supporting the needs of hearing-impaired children at the Karya Mulia School in Surabaya for more than 15 years. Working together with local Indonesian agencies, and with the additional support from Rotary (Floreat), Australian Hearing (a Commonwealth Government agency) and the University of Western Australia, the outcomes have included the provision of hearing testing and training equipment, computers and office equipment, travel and education of Karya Mulia teachers to Perth for training in basic audiology practice, and travel of Australian volunteer teachers, audiologists and audiology students to provide services at Karya Mulia School. The aims of the Patricia O’Sullivan Humanitarian Project are consistent with those of the sister state relationship between Western Australian and East Java. POSH is keen to progress services aimed at the early identification and intervention of children with hearing loss.

One of the outcomes of the Indonesian delegation’s visit was a commitment to send 10 education/paramedical personnel from East Java to undertake an intensive training program in Perth. The trainees would staff the proposed Resource Centres. The training would be focussed on audiology and speech/communication for hearing-impaired children. The understanding from the Indonesian delegation was that the accommodation, meals and all costs associated with the training would be met by the WA Government.

The objectives and appropriateness of the training to be provided in Perth were unclear. To clarify these POSH sent a small delegation to examine the current services, agencies and training associated with supporting deaf and hearing-impaired children in East Java. The project team comprised Ms Trisha Henderson (President), Dr Helen Goulios (Audiologist), Ms Marie Kormendy (Specialist Teacher for Deaf children and children with other special needs) and Mrs Josephine Ratna (Psychologist). Mr Peter Kissick also accompanied the project team to evaluate the extension of vocational printing training for deaf students, and those findings are summarised in a separate report. The program for the visit was put together by Mr Benny Sampirwanto from the East Java Government in consultation with POSH, and a summary of the meetings held during the week of 21-25 November 2011 is shown in Appendix 1.

2. Incidence and Prevention of Hearing Loss in Indonesian Children

The incidence of childhood permanent hearing loss (hearing levels in the better ear of >40dBHL in developing countries is estimated to be between 2 – 4.2 per 1000 live births (Mathers et al., 2000). This would suggest that there are between 1800 – 3790 children born every year in East Java with a disabling permanent hearing loss that affects their speech, language and educational development. By extrapolation there would be an estimated 27,000 – 56,850 children less than 15 years of age with a significant hearing loss requiring hearing aids in East Java. Estimates from medical and educational staff based in East Java indicate that less than 10% of these children currently have hearing aids. The cost of hearing aids and batteries was given as the main reason that most Indonesian families could not proceed to the purchase of hearing aids for their children.

The large majority of Indonesian children are born at home. They are encouraged to attend their local child health centre, and parents are presented with their child health booklet (Buku Kesehatan Ibu dan anak) which provides basic health care information, and records the child’s developmental progress. The book also lists the immunisations available to all children at no cost, and these include Polio, Diptheria, and Tetanus.

Unfortunately, the immunisations do not include a Rubella vaccine, and data displayed at the Dr Soetomo Hospital indicates maternal Rubella as the eitiology in 40-50% of children diagnosed with hearing loss at the hospital. Maternal Rubella during the first trimester of pregnancy causes mild flu-like symptoms and rash in the mother. The consequences for the unborn child however are devastating, and can include deafness, blindness, heart problems and cognitive impairment. In Australia, all children are offered the Rubella vaccination as part of the combined MMR (Mumps, Measles, Rubella) vaccine at 12 months of age, and in addition, all girls are also offered the vaccination at 13 years of age. The cost of a Rubella vaccine was estimated by a local ENT to be around $50 per child in Indonesia. However, these costs vary greatly around the world and can start from around $10 per infant for the MMR vaccine (with a smaller dose being required for an infant than an adult).

Given the much higher medical and educational costs required for children affected by Rubella, it would seem highly cost-effective to offer MMR vaccination to children.

Recommendation 1: That the Indonesian Government give consideration to including the MMR vaccine as part of its childhood immunisation program.

Recommendation 2: That the Indonesian Government give consideration to expanding its public health policies to include public awareness of the impact of hearing loss and prevention of the major causes of hearing loss.

