Submission 40 — The Shepherd Centre — The provision of hearing services under the National Disability Insurance Scheme (NDIS) | External submission

30th January, 2017

Committee Secretary

Joint Standing Committee on the National Disability Insurance Scheme

Parliament House

CANBERRA ACT 2600

Submission to the Joint Standing Committee on the National Disability Insurance Scheme

inquiry into the provision of hearing services under the NDIS

Dear Secretary,

Please find attached a submission on behalf of The Shepherd Centre to the Joint Standing Committee on the National Disability Insurance Scheme’s inquiry into the provision of hearing services under the NDIS.

I welcome the Committee’s inquiry into this issue which is of critical importance to children with hearing loss. The situation for children with hearing loss is deteriorating markedly under the NDIS, with:

 children with milder levels of hearing loss being denied early intervention support despite clear evidence of the need for, and the benefit from, specialised services;  insufficient funding for the specialised services children require so that they can achieve spoken language at the same level as their hearing peers; and  unacceptable delays until the provision of any funding, putting at risk the ability of the children to ever develop language to their full potential.

I would appreciate the opportunity to personally address the Joint Standing Committee at its next public hearing to elaborate further on the matters outlined within this submission. I look forward to receiving details from you once further hearings are scheduled.

Thank you for the opportunity to bring the matters outlined within our submission to the attention of the Committee.

Yours faithfully,

Dr Jim Hungerford, CEO

Sydney ∙ Macquarie ∙ Liverpool ∙ Wollongong ∙ Canberra ∙ Online & Telepractice Website: www.shepherdcentre.org.au

ABN: 61 000 699 927

Submission to the Joint Standing Committee on the

National Disability Insurance Scheme inquiry into

the provision of hearing services under the NDIS

Dr Jim Hungerford, CEO

January 2017

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About The Shepherd Centre – for deaf children……………………………………………………………………………………3 Executive summary…………………………………………………………………………………………………………………………..4 Context …………………………………………………………………………………………………………………………………………..6 The profound impact of early childhood hearing loss……………………………………………………………………………6 Speech and Language ……………………………………………………………………………………………………………………7 Literacy ……………………………………………………………………………………………………………………………………….7 Socioeconomic Issues……………………………………………………………………………………………………………………7 Effects of unilateral or mild hearing loss ………………………………………………………………………………………….8 Critical aspects of support for children with hearing loss ………………………………………………………………………8 Outstanding outcomes are possible………………………………………………………………………………………………….10 Responses to the inquiry’s Terms of Reference ………………………………………………………………………………….13

a. The eligibility criteria for determining access to, and service needs of, deaf and hearing impaired people under the NDIS ………………………………………………………………………………………………………………..13

b. Delays in receiving services, with particular emphasis on early intervention services …………………..14 c. The adequacy of funding for hearing services under the NDIS …………………………………………………..18 d. The accessibility of hearing services, including in rural and remote areas……………………………………23 e. The principle of choice of hearing service provider…………………………………………………………………..24 f. The liaison with key stakeholders in the design of NDIS hearing services, particularly in the development of reference packages ……………………………………………………………………………………………..26

g. Investment in research and innovation in hearing services ……………………………………………………….27 h. Any other related matters …………………………………………………………………………………………………….28 References…………………………………………………………………………………………………………………………………….29 Appendices ……………………………………………………………………………………………………………………………………31 Appendix 1: Outline of The Shepherd Centre Early Intervention service…………………………………………….32 Service initiation……………………………………………………………………………………………………………………..33 Our Early Childhood Intervention Program…………………………………………………………………………………34 First Sounds Implant Program …………………………………………………………………………………………………..38 Other Services…………………………………………………………………………………………………………………………39 Progress Monitoring & Reporting………………………………………………………………………………………………39 Appendix 2: Referral pathways……………………………………………………………………………………………………..40 Pre-existing pathway for children diagnosed at Newborn Hearing Screening………………………………….40 Pre-existing pathway for children diagnosed between birth and school …………………………………………41 New pathway under the NDIS EI protocol…………………………………………………………………………………..42 Appendix 3: Proposed protocol for NDIS EI support for children with permanent hearing loss……………..43

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About The Shepherd Centre – for deaf children

The vision of The Shepherd Centre is that:

Every child with hearing loss can achieve their full potential in the world through their listening, spoken language and social skills.

The Shepherd Centre is one of the world’s leading services providing audiological, early intervention and family support for children with hearing loss. We are a specialist in working with these children, with a family- and person-centred approach, to enable them to achieve spoken language.

We assist over 450 children each year through both face-to-face and telepractice services. These children range from less than 1 month of age through to school-age and onwards; come from remote and metropolitan areas; all socioeconomic backgrounds; many cultural and linguistic backgrounds; and include many children with further needs and disabilities beyond hearing loss alone.

We focus on assisting these children to develop their listening, spoken language and social skills so that they can achieve their potential in life. The outcomes achieved by the program are world leading, with the children typically developing spoken language at the same level as their peers without hearing loss.

The children in our specialised early intervention service receive a transdisciplinary/interdisciplinary program incorporating specialist Listening and Spoken Language Specialists and therapists; Paediatric Audiologists; Child and Family Counsellors; and ENT Specialists (amongst other professionals). Our centres incorporate audiology booths designed for paediatric patients; individual therapy rooms; group clinical rooms; with videoconferencing facilities for remote service delivery. The program includes a cochlear implant program (integrated seamlessly within the early intervention program) for those children requiring this level of assistive hearing device. The early intervention children are aged up to 6 years; with hearing loss that may be bilateral or unilateral; and losses of all levels ranging from mild to profound. Further details on our program is provided in an appendix (Appendix 1: Outline of The Shepherd Centre Early Intervention service, page 32).

Children ‘graduate’ from our early intervention program with the same profile of spoken language skill as other children of the same age. More than 90% of all graduates go on to attend mainstream classes at a mainstream school. The ‘typical’ (median) graduate has standardised language scores at the same level as the median child in the overall population. The statistics for the overall program – including the many children with additional needs, coming from a background other than English, with delayed diagnosis, etc – are outstanding, with the overall median language well within the normal range.

We also provide support for children at school and ongoing support for those children who have received a cochlear implant with us.

Our whole-program early intervention outcomes are published each year. The research we conduct and the outcomes we achieve are presented at multiple national and international conferences. In addition, the Shepherd Centre is:

 a member of First Voice (a globally-leading organisation joining together six like-minded charities from across Australia & New Zealand);  a founding institution within the Australian Hearing Hub; and  a member of the Hearing CRC.

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Executive summary Early childhood hearing loss (also termed hearing impairment) has profound impacts on children.

Children with hearing loss have significantly lower life outcomes than other children; in terms of speech, language, literacy and social inclusion. In Australia the current support for these children depends on whether they have their hearing loss evident at birth or whether they develop it between birth and school age (by school age 1 in 300 children have permanent hearing loss). Children with the most profound levels of hearing loss typically have the worst outcomes, but even children who are only deaf in one ear show high rates of language and educational delay.

The systems for ensuring that children access an appropriate specialist therapy service is universally poor. Children accessing services such as The Shepherd Centre (services providing a specialised, integrated transdisciplinary/interdisciplinary early intervention service) can achieve language outcomes on par with children without any hearing loss. However across Australia, of the 4,000 children with permanent hearing loss below school age, less than 50% currently access an appropriate specialist service.

All children with hearing loss require support to achieve their potential. With specialised support they can match their peers; without it they may never be able to achieve their language or social potential; or even learn language at all.

There are good processes for identifying newborn hearing loss and ensuring these children reach Australian Hearing where they receive audiological support and hearing aids. However the diagnosis and referral system for the majority of children, that develop their loss between birth and school, is poor. Those children that do present to Australian Hearing receive good audiological support and hearing aids.

In addition, there is a lack of a guided referral pathway to equip parents with the information and options they need for their child to achieve the outcomes they want; and there is no national approach for identifying the majority of children that develop their hearing loss after birth but prior to school.

Good outcomes require intervention within a few months of the hearing loss developing. Delay leads to potentially permanent loss of potential and significantly worse outcomes.

This situation should improve dramatically with the roll-out of the NDIS. Unfortunately the situation is actually set to worsen, with the lack of NDIS reference packages resulting in children not being funded for the services that have been demonstrated to achieve language outcomes; and the quality, independence, affordability and accessibility of future paediatric audiology services at risk under NDIS contestability.

Parents of children with hearing loss are not informed consumers. They do not have the specialised knowledge to know whether an early intervention provider or a hearing aid provider is appropriate to help their child.

As a result The Shepherd Centre makes the following key recommendations:

Eligibility

All children developing permanent hearing loss prior to age 6 are to be eligible for early intervention services under the NDIS.
All children between age 6 and 16 developing moderate bilateral permanent hearing loss are to be eligible for early intervention services under the NDIS.
All children developing permanent hearing loss are to be eligible for hearing devices under the NDIS. The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 4 of 45

Rapid provision of services

Establishment of a guided referral pathway, funded by the NDIS, for children diagnosed with permanent hearing loss prior to 6 years of age.

Full funding and quality control of required services

Adoption of the appended ‘Protocol for NDIS EI support for children with permanent hearing loss’ (or an equivalent, page 43) to ensure that children with hearing loss can continue to achieve spoken language at the same level as their peers without loss.
Audiologists and paediatric audiology facilities must meet national accreditation requirements covering clinician skill, clinician incentives, data systems and data provision.

The following additional recommendations are also made:

Establishment of a national early-childhood hearing screen to identify permanent hearing loss that develops after birth.
Modification of Medicare schedules to allow bulk-billing of diagnostic audiology by audiologists without a doctor’s referral (with limits of one test per year for children aged up to 7).
A national procurement process be used to source assistive hearing devices at the lowest practical cost, for purchase by accredited paediatric audiology services at the agreed cost for NDIS clients.
NDIS provides funding for paediatric audiology services to support transdisciplinary/interdisciplinary service.
The NDIS payments to include significant loadings to ensure appropriate provision of services to children located in difficult to access locations.
The NDIA immediately implements the recommendations of the Early Intervention (Hearing) Expert Reference Group.
Establishment of a national data centre to support ongoing quality assurance of services and research.

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Context

This submission is provided in the context of the significant changes being planned for the provision of services and support to children with permanent hearing loss (permanent hearing impairment) in Australia, namely:

 the funding of the provision of therapy services and support currently moving to the NDIS (with resulting changes to referral pathways, eligibility criteria and support levels); and  the subsequent transfer of most of the Community Service Obligation placed on Australian Hearing to the NDIS (with the subsequent services being provided by a number of entities on a competitive basis).

These changes offer the potential for improved outcomes for children with permanent hearing loss, but they also put at risk many of the unique features of the hearing services in Australia; and subsequently puts at risk the fantastic outcomes that these children can currently achieve.

This submission focusses on key issues for children with permanent hearing loss and provides recommendations aimed at ensuring that these children are supported to achieve the outcomes necessary so that their hearing loss does not limit their social inclusion and their ability to be productive members of the society.

This submission has been informed by the experience of The Shepherd Centre with the NDIS from initial launch in mid-2013. We have direct experience from the initial roll-outs in the ACT, the Hunter, and the Nepean Blue Mountains; and recently from the full-roll out in NSW. We also have indirect experience from the roll-outs in South Australia, Victoria, Queensland and Western Australia through our First Voice partners in those states.

Overall, the recommendations in this submission arise from the experience of hundreds of children with hearing loss being supported under the NDIS.

The profound impact of early childhood hearing loss Children with early hearing loss face numerous challenges on their road to achieving full social inclusion. This document focusses on children who have a permanent hearing loss (which may be due to sensorineural, conductive, or be mixed in nature; or due to Auditory Neuropathy Spectrum Disorder; and which may affect one or both ears) diagnosed in the first 5 years of life.

