Submission 65 — Australasian Newborn Hearing Screening Committee — Provision of services under the NDIS Early Childhood Early Intervention Approach | External submission

Joint Standing Committee on the

National Disability Insurance Scheme

Submission to:

The Joint Standing Committee Inquiry into

Provision of Services under the NDIS Early Childhood Early

Intervention Approach

On behalf of:

Australasian Newborn Hearing Screening Committee

(a subcommittee of Deafness Forum of Australia)

Contact person for further information:

Professor Greg Leigh, AO, PhD, FACE

Chair, Australasian Newborn Hearing Screening Committee

c/- Private Bag 29

PARRAMATTA NSW 2124

Ph: 02 9872 0372 Fax: 02 9873 1614

Summary Recommendations

The Australasian Newborn Hearing Screening Committee recommends that

Joint Standing Committee Inquiry into the provision of services under the NDIS Early Childhood Early Intervention Approach should conclude that the interests of all Australian children with hearing loss and their families will be best met by ensuring that:

Australian Hearing continues to be the sole obligated provider of hearing services to children up to at least the age of a18 years (i.e., either under the existing Hearing Services Program or under the NDIS as a designated service provider);
Australian Hearing does not then seek to compete within the disability services market as a provider of early intervention or other services beyond its current remit as a provider of hearing services; and
Australian Hearing is funded under the NDIS or through an extension of the Hearing Services program to be the obligated provider of guided referral services for children who are in transition from diagnosis of their hearing loss to engagement with early intervention services under the terms of the NDIS.

Background In the absence of intervention, children with permanent congenital hearing loss will typically experience delayed or disordered communication and language abilities, with consequential impact upon their educational achievement (Leigh, Schmulian Taljaard, & Poulakis, 2010). The capacity to ameliorate the effects of congenital hearing loss is enhanced greatly by intervention being provided at the earliest possible time. This is because there is a highly sensitive period for the development of a range of cognitive and linguistic abilities that commences before birth and continues through very early childhood (particularly during the first 12-18 months).

Because of the critical nature of this period of early development, it is extremely important that congenital hearing loss is identified and intervention is commenced at the earliest possible time. Current international research, including the Long-term Outcomes for Children with Hearing Impairment (LOCHI) (Ching, Leigh, & Dillon,

study being undertaken in Australia under the auspices of the National Acoustic Laboratories, indicates that babies whose permanent bilateral hearing impairment is diagnosed early have significantly better developmental outcomes than children identified later. There is a significant relationship between the age at which children’s hearing loss is identified, and intervention is commenced, and their levels of language and communication ability later in childhood. In the LOCHI study, for example, children for whom intervention commenced earlier have been shown to have, on average, significantly better language and communication skills at 5 years of age (Ching et al., 2017). Notably, even small delays in engagement with intervention have been shown to be associated with significantly poorer outcomes in terms of speech, language and other developmental outcomes at

5 years of age. There is no question that timeliness of service engagement and service delivery is of the essence in securing positive outcomes from engagement with early childhood intervention for children with congenital hearing loss. Put simply, any delay introduced into the system will have an impact on the long-term outcomes of that intervention for children with permanent congenital or early childhood hearing loss.

The Australasian Newborn Hearing Screening Committee (hereafter, “the ANHSC”)

has been active in advocacy for the introduction and subsequent development of newborn hearing screening since 2001. At that time, the ANHSC was responsible for the development, wide endorsement, and dissemination of the first Australian Consensus Statement on Universal Neonatal Hearing Screening.

The ANHSC (as a sub-committee of Deafness Forum of Australia) comprises a broad range of professionals representing the fields of Otolaryngology, Paediatrics and

Child Health, Education of the Deaf, Audiology, and Nurse Audiometry. The

Committee’s membership includes a Coordinator/Director (or equivalent role) from

every Australian state/territory-based Universal Newborn Hearing Screening

program, as well as representatives from the Deafness Forum, Australian Hearing,

the Newborn Hearing Screening Programme of the National Screening Unit in New

Zealand, and representatives of parents of children with impaired hearing, including Aussie Deaf Kids.