3. Identification of children with hearing loss

Indonesia and East Java (specifically) do not have a universal newborn hearing screening program, however, children identified as being “at-risk” for hearing loss (for example, premature and low birth weight babies) are offered a hearing screening using otoacoustic emissions. This is an objective test of hearing and can be performed from birth. Children who fail this screening can attend a major hospital with an ENT (Neurotology) Department for a full diagnostic assessment. The Dr Soetomo Hospital is the primary hospital for provision of these services in Surabaya. The assessment is undertaken by audiometrists who are trained by hearing aid manufacturing companies, and work for the private company Kasoem. Assessments are undertaken on a fee-for service basis, however only 10% of families can afford further testing. The cost of a full diagnostic test was estimated at AUS

$100. The hospital has a modern, well-equipped clinic that offers the full range of behavioural and electrophysiological tests (including Visual Response Audiometry, Auditory Brainstem Response Audiometry and Cochlear Implant assessment, switch-on and review). Much of the original equipment was donated by Australian organisations including Australian Hearing and Rotary, with a view to all children having access to hearing tests.

• Otoscopes (Approximately AUS $150)

Teaching Tools

• Curriculum Program for Early Intervention (to be developed in Perth)

• Appropriate toys and equipment to promote development of communication and language skills (AUS $3000)

Set of Frequency-specific Noise-makers (AUS $200)

Although East Java has in place a “targeted” newborn hearing screening program, and an excellent facility which can provide full diagnostic assessment, families of the majority of children (estimated at 90%) who fail the screening are unable to afford full diagnostic testing to confirm the severity of their hearing loss. These children would normally not proceed to any intervention program until they reach school age. Hearing impairment in children results in reduced speech, language, education, vocational and social potential, and early identification and intervention before six-months of age is now well recognised as being of critical importance.

The proposed Resource Centres would be ideally placed to offer hearing assessment and rehabilitation services in geographically more accessible community-based locations. However, they will require staff that have had training in hearing testing of infants and young children as well as staff that can provide families with information and support for teaching families how to communicate with their children. They would also need to be trained in identifying and referring children who need medical attention and/or hearing aids. The Resource Centres would need a minimum inventory of basic equipment (appropriate for their training level) to allow staff to perform these functions. This would include (estimated cost given per centre):

Audiology Equipment

Sound Level Meter (AUS $1000)

Tympanometer (AUS $3000)

Diagnostic Audiometer (AUS $ 5000)

Otoacoustic Emissions Screener (AUS $6000)

Recommendation 3: That appropriate training is provided to staff working at the Resource Centres to allow them to perform basic hearing testing for infants and children, and provide parents and teachers with basic communication training skills.

Recommendation 4: That the Resource Centres are equipped with a minimum inventory of hearing testing and teaching tools that would be needed by the staff.

4. Hearing Aids and Cochlear Implants

Less than 10% of children diagnosed with a hearing loss can afford a hearing aid fitting. Local professionals estimated that the cost of an analogue (known brand) hearing aid varied from AUS $300-$450 each. The cost of a digital aid started around AUS $1000 each.

The wholesale cost of digital hearing aids in Australia ranges from $350 - $2800 each. These prices do not include the prescription and verification of devices by audiologists, and

the ongoing support, follow-up and maintenance of devices. Australian providers would generally lump all these together so that the retail cost of devices becomes $1500 - $5500 per hearing aid. All Australian children and young adults up to 26 years of age have access to free digital hearing aids and batteries through Australian Hearing, a Commonwealth government agency. Australian Hearing also provides services to eligible adult clients (primarily aged pensioners) and as such is able to negotiate much lower wholesale costs for its hearing aids.

Similar programs exist in other developed countries including the United Kingdom which provides audiological assessment, management and hearing aids to all its residents through the National Health System (NHS). The large number of hearing aids required allows the NHS to use these economies of scale to negotiate very low wholesale costs for its hearing aids. In 2010 the NHS was able to negotiate prices of around AUS$100 per digital hearing aid.