Up to 1 in 500 children born will have some degree of permanent hearing loss. Further children will develop hearing loss in the first few years of life (due to progressive loss, disease, trauma, etc) and by the time they are of school age approximately 1 in 300 children will have permanent hearing loss (approximately 4,000 children across Australia). More than 90% of these children are born to parents who use a spoken language in the home and who would normally want their child to speak their home language.

Children diagnosed with hearing loss in both ears (bilateral hearing loss) have been demonstrated to have the most profound deficits in speech, language, literacy and social inclusion. However children with loss in one ear only (unilateral hearing loss or single-sided deafness) also suffer significant impacts. As listening through one year alone is often sufficient when a child is in a quiet environment, these impacts often only become evident once a child is in a challenging auditory environment such as day care or school. However at that time the same impacts as with bilateral loss then often become evident – poor development of language, speech and/or literacy; and poor social inclusion.

As with children with bilateral loss, an early investment into children with unilateral loss also prevents a significantly larger future cost to the child, their family and to society.

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Speech and Language

Speech and language outcomes for children born with permanent childhood hearing loss (PCHL) have historically been compromised (Allen, 1986; Holt, 1994). Late diagnosis of PCHL has been associated with significant delays in speech and language, which has subsequently been associated with delays in literacy development (Francis, Koch, Wyatt, & Niparko, 1999; Lin & Niparko, 2006). For instance, a review in 2008 reported that 67% of deaf children were taught outside of traditional mainstream classes; and historically the average oral and written language age of high school deaf graduates from the United States of America was at or below that of the average hearing seven to eight year old child (Durieux-Smith, Fitzpatrick, & Whittingham, 2008).

In recent years, a positive shift in the speech and language outcomes for children with early identified PCHL has occurred. However, international research data (not that on children graduating from The Shepherd Centre) continues to suggest that the majority of these children are unable to achieve speech and language outcomes commensurate with their typically hearing peers. (e.g., Forli et al., 2011; Niparko et al., 2010; Tait, De Raeve, & Nikolopoulos, 2007). Moreover, the limited research concerning speech development suggests that the acquisition of clear, intelligible speech for this population has been particularly challenging (e.g., Blamey, Barry, & Jacq, 2001).

Literacy

In 1979, Conrad stated that 92% of school leavers with severe-profound hearing loss were unable to achieve reading levels commensurate with their chronological age. For the children with profound PCHL, this figure increased to 99%. An editorial in the Journal of Deaf Studies and Deaf Education in 2007 suggested that 30% of school graduates with severe/profound SNHL were functionally illiterate (Marschark, Archbold, Grimes, & O’Donoghue, 2007). Given the repeated reports of close links between long term literacy outcomes with early speech and language development success (e.g., Overby, Trainin, Smit, Bernthal, & Nelson, 2012; Pennington & Bishop, 2009), these poor literacy outcomes are of significant concern.

Socioeconomic Issues

Socioeconomic problems are well reported for children with severe-profound hearing loss, however the extensive issues documented for people with hearing loss in Australia (Hogan, 2012) indicate the likelihood of effects on children will all levels of loss.

A logical consequence of compromised speech, language and literacy outcomes has been the persistence of substantially unacceptable long term psychosocial problems as well as reduced employment opportunities particularly for those with congenital severe-profound PCHL (Kentish & Mance, 2009; Venail, Vieu, Artieres, Mondain, & Uziel, 2010).

Higher rates of self-reported depression are noted for these children (Theunissen et al., 2011). Parents of children with PCHL report high levels of stress (Meadow-Orlans, 1995) as well as increased marital breakdowns, particularly for those families where children have greater severities of PCHL (Henggeler, Watson, Whelan, & Malone, 1990). Significant delays in speech, language and literacy has been associated with consequent limits to educational, occupational and socio-economic options (Francis et al., 1999; Lin & Niparko, 2006).

Economic reports also identify significant financial burden. For example, according to the Access Economics Report, 2006, costs associated with hearing loss for the Australian economy were approximately $11 billion per annum. These costs include the supply of personnel and equipment associated with diagnosis of hearing loss; ongoing supply and maintenance of paediatric audiological devices (hearing aids and/or cochlear implants); supply of specialised medical personnel, audiologists, and educational facilities/clinicians. Long term lost earnings for individuals with hearing loss was listed as incurring the greatest costs, accounting for more than half (57%) of all financial costs. An analysis of the cost-benefit of

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early intervention for children with hearing loss in Australia demonstrated significant benefits (First Voice, 2011). Governments have thus become progressively motivated to research and access solutions for congenital PCHL, ideally in early childhood, before these expensive long term consequences take effect.

More recently, the improvements to newborn hearing screening, diagnosis, therapy, and use of technologies such as cochlear implantation, has resulted in significant improvements in speech and language outcomes for children with all levels of hearing loss (Forli et al., 2011; Geers & Sedey, 2011; Sininger, Grimes, & Christensen, 2010).

Effects of unilateral or mild hearing loss In decades part support for children with hearing loss was restricted to those with a moderate or worse loss in both ears (normally defined as a loss of more than 40dB in each ear). Children with a hearing loss in one ear (unilateral loss), or children with only a mild loss (21-40dB) were seen as not requiring support.

However extensive research over the last 3 decades has shown that these children do suffer significant functional loss in their communication capacities. This is evident from the first few months of life, where over 40% babies of around 9 months of age with unilateral loss had delays in babbling, an important developmental step for spoken language (Kishon-Rabin, 2015). This then leads on to significantly worse speech language scores in children and adolescents (Lieu et. al., 2010; Fisher & Lieu, 2014) and results in significant problems at school (Lieu, 2013).

A review of the literature on the effects of unilateral hearing loss (Krishnan & Van Hyfte, 2016) found that these children had:

 reduced spoken language competence (25-40% with poorer speech & language skills of a wide variety of domains);  potentially reduced cognitive ability (lower performance on complex verbal IQ tasks);  reduced educational progress (22-40% needed to repeat a grade at school and 41-54% required an individual education plan to support their learning); and  poorer social & behavioural development (20-33% with behavioural problems, continuing into adulthood)

Given the dramatic adverse life outcomes that can arise from all levels of childhood hearing loss, it is absolutely critical that all of these children are provided with the required specialised supports in a timely, effective and accessible way.

Critical aspects of support for children with hearing loss Our brains have specialised areas for the processing of sound. These specialised areas are active from about half-way through pregnancy, so that a mid-term baby will start reacting to noise and by the time of birth they will already have a preference for the language and accent of their mother. The baby’s ability to discern and interpret subtle sounds and tones continues to improve as they develop over the first few years of their life. This continually improving ability is critical for the baby to be able to learn a spoken language.

However the specialised parts of the brain will not develop and will actually regress if a child does not quickly receive sufficient high-quality auditory stimulation. In time the child’s ability to ever understand sound may be effectively lost. This process of ‘use it or lose it’ is a key part of neuroplasticity, where the baby’s brain is remodelling itself to maximise its abilities in the areas that are critical to it, whilst divesting itself of capabilities that aren’t being used.

As a result of this dramatic process, newborn hearing loss has been referred to as a neurological emergency and it can be thought of as a slow-motion stroke. If a child can’t hear complex and useful sounds during their first few years of life their brain will eventually lose the ability to even process sound. Once this ability is lost it is incredibly difficult to ever recover it.

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Minimising the time from onset of loss through to receiving high-quality auditory stimulation (from the combination of an appropriate hearing device and appropriate early intervention) is critical for the successful support of a child with hearing loss. This delay must be kept as short as possible and should be a maximum of 6 months.

Excellent outcomes for children with hearing loss – the achievement of spoken language at the same level as if the child did not have a loss – are possible if all of the following occur:

Early detection and diagnosis A child must have its hearing loss diagnosed rapidly to enable the subsequent support to be able to be provided within the required timeframe. Across Australia the introduction of universal newborn hearing screening has meant that over 90% of children born with a hearing loss are diagnosed within the first few months of life. In contrast, there is no national approach for the detection and diagnosis of hearing loss developing after birth. As a result the diagnosis of these children is delayed and they are often not picked up until they are having problems at school.
Rapid provision of services Following diagnosis the child must be rapidly referred to the specialised facilities and clinicians that are required. Direct referral pathways (without intervening steps) and active follow-up (to ensure at-risk families don’t fail to attend) are critical for success. The structured pathway established prior to the NDIS resulted in over 90% of children diagnosed at birth being seen by Australian Hearing. However a standardised process was not established for children diagnosed after birth.

The NDIS has recently introduced its ‘Early Childhood Early Intervention’ approach which has introduced an extra 5 steps between the diagnosis of hearing loss and the provision of specialised service (Appendix 2: Referral pathways, page 40).

Optimised access to sound High-quality access to sound for a child with a hearing loss requires the child to be provided with the correct devices (specialised hearing aids, cochlear implants, etc), along with management of the devices, child education and carer education. This process is very different in young children than it is with adults, requiring audiologists with specialist paediatric training and specialist facilities.

Poorly fitted hearing devices will result in lower-quality sound input for the child. Without optimal access to sound it is incredibly difficult for the child to learn to produce clear speech – ‘muddy in, muddy out’.

Specialised early intervention through the child’s caregivers Even with the best hearing devices available, the sound that children can access is not equivalent to what they would normally hear. This is due to both the quantity and quality of sound they receive. Children with ‘normal’ hearing are listening 24/7 – even when they are asleep they are perceiving sound and their brains are being stimulated. In contrast children with aids will normally only have them on for a maximum of 12 hours a day (due to taking them off during bathing, sleep, etc).

In addition, even the best devices do not match normal hearing – for example the outstanding cochlear implants produced in Australia, seen as the best in the world, only stimulate 22 separate regions in the cochlear (the part of the inner ear that detects sound and converts it into nerve impulses). This can be imagined as replacing a piano with thousands of keys (normal hearing) with one that only has 22 (the implant) and then requiring the pianist to try and reproduce the music of the original. It can be done, but it requires superb skill and a lot of effort.

As a result it is imperative that every opportunity is taken every day to practice the child’s listening and language abilities. Normal exposure to sounds and language is not sufficient for a child with hearing loss to develop their language potential. Daily intense and individual therapy must be

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provided – which is only feasible and is best provided through the child’s parents or caregivers, not through a therapist. As a result the parents must be taught, practised and supported in the specialised approaches they need to use to enable their child to develop spoken language in their natural environment. This requires a specialised, integrated transdisciplinary/interdisciplinary service that incorporates clinicians who have specialist knowledge in paediatric audiology, listening & spoken language, and emotional support.

As a substantial part of the clinician’s work is individualised adult education, the level of support required for a child with a mild or moderate hearing loss is not substantially less than the level of support required with a severe or profound loss (the same level of adult education is required for the parents regardless of the child’s level of loss).

Ongoing support for the child and the caregivers The listening and language skills of a child naturally change as they develop, which requires adaptation of the listening and language interventions that the parents need to provide. In addition the hearing loss impacts on the development of normal social skills by the child and additional support is required to assist with this. As a result, support over all of the early years of life is required for the multiple challenges and transitions that these children face due to their disability.

These and other critical features of services supporting children with hearing loss are laid out in the “Best

practices in Family-Centred Early Intervention for Children Who Are Deaf or Hard of Hearing: An

International Consensus Statement”, Moeller et al (2013).

Outstanding outcomes are possible Despite the challenges detailed above, and in contrast to the experience of the vast majority of children with hearing loss around the globe (as detailed in the published literature), it is feasible for children with hearing loss to routinely achieve spoken language at the same level as children without any loss.

