NDIA Accountability Project

Concierge approach recommended for children with hearing loss

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Submission to the Standing Committee on the NDIS inquiry into Inquiry

Into the future of the NDIS

Submission from First Voice, 29 October 2021

Deputy Chair Dr Jim Hungerford

Mr David Brady

First Voice

First Voice is the representative body for the leading early intervention centres across Australia, New Zealand, South Africa and the United Kingdom supporting children with hearing loss to achieve spoken language, mainstream education and social inclusion.

First Voice and the deafness sector have been working with the NDIA intensively over the last few years in order to develop approaches under the NDIS that will appropriately support young children with hearing loss. We are lodging this submission to provide the standing committee an update of progress since the last inquiry in 2019, and to provide our advice and suggestions for further improvements for the future. Our focus is on the development and education of a child with hearing loss, supporting their communication development from diagnosis until exiting the early intervention program, ideally entering school with the same spoken language skills as any other child.

This submission refers collectively to the Terms of Reference Sections (a: i, ii ), (b), (c: i, ii. Iii), (g: i, ii), (h). Our submission focuses on three key areas for improvement to the NDIS.

Need for a Concierge Approach to support families from time of contact with Hearing Australia

First Voice recommends the need for a concierge approach to support families from time of contact with Hearing Australia through to engaging with a suitable registered early intervention provider for children with a hearing loss.

Currently Hearing Australia confirms the diagnosis of hearing loss, and then enables the entry of the child into the NDIS with the rapid provision of an automatic first plan. They are then referred to an Early Childhood Intervention Provider, who then provides and works out with the family their child’s support needs, then refers the family to the services they need to commence their life skills development, in this case hearing and communications development.

In theory, this is a structured and timely process to onboard a child with a disability into the NDIS. However, in the case of hearing loss and in practice, it is met with delays and stress for the families. They are undergoing a new life changing process after diagnosis, all while the child with a hearing loss’s opportunity to hear and speak or learn to communicate is diminishing due to the delay.

First Voice Submission to Joint Standing Committee on the NDIS

October 2021 Page 2 of 17

The experience over last years of this approach has demonstrated that the reliance on Early Childhood Partners isn’t feasible, because hearing loss is such a specialised area and requires urgent attention from diagnosis through to engagement with a suitable specialist early intervention provider.

First Voice in its 2019 submission to the Committee stated that the reliance on the Early Childhood Partner would not be successful. This has been the case, especially where the additional factors are of a specialist nature (such as assessing parent understanding of early intervention requirements; communication in babies; access to sound; etc). Early Childhood Partners are under significant workload pressures and experience has demonstrated that they do not appreciate the impact of issues such as these; our experience is that their understanding and approach is very inconsistent. The specialised planners in the NDIA have ensured improved plans versus what it used to be, but it is still not acceptable.

With the current approach 50% of children with hearing loss, who are eligible for NDIS funding support, are not receiving the specialist services they require to develop their communication skills.

We recommend that for children with a hearing loss, the NDIA adopt a concierge approach to ensure that the family successfully engages with the NDIS and that the child commences early intervention suitable for the family’s goals:

  • Subsequent to diagnosis a child engages with Hearing Australia as per the existing pathways.
  • A Family Support Officer would then be allocated to the family to support them through their journey.
  • Hearing Australia initiates the process for an access decision and first plan as per the existing pathways.
  • The Family Support Officer would introduce the family to a selection of registered early intervention providers suitable for the family’s goals for their child.
  • The child with a hearing loss and their family engages with their selected provider; within a few days to a few weeks after engaging with Hearing Australia.

This proposal is aligned with the Roadmap for Hearing Health and with the NDIS principles. The Family Support Officer would ensure that children from vulnerable families, families who otherwise struggle to engage, are as well supported as all other children.

The costed proposal for this concierge approach (attached appendix 1) has been provided to Hearing Australia, the NDIA and to the office of Minister Reynolds.

First Voice believes after years of NDIS experience since its introduction, along with feedback from families who access our services, this concierge approach will reduce the emotional and mental stress for families in complex circumstances, or those struggling with the emotional turmoil of a new diagnosis.

