Hearing loss among children on the APY Lands

Posted on 19 January 2016 under APY Lands, Clearinghouse, Tracking & Uncategorized.
Tags: disability & ear health

What does the data tell us?

Various data sources and research studies indicate that levels of hearing loss and the extent of persistent middle ear infections among children on the APY Lands have reached epidemic proportions.

According to a report compiled by the Ngaanyatjarra-Pitjantjatjara-Yankunytjatjara Women’s Council, hearing problems are the most diagnosed disability among Anangu children across the APY Lands. As shown in a Table (below) from this report, of the school-going children with an identified disability, the majority of these children have hearing problems. This has significant implications for their ability to learn, socialise and develop life skills.[1]

 

Diagnosed Hearing Disability in School Age children on APY Lands [Source: DECD, 2013/4][2]

Community School Total children with disability[3] Number of children with a hearing disability
Amata 41 35
Ernabella 36 33
Fregon 11 11
Indulkana 17 16
Kenmore Park 3 2
Mimili 16 16
Murputja 6 4
Pipalyatjara 12 12
TOTAL 142 129

 

Kelly Vincent, Dignity for Disability MP, comments on the need for support for children with hearing loss and the negative impact of this loss on children: ‘Students that can’t hear well and without adequate supports, are far more likely to have delayed speech and language skills, and experience learning and behavioural challenges’.[4]

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A research collaboration involving DECD’s Anangu Education Services and the Flinders University’s School of Medicine – commencing in 2003 and conducted over more than six years – focused on conducting annual hearing assessments of school-aged children across the APY Lands and in western South Australia. It investigated the extent of middle-ear disease and related hearing loss.

Associate Professor Linnett Sanchez, one of two audiologists working on the Flinders’ research project, told the Flinders Journal that 74 per cent of children tested in the APY Lands fail a hearing screening test, presenting ‘horrific levels of prevalence of conductive hearing loss’ consistent with findings about ear disease and hearing loss in many other remote Indigenous communities.[5]

During an interview with Paper Tracker Radio in April 2015, Linnett Sanchez indicated that the level of middle ear disease and related conductive hearing loss remains very high and that they had ‘found that just over a third of children had a hole in one or both eardrums … and 75% had actually failed a hearing test’.

What has the service response been?

Were this extreme level of hearing loss to occur amongst children in u ban centres, it would result in a rapid response from services. However, the level of service response for the children on the APY Lands remains worryingly limited, with the main focus being on improving classroom acoustics and working with teachers, but with very little attention being focused on treatment and direct support for the children themselves.

During her presentation to the Aboriginal Lands Parliamentary Standing Committee in October 2015, Linnett Sanchez commented on the Flinders’ research study stating that, ‘… it presented a whole-of-population snapshot of the magnitude of the problem. But, sadly and demoralizingly, we kept documenting the magnitude of the problem, but then no-one picked up and did anything with it… The data should have been used now for at least a decade as a galvanising springboard to action, and that hasn’t happened’.[6]

According to the NPY Women’s Council report,[7] Australian Hearing currently visits schools on the Lands twice a year. Their work focuses on testing for and maintenance of hearing aids. Children’s hearing aids are usually kept in the classroom and usage depends on the interest and commitment of individual teachers.

The Nganampa Health Council operates an Ear Health Program. Through funding provided by the Rural Doctor’s Workforce Agency, ear, nose and throat surgeons make visits to the APY Lands and screen children for ear disease. Selected patients may then be referred to Adelaide for surgery. According to the Nganampa Health Council’s latest Annual Report (2014): ‘Dr David Wabnitz made two ENT visits this year, undertaking 140 separate consultations.’[8]

The Department of Education and Child Development funds two hearing co-ordinator positions, referred to as Special Educators (Hearing). One of these two positions was vacant in October 2014 and the DECD website still indicates this position as being vacant.[9] The person in this funded position would be required to visit the Lands three times a year. This position would work primarily with teachers, and not directly with children.

Speech pathology, which often accompanies hearing loss (but in and of itself is also a pathology that needs to be treated), also does not get the necessary attention that is needed. As with ear health services, current speech pathology services are limited to working with teachers rather than giving support directly to children and families on a regular basis.

DECD speech pathologists visit the schools once a term and provide support to teachers who work with children who are older than three years of age. As with hearing specialist visits, there is very limited, if any, support for regular direct work with children or for those families who want to work with their children. A number of children on the APY Lands would benefit from one-to-one direct support for their speech development. There is also an urgent need for speech work with children aged 0-3 who are delayed in their speech development. This earlier intervention might prevent the need for more intensive services with the same children at a later stage.[10]

 

What is needed?

While the DECD drew on the Flinders’ research to develop a technical support response in classrooms e.g. improving classroom acoustics,  according to Sanchez, ‘What didn’t happen, and still hasn’t happened, is the spill-over from education to health, with health picking up the problem and saying, “Alright, we need (1) early prevention, which is the key to try to reduce the problem from the outset; and (2) to treat the children whose ears are never going to be healthy again without specialist treatments”’.[11]

She goes on to say that, ‘We are consigning these young adults, these secondary students, to a young adulthood and an adulthood of unremitting disability through hearing problems because they have not had the treatment they need. So, the knock-on effect into employment opportunities, motivation and mental health can’t be stressed enough. So, while there is a need for early intervention, for years and years there will be a need for specialist treatment as well … I think the data speak for themselves, but, as I say, my abiding concern and sense of immense frustration is the lack of progress that is being made, particularly for the Anangu children in the APY lands’.[12]

There is a need for work to be done to educate and support families about home-based changes which might help prevent the repeated ear infections and perforations that further damage hearing.