This is demonstrated by the outcomes achieved by children attending the early intervention program at The Shepherd Centre. These children, with all levels of hearing loss (including being profoundly deaf) and many with other disabilities or complications, typically develop the same level of language as their normally-hearing peers, with over 90% of children going on to a mainstream class in a mainstream school.

The children graduating from The Shepherd Centre achieved the same language as children without loss.

The following graph depicts the language of the children completing The Shepherd Centre early intervention program in 2015 (going on to school in 2016).

Three critical areas of spoken language are displayed (formal language skills, vocabulary and speech clarity), with the achievements of the graduates shown by the box & whiskers, compared to the normal range of children without hearing loss (blue shaded area). In each panel the results are shown for the children without any additional disabilities or other complications (‘standard’, which are about one-third of the children; left side) and also the results across all of the children (including those with multiple disabilities, coming from a non-English speaking background, delayed diagnosis, etc; right side):

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These outcomes are attributable to a specialised, integrated transdisciplinary/interdisciplinary service that provides:

 Rapid provision of services, within a few months of diagnosis;  Optimising access to sound for the child through management of hearing devices, child education and carer education;  Teaching the child’s caregivers the specialised approaches needed for them to enable their child to develop spoken language in the child’s natural environments; and  Supporting the child and the caregivers though the multiple challenges and transitions that these children face due to their disability.

Some of these services can be delivered through interaction with a single clinician and through face-to-face service. However, the poor outcomes from services that only provide single-clinician and face-to-face service demonstrates that specialised integrated interdisciplinary/transdisciplinary services are required to deliver the required outcomes. Success is critically dependent on other elements including:

 Provision of caregiver training outside of face-to-face sessions (such as through offline materials or online eLearning);  Tracking of assessments of individual children versus program norms and development of individualised intervention programs;  Refinement and implementation of specific interventions for each child based on their individual progress and circumstances; and  Provision of extensive caregiver support and discussion channels to enable them to be effective language therapists in the child’s natural environment.

These additional activities are essential within the clinical program, however they add an additional 2 hours of professional time for every hour of face-to-face intervention. Further details on this clinical program is provided in Appendix 1: Outline of The Shepherd Centre Early Intervention service, page 32.

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The ongoing benefit that children receive from participation in a specialised, integrated transdisciplinary/interdisciplinary program such as The Shepherd Centre’s is demonstrated by the outcomes of children as they transition from high school to adult life. A survey of graduates from the programs of the First Voice centres (First Voice, 2016), which includes The Shepherd Centre along with 5 other centres with similar programs, showed outstanding results.

The respondents to this survey, children who graduated from these early intervention programs and were now aged 18-28 years, had academic and employment outcomes in line with those reported for mainstream young adults Australia (95% attending a mainstream high school; 82% accepted into tertiary education; and 77% in employment).

These findings contrast dramatically with the outcomes of children with hearing loss in the UK, where the number of children not achieving 5 GCSEs of at least grade C is almost double that of children without special education needs – 58.9% versus 35.8% (NDCS, 2016).

International experience also demonstrates that specialised services are able to deliver outcomes that other services do not (Yoshinaga-Itano, 2015). The importance of early provision of services, as quickly as possible after the emergence of the hearing loss, is emphasised by the Joint Committee on Infant Hearing (2007) which emphasised the need for intervention to be provided by 6 months of age.

This critical importance of rapid action is shown by the impact of any delay of cochlear implantation for children with congenital deafness. The largest prospective study of children with hearing loss, the Longitudinal Outcomes of Children with Hearing Impairment (LOCHI) study found any delay of implantation after six months of age results in progressively poorer language outcomes (Ching, 2015). This is emphasised by the outcomes found by infants within The Shepherd Centre early intervention program, with language ability of profoundly deaf infants who receive their cochlear implants early (before 6 months of age) being much better than those for children implanted later:

The outcomes of the children with hearing loss (and implanted either before 6 months; between 6 and 12 months; or 13 months and over) are shown by the box and whiskers, compared to the normal language range for children without hearing loss, shown by the blue shaded area.

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Responses to the inquiry’s Terms of Reference

a. The eligibility criteria for determining access to, and service needs of, deaf and hearing impaired people under the NDIS The NDIS is founded on the principal of supporting people who have a permanent disability that does (or, for early intervention, will), limit their functional capacity to undertake communication, social interaction, learning, mobility, self‑care or self‑management. People eligible under the NDIS are to be provided with the reasonable and necessary supports that will assist them to pursue their goals and to facilitate social and economic participation (subject to the support representing value for money in that the costs of the support are reasonable, relative to both the benefits achieved and the cost of alternative support).

As outlined under The profound impact of early childhood hearing loss (page 6), children with any degree of hearing loss from birth clearly meet the definition of reduced functional capacity. Left untreated, the impact of the loss (the reduction in functional capacity) is proportional to the level of loss, with children having mild or unilateral loss having more slowly developing and less severe consequences that children with bilateral profound loss.

However, even children born with a mild hearing loss, or a loss affecting only one ear, are at high risk of developing communication, educational and social delays once they enter school. Once these deficits are apparent the children would then be eligible under the NDIS. However, it would be a false economy to not provide expert early support to these children, only for them to fall behind and then having to subsequently receive much greater support to try and help them catch up. Unfortunately this is the current situation – some children with unilateral loss or with mild bilateral loss are being denied NDIS access, not due to their functional need but solely due to an arbitrary audiological measure.

As a result it is critical that all children developing permanent hearing loss prior to age 6 (defined as a diagnosed permanent hearing loss of 21dB or greater, averaged over 3 or more frequencies, in one or both ears; including hearing loss due to Auditory Neuropathy Spectrum Disorder) are eligible for early intervention services under the NDIS. The scale of such supports would then be proportional to their current or expected reduction in functional capacity due to their hearing loss (as outlined in The adequacy of funding for hearing services under the NDIS, page 18). The benefits that flow from specialised support, and the lack of any cheaper alternative that can provide these benefits, is demonstrated in Outstanding outcomes are possible, page 10.

If children first develop permanent hearing loss after age 6 they will already have had the opportunity to develop an excellent foundation for normal language development. As a result children aged from 6 to 16 only require eligibility for early intervention services under the NDIS if they have bilateral hearing loss of a moderate or worse level (defined as a diagnosed permanent hearing loss of 41dB or greater, averaged over 3 or more frequencies, in both ears; including hearing loss due to Auditory Neuropathy Spectrum Disorder).

In additional to early intervention services, children with hearing loss also require hearing devices to improve their access to sound. As with the current practice of Australian Hearing under their Community Service Obligations, all children with diagnosed permanent hearing loss of 21dB or greater should be eligible for hearing devices.

Recommendation 1. All children developing permanent hearing loss prior to age 6 are to be eligible for early intervention services under the NDIS.

Recommendation 2. All children between age 6 and 16 developing moderate bilateral permanent hearing loss are to be eligible for early intervention services under the NDIS.

Recommendation 3. All children developing permanent hearing loss are to be eligible for hearing devices under the NDIS.

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b. Delays in receiving services, with particular emphasis on early intervention services Over 90% of families who have a child born with hearing loss have no previous experience with childhood deafness. As a result they are completely uninformed at a time when they are also often in shock, grieving and already coping with a newborn child.

Due to the need for urgent action to enable the development of a good language (either spoken or signed), appropriate options must be chosen very early for a child with hearing loss, with rapid action once the appropriate option has been taken. Without appropriate guidance, parents will not have the knowledge to make the informed choices that would make possible the outcomes they wish for their child. A guided referral pathway is required so that parents are provided with the information and options they need for their child to achieve the outcomes they want.

Specialised services must commence when the child is very young and can’t be delayed until funding is available. A baby’s brain is adapted to detect sounds from half way through pregnancy onward. However, if the specialised brain area (the auditory cortex) is not stimulated by complex and interesting auditory signals then it will progressively deactivate (the concept of ‘use it or lose it’). This starts occurring during the first six months after birth and the negative effects are progressively worse the longer the baby is left without the ability to listen. This results in the internationally recognised requirement that children get hearing devices and specialised early intervention commencing by 6 months of age.

The effect of this is dramatically demonstrated by the language ability of profoundly deaf infants who receive their cochlear implants early (before 6 months of age) compared to later:

This clearly demonstrates that services must provide therapy from as early in a child’s life as possible.

The referral pathway that has previously existed for children with hearing loss has been recently been modified by the introduction of the Early Childhood Early Intervention approach by the NDIS, is detailed in Appendix 2: Referral pathways (page 40). The new pathway is:

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Identification
Diagnosis Extra 1

Extra 2

Extra 5                   Extra 4                   Extra 3

4. Australian Hearing 5. Specialised Intervention This new Early Childhood Early Intervention pathway adds 5 extra steps to be completed by a non specialist Access Partner. The potential delays involved in this puts at risk the success of any subsequent supports provided to the child.

Even prior to the introduction of this new pathway, the processes of the NDIS were resulting in many months of delay from when service commences through to when NDIS funding starts. This is demonstrated by the experience of The Shepherd Centre in the ACT:

The risk of catastrophic delays to service from a combination of these factors is clear.

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These delays arising from the NDIS are sufficient to cause significant negative effects on children’s language. Based on the results from the LOCHI data (Ching, 2015), these impairments caused by the NDIS may be permanent.

This need for a guided referral pathway (that ensures children receive appropriate service as early as possible) has been recognised by a number of Australian states and territories, which established dedicated services that guided the referral of these diagnosed children into the specialised early intervention service of the family’s choice (this service is absent in NSW, the ACT, Tasmania and the Northern Territory). With the introduction of the NDIS, the continuation of these services may be at risk.

The need for such a service is emphasised by the experience in NSW, where despite two large and very active specialist services (The Shepherd Centre and the Royal Institute for Deaf & Blind Children) less than 50% of the children being supported by Australian Hearing for their hearing loss are in a specialised, integrated transdisciplinary/interdisciplinary service.

In addition to the above issues, a further national problem is the absence of a uniform process for detecting hearing loss that develops between birth and school age (more children develop loss during this time than the number born hearing impaired). This loss may be due to a progressive deterioration in their hearing, or such things as disease or trauma.

These children are not being detected promptly as there is no national approach to identifying these children prior to school entry, leading to major issues during the first years at school. Some jurisdictions (such as the ACT) have developed their own early childhood system, however this is not in a manner suitable for national implementation.

A national approach is required to identify early childhood hearing loss.

Given all of the above issues, a series of approaches is required to ensure that there is a minimum of delay between the emergence of permanent hearing loss and the provision of appropriate services. These approaches need to provide for:

A guided referral pathway (such as within the NDIS, or potentially subcontracted) which would receive all of the referrals following diagnosis of hearing loss in children. The diagnosis, along with other relevant information, would be used to screen against the eligibility criteria for NDIS support. Families of eligible children would then be supported to ensure they rapidly obtain the required services from appropriate organisations, based on parent choice. The pathway would collect the standard demographic and audiological data on the diagnosed children; along with the NDIS identifier for those children eligible for the NDIS.

Based on the existing models of referral services it is likely that a total of approximately 20 FTE would be required (including any State staff) to provide a national guided referral pathway including a national coordination service, at an annual cost of approximately $3 million.

Establishment of a national early-childhood hearing screen to identify permanent hearing loss that develops after birth. Given the national focus on the high uptake of early childhood education, a clear possibility for hearing screening would be at entry into this system.

With a total of 300,000 children in Australia aged 4, the potential cost of a screening service could be up to $8 million per year (assuming use of a screening app along the lines of Sound Scouts http://www.soundscouts.com.au with administration in a controlled way, with payment of $20 to the early education provider per completed test, with an additional 25% on-cost allocation for screening program management and quality assurance).