In addition, the current system and the rapid first plan applies to children who attend Hearing Australia for the first time. We are aware of a significant proportion of children who have already been engaged with Hearing Australia but do not yet have a plan. In the absence of a specific process these children are not being prioritised for action and we believe a process such as this concierge system must be put in place.

Need for a Structured Planning Approach

Currently the unstructured and variable early intervention funding approach for children with a hearing loss is a high risk to towards the child’s life development to become independent Australian individuals with aspirations to reach their life’s potential.

First Voice Submission to Joint Standing Committee on the NDIS

October 2021

Page 3 of 17

In Australia more than 90% of infants/children diagnosed with a hearing loss are from families with little or no experience of deafness, their communications needs, or an understanding of the services needed for a child with a hearing loss to develop spoken language or communication skills.

The service provided by First Voice consist of highly trained and specialised clinical, speech, and communication development professionals with tertiary education and years of training. Its service is focused not only on the child with a hearing loss, but also the family/guardians who are raising the child. In this case, the parent/guardian are added the extra layer of responsibility to ensure their child’s communication, hearing, and language development is covered as well as the basic early childhood development from birth towards school age.

The current system is that the first plan for a child with hearing loss is solely depending on the level of hearing loss, resulting one of four tiers of plans. The higher the hearing loss, the higher the plan. This enables the very rapid provision of a first plan, however it also means that the plan cannot reflect the other challenges that the child may be facing (such as additional disabilities, delayed diagnosis, pre-existing delays, or complex family circumstances).

Subsequent to the first plan, the planning process is unstructured. First Voice has seen over the last year that average plan amounts are being reduced, presumably due to the worries about the value of other plans increasing. The following table uses the figures from the published quarterly NDIS data for children aged 0 to 6 with a primary disability of hearing loss:

Average value of Capacity Building component at the end of each quarter

Quarter ending AUS NSW VIC QLD WA SA ACT TAS NT
Jun 2020 $16,834 $17,000 $17,000 $16,000 $17,000 $18,000 $14,000 $16,000 $24,000
Sep 2020 $16,823 $17,000 $17,000 $16,000 $17,000 $18,000 $14,000 $16,000 $24,000
Dec 2020 $15,987 $16,000 $16,000 $15,000 $17,000 $18,000 $13,000 $18,000 $24,000
Mar 2020 $15,828 $16,000 $16,000 $15,000 $16,000 $17,000 $13,000 $17,000 $23,000
Jun 2020 $14,999 $15,000 $15,000 $14,000 $16,000 $17,000 $14,000 $17,000 $23,000

First Voice accepts that the NDIS must be financially sustainable, however this can’t be achieved by further reducing the relatively small plans being provided for children with hearing loss.

Parliamentarians on the Committee and the NDIA need to understand the Early Intervention Services for children with a hearing loss is akin to that of a formal school education for a child, in this case the learning starts at a much earlier age and it is much more intense. It is unheard of for a formal school education service to be reduced as a child gets older and as they continue to build new life skills. First Voice’s experience is that the hardest work in Early Intervention for hearing loss comes after the first NDIS plan.

It is disappointing for First Voice professional staff and the families to face the challenge of how to maintain the child’s life skill development at a crucial stage in their infancy (1 to 4 years of age) under threat of reduction of supports and services. For children the critical years of language and communications development is all years from birth to the day they enter school. Once the child commences speaking and developing their spoken language, the work is harder not easier. In the case for a child with a hearing loss, the hard work does not stop for their family and themselves after year one, it grows as they develop their listening skills, their language and their speech.

In short, First Voice is disappointed the NDIA early childhood partners are not recognising the need to ensure the same structured amount of funding, or more, for the following years after first year since diagnosis. Instead, First Voice are finding through participant families, their funding amounts are decreasing and at times not enough to provide life skill development support for the child with a hearing loss.