The development of options for new and enhanced therapies for children across the Lands through the National Disability Insurance Scheme (NDIS) is welcomed. However, its success will depend on appropriate diagnosis according to the NDIS criteria,[13] the number of potential clients, parent and carer willingness to engage with the NDIS, and an assessment of areas of need.[14]

The danger exists that families will not be able to access disability funding for hearing loss because the children are not being diagnosed in accordance with NDIS criteria. According to Sanchez, ‘to meet the criterion for disability for funding for hearing impairment, the child had to show at least two consecutive audiograms – hearing test results – within a two-year period which showed a particular degree of hearing loss, or greater … even if people came up and did testing once, of course then that didn’t help them, because you needed the continuity of it … The Australian Hearing audiologists visit the APY lands, probably select communities … Their remit is to provide rehabilitation for children with significant hearing loss; in other words, fitting hearing aids. They are seeing a select referred group of children, and some of those children will certainly be candidates for disability funding. Those children will have the opportunity to have the consecutive testing by Australian Hearing, but the whole of population picture has gone’.[15]

According to Kelly Vincent, ‘The roll out of the National Disability Insurance Scheme for children and young people in South Australia has already had its fair share of challenges in the past two and a half years’ and she is urging the Federal Health Minister not to cut the Medicare Benefits Schedule that may negatively impact young Aboriginal South Australians with disability.[16]

Hearing problems are the most diagnosed disability in Indigenous kids in the APY Lands … Mooted cuts to ear, nose and throat items on the Medicare Benefits Schedule could devastate the ability of these (APY) communities to access adequate services to improve hearing through simple medical procedures… There are multiple challenges faced providing adequate health, education and disability services for young people in these remote communities and we must do everything to ensure that these kids get the same opportunities as their non-Indigenous peers’.[17]

In order to address the needs of the ever-growing number of Anangu children with ear infections and hearing loss, there is an urgent need for early prevention, ongoing assessment, appropriate and timely treatment, and access to support services that do not involve having to jump an inordinate number of hurdles and meet complicated criteria.

References

[1] Ngaanyatjarra-Pitjantjatjara-Yankunytjara Women’s Council – Provision of Services in Relation to Assisting Indigenous Australians in Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS).

[2] Ngaanyatjarra-Pitjantjatjara-Yankunytjara Women’s Council – Provision of Services in Relation to Assisting Indigenous Australians in Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS). This report includes data provided by the Department of Education and Child Development. Table 1, p. 14.

[3] Note: These figures represent only those children who have a diagnosed disability according to specified DECD criteria and do not include children with a learning difficulty or children suffering from trauma and psychological difficulties. The National Collection of Data for the Disability Census for school sites would apply to may more of the children as it includes learning difficulties as well as the DECD category of ‘disability’.

[4] Kelly Vincent, Dignity for Disability, Media release 31 December 2015, Medicare Benefits Schedule cuts -negative impact on Indigenous kids?

[5] Flinders University, Flinders Journal, Vol 19, No 7 September 2008. Gent, C.’Flinders examines pool chlorine boost to indigenous kids’ hearing’ as accessed at https://www.flinders.edu.au/new-and-events-files/Documents/Flinders-Journal-%20September.pdf

[6] Parliament of South Australia, (Official Hansard Report), Presentation to the Aboriginal Lands Parliamentary Standing Committee, Associate Professor Linnett Sanchez, Wednesday, 28 October 2015, pp. 8-9.

[7] Ngaanyatjarra-Pitjantjatjara-Yankunytjatjara Women’s Council – The Provision of Services in Relation to Assisting Indigenous Australians in Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS).

[8] Nganampa Health Council, Annual Report (2014), p. 4.

[9] Department of Education and Child Development website, as accessed on 11 December 2016 http://www.decd.sa.gov.au/aboutdept/files/links/special_educator_hearing_a.pdf

[10] Ngaanyatjarra-Pitjantjatjara-Yankunytjatjara Women’s Council – The Provision of Services in Relation to Assisting Indigenous Australians in Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS).

[11] Parliament of South Australia, (Official Hansard Report), Hearing before the Aboriginal Lands Parliamentary  Standing Committee, Associate Professor Linnett Sanchez, Wednesday, 28 October 2015, p. 9.

[12] Parliament of South Australia, (Official Hansard Report), Hearing before the Aboriginal Lands Parliamentary  Standing Committee, Associate Professor Linnett Sanchez, Wednesday, 28 October 2015, p. 13.

[13] Parliament of South Australia, (Official Hansard Report), Hearing before the Aboriginal Lands Parliamentary  Standing Committee, Associate Professor Linnett Sanchez, Wednesday, 28 October 2015, p. 13.

[14] Ngaanyatjarra-Pitjantjatjara-Yankunytjatjara Women’s Council – The Provision of Services in Relation to Assisting Indigenous Australians in Anangu Pitjantjatjara Yankunytjatjara (APY) Lands to Benefit from the National Disability Insurance Scheme (NDIS), p. 12.

[15] Parliament of South Australia, (Official Hansard Report), Hearing before the Aboriginal Lands Parliamentary  Standing Committee, Associate Professor Linnett Sanchez, Wednesday, 28 October 2015, p. 13.

[16] Kelly Vincent, Dignity for Disability, Media release 31 December 2015, Medicare Benefits Schedule cuts -negative impact on Indigenous kids?

[17] Kelly Vincent, Dignity for Disability, Media release 31 December 2015, Medicare Benefits Schedule cuts -negative impact on Indigenous kids?

 

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