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 16 of 45

Diagnosis following screening via self-referral to a suitably qualified paediatric audiologist with bulk-billing to Medicare. The current publicly-funded diagnostic audiology services are overwhelmed, with waiting lists of many months.

If the Medicare schedules were amended to allow bulk-billing of diagnostic audiology by audiologists without a doctor’s referral (with limits of one test per year children aged up to 7; equivalent to the vision check currently funded under Medicare, however with age restrictions), the annual cost for an additional 25,000 diagnostic assessments would be approximately $4 million (based on a Medicare rebate of $163).

Recommendation 4. Establishment of a guided referral pathway, funded by the NDIS, for children diagnosed with permanent hearing loss prior to 6 years of age.

Recommendation 5. Establishment of a national early-childhood hearing screen to identify permanent hearing loss that develops after birth.

Recommendation 6. Modification of Medicare schedules to allow bulk-billing of diagnostic audiology by audiologists without a doctor’s referral (with limits of one test per year for children aged up to 7).

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c. The adequacy of funding for hearing services under the NDIS Under current arrangements, the NDIS is to fund services being provided to children with hearing loss, whilst their devices continue to be provided under existing mechanisms (with hearing implants and their surgical management provided by State & Territory health; and hearing aids plus the support of all hearing devices provided through Australian Hearing).

The potential outcomes that children with hearing loss are able to achieve is completely dependent on the nature and amount of the services and the devices that are funded. Provision of services alone, or of devices alone, is insufficient for children to be able to develop age-appropriate language.

Funding for early intervention services

So far the NDIS has not established any protocols for the support of children with hearing loss. An Early Childhood Intervention (hearing loss) expert reference group was established by the NDIA in 2014 to develop the reference packages required to ensure that children with hearing loss receive plans that are appropriate to them. However this group has only been called to meet three times over two years (the third meeting of the group was held on the 24th January 2017) and no guidelines or reference packages have been produced.

As a result of the lack of reference packages, children across Australia who have been transferred to the NDIS have received widely varying and normally totally inadequate funding packages. All varieties of services are being supported (including sole practitioners that are unable to provide the collaborative teamwork practice needed for good outcomes); significant delays to funding of service are common (averaging about 6 months); and eligibility assessment is inconsistent with some children with permanent hearing loss being denied any support.

Overall the effective funding provided by the NDIS often covers less than 50% of the cost of the services these children need to achieve age-appropriate outcomes.

These problems are extremely severe and acute. If allowed to continue, they will prevent children from being able to achieve the outcomes that their families and society can currently expect.

The expert, intense and transdisciplinary/interdisciplinary service that is required to enable these children to achieve age-appropriate language can cost up to $25,000 per child per year compared to the normal limit to early intervention funding from the NDIS of up to approximately $16,000 per year. Even this funding is not being maintained, with average funding for children with hearing loss moving to approximately $12,000. However, if appropriate funding is provided these children can achieve language and other outcomes at the same level as children with typical hearing (depending on the presence of other disabilities affecting language, etc). Funding below this level will result in poorer outcomes and increased longer-term cost.

Children with permanent hearing loss need a specialised, integrated transdisciplinary/interdisciplinary service to achieve good language outcomes. Historically, children with hearing loss have been far behind their hearing peers in language, social inclusion and economic participation. This has resulted in large financial costs to the family, the individual child and to society. Traditional therapy does not overcome these issues and this has been well published.

The benefits that flow from appropriately funded specialised support, and the lack of any cheaper alternative that can provide these benefits, is demonstrated in Outstanding outcomes are possible, page 10. Funding of these specialised transdisciplinary/interdisciplinary services at an appropriate level clearly fits the criteria legislated for the NDIS to fund Early Intervention.

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The successful specialised, integrated transdisciplinary/interdisciplinary services that are able to achieve good spoken language outcomes do so by integrating:

A. Optimising access to sound for the child through management of hearing devices, child education and carer education;

B. Teaching the child’s caregivers the specialised approaches needed for them to enable their child to develop spoken language in the child’s natural environments; and

C. Supporting the child and the caregivers though the multiple challenges and transitions that these children face due to their disability.

Some of these services are delivered through face-to-face interaction with a single clinician in a transdisciplinary-type model. However, the poor outcomes from services that only have the face-to-face component demonstrates it is not sufficient to deliver the required outcomes. Success is critically dependent on numerous non-face-to-face elements including:

 Training and mentoring of the staff providing service to the families (for instance, all our clinicians undergo extensive professional development on the job to ensure they can implement the appropriate evidence-based therapy);  Provision of caregiver training outside of face-to-face sessions (such as through offline materials or online eLearning);  Tracking of assessments of individual children versus program norms and development of individualised intervention programs;  Refinement and design of specific interventions for each child based on their individual progress and circumstances, including specific session design for each intervention along with individual evaluation and follow-up;  Provision of extensive caregiver support and discussion channels to enable them to be effective language therapists in the child’s natural environment;  Provision of caregiver training outside of face-to-face sessions (such as through offline materials or online eLearning);  Ongoing review of assessments of individual children versus program norms and subsequent development of the individualised intervention programs;  Case conferences between the clinicians within the EI service supporting a child to ensure all aspects of the child’s clinical care are integrated and synthesised;  Case conferences with the external clinicians and stakeholders also supporting a child to ensure all are informed of each other’s goals and activities so that they do not conflict (and are preferably integrated; such as with Australian Hearing, day-care or preschool staff, etc);  Development and use of the IT and analysis systems required to track the progress of individual children and ensure all are being supported appropriately;  Development and use of the quality assurance and feedback mechanisms to support the rights of the child and family (as per the Disability Service Standards); and  Use, analysis and follow-up of electronic tools such as LENA (an electronic system that records the child’s language environment for 24 hours so we can review their exposure and use of language in their home and natural environment, which then changes the therapy the parents provide).

The implementation of these elements enables the children to achieve good outcomes, however they also increase the cost of the program versus a program based on face-to-face delivery. Overall clinicians need to spend at least an extra 2 hours in non-face to face work for every hour spent in session.

National Australian experience, across numerous services, has demonstrated that an average expenditure of almost $20,000 per child per year is required. This is demonstrated by the following three First Voice Centres:

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 19 of 45

Cora Barclay Hear & Say TSC

(SA)           (Qld)    (NSW & ACT)

High Intensity Package         $17,500       $20,900      $21,500

Medium Intensity Package      $10,100       $15,800      $16,500

Low Intensity Package          $7,200       $12,500       $9,500

These costs are for the hearing loss-specific services. They are in addition to the cost of any services that are required for additional disabilities that a child may have.

However, the required funding is not being provided for an increasing number of children with NDIS plans:

TSC                  ACT: 2014   ACT: 2015  ACT: 2016  NSW: 2016

Number of plans          9          22        23         4

Average quote         $16,011     $16,155    $17,981     $20,187

Average NDIS plan     $16,011     $16,096    $15,516     $10,551

% plans with gaps      0%       5%      52%      100%

Average gap value                  $1,294     $4,865      $9,636

The per-child gap in NDIS packages is progressively increasing and will reach approximately $10,000 per child.

In addition, the NDIS is causing a dramatic increase in the number of children seeking service, in states that haven’t had a structured referral pathway (NSW, ACT, Tasmania, NT). This is occurring due to the increased awareness of the need for services and the availability of services. This is demonstrated by the experience of The Shepherd Centre, with the following graph showing the cumulative number of new children being added to the TSC program (new enrolments less any departures) in 2016 versus 2015:

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 20 of 45

Based on experience to date, we expect that the number of children supported across NSW and ACT under the NDIS will be double that supported under the rationed State system.

The combined effects of increased number of children, the delay from service to funding commencement, and the shortfall in funding per child, result in a major financial loss to services. On current trends, our funding shortfall at The Shepherd Centre on a per-child basis will be in excess of $10,000. If the 5 months delay to funding is added in (as an average over 4 years of service), the gap would become $12,000 per year.

For the current 260 children that TSC currently has in EI that equates to a total shortfall of $2.6 million to $3.1 million. With the 520 children that we should have we would have a shortfall of $5.2 million to $6.2 million. All of these are beyond the capability of the organisation to cope with.

Increased funding packages must be set now to prevent services collapsing.

The current low & insufficient NDIS payments will prevent the current outcomes from being delivered in future – every service that is able to achieve these outcomes is only able to do so with a costly specialised, integrated transdisciplinary/interdisciplinary service.

In the absence of NDIS reference packages, the attached protocol (Appendix 3: Proposed protocol for NDIS EI support for children with permanent hearing loss, page 43), has been proposed to the NDIA for adoption. The protocol defines the level of service that would be funded for each child, based on diagnosis and need, along with specification of the other features that are needed.

The key elements of the proposed protocol are:

All children with all levels of permanent hearing loss are eligible for support, with scaled funding depending on need:  Low - $12,000 per annum  Medium - $16,000 per annum  High - $21,000 per annum
Services eligible for funding must meet required quality standards including breadth of support program, support in addition to face-to-face hours, and compliance with minimal outcome measures.
Funding for additional services beyond the core program is provided in addition to the standard funding, such as for any other additional disabilities, etc.

Immediate adoption of the attached protocol (or an equivalent one), is requested to ensure that children with hearing loss can continue to achieve spoken language at the same level as their peers without loss.

Across Australia, there are approximately 4,000 children aged 0-6 with permanent childhood hearing loss, an estimate based on the fitting figures from Australian Hearing and supported by the analysis of the NDIA. This number is constant based on the population size and will not increase. The Shepherd Centre estimates that of these children:

 25% would probably not engage with a funded service;  30% would be eligible for a ‘low’ package;  25% would be eligible for a ‘medium’ package; and  20% would be eligible for a ‘high’ package.

Given this, the attached protocol would require a total annual funding of approximately $47 million.

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Funding for the purchase and fitting of hearing devices

Currently Australian Hearing currently sources the paediatric hearing aids it uses via tender with a sole primary manufacturer and is able to secure excellent prices this way, as this tender is one of the largest globally.

Under the NDIS it has been proposed to simply offer a set price for each level of aid, based on the current prices. However this is not feasible, as under the divided market of contestability no provider will have the purchasing power to actually acquire aids at the same price as achieved under a bulk tender. As a result this proposal would result in the cost of aids to government increasing significantly.

To maintain the current low price a national procurement service would be required (along the lines of the existing Australian Hearing tender) to source assistive hearing devices at the lowest practical cost. Accredited paediatric audiology services may then purchase those devices at the agreed cost for NDIS clients.

The NDIS price list should also include payment for audiologists from accredited paediatric services to participate in transdisciplinary/interdisciplinary services for children receiving a NDIS-funded early intervention package (such as attendance at cross-disciplinary service planning, coordination meetings and education of other specialists). The level of payment should be designed so as to be revenue-neutral for the clinician to participate in the service, versus a direct clinical appointment.

Recommendation 7. Adoption of the appended ‘Protocol for NDIS EI support for children with permanent hearing loss’ (or an equivalent, page 43) to ensure that children with hearing loss can continue to achieve spoken language at the same level as their peers without loss.

Recommendation 8. A national procurement process be used to source assistive hearing devices at the lowest practical cost, for purchase by accredited paediatric audiology services at the agreed cost for NDIS clients.

Recommendation 9. NDIS provides funding for paediatric audiology services to support transdisciplinary/interdisciplinary service.

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d. The accessibility of hearing services, including in rural and remote areas The provision of specialist hearing services to children with hearing loss in regional, rural and remote areas is challenged by the inability to locate the appropriate specialised staff, facilities and services in all locations. The NDIS currently provides support towards this by paying a loading for services located in outer regional or remote locations, but this does not address the issue that where the population density is low and where the incidence of a condition is also low, there are insufficient potential clients within a geographic area to support a specialised service. This is the situation for children with hearing loss.