Families Are Reporting That Children Who Are Doing Better In Their Communications Development Journeys

Families are reporting that children who are doing better in their communications development journeys are having their plans reduced because they are “doing well”, despite the fact that they will then drop behind with reduced support. This has placed high stress on families who fear reporting good progress of their child in developing life skills, causing them to play down their child’s development.

To address these issues, whilst still ensuring that plan values do not inflate, First Voice recommends the NDIA uses a structured planning approach for 3 to 5 years of early childhood development funding for the supports children with a hearing loss need to ensure they are communication ready by school entry age.

We believe this will provide:

  • Less stress for the family of the child with a hearing loss, a breathing space to learn about earing/deafness supports while making family adjustments to meet the needs of their child’s ehearing loss. The child with a hearing loss can develop at their pace without threat of reduction of NDIS funding due to over achieving compared to their peers.

  • Long term savings through reduction of reliance by the child on welfare, additional NDIS supports, and mental health issues.

  • The risk of delay of early intervention is avoided, and the child with a hearing loss is given the best start in life as possible. Ready for their formal school education, and be at a position where they are close to or as equal that of their hearing peers in the classroom.

The detailed proposal for this approach is attached in appendix 2. It has also been provided to the NDIA and to the office of Minister Reynolds.

Families in early-intervention are better off being on agency-managed plans rather than self-managed plans

First Voice believes that families (for the first 3 to 5 years on the NDIS), are better off on commencing with agency-managed plans; then with a greater experience, knowledge, and understanding of the services and supports for their child they should then be offered the option of self-managed, plan-managed, or remain on agency-managed plans. We are finding that many families of children with hearing loss don’t know what they/their child needs and often don’t have the capability to manage the plans. As a result, children are falling out of service with potentially devastating life-long consequences.

For many vulnerable, CALD or marginalised families the challenge of administering a self-managed or plan- managed plan is very difficult. Our experience is these families (who may struggle with understanding English) may not even appreciate the reasons why their child needs to access specialist services for their child. These families find the challenges of self-managing their child’s early intervention plan, while at the same time navigating and learning about hearing loss, simply overwhelming. Tragically, and far too often in our experience, they withdraw their child from service despite offers of further assistance. Where the plan is agency-managed the family is not faced with the financial and administrative challenges and all parties can focus on providing the best supports possible to the child.

Several First Voice Centres have cases where families on self-managed plans are struggling to manage the processing of payments of their child’s NDIS funding for the services they accessed. We are aware of other services that are having to utilising debt collection agencies to secure the payments. This situation is made more difficult as the NDIA often will not follow up the family on self-managed plans to determine why they are not processing the NDIS funds for the services.

First Voice Submission to Joint Standing Committee on the NDIS

October 2021

Page 5 of 17

other providers to experience the “denial and no assistance” from NDIA in this situation. There is great risk of placing the Australian Government, the NDIA, and a First Voice Centre or any other registered Early Childhood provider at risk of negative front-page headline “targeting the vulnerable” which impacts our services and reputation.

Another challenge is families on self-managed plans in cases where families are undergoing separation or are separated. Often the situation to collect the self-managed funding is difficult as the funding from the NDIS lands in a joint account or a separate account, then the separated parents disagree or at times threaten domestic violence, triggered due to service providers seeking payments for invoices provided for services for their child.

First Voice Centres are frustrated where vulnerable families are put in situations where it could be foreseen they would never be able to manage or pay for services under a self-managed funding. These experiences are incredibly stressful and challenging for both families and service staff. It is strongly recommended the NDIA default to Agency-Managed Plans for the first 3 years of early intervention of children with a earing loss.

ATTACHMENTS

1. OUTCOMES FOR CHILDREN WITH HEARING LOSS

Children with hearing loss differ the majority of children in the NDIS, in that:

  • their disability is a predictable consequence of a specific medical diagnosis;
  • the diagnosis can be made a year or more prior to the disability being observed;
  • appropriate interventions provided in the first months of life (and continued through the EI years) can substantially prevent the development of disability; and
  • the nature of the specific diagnostics, aids and therapies required to provide excellent outcomes are known.