A very small proportion of children with profound hearing loss proceed to cochlear implantation. The surgery can be performed at several hospitals in Surabaya (including the Dr Soetomo Hospital and the Navy Hospital), and the switch-on and after care undertaken by both local and international visiting personnel. Most of these children attend the Aurica Centre which is a not-for-profit organisation initially established by parents of a profoundly deaf child, and supported by families of recently implanted children. It provides early intervention services and uses Auditory-Verbal approaches in educating its children. Aurica is financially very limited in providing support to children and families who are unable to afford services.

Recommendation 5: That the East Java government consider ways of part subsidising hearing aids and batteries for all deaf and hearing-impaired children,

Recommendation 6: That the East Java government examine bulk purchasing of devices and batteries to reduce device costs through economies of scale.

5. Early Intervention and education of hearing-impaired and Deaf Children

Although all children identified as being at-risk of having a hearing loss may have access to a hearing screening test, it seems the majority of children who fail the screening (90%) cannot proceed to a diagnostic test due to a lack of affordability. The 10% of children who do complete an early diagnostic test, and are then subsequently fitted with hearing aids, may be able to access play groups in special schools from about age 2-3 years. It is likely that the other 90% of children do not have access to a confirmed diagnosis of their hearing loss until they commence school (age 5-6 years), and are unlikely to have access to hearing aids. The only amplification these children are likely to have is group-headphone systems for a few hours each week. The speech, language and educational outcomes for these children are likely to be very poor. The majority of these children use sign language as their main form of communication.

The Resource Centres would be well-placed to provide support and information on early language development including signing and Auditory-Verbal Training (AVT) depending on the needs of the child. They would also need to be aware of the implications of using AVT in children without adequate amplification. The Resource Centres would be the first step in a longer term bridging program that maximises the speech, language, education and vocational potential for all hearing impaired and deaf children.

The introduction of inclusive schooling for deaf children will only be successful if appropriate support is provided to these children. This would include hearing aids, support from teachers of the deaf (or special communication teachers), note-takers and signing interpreters. The establishment of the Resource Centres in the three Regencies is an excellent first step to assisting with the provision of support.

Recommendation 7: Given the commitment already made by the East Java Government and the three Regencies, it is recommended that an intensive training program be provided to appropriate staff of the Resource Centres. This may proceed with support from Hearing Aid East Java (incorporating the Patricia O’Sullivan Humanitarian Project), The WA Disabilities Services Commission and the East Java Government.

6. Karya Mulia School

Karya Mulia School for Deaf Children located in Surabaya provides educational services for 211 children from play group through to senior high school. The majority of children have a bilateral severe to profound sensorineural hearing loss, with a small number of these (10) having additional disabilities.

Only 10% of the children have hearing aids or cochlear implants which provide these children with access to oral speech and language. However, 90% of the children are unable to detect and/or discriminate speech solely as a consequence of the cost of hearing aids being unaffordable for most families. The school employs a total of 52 teachers and details of the staff/student ratios are given in Appendix 2.

7. Perth Training

The move towards inclusive schooling has been a driving force to improve hearing services for children in East Java. The East Java Government recognises that this will require additional resources and its initial focus is the provision of special training for teachers and health professionals who will be located at three Resource Centres that will provide support to children, parents and teachers at inclusive schools. Although this is an important first step, a sustainable and cost effective improvement in hearing services (and ultimately educational outcomes for deaf children) will only be achieved if there is a commitment to resourcing a wide range of health and educational needs. These are highlighted in the recommendations which are summarised below.

The initial suggestion was for 10 trainees to come to Perth, although there may be some additional trainees to be funded by Surabaya and East Java Governments. There will be 20 trainees who will be selected to complete a 2 month training program at the Dr Soetomo Hospital (under the guidance of Dr Nyilo). 10-15 of these will then be selected to come to Perth. Dr Nyilo has provided POSH with the Dr Soetomo Hospital training curriculum which is based on a program previously held in Bandung. At the end of their two-month training period at the hospital, the trainees will:

• have a basic knowledge of hearing science,

• be able to conduct some basic hearing tests for adults and older children

• have some knowledge about the causes and possible treatments for hearing loss.