However access to appropriate facilities does not require the ongoing physical presence of these services. Particularly with the development of eHealth-type approaches, excellent services can be provided to children located in remote locations. These alternative service delivery methodologies do incur an increased cost, however this can be addressed by a similar loading as for remotely-located services.

Alternative service delivery methodologies include:

Teleintervention and online provision of the same services as those provided in metropolitan locations (with the NDIS paying a remote loading to the service provider for the additional costs incurred; and also covering the increased network access costs of the recipient). This service is well established in all of the specialised EI services for children with hearing loss but NDIS funding is not established.
Periodic visits of services to regional centres for coordinated intensive service provision to a number of recipients (with the NDIS paying a travel loading to the service provider for the non billable travel hours incurred; and also covering the travel costs of the recipients). This visiting service model is well established in all of the specialised EI services for children with hearing loss but NDIS funding is not established.
Periodic visits of families and children to access services in metropolitan areas for coordinated intensive service provision (with the NDIS paying a coordination loading to the service provider for the extra non-billable coordination hours incurred; and also covering the travel costs of the recipients). This visiting recipient model is well established in all of the specialised EI services for children with hearing loss but NDIS funding is not established.
Establishment of one-off or ongoing professional linkages between existing local services in rural and remote locations (eg health clinics, speech pathologists, etc) and specialised services to provide an integrated care model with the existing service providing the face-to-face interaction with the specialist service provided in-session and out-of-session support through teleintervention, ongoing training and consulting support (with the NDIS paying a coordination loading to the service provider for direct service time and the extra non-billable coordination hours incurred; and also covering the face-to-face time of the existing local services). This integrated model is not as well established as the other service delivery methodologies described here.

The costs and benefits of approaches 1 and 4 above will improve with ongoing research and service development in these areas.

The NDIS needs to include the additional payments as above for services provided to children in specified geographic markets.

Recommendation 10. The NDIS payments to include significant loadings to ensure appropriate provision of services to children located in difficult to access locations.

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e. The principle of choice of hearing service provider The importance of personal choice is embedded into the design of the NDIS. In addition to offering the ability for people to choose the provider which suits them best, choice also provides for the stimulus of competition to improve the range and quality of services that are on offer.

These advantages apply to children with hearing loss as much as they do in other areas. This is demonstrated by the improvements in therapy services that have arisen where families have a choice of service provider; and in the improvements in cochlear implant services in those areas where more than one supplier is active. It should be noted that inappropriate choice can have negative effects – such as when a family mistakenly chooses a provider that cannot deliver the outcomes they desire for their child (as below) or when they try and divide an integrated service to receive parts from different providers (with the resulting lack of coordination reducing the effectiveness of each part of the service).

Parents of children with hearing loss must be supported so that they can make an informed choice for their children. As the vast majority of parents do not have prior experience with childhood hearing loss, they require expert assistance in selecting the services and aids that are most likely to fulfil their goals for their child, which is normally to be able to be fluent in the home language (whether that be a spoken or signed language) and to be able to reach their potential in society.

Currently families of children with hearing loss do have choice in their provider of early intervention service but they do not have choice in their provider of hearing aid supply or support (which is restricted to Australian Hearing). The provision of choice for hearing aid supplier would enable:

 The development of integrated services incorporating both the provision of early intervention services and hearing aids (the clinical benefits arising from this have been demonstrated by the programs offering cochlear implants integrated into early intervention services; versus stand-alone implant services and stand-alone EI services); and  Competition between providers to innovate to offer the best and most attractive hearing aid services to families.

However this choice will also come with a very high level of risk. Choice is only of advantage if it is informed; and the vast majority of parents of children with hearing loss are not informed about hearing loss, hearing aids, or how to best achieve language for a child with a hearing loss. They have no personal experience of hearing loss or of aids and they cannot determine from their baby whether their child is gaining the benefit they hope for from the choices they make. As a result parents are under huge pressure to do everything they can for their child, which could be exploited by unscrupulous service providers.

Paediatric audiology is very different than service to adults or teenagers and requires different facilities and equipment as well as specialised skills (a baby can’t press a red button depending on whether they hear a beep!). Families of children with hearing loss rely on the expertise and independence of their paediatric audiologist, however there is currently no way to certify the appropriateness of individuals or facilities to provide paediatric audiology.

The transition of the services from Australian Hearing to a contestable market could affect all of:

The referral pathway and the number of children lost to follow-up;

The cost of the hearing aids provided; and

The accessibility, quality and independence of the audiological services.

The referral pathway and the cost of aids have been addressed in previous parts of this submission (response to Delays in receiving services, with particular emphasis on early intervention services, page 14; and response to The adequacy of funding for hearing services under the NDIS, page 18).

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The accessibility, professionalism and independence of paediatric audiology under a contestable market is of major concern. Because of Australian Hearing’s central role and professional self-regulation, it is able to ensure that it is able to offer a consistent high-quality and independent services across Australia, along with collection of data on that service to enable national planning and evaluation.

There are a number of concerns with a potential contestable market:

The experience of the contestable adult market has shown that providers prefer to service locations where the consumers have the highest disposable income and where they will have lower operating and travel costs. Australian Hearing can cross-subside locations to ensure equity of access across Australia, however this would have to be explicitly built in to a contestable market.
In the adult market, providers have a strong financial incentive to induce people to pay more to obtain upgraded hearing devices, that may not clinically offer significant advantage. Audiologists receive substantial incentive payments to convince their clients to pay for these optional upgrades. If this financial incentive existed when supplying devices for children, where parents were unable to assess the clinical benefit and where they would always want the best for their child, there would be an unacceptable risk of exploitation.
Many audiologists may want to provide services to the paediatric market without having appropriate expertise or facilities. It is impossible for a parent to be able to assess the capabilities of an audiology practice, and by the time any issues were evident the child involved would have suffered irreversible effects.
The effectiveness of paediatric audiology can only be assessed in the long term, with the progressive development of language, and the need for this information will become more critical with the fragmentation of the market. These long term statistics are currently made possible through Australian Hearing however competitors will not be willing to provide this to them. An alternate centre for national data collection is required.

Given this, the NDIS must only fund paediatric audiology services from providers which have been demonstrated to have the appropriate expertise and facilities, along with mechanisms to prevent staff from receiving incentives to encourage ‘top-up’ purchases by families.

An accreditation system must be established to identify the organisations that will be allowed to provide paediatric audiology services funded under the NDIS. That accreditation process would need to include:

 Clinicians working with children below 5 must have specialist skill (with the criteria to be established by Audiology Australia; including criteria for registering & maintaining specialist status)  Clinicians working with children must not receive any part of their remuneration based on the sales value of the assistive hearing devices they provide or prescribe  Mandatory use of systems that collect and collate standard information; including audiologic assessment information (detection, discrimination & identification) on children before and after fitting of assistive hearing devices  Mandatory provision of this standard information to a national data centre along with the authority to publicly identify the individual paediatric audiology service (but not any client) in the analysis of the results

In addition to controlling the quality and impartiality of audiology services, the NDIS should also only fund early childhood intervention for hearing loss from providers which have been demonstrated to have the appropriate expertise and abilities. This is included in Appendix 3: Proposed protocol for NDIS EI support for children with permanent hearing loss, page 43.

Recommendation 11. Audiologists and paediatric audiology facilities must meet national accreditation requirements covering clinician skill, clinician incentives, data systems and data provision.

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f. The liaison with key stakeholders in the design of NDIS hearing services, particularly in the development of reference packages Despite the issue of insufficient funding to achieve outcomes being formally raised with the Joint Parliamentary Standing Committee on the NDIS over 2 years ago, and with the NDIA providing assurances to the Committee at that time that there were no arbitrary caps on service, that issue continues.

Many of the organisations responsible for the support of children with hearing loss, including The Shepherd Centre, have been attempting to appropriately support the NDIS since its development. However the NDIA hasn’t put in a place an appropriate process that draws on the existing expertise in childhood hearing services. The consultation processes that have occurred have been neither transparent nor accountable, despite the best efforts of the individuals involved from the NDIA.

Representatives form specialist early intervention services have been well represented on the NDIA’s Early Intervention (Hearing) Expert Reference Group. However the group has met infrequently and there have not been any outcomes produced.

Expert stakeholders including The Shepherd Centre have also made many representations (written, face-to face, phone/email) to the NDIA outside of this expert reference group with no actions forthcoming.

The NDIA staff have been consistently professional and responsive. However despite ongoing dialogue there has been no change to the fundamental issues with the NDIS service and funding framework being applied to childhood hearing services.

The situation is currently putting at risk the life options possible for thousands of young children across Australia. Appropriate decisions must be enacted now so that these children can receive the services and support they require.

Recommendation 12. The NDIA immediately implements the recommendations of the Early Intervention (Hearing) Expert Reference Group.

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g. Investment in research and innovation in hearing services With the current central role of Australian Hearing in the provision of hearing aids to children, there is the opportunity to collate national statistics which are critical to monitor the hearing health of young Australians. In addition, the National Acoustic Laboratories (within Australian Hearing) are a centre of excellence that have driven the development of many of the advances that have supported the hearing of Australians.

Both of these possibilities are put at risk with the proposed changes to the role of Australian Hearing.

In additional, the importance of national research into hearing is more important than ever, with needs such as ameliorating the effects of age- and noise-induced hearing loss; developing improved screening technologies; improved remote service approaches; and the collation of outcomes data to support the services available for children with hearing loss.

A national data centre should be established (sub-contracted to an appropriate institution such as the National Acoustic Laboratories) to collect information from the various state’ newborn hearing screen organisations; the national guided referral pathway; accredited providers of paediatric audiology services; and from accredited providers of paediatric early intervention services for children with hearing loss.

This information would be analysed to determine the effectiveness of the system in enabling children with hearing loss to enter school with age-appropriate language (spoken, signed or otherwise); and published annually. This would include the outcomes information for each of the accredited providers of paediatric audiology services and early intervention services for children with hearing loss.

Recommendation 13. Establishment of a national data centre to support ongoing quality assurance of services and research.

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h. Any other related matters In addition to the matters raised previously, two issues outside of the NDIS but where hearing loss is critical need to be addressed:

Aboriginal and Torres Strait Islander children

The government should establish a dedicated outcomes funding mechanism for addressing hearing loss in Aboriginal and Torres Strait Islander children. This would provide payment against demonstrated improvements in hearing health, at a level that recognises the degree of risk involved and allows the development of innovative models of service incorporating multiple stakeholders.

Previous programs have often focussed on the provision of service rather than the achievement of outcomes (such as a documented reduction in the incidence of otitis media in children or other direct measures of hearing health). Recently some programs have been demonstrating positive outcomes and this should be encouraged by providing funding on a “pay per outcome” model rather than a “pay for service” one.

The payment offered needs to recognise the significant degree of risk in achieving positive hearing health outcomes; the need to involve multiple stakeholder groups; the difficulty and cost in successfully reaching the children; along with the high and long-term societal benefit that would come from achieving positive outcomes.

Given this, it is proposed that the funding be a combination of Government and philanthropic support, at a level that would attract social entrepreneurs to the area.

Adults developing profound hearing loss

It is critical that adults developing profound hearing loss receive appropriate support including cochlear implants, as research has demonstrated that deafness is strongly associated with early onset dementia, depress and mental illness, and social isolation. Given the developments in services over recent years, this support could be provided through a voucher mechanism along the lines of the current one.

A voucher program (along the current lines) must be established for adults developing hearing loss after turning 65; including support for cochlear implantation. This is critical given the research demonstrating that deafness is strongly associated with early onset dementia, depress and mental illness, and social isolation.