Congenital early childhood hearing loss affects a child from before birth, preventing a baby from detecting sound normally (including in utero) and interfering with the development of the specialised parts of the brain that are required for listening (the lack of stimulation to the auditory cortex results in restricted development through neuroplasticity). If the auditory cortex does not develop appropriately in early life the impact on listening and spoken language is normally permanent. Knowing this, hearing devices and specific therapies must be provided from a few months of age to assist subsequent development of the cortex. These interventions are very specific (whether based on Listening & Spoken Language, or based on sign language) and to be effective they must be provided by a service that specialises in them.

In addition, even the best hearing devices do not reproduce normal hearing. As a result, young children miss many language and auditory cues that are critical for the development of language, executive function and social skills. Specific therapy is required through the early intervention years to overcome the shortfalls of the hearing devices and buttress language, executive function and social skill development.

Finally, once appropriate functioning has been developed, the children still require some level of support due to either their own specific circumstances or due to the general issue of the hearing devices not reproducing normal hearing. However, this level of support is far lower than that required if the specific diagnostics, aids and therapies were not provided from the earliest months of the child’s life.

Impact of childhood hearing loss

Children with early hearing loss face numerous challenges on their road to achieving full social inclusion. More than 1 in 1,000 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. 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.

Speech and Language

Speech and language outcomes for children born with permanent childhood hearing loss have historically been compromised (Allen, 1986; Holt, 1994). This includes 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 earing 7-8 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

hearing loss has occurred. However, international research data (not that on children graduating from First Voice centres) 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).

The recent Australian LOCHI study (Longitudinal Outcomes of Children with Hearing Impairment, Ching et

al., 2017) has demonstrated that poor language outcomes persist for Australian children with hearing loss, with a median score of children with hearing loss at just under 85 (vertical red line). This contrasts with the median score of the children completing El at one of the First Voice centres (The Shepherd Centre), where the median score is typically 100 (the same as the community average of 100, peak of dashed line in LOCHI graph):

LOCHI outcomes 50- on. rts
: \ Ma 7. 40- } \n4 ‘ ’ \ iJ au = } § f ’ 5 30- H 6 i mS _ U I ’ B 2- : E ’ z ’ \ 10- x 0- eS 2 40 § 70 85 100 115 130 Global Language Score FV outcomes Language outcomes of children completing El program 120 = 100 _—s ee ee ei te ° Fa an ee ae Pe oe eS Sf | See ee <o-* ne is *s 7 » @ enn os - “ / 1 80 ¥ ¥ =}co= 2 8 60 z 3 5 40 Normal range for children “ —#— Graduates with hearing loss alone (median) 20 —@– All graduates (median) Population average of Australian children with hearing loss (LOCHI) (5 year old assessment of children born between 2002-2007) 0 + t T T t T T T T t T t 2007 2008 2009 2010 2011 2012

  1. 2014 2015 2016 2017 2018 2019 2020 ‘Graduates with hearing loss alone’ do not have other factors beyond hearing loss; such as additional disabilities, delayed entry or lack of exposure to English; that complicate their language development.

‘All graduates’ also includes the outcomes from children with complicating factors including with additional disabilities; joining late; or from a non-English speaking environment.

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.

These poor results can continue despite standard speech & language therapy. Werfel found that children with hearing loss performed more poorly than children with normal hearing on measures of oral language, phonological memory, and conceptual print knowledge (Emergent Literacy Skills in Preschool Children With Hearing Loss Who Use Spoken Language: Initial Findings From the Early Language and Literacy Acquisition (ELLA) Study. Lang Speech Hear Serv Sch. 2017 Oct 5;48(4):249-259). Although children with hearing loss generally demonstrated a positive growth in emergent literacy skills, their initial performance was lower than that of children with normal hearing, and rates of change were not sufficient to catch up to the peers over time. All children with hearing loss in this study were receiving speech-language services, per parent report. Thus, it appears that current practices in early intervention do not readily lead to lessening the magnitude of deficit for this population. Instead, it is possible that explicit instruction in particular skills is needed to accelerate the positive change observed in 4-year-old children with hearing loss.