The initial goal of the ANHSC was to advocate for the introduction of newborn hearing screening programs across Australasia (i.e., Australia and New Zealand). Since its inception, however, the ANHSC has also advocated for the maintenance of standards and the advancement of good practice in newborn hearing screening programs, and the development and application of a national quality and reporting framework for such programs. To these ends, the ANHSC has:

 Provided support for a national working party on the development of standards for newborn hearing screening under the auspices of subcommittees of the Australian Health Ministers Advisory Council (AHMAC);  Collated information about protocols and practices associated with the various state screening programs with a view to advocating for acceptable minimum nationals standards of care in regard to UNHS; and  Strongly advocated for a national approach to data collection and management.

In addition, the ANHSC:

 Continues to advocate for the achievement and maintenance of full national population coverage by universal newborn hearing screening programs; and  Has staged eight National Conferences on Universal Newborn Hearing

Screening. The 9th Australasian Newborn Hearing Screening Conference was

held in Melbourne in May 2017.

Response to the Terms of Reference (TOR) This submission addresses issues pertaining to the following terms of reference for the Inquiry:

b) the service needs of NDIS participants receiving support under the ECEI pathway; and

c) the timeframe in receiving services under the ECEI pathway. Specifically, this submission addresses these issues from the perspective of newborn hearing screening in Australia and the critical importance of maintaining the integrity of the neonatal screening pathway to ensure that there is a seamless progression available to children with hearing loss (and their families) from the identification and diagnosis of their hearing loss to engagement with early intervention services.

3.1 The status of UNHS in Australia

In all state and territory health jurisdictions in Australia where Universal Newborn Hearing Screening UNHS has been implemented, the age of confirmation of permanent childhood hearing loss and commencement of appropriate early intervention have been significantly reduced. In the years following the introduction of the State-wide Infant Screening for Hearing (SWISH) program in NSW, for example, the average age of full diagnosis of children with permanent bilateral hearing loss fell from approximately 18 months to just 1.6 months (New South Wales Health Department, 2006; Leigh, Schmulian-Taljaard, & Poulakis, 2010).

3.1.1 Current coverage of the Australian population by UNHS

At the time that the ANHSC was formed in 2001, there were no whole-of-population UNHS programs in Australia. In the period between 2001 and 2009 when COAG made its commitment to the introduction of UNHS, five of the eight states and territories had achieved what could be described as full population coverage (i.e., that all newborn babies are offered the opportunity to have their hearing screened and greater than 95% of those babies complete the hearing screening process in a timely manner). In 2009 the ANHSC estimated that approximately 84% of children born in Australia were completing a screen for hearing at birth.

Since 2009, the final three states and territories (Northern Territory, Victoria, and Western Australia) have competed the roll-out of their UNHS programs—the last being Western Australia in 2015. On the basis of available information, the ANHSC estimates that Australia has now reached a point where all, or close to all, newborn children have the opportunity to have their hearing screened at or soon after birth.

3.2 Maintaining the integrity of early identification and the timeliness of intervention systems

Given the very considerable work that has gone into ensuring that there is a viable system for identification of, and intervention in, infant hearing loss in Australia; and, given the existence of the National Framework for Neonatal Hearing Screening and

the associated National Performance Indicators to Support Neonatal Hearing

Screening in Australia, it is a matter of grave concern to the ANHSC that critical components of the national neonatal screening pathway described by those documents are at risk as a consequence of the proposed transition of the Hearing Services program to the National Disability Insurance Scheme (NDIS). Specifically, it is of concern to the ANHSC that the current functionality fulfilled by Australian Hearing under the National Framework for Neonatal Hearing Screening is not assured under the plans for the transition of paediatric hearing services to a contestable market under the NDIS. Specifically, the ANHSC holds concerns for the integrity of assessment, device fitting, and referral functions currently fulfilled by Australian Hearing in the hearing screening and intervention pathway under any new system of contestable services under the NDIS.

3.3. The benefits of a preserving a dedicated Hearing Services Provider for the

Neonatal Screening Pathway

Under the National Framework for Neonatal Hearing Screening, Australian Hearing

plays a pivotal role in the pathway from screening to engagement with early intervention services and beyond (Department of Health, 2013). Currently, the services of Australian Hearing ensure that the families of children with newly diagnosed hearing loss are provided with timely and supported access to high quality hearing assessment and fitting with appropriate high quality hearing devices (hearing aids). Further, Australian Hearing serves to ensure that families are informed about and directed to a range of early intervention services. These important services are delivered nationally to a level of capability that is the envy of the developed world. Under the Community Service Obligations (CSO) placed on Australian Hearing under the terms of the Hearing Services Program, these services are delivered by Australian Hearing to a uniformly high standard across the country, regardless of families’ geographic locations.