Establishment of a voucher program including cochlear implant support for adults developing hearing loss after turning 65

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 28 of 45

References

Access Economics. (2006). The Economic Impact and Cost of Hearing Loss In Australia. Melbourne. Allen, T. (1986). Patterns of academic achievement among hearing impaired students: 1974 and 1983. In Karchmer (Ed.), Deaf Children in America (pp. 161-206). Boston: College-Hill Press. Blamey, P. J., Barry, J. G., & Jacq, P. (2001). Phonetic inventory development in young cochlear implant users 6 years post operation. Journal of Speech, Language, and Hearing Research, 44(1), 73-79. Ching, T. (2015) Outcomes of early identified children with hearing impairment at 5 years: Update on

the 5-year-old LOCHI Study data. 8th Australasian Newborn Hearing Screening Conference, Sydney

Australia, 19-20 June 2015. Conrad, R. (1979). The Deaf Child. London: Harper and Row. Durieux-Smith, A., Fitzpatrick, E., & Whittingham, J. (2008). Universal newborn hearing screening: A question of evidence. International Journal of Audiology, 47(1), 1 - 10. First Voice (2011). Early intervention programs to assist children with hearing loss develop spoken language. A social cost-benefit analysis (report by Econtext). First Voice (2016). Education, Employment & Social Outcomes of First Voice centre graduates (18-28 years). Fisher, C., & Lieu, J. (2014). Unilateral Hearing Loss is Associated with a Negative Effect on Language Scores in Adolescents. International Journal of Pediatric Otorhinolaryngology, 78(10), 1611-1617. Forli, F., Arslan, E., Bellelli, S., Burdo, S., Mancini, P., Martini, A., Miccoli, M., Quaranta, N., Berrettini, S. (2011). Systematic review of the literature on the clinical effectiveness of the cochlear implant procedure in paediatric patients. [Review]. Acta Otorhinolaryngologica Italica, 31(5), 281-298. Francis, H., Koch, M., Wyatt, J., & Niparko, J. (1999). Trends in educational placement and cost-benefit considerations in children with cochlear implants. Archives of Otolaryngology-Head & Neck Surgery, 125(5), 499-505. Geers, A. E., & Sedey, A. L. (2011). Language and verbal reasoning skills in adolescents with 10 or more years of cochlear implant experience. Ear and Hearing, 32(1), 39S-48S. Henggeler, S. W., Watson, S. M., Whelan, J. P., & Malone, C. M. (1990). The adaptation of hearing parents of hearing-impaired youths. American Annals of the Deaf (135), 211–216. Hogan, A. (2012). A report card on the social well-being of Deaf and hearing impaired people in

Australia. 2012 Libby Harricks Memorial Oration, 7th National Deafness Sector Summit, Melbourne

Holt, J. (1994). Classroom attributes and achievement test scores for deaf and hard of hearing students. American Annals of the Deaf, 139(4), 430-437. Joint Committee on Infant Hearing (2007). Year 2007 position statement of the Joint Committee on Infant Hearing: Principles and guidelines for early hearing detection and intervention programs. Pediatrics, 120, 898-921. Kentish, R., & Mance, J. (Eds.). (2009). Psychological effects of deafness and hearing impairment. West Sussex, UK: Wiley-Blackwell. Kishon-Rabin, L., Kuint, J., Hildesheimer, M., & Roth, D. (2015). Delay in auditory behaviour and preverbal vocalisation in infants with unilateral hearing loss. Developmental Medicine & Child Neurology, 57, 1129-1136. Krishnan, L., & Van Hyfte, S. (2016). Management of unilateral hearing loss. International Journal of Pediatric Otorhinolaryngology, 88, 63-73.

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 29 of 45

Lieu, J. (2013). Unilateral hearing loss in children: speech-language and school performance. B-ENT, Suppl 21, 107-115. Lieu, J., Tye-Murray, N., Karzon, R., & Piccirillo, J. (2010). Unilateral hearing loss is associated with worse speech-language scores in children: a case-control study. Pediatrics, 125(6), 1348-1355. Lin, F., & Niparko, J. (2006). Measuring health-related quality of life after pediatric cochlear implantation: a systematic review. International Journal of Pediatric Otorhinolaryngology, 70(10), 1695-1706. Marschark, M., Archbold, S., Grimes, M., & O’Donoghue, G. (2007). On language, education, and cochlear implants. Journal of Deaf Studies and Deaf Education, (Editorial), 12(3), 257. Meadow-Orlans, K. P. (1995). Sources of stress for mothers and fathers of deaf and hard of hearing infants. American Annals of the Deaf (140), 352–357. Moeller, M.P., Carr, G., Seaver, L., Stredler-Brown, A., & Holzinger, D. (2013). Best practices in Family

Centred Early Intervention for Children Who Are Deaf or Hard of Hearing: An International Consensus

Statement. Journal of Deaf Studies and Deaf Education, 18(4), 429-445. National Deaf Children’s Society (2016). NDCS note on Department for Education figures on attainment for deaf children in 2015 (England). Niparko, J. K., Tobey, E. A., Thal, D. J., Eisenberg, L. S., Wang, N.-Y., Quittner, A. L., Fink, N. E., CDaCI Investigative Team. (2010). Spoken language development in children following cochlear implantation. Journal of the American Medical Association, 303(15), 1498-1506. Overby, M. S., Trainin, G., Smit, A. B., Bernthal, J. E., & Nelson, R. (2012). Preliteracy speech sound production skill and later literacy outcomes: A study using the Templin archive. Language, Speech, and Hearing Services in Schools, 43(1), 97-115. Pennington, B. F., & Bishop, D. V. M. (2009). Relations among speech, language, and reading disorders. Annual Review of Psychology, 60(1), 283-306. Sininger, Y. S., Grimes, A., & Christensen, E. (2010). Auditory development in early amplified children: Factors influencing auditory-based communication outcomes in children with hearing loss. Ear and Hearing, 31(2), 166-185. Tait, M., De Raeve, T., & Nikolopoulos, T. (2007). Deaf children with cochlear implants before the age of one year: comparison of preverbal communication with normally hearing children. International Journal of Pediatric Otorhinolaryngology, 71, 1605-1611. The Shepherd Centre (2016). 2015 Annual Report. Theunissen, S. C. P. M., Rieffe, C., Kouwenberg, M., Soede, W., Briaire, J. J., & Frijns, J. H. M. (2011). Depression in hearing-impaired children. International Journal of Pediatric Otorhinolaryngology, 75(10), 1313-1317. Venail, F., Vieu, A., Artieres, F., Mondain, M., & Uziel, A. (2010). Educational and employment achievements in prelingually deaf children who receive cochlear implants. Archives of Otolaryngology Head and Neck Surgery, 136(4), 366-372. Yoshinaga-Itano, C. (2015) Outcomes of children identified through Universal Newborn Hearing Screening across the United States: Children with hearing loss only and those with special needs. 8th Australasian Newborn Hearing Screening Conference, Sydney Australia, 19-20 June 2015. ________________________________________

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Appendices

The following are appended:

Outline of The Shepherd Centre Early Intervention Service
Referral pathways
Protocol for NDIS EI support for children with permanent hearing loss

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Appendix 1: Outline of The Shepherd Centre Early Intervention service

The Shepherd Centre is a specialised transdisciplinary/interdisciplinary service, expert at assisting children with any degree or type of hearing loss to achieve listening, spoken language and social inclusion at the same level as children without hearing loss.

Our service frameworks are based on decades of research and result in typical outcomes that are globally unsurpassed:

 Age-appropriate language achieved from at least three years of age onward;  100% of children requiring cochlear implantation due to neonatal hearing loss are implanted prior to the critical 12 months of age, with an average implantation age of seven months;  The language and vocabulary of the children entering school matches that of other children their age with normal hearing;  The social inclusion of children in their first months of school is at the same level as the overall population;  98% of parents report positively on the impact the program has had on their child’s life.

These outcomes are critical for children with hearing loss, as over 90% of these children are born into a family where both parents are hearing. As a result parents desire their child to be able to communicate with them in their native language and to grow up being able to achieve independence social inclusion in the mainstream community. The Shepherd Centre outcomes make these independence and social inclusion goals possible.

The programs implemented by The Shepherd Centre are evidence and research based. Developed from Auditory-Verbal Therapy, the Listing & Spoken Language programs are based on empowering parents to enable children to learn spoken language and social skills in their natural environment.

The outcomes achieved by these programs rely on:

 Early identification of hearing loss and rapid enrolment in the program (ideally by 3 months’ age for children identified at birth);  Commitment of the parents, family and carers of the child to support their spoken language future; and  Funding to support the required extensive and intensive therapy, appropriate to the needs of the child.

Our family-centred early intervention program focusses on guiding and coaching parents to seize every opportunity in day-to-day life to teach their child to listen and speak. We work with parents to facilitate their child’s participation in every day experiences at their home, in their community and networks in order to fully develop their child’s spoken language.

In accordance with contemporary best/recommended practices in the Early Childhood Intervention field, The Shepherd Centre prides itself on providing a coordinated and integrated program where multiple professionals share responsibility in evaluating, planning and implementing supports to improve the capacity of a child with a hearing loss and their family. We are committed to working in a true partnership with parents. Our philosophy is to use a family-focussed approach to build upon the existing strengths of each family and child, and to recognise and emphasise the role of the family as the greatest facilitator of their child’s listening, speech and language.

Listening and Spoken Language Therapists are primary providers of individual one-on-one early intervention services, accessing the specific expertise of the wider team, in several ways: via in-person joint sessions, joint videoconference sessions between two or more staff members and the family; in a group

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 32 of 45

setting with two or more staff members, or by organising specific consultation sessions with another discipline for specialised tasks (such as assessments, hearing testing, education or counselling). An annual Speech and Language Assessment and Individual Family Service Plan is included within this package.

Families can access these services directly through face-to-face sessions at their local centre along with visits provided to childcare facility/preschool, or remotely from their own home using videoconferencing technology. In recognising the importance of the whole family in the child’s outcomes, The Shepherd Centre uses state-of-the-art technology to record sessions for later viewing or live-streaming for another carer from another location (such as at the carer’s workplace).

Families are able to attend optional rotational groups, such as the Sing and Grow/Musec music program, which run on a termly basis as part of this package, and help to promote children’s development of social skills with their peers in specialised areas.

Service initiation Parents of children in Australia are given the opportunity to participate in the universal newborn hearing screening program. Generally this occurs just a few days after birth whilst still in hospital. A second screen may be required. If the baby receives a ‘refer’ result on this second screen are they referred for diagnostic audiology assessment at a State- or Territory-accredited diagnostic service.

On average, 92% of children who come to the Shepherd Centre have had their hearing loss identified via newborn screening. This is a significant population who are in need of further information, education and coaching at a very early time in their infant’s life.

Typically, The Shepherd Centre receives a call from a family which may or may not be subsequent to their diagnosis. Our trained Clinical Administration Team are the first point of contact at the Shepherd Centre. Some basic information is gathered from the family in order to organise an initial meeting. This initial meeting is with a Shepherd Centre Child & Family Counsellor.

The impact of the diagnosis on families cannot be understated: both from a technical point of view but also in terms of their grieving process. The Shepherd Centre’s Child & Family Counselling Service supports a family from initial diagnosis throughout the early intervention years to enhance the capacity of families to meet their family goals and goals for their child.

The work of our Child & Family Counsellors distinguishes The Shepherd Centre from other services in New South Wales and the ACT. They are an integral part of our transdisciplinary service.

Following this initial appointment, the Shepherd Centre then organises for the family to meet an Audiologist and Listening & Spoken Language Therapist.