The Hearing and Communication Training Program in Perth would be conducted over a three week period. The training outcomes for participants would be:

1) Provide a basic hearing test for children from birth, including:

• some behavioural techniques for testing babies (behavioural observation audiometry), toddlers (visual response audiometry) and young children (play audiometry);

• testing and interpreting tympanometry in children;

• testing and interpreting some basic speech tests;

• using otoacoustic emissions as a screening tool;

• take histories from parents before the testing, and provide feedback to parents on the results, and

• know when and who to refer children to given the results of the tests.

2) Understand what a child hears based on the severity of their hearing loss, and how this impacts on their speech and language development.

3) Have a basic working knowledge of hearing aids, including:

• be able to trouble shoot hearing aids that are not working;

• understand what a hearing aid is, what it can do and what it can’t do (especially in relation to speech and language development);

• understand how a hearing aid is selected based on the severity of a hearing loss, and

• understand why a hearing aid does NOT give a child normal hearing, and have an appreciation of the type of hearing a child has given their loss and their hearing aids.

4) Have a basic understanding of cochlear implants and their limitations.

5) Provide information to teachers and other professionals about managing hearing-impaired children in their classroom, schools and other centres.

6) Have an understanding of other disabilities and how these might impact on a child who has a hearing loss.

7) Understand speech and language development in a child with normal hearing.

8) Understand how the severity of a hearing loss impacts on a child’s speech and language development (what sounds they can hear/what sounds they cannot hear both with and without hearing aids).

9) Understand that a child needs to have adequate amplification in order to develop “oral” communication.

10) What to do if a child does not have hearing aids?

11) Understand and be able to use some auditory-verbal teaching techniques.

12) Understand why a signing language is needed for some children.

The logistics of training location, accommodation, meals and transport of the participants will need further clarification from DSC. POSH will be able to design and deliver the training program itself.

Recommendation 8: The proposed intensive training program in Perth will be conducted in English and it is recommended that the participants selected to attend the program have good English language written and oral communication skills.

8. University Level Training

The initial move towards tertiary education was discussed at a meeting with the Australian delegation from POSH and the Vice Chancellor of Airlaanga University in Surabaya. The University is interested in establishing a Master of Audiology program. It has an MOU with the University of Western Australian and the Vice Chancellor indicated he would be writing to UWA regarding possible collaboration and support in establishing such a program. In the first instance, Airlangga University needed to have preliminary discussions internally regarding which of its schools would be best placed to host a new Audiology program.

Recommendation 9: That the East Java government supports the establishment of university level education in Audiology and Teacher of the Deaf studies.

9. Recommendations

Recommendation 1: That the Indonesian Government give consideration to including the MMR vaccine as part of its childhood immunisation program.

Recommendation 4: That the Resource Centres are equipped with a minimum inventory of hearing testing and teaching tools that would be needed by the staff.

Recommendation 5: That the East Java government consider ways of part subsidising hearing aids and batteries for all deaf and hearing-impaired children,

Recommendation 6: That the East Java government examine bulk purchasing of devices and batteries to reduce device costs through economies of scale.

O’Sullivan Humanitarian Project, the WA Disabilities Services Commission and the East Java Government.

Recommendation 9: That the East Java government supports the establishment of university level education in Audiology and Teacher of the Deaf studies.

10. References

United Nations Department of Economic and Social Affairs: World Population Prospects (2012) http://esa.un.org/unpd/wpp/index.htm Retrieved 25 January 2012

Mathers, C. Smith, A. And Concha, M (2000) Global Burden of Hearing Loss in the Year 2000. http://www.who.int/healthinfo/statistics/bod_hearingloss.pdf Retrieved 25 January 2012

NHS (2010) NHS Prescription Pricing Division http://www.ppa.org.uk/foidocs/responses/FOI_Request_(510291).pdf Retrieved 25 January 2012

WHO Regional Office for South East Asia (2007) Situation Review and Update on Deafness, Hearing Loss and Proposed Intervention Programs.

http://www.searo.who.int/LinkFiles/Publications_SEA-Deaf-10.pdf Retrieved 25 January 2012

East Java Hearing and Communication Center

Minggu, 03 Juni 2012

Current services for hearing-impaired children in East Java

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