The ANHSC advocates that it is imperative that the level of capability in the early assessment of hearing loss, early fitting of devices, and onward referral to other intervention services that is currently provided by Australian Hearing is maintained in any new system for the delivery of paediatric hearing services in Australia. In particular, it is imperative that time spent by families in receiving these services and moving to the next stage in the hearing screening and intervention pathway is minimised by the ready availability and accessibility of those services. The ANHSC contends that the current role of Australian Hearing as a dedicated and obligated national provider of paediatric hearing services is critical to the integrity of the national neonatal hearing screening pathway as described under the National Framework for Neonatal Hearing Screening.

If the current paediatric CSO services of Australian Hearing (i.e., as a sole national provider) role are to be replaced by a range of contestable services under the NDIS, the ANHSC argues that there are very considerable risks to be addressed on several fronts. Not least among these risks is the potential for commercial imperatives to introduce variability in the quality and professional capability of such services and, in particular, variability in the quality or availability of appropriate services in rural and regional areas.

The ANHSC is deeply concerned that the delivery of best practice in paediatric hearing services (i.e., of the type that has been delivered to newly diagnosed children with hearing loss and their families by Australian Hearing) will not be well served by allowing free market dynamics to dictate the provision of such services under the auspices of the NDIS.

The ANHSC contends that the process of transition of children and families from diagnostic audiology to early intervention that is currently overseen by Australian Hearing’s paediatric services must be underpinned by highly skilled and readily available services for all Australian children regardless of their physical location. Currently, the manner in which these services have been provided nationally by Australian Hearing (in cooperation with State UNHS programs) has seen Australia become the envy of rest of the world in regard to securing uniformly positive outcomes from UNHS, including world-leading low levels of “loss to follow-up” in the screening pathway.

Given these concerns, it is the strong recommendation of the ANHSC that Australian Hearing should remain as the dedicated (i.e., obligated and exclusive) provider of hearing services for children and young people in Australia. This could be effected by having Australian Hearing either: (a) continue to be the exclusive and obligated provider of services under the existing Children’ Hearing Services program (thereby excising hearing services from the NDIS), or (b) become the exclusive (sole) obligated provider of children’s hearing services under the NDIS.

As a sole and obligated provider of hearing services for children and young people, Australian Hearing should be funded and obligated to exclusively provide services to a uniform standard in all locations currently served by the Australian Hearing under the CSO component of the current Hearing Services program. To do anything less than this puts at risk a neonatal screening, diagnosis and intervention system that is currently one of, if not the, most successful in the developed world.

There are multiple reasons why ensuring that Australian Hearing should be maintained to ensure the continuation of Australia’s world-leading paediatric hearing services. Those reasons include the need to provide:

A. Unbiased, independent service provision and advice: Currently, Australian Hearing is an unbiased and independent organisation without a profit motive.

Parents know the least about hearing loss when their child is first diagnosed. Australian Hearing (or other designated and quality assured national provider) can continue to provide a buffer between parents and providers (particularly service providers who are also commercial purveyors of hearing aids and equipment) where parents feel they can receive independent information regarding early intervention and communication options and the fitting of devices without the associated need for “shopping around” and being exposed to the sales and marketing processes that are commonly associated with the “for-profit” audiological services and hearing aid industries.

The period of time from identification of hearing loss to device fitting and engagement with early intervention services is far too vulnerable a time in the life of children and families for them to be exposed to product marketing.

To date, Australian Hearing as a funded and obligated provider has protected parents from having to make important decisions regarding their children’s hearing health at a vulnerable time in a commercialised and highly competitive market.