What Parents see What The Shepherd Centre does

Phone call with Clinical Administration • Initial set up on Child Development Information
1x Initial Meeting with Child & Family Counsellor System
1x meeting Paediatric Audiologist & Listening & • Liaison with Australian Hearing / Diagnostic Hospital-

Spoken Language (LSL) Therapist Audiograms, Test results

1x LSL/audio consult - for severe to profound hearing • Liaison with Ear, Nose & Throat Specialist loss • 1x initial meeting Child& Family Counsellor + prep +
1x Individual Family Service Plan meeting (combined follow up with service agreement) - for those on the First Sounds • 1x meeting Paediatric Audiologist & Listening & Program or starting school in 6-12 months (unless Spoken Language Therapist + prep & follow up starting school in under 6 months) • 1x LSL/Audio session - for severe to profund hearing loss
1x Individual Family Service Plan meeting with all team members + prep & follow up

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Our Early Childhood Intervention Program

Stage 1 – Talk Together

Following initial meetings with a child and family counsellor, a specialist therapist and a paediatric audiologist at The Shepherd Centre, new families commence our Talk Together program. Here, families benefit from the expert knowledge of our Audiologists, Listening and Spoken Language Specialists, Child & Family Counsellors, Early Education Specialists and, if required, Ear Nose and Throat Specialists with specialised paediatric Cochlear Implant experience.

The Talk Together Parent program is undertaken each week, with opportunities for open discussion, and the chance to establish a parent-to-parent support network for your family, with other parents also new to hearing loss.

Eighteen topics areas are presented by our expert team, with a focus on providing take-home learnings around developing listening, speaking and socialisation. Take-home materials on educational play, resources and strategies are produced for families to immediately integrate into the daily routine. This first stage of EI provides the opportunity for families to develop beginning and core skills to teach their children listening and spoken language in every environment.

Some of the topics during Talk Together include:

 Listening and Spoken Language: What it means, and how you can incorporate listening and learning opportunities into your child’s everyday routine; skills & strategies.

 Audiology: Introduction to Audiology, and information on choosing hearing devices and deciphering audiograms.

 Counselling and Support: Strategies for supporting and advocating for your child and family, both short and long term.

These Talk Together sessions are about building the capacity of parents, increasing their skills and understanding of core concepts.

Professionals and service providers in the field assist with understanding the impact of hearing loss on everyday life and possible future impacts for individuals as well as the impact on the whole family. This early period following diagnosis is a key window of opportunity for holistic, unbiased advice, education around communication approaches and options and coaching for the family.

Talk Together is the foundation upon which the Early Intervention Program is built, the second stage of which is individualised regular sessions with a Listening & Spoken Language therapist, who has qualifications in Speech Pathology or as a Teacher of the Deaf (and is working towards or has completed additional post-graduated certifications as a Certified Listening & Spoken Language Specialist).

These are structured, play based sessions, directed by family goals, which focus on teaching skills in the areas of listening, speech, language and cognition. While the majority of sessions take place at The Shepherd Centre, sessions are also conducted through teleintervention where that is more appropriate, along with occasional home based visits where necessary and at times at the child’s preschool or day care to work with the child’s teachers.

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What Parents see What The Shepherd Centre does

18 sessions (consisting of formal parent education along • 18 sessions provided by one to three staff members + with parent networking) prep + follow up; developed from over 1,800 hours of
staff time
4 functional listening checks* •
• Liaison with guest speakers eg past graduates
Additions: •
• Functional listening checks by Listening & spoken
10 x 1hr AVT concurrent fortnightly sessions (if severe Language Therapist to profound hearing loss). This would equate to 10 • sessions during the Talk Together program. This may • Tracking of functioning listening data through CDIS be replaced by one of the other team members around • the child: Child & Family counselling or Audiologist • Audiological monitoring as required pending needs •
• Continued liaison with Australian Hearing
Cochlear implant evaluation - see section below - • Cochlear Implant - a special case. • Continued liaison with Ear, Nose & Throat Specialists •
Liaison with other relevant organisations especially if dual diagnosis such as Cerebral Palsy •
10x 1hr AVT fortnightly session with a Listening &

Spoken Language Therapist

•

Listening & Spoken Language Therapist as key worker - liaising with other members of the team as appropriate •
Clinical Therapy Management meeting - utilised to discuss complex cases •
Auditory Verbal Therapists attend 2 hours training per month - run by Principal Listening & Spoken Language Specalist and Lead mentor •
Approval of training plans by AG Bell in United States for AVT training •
10 x 1hr fortnightly mentoring sessions: lead mentors

with Listening & Spoken Language Therapist

Functional Listening Checks are a 7 Sound Test to see that a child is hearing all the sounds needed across the speech spectrum; that is, all the sounds that we need to hear for the sounds made in speech.

Stage 2 – individual sessions with a Listening & Spoken Language Therapist

As mentioned, some children with compromised access to sound commence individual sessions concurrently whilst undertaking the Talk Together program. Decisions regarding device choice and workup may be required in these early times in order to take advantage of early window periods in medical and therapeutic intervention.

However for those who do not, once the family has completed Talk Together, individual sessions commence with their Listening & Spoken Language Therapist. Currently our service framework works on 3 levels of service: weekly, fortnightly & monthly, dependant on a combination of child and family factors (such as the child’s speech and language level, hearing loss, age, additional needs, access to sound, parental capacity, etc).

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Weekly Fortnightly Monthly

• 1hr AVT sessions with Listening          • 1hr AVT sessions with Listening          • 1hr AVT sessions with Listening

and Spoken Language Therapist (key       and Spoken Language Therapist (key       and Spoken Language Therapist (key

worker)                                  worker)                                  worker)

•                                    •                                    •

• Audiological monitoring as needed       • Audiological monitoring as needed       • Audiological monitoring as needed

•                                    •                                    •

• Child & Family Counselling as            • Child & Family Counselling as            • Child & Family Counselling as

needed                              needed                              needed

•                                    •                                    •

• 1-3 1.5 hour formal Speech &           • 1-3 1.5 hour formal Speech &           • 1-3 1.5 hour formal Speech &

Language Assessment sessions (may        Language Assessment sessions (may        Language Assessment sessions - in

take the place of an individual AVT          take the place of an individual AVT           addition to monthly sessions - with

sessions) with a Speech Pathologist          sessions or be in addition to) with a         a Speech Pathologist

•                                      Speech Pathologist                     •

• 1x 1.5hr Individual Family Service        •                                    • 1x 1.5hr Individual Family Service

Plan meeting with 3 staff members -       • 1x 1.5hr Individual Family Service           Plan meeting with 3 staff members -

Audiologist, Listening & Spoken             Plan meeting with 3 staff members -          Audiologist, Listening & Spoken

Language Therapist, Child & Family           Audiologist, Listening & Spoken            Language Therapist, Child & Family

Counsellor                              Language Therapist, Child & Family          Counsellor

•                                           Counsellor                            •

• Up to 4-6 preschool/home visits by       •                                    • Up to 4-6 preschool/home visits by

up to 3 staff members: Audiologist,        • Up to 4-6 preschool/home visits by        up to 3 staff members: Audiologist,

Listening & Spoken Language             up to 3 staff members: Audiologist,           Listening & Spoken Language

Therapist, Child & Family Counsellor          Listening & Spoken Language                 Therapist, Child & Family Counsellor

•                                              Therapist, Child & Family Counsellor       •

• Access to termly rotational groups       •                                    • Access to termly rotational groups

groups (up to 32 weeks/year) eg          • Access to termly rotational groups         (up to 32 weeks/year) eg Sing and

Sing and Grow, Story time. These           (up to 32 weeks/year) eg Sing and          Grow, Story time. These are in

are in addition to individual sessions        Grow, Story time. These are in               addition to individual sessions

•                                            addition to individual sessions            •

• Lesson plan every AVT session :          •                                    • Lesson plan every AVT session :

goals, activities & progress linked to       • Lesson plan every AVT session :              goals, activities & progress linked to

Individual Family Service Plan                 goals, activities & progress linked to          Individual Family Service Plan

Individual Family Service Plan

Specific features of The Shepherd Centre Early Intervention service

The input from the ‘Team around the child’ is far greater due to the specialisation needed in this area to achieve optimal outcomes as per the evidence base. For example, a Listening & Spoken Language Therapist will conduct a functional listening check, will troubleshoot hearing aid/device issues with the family, will implement strategies as advised by the Child & Family Counsellor – however they do not have the clinical expertise to conduct audiological testing. The input from both Audiologists and Child & Family Counsellors is highly specialised to this area and the complexities of major surgery and habilitation.

Additionally, our services prides itself on:

 inclusion of the whole family;

 a focus on Adult education; &

 individualisation of the program.

We combine services from our specialist staff (Listening and Spoken Language or Auditory Verbal

Therapists, Paediatric Audiologists, Child and Family Counsellors, Speech and Language Assessors) with

cutting-edge technology (hearing implants, aids and assistive technology, digital video conferencing and recording of sessions, comprehensive custom built Child Development Information System and database);

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close coordination with other specialist providers (for children with additional needs such as cerebral palsy, autism, Down syndrome & other needs); and service provision in a range of environments (in-centre, at home, in groups, via telepractice) to ensure that every child gets the individualized, customised support required to best achieve the outcomes and goals of the family.

The Shepherd Centre has a unique and internationally recognized mentoring and certification program for Listening and Spoken Language Therapists to ensure providers are knowledgeable regarding specific intervention theory and methods, and that they implement well-defined interventions based on these theories and methods, resulting in the highest quality clinical services for families. We are committed to providing continuing education for professionals, in the form of training and resources to maintain currency in core specialised knowledge and skills for family-centred early intervention. We provide supervision, mentoring, direct observation of practices and specific feedback on service-provider performance. Through this, The Shepherd Centre has one of the largest staff populations of certified Listening and Spoken Language Specialists in Australia.

Listening and Spoken Language Therapists are Speech Pathologists or Teachers of the Deaf with an additional qualification in Auditory Verbal Therapy (they were previously known as Auditory Verbal Therapists). This additional specialist qualification (in addition to the minimum of 4 year’s University training with Honours) involves 900 hours of supervised clinical practice, specific training requirements and an international examination. This process takes at least a further 3 years of post-graduate study.

Overarching clinical activities for all children

All complexity levels - basic program

AVT sessions with Listening and Spoken Language Therapist (key worker)
Audiological monitoring as needed.
Child & Family Counselling as needed
Formal Speech & Language Assessment sessions (may take the place of an individual AVT sessions) with a Speech Pathologist
Annual written report of progress, diagnostic reporting of every session
Individual Family Service Plan meeting with 3 staff members - Audiologist, Listening & Spoken Language Therapist, Child &

Family Counsellor

Preschool/home visits by up to 3 staff members: Audiologist, Listening & Spoken Language Therapist, Child & Family Counsellor
Access to termly rotational groups (up to 32 weeks/year) eg Sing and Grow, Mother Goose, Story time. These are in addition to individual sessions. 2 staff members - Listening & Spoken Language Therapist + other
Functional listening checks by Listening & Spoken Language Therapists as needed
Tracking rate of progress data through CDIS on 33 sub-areas within 5 areas: audition, speech, language, cognition, general
Analysis of clinical data/outcomes for individuals as well as at the program level
Continued liaison with Australian Hearing
Continued liaison with Ear, Nose & Throat Specialists
Liaison with other relevant organisations especially if dual diagnosis such as Cerebral Palsy
Listening & Spoken Language Therapist as key worker - liaising with other members of the team as appropriate
Clinical Therapy Management meeting - may be utilised to discuss complex cases
Auditory Verbal Therapists attend 2 hrs training per month - run by Principal Listening & Spoken Language Specialist and Lead mentor
Approval of training plans by AG Bell in United States for AVT training. 12 per year. A requirement for certified therapists.
20 x 1hr fortnightly mentoring sessions: lead mentors with Listening & Spoken Language Therapist The table above notes that families have access to diagnostic reporting every session. They receive lesson plans and the therapist can access particular data about how a child is tracking over time.