B. Technical competency and consistency in paediatric services: Paediatric audiology and the provision of other hearing health services to paediatric clients require highly specialised skills. As an exclusive provider to newly diagnosed children, Australian Hearing will continue to have the scale of paediatric cases and the depth of specialist experience to ensure the ongoing training and expertise of staff. In a country the size of Australia, staff capability in such a low incidence area like paediatric hearing services can only be guaranteed by the economies of scale associated with a national approach to such service provision. In a contested market, it is extremely unlikely that multiple providers will all be able to develop the necessary expertise or deliver the necessary level of professional capability in all geographic locations across the entire country.

C. Prioritised entry to services: Currently Australian Hearing’s obligation to provide services ensures the minimisation of the time between identification, diagnosis, detailed audiological assessment, and engagement with intervention services for newborns with hearing loss and their families. This is because Australian Hearing is obligated under the Hearing Services program to provide a prioritised service for such children to ensure that there is no delay in services and to ensure that all such children receive regular and frequent follow ups.

D. Data management and research capability: As a dedicated and sole provider of hearing services to early-identified children, Australian Hearing, through the National Acoustic Laboratories, is able to collect and manage data that enables world-leading research which is aimed at improvements in service and outcomes. In a contestable market, a national database to track children’s outcomes will still be needed but will require a separate Government-sponsored initiative that will incur additional establishment, maintenance and operational costs.

In contrast to these observable benefits of the continuation of Australian Hearing as a sole national obligated provider under the NDIS (or though continuation of the Hearing Services Program), the introduction of competition in paediatric hearing services has the potential to erode our current national capability and drive negative outcomes for children in the post-UNHS stages of the early identification and intervention pathway.

If hearing services are transitioned entirely to the NDIS, it is logical and predictable that, under a contestable services system, many geographical areas, and hence many newly diagnosed children with hearing loss, will be under-served because of the relative economics (i.e., lack of economy) of providing the critically necessary services in those locations. For many commercially-oriented hearing service providers that will come into the market for the first time in Australia, adult services

and higher volume services for older children will present the largest and most attractive segments of the hearing services market. Pursuing low revenue, high complexity cases of the type that present in the post-newborn hearing screening sector is not likely to be an attractive or economic prospect for many private operators. Even if NDIS packages are more generous than the funding that is currently available under the CSO component of the current Hearing Services Program, the small size of this market will make the profitability of investing in highly skilled and highly available services right across the country very unlikely.

The ANHSC is aware that there are provisions under the NDIS Act to monitor the market and intervene where there is market or system failure. In the case of paediatric hearing services, however, there is clearly already a system for delivery of publicly funded services in place and working effectively. It would appear to be highly faulty logic to replace a working system with a new system that is likely to be less cost effective and less effective in terms of population coverage and efficacy, and then to wait for that system to fail before predictably needing to intervene to support the market. To be clear, the current system for the delivery of publicly funded early identification and intervention services in regard to infant hearing loss is effective, efficient, highly successful, and the envy of the world in regard to the provision for children with hearing loss.

3.4 The potential for Australian Hearing to be a provider of other early intervention services

To be clear, the ANHSC contends that there is a critical need to ensure that there continues to be an obligated provider of paediatric hearing services (whether that be under the auspices of the current Hearing Services program or under the auspices of the NDIS) to ensure that there remains the capacity for high quality, highly accessible, and locally delivered assessment and referral services for all children with hearing loss, regardless of where they may live or present for audiological management beyond UNHS diagnosis. Logically, we argue, that provider should continue to be Australian Hearing.

Having noted this recommendation, the ANHSC notes and welcomes the Australian Government’s decision to retain Australian Hearing in its own control. However, we also note that this decision raises significant questions in regard to the nature of the future of Australian Hearing’s approach to the delivery of hearing services.

Specifically there is the question of whether, if not constrained by the requirements of sole provision under the Hearing Services program, will the service delivery profile of Australian Hearing change and how?

It is unclear whether, as a service provider in a contestable market, Australian Hearing may extend its service brief to new areas such as the delivery of early intervention services or other associated therapeutic services under the terms of the NDIS. Such a move would prevent Australian Hearing from fulfilling a critical role as an independent source of information and guidance for families on the pathway from diagnosis to engagement with early intervention services for children with hearing loss.

The ANHCS contends that, were Australian Hearing to remain as the obligated and sole provider of hearing services, it could be funded to serve an important additional role as an obligated provider of guided referral services (i.e., serving to assist parents of children who have been identified with hearing loss to identify and engage with one of the range of early intervention providers that present under the terms of the NDIS).

By serving such a role under the auspices of the NDIS, Australian Hearing could contribute to ensuring that the period of time between diagnosis and effective engagement with appropriate early intervention services is minimized for Australian children with hearing loss and their families. Indeed, such a role would go a long way to ensuring that, through the transition to the NDIS, Australia maintains its world leading status in terms of our low levels of loss to follow up in the new-born hearing screening and intervention pathways, AND, its world-leading status in terms of securing timely early engagement with intervention services for children with hearing loss.

Conclusions/Recommendations: The ANHSC shares the widely held view that Australia enjoys a position as the world leader in delivery of services for children with hearing loss. From our perspective, however, that position is under severe threat. Relative to our currently high standards, there is the potential for significant regression in the quality and availability of services.

The ANHSC welcomes the Government’s recent decision to retain Australian Hearing in government ownership and control but urges the Inquiry to conclude that the interests of all Australian children with hearing loss and their families will be best met by ensuring that:

Australian Hearing continues to be the sole obligated provider of hearing services to children up to at least the age of a18 years (i.e., either under the existing Hearing Services Program or under the NDIS as a designated service provider);
Australian Hearing does not then seek to compete within the disability services market as a provider of early intervention or other services beyond its current remit as a provider of hearing services; and
Australian Hearing is funded under the NDIS or through an extension of the Hearing Services program to be the obligated provider of guided referral services for children who are in transition from diagnosis of their hearing loss to engagement with early intervention services under the terms of the NDIS.

Without appropriate action of the type recommended above, the ANHSC believes that there is every chance that the standard of service provision for children with hearing loss in Australia will diminish for the first time in a 70-year period of uninterrupted service improvement. It behoves everyone that is associated with this

field to work to ensure that the integrity of all aspects of Australia’s excellent hearing screening, diagnosis, and intervention systems are maintained and improved.

The ANHSC would be pleased to provide additional information and evidence to the Inquiry around the content and recommendations in this submission (or any other related issue) and would very much welcome the opportunity to address these issues in more detail through personal presentation to the Inquiry.

References Australian Institute of Health and Welfare (2013). National Performance Indicators to

Support Neonatal Hearing Screening in Australia. Canberra: Author. (Available

for download from: http://www.aihw.gov.au/publication detail/?id=60129545439)

Ching, T Y. C., Dillon, H., Button, L., Seeto, M., Van Buynder, P., Marnane, V., Cupples, L., & Leigh, G., (2017). Age at intervention for permanent hearing loss and 5-year language outcomes. Pediatrics. doi:10.1542/peds.2016-4274 Ching, T Y. C., Leigh, G., & Dillon, H. (2013). Introduction to the Longitudinal Outcomes of Children with Hearing Impairment (LOCHI) study: Background, design, sample characteristics. International Journal of Audiology, 52 (Supplement 2), S4-S9.

Community Care and Population Health Principal Committee (Standing Committee

on Screening) (2016). Population based screening framework. Canberra: Author. Department of Health (2013). National Framework for Neonatal Hearing Screening. Canberra: Author. (Available for download from: http://www.health.gov.au/internet/main/publishing.nsf/Content/neonatal hearing-screening)

Joint Committee on Infant Hearing (2000). Year 2000 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics,106(4), 798-817. Joint Committee on Infant Hearing (2007). Year 2007 position statement: Principles and guidelines for early hearing detection and intervention programs. Pediatrics,120(4), 898-921. doi: 0.1542/peds.2007-2333 Joint Committee on Infant Hearing (2013). Supplement to the JCIH 2007 Position Statement: Principles and guidelines for early intervention after confirmation that a child is deaf or hard of hearing. Pediatrics,131(4). doi: 10.1542/peds.2013-0008 Leigh, G., Schmulian-Taljaard, D., Poulakis, Z. (2010). Newborn Hearing Screening. In C. Driscoll, & B. McPherson (Eds.), Newborn Screening Systems: The Complete Perspective (pp. 95-115). San Diego: Plural Publishing, Inc. New South Wales Health Department. (2006). Ministerial standing committee on hearing annual report 2004–2005. (Available for download from: http://www.health.nsw.gov.au/hearing/pdf/annual_report.pdf)