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First Sounds Implant Program

1 in 3 children at the Shepherd Centre joins our First Sounds Implant Program. This program is a subcategory of our Early Intervention packages that refers specifically to those with implants.

This is an integrated Cochlear Implant program established with Sydney Children’s Hospital with specialised ENT surgeons who work with the child and family (and closely with their direct team: Audiologist, Listening and Spoken Language Therapist and Child and Family Counsellor).

What Parents see What The Shepherd Centre does

A seamless service that guides the family through the • Analysis of rate of progress data for the individual. Why process of assessment, pre-surgical workup, medical is an implanted device indicated?

intervention and habilitation and ongoing therapy and • • Initial meeting – team to discuss case monitoring •
• Team meeting with the family to discuss the possibility
Close monitoring of their functional progress, speech and evaluation process abilities, audiological status in weekly sessions. These are • • Organise and liaise to insure medical and imaging tests predominantly joint sessions with 2 staff members completed and candidacy criteria met present at each appointment •
• Close monitoring of the functional progress, speech
Final meeting with the family abilities, audiological status in weekly sessions. These are predominantly joint sessions with 2 staff members present at each appointment •
Detailied analysis of data through the evaluation process to inform candicacy. Includes our information and analysis team •
Team meeting with the surgeon •
Final meeting with the family •
Intra-operative testing by our audiologists in theatre It is important to note that upon entry into our program, it is only clear 50% of the time whether an implant will be required. As the child grows and develops greater information becomes available in order to make a sound medical and therapeutic recommendation to the family.

1 in 3 children in our program require 1 or 2 cochlear implants, which may happen at separate times for each ear or simultaneously.

Cochlear Implant Evaluation happens on average over 3-4 months average (ranging from 2-6 months) in most cases. For those children who may have complex needs this may occur episodically over a much longer period of time.

And after the surgery…

 Activation of the cochlear implant

 Mapping sessions

 On call audiological services: questions about implant operation, repairs, accessories

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Other Services

We have a number of other packages which form additions to the core Early Intervention Program. These include:

 Kidscape – Parent training & networking

 Off to school – intense preparatory program prior to commencing school

 Start Point – Assessment (stand-alone – young children)

 Check Point – Assessment (stand-alone – young adults)

 Bring it home – 3-5 day intensive workshop

 Strengthening skills – individual support to school aged children

 Confident kids – social skills and theory of mind

 Empower me – education workshop for extended family/carers of children with a hearing loss

Progress Monitoring & Reporting

The Shepherd Centre works in partnerships with families to routinely and authentically evaluate individual children’s development, as well as family satisfaction, self-efficacy, and wellbeing. We rely on reflective practices, appropriate standardised measures, parent-report scales, authentic assessments, and informal procedures to evaluate progress and use authentic assessments with emphasis on strength-based perspective to capture real-life competencies in everyday routines, as defined by early intervention best practice. We use ongoing diagnostic informal observations from each session, in combination with regular formal speech and language assessments to individually design each specific intervention action plan, and alter approaches or strategies as needed to enable each child to learn in the way that suits them best.

The Shepherd Centre provides formal reports following annual listening speech and language assessments on progress across relevant domains within the three months following each child’s birthday. This is supplemented by quarterly Clinical Goal Summaries and related Rate of Progress data from our Child Development Information System (CDIS). These typically cover areas such as response to sound, defined stages of speech and language development and cognitive and play skills. These clinical goal summaries are directly related to the family goals as agreed upon in their Individual Service Planning Meeting or Service Agreement meeting.

CDIS is a unique, custom-built system with snapshot and longitudinal tools for tracking children’s rate of progress in all developmental areas, with an inbuilt flagging system to identify areas of concern to guide and focus individual family intervention. The system model is based on the integration of each family’s vision for their child, goals and expectations with their associated clinical goals. The detail within the system is a world-first in the field and sets us apart from all other providers in this field.

A significant advance by The Shepherd Centre in conjunction with the Hearing CRC has been the development and application of the Functional Listening Index. This world-first tool enables the tracking of the development of listening skill by children. The audiological tests currently used typically only determine the ability of a child to detect a sound; not their ability to discriminate it from other sounds, to identify it or to be able to comprehend its significance. These listening skills are critical for a child’s ability to learn spoken language and they are assessed using the Functional Listening Index. The index has been shown to be an early predictor of a child’s language later in life.

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 39 of 45

Over 95% of

Australian

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Territory

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intervention providers have a range of specialist clinicians, including The Shepherd Centre – inquiry into hearing services underpaediatricthe NDIS, January 2017 Page 41 of 45 audiologists in addition to other staff

New pathway under the NDIS EI protocol The new pathway proposed in February 2016 for early childhood early intervention, as applied to children

Identification
Diagnosis Extra 1

Extra 2

Extra 5                   Extra 4                   Extra 3

4. Australian Hearing 5. Specialised Intervention with hearing loss, is:

This new Early Childhood Early Intervention pathway adds 5 extra steps to be completed by a non specialist Access Partner. The potential delays involved in this puts at risk the success of the subsequent supports provided by Australian Hearing and the specialist intervention provider.

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 42 of 45

Appendix 3: Proposed protocol for NDIS EI support for children with permanent hearing loss

Specific access requirement

A diagnosed permanent hearing loss of 21dB or greater (averaged over 3 or more frequencies) in one or both ears, including hearing loss due to ANSD.

Assessment of level of core program support required

The key aim of the core program (collaborative teamwork practice or transdisciplinary early childhood intervention) is to support the development of age appropriate communication & social skills by the child. The level of support required (Nil, Low, Med, High) is determined by the individual needs of the child.

All children require an initial 6 months of High level core program support. After this first six months, the default level of support is determined according to: whether the hearing loss affects both ears or one; age of child; level of hearing loss; level of current communication skill; and any additional risk factors (including delayed entry to early intervention). The appropriate level is determined as per the following tables:

0-36 months 37-72 months

Bilateral HL         Appropriate      Delayed       Appropriate      Delayed

communication  communication  communication  communication

Mild      - risk: Low        - risk: High        - risk: Low        - risk: High

less-     21-40dB  + risk: Med     + risk: High     + risk: Med     + risk: High

in ear Moderate  - risk: High        - risk: High        - risk: Med        - risk: High

loss     41-70dB  + risk: High     + risk: High     + risk: High     + risk: High

Severe*    - risk: High        - risk: High        - risk: Med        - risk: High                               affected  71-90dB  + risk: High     + risk: High     + risk: High     + risk: High                    Hearing    Profound   - risk: High        - risk: High        - risk: Med        - risk: High

91+dB   + risk: High     + risk: High     + risk: High     + risk: High

Appropriate      Delayed       Appropriate      Delayed

Unilateral HL

communication  communication  communication  communication

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loss     41-70dB  + risk: Med     + risk: High     + risk: Low     + risk: High

Severe*    - risk: High        - risk: High        - risk: Med        - risk: High                               affected  71-90dB  + risk: High     + risk: High     + risk: Med     + risk: High                    Hearing    Profound   - risk: High        - risk: High        - risk: Med        - risk: High

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children with Severe or Profound hearing loss are to be evaluated for cochlear implantation candidacy. ** no further core program support after the initial 6 months.

In the above tables:

Bilateral hearing loss: both ears with permanent hearing loss of 21dB or more (averaged over 3 or more frequencies), as diagnosed by a qualified paediatric audiologist. The level of hearing loss for use in the table is determined by the ear that has the better hearing. Unilateral hearing loss: one ear does not have a permanent hearing loss. Delayed communication: the level of communication (spoken or signed) of the children must be assessed according to a validated and standardised assessment tool. Delayed children are those that fall 1 SD or more below the population norm.

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 43 of 45

Risk factors: the presence additional risk factors that significantly increase the support needs of the child. Relevant risk factors are listed below.

Provision of the core support program

The core support program for hearing loss is funded in addition to the funding of any additional therapy provided due to any other disabilities (the presence of other disabilities does not decrease the funding need for hearing loss support).

All core support programs must include the following:

Therapy to support age-appropriate communication development (either spoken or signed) from a provider with specialist skills in supporting children with hearing loss and their families;
Intervention to support the development of age-appropriate play and social skills;
Audiological management where necessary to ensure assistive devices are being appropriately and effectively utilised;
Support and education for the family and for inclusion of the child into the family’s community;
Assessments (at least annually) of communication (using a standardised tool), of any delay to play or social skills, and of support for the family; administered by a qualified individual. All services providing core support programs must document the effectiveness of their program; such as through tabulation of the communication assessments of the children in their program, demonstrating that fewer than 35% of the children (excepting those affected by additional disabilities that affect learning) have delayed communication. Services unable to document the effectiveness of their program are eligible to provide specialised individual therapy on a per-hour basis but are not eligible to provide a core support program.

Services are to determine an appropriate individual support plan for each child, based on their needs and the goals established for them by their family. The maximum that can be funded for the core support program is:

 Low - $12,000 per annum  Med - $16,000 per annum  High - $21,000 per annum

Provision of additional support beyond the core program

Further support in addition to the core program is required in specific situations:

Additional needs – if a child has further disabilities beyond hearing loss they will require additional therapy specific to that disability. The scope of that support is not part of this protocol.
If the child is learning sign language but the parents use spoken language – an additional $6,000 per year for up to 3 years for sign language training of parents, caregivers and extended family.
If the child will be undergoing critical transitions between care environments (such as home to day care, or day care to school) – an additional $6,000 for intensive support to the child, family and new care givers in preparation for and during each transition.
If the child is in the care of extended family members for 6 or more hours a week – an additional $2,000 per year for up to 3 years for training of the extended family.

Risk factors

   Presence of additional needs                Late diagnosis

  Delayed fitting of devices                  Delayed entry to Early Intervention

  Complex family needs                     Poor device compliance/reduced access to sound

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 44 of 45

 Bilingual/multilingual environments  Recurrent middle ear pathology

The Shepherd Centre – inquiry into hearing services under the NDIS, January 2017 Page 45 of 45

Submission 40 — The Shepherd Centre — The provision of hearing services under the National Disability Insurance Scheme (NDIS)

Committee Secretary

Joint Standing Committee on the National Disability Insurance Scheme

Parliament House

CANBERRA ACT 2600

Submission to the Joint Standing Committee on the National Disability Insurance Scheme

Dear Secretary,

Dr Jim Hungerford, CEO

ABN: 61 000 699 927

National Disability Insurance Scheme inquiry into

Dr Jim Hungerford, CEO

Contents

Eligibility

Context

Speech and Language

Literacy

Socioeconomic Issues

practices in Family-Centred Early Intervention for Children Who Are Deaf or Hard of Hearing: An

Aboriginal and Torres Strait Islander children

References

the 5-year-old LOCHI Study data. 8th Australasian Newborn Hearing Screening Conference, Sydney

Australia. 2012 Libby Harricks Memorial Oration, 7th National Deafness Sector Summit, Melbourne

Centred Early Intervention for Children Who Are Deaf or Hard of Hearing: An International Consensus

Appendices

Appendix 1: Outline of The Shepherd Centre Early Intervention service

What Parents see What The Shepherd Centre does

Spoken Language (LSL) Therapist Audiograms, Test results

Our Early Childhood Intervention Program

What Parents see What The Shepherd Centre does

Spoken Language Therapist

with Listening & Spoken Language Therapist

Individual Family Service Plan

Specific features of The Shepherd Centre Early Intervention service

Therapists, Paediatric Audiologists, Child and Family Counsellors, Speech and Language Assessors) with

Family Counsellor

First Sounds Implant Program

What Parents see What The Shepherd Centre does

Other Services

Progress Monitoring & Reporting

Australian

Territory

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