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 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.

A Concierge Approach

THE PROPOSAL

Australia has some of the best systems in the world for supporting children with hearing loss. However, only 50% of children with a permanent hearing loss currently access specialist early intervention services. This results in these children entering school without the language and literacy abilities of their peers. The social and economic losses arising from this leakage exceed $250 million.

First Voice proposes that the Australian Government implement a concierge-style model. Based on the learnings of the successful Queensland Hearing Loss Family Support Service, the program would be a national one to support families and children in their journey from fitting through to engagement with an appropriate specialist service. The estimated annual cost of the program is $2.4 million. Based on the Queensland experience, the percentage of children failing to reach a specialist early intervention provider could be expected to reduce from 50% to 25%. A 50% improvement on the current situation for this cohort could be delivered with an estimated cost: benefit in excess of $135 million.

BACKGROUND

Hearing loss is one of the first diagnoses of a disability that a newborn child is likely to receive. With the universal newborn hearing screening often occurring within 2 days of birth, the path to a full diagnosis within a fortnight of birth is often achieved. In Australia, approximately 1 in 1000 children are identified at birth with a hearing loss. This increases by another 2 per 1000 by the time they reach 5 years old, with 1 in 300 children having permanent hearing loss at school entry. Over the past 70 years, Australia has developed world-leading practices in identifying and supporting these children but, while the universal newborn hearing screening reaches 98% of children, only 50% of children with a permanent hearing loss reach a specialist early intervention provider – a provider who delivers evidence-based specialist, targeted, multi- or trans- disciplinary therapy supports for children with hearing loss and their families.

This leakage from the system often results in these children entering school without the language and literacy abilities of their peers, putting them significantly behind in their educational (and then employment) atainment.

CURRENT SITUATION

Children with normal hearing start hearing around halfway through pregnancy, stimulating the particular part of their brain responsible for hearing & listening, i.e. the auditory cortex. As a result, by the time they are born, children with hearing loss are already delayed by five months in key aspects of their brain development. An immediate and specialist response is required to prevent significant lifelong impacts for the child. The key elements of this response are: - Rapid detection and diagnosis - Early and effective provision and fitting of hearing devices - Early and effective provision of specialist early intervention therapy

The system in Australia designed to deliver these elements is depicted in Figure 1, below with Hearing Australia and NDIS falling into the Minister Reynold’s portfolio. The universal newborn hearing screening program leads the world in its reach, screening approximately 98% of all children born in Australia. The pathways, processes and timeframes put in place for the health system to conduct the diagnostic testing and then to refer to Hearing Australia for hearing devices are all an integral part of the system’s success.

However, while more than 4,000 children aged up to 6 years are supported by Hearing Australia, less than 2,000 are accessing specialist early intervention services, with many children entering school with poor listening skills and spoken language delays that significantly hamper their learning and literacy development impacting school performance, social development and employment.

Current Referral System for Children with Hearing Loss

Within 2 days of\n\nbirth\n\nNewborn Hearing \ Diagnositic \nScreening\n\nHearing Test\n\nWithin 6\nweeks of birth\n\nWithin 8-12\nweeks of birth\n\nVisit to \ Engiige with Engage with\nHearing specialist\n\n5 NDIS ei\nAustralia provider\n\nFigure 1: Current Referral System for Children with Hearing Loss\n~50% of children not\naccessing specialist\nservices\nWith an estimated net cost to the community of $371,000 per annum for each child not receiving specialist\nearly intervention therapy’ the social and economic losses arising from this seepage exceeds $250 million’.\nThe is a simple solution to this problem.

ESTIMATED COST TO GOVERNMENT\nThe estimated cost to Government is $2.4million per year.\n\nae ee ame salary Salary cost\n(incl oncosts) (incl oncosts)\nFamily Support Officer 12 $115,000 $1,380,000\rNational Manager 1 $175,000 $175,000\rRegional Managers 2 $150,000 $300,000\rNon Salary Costs $556,500\rTotal $2,411,500\n

BENEFIT TO THE COMMUNITY

The per-child economic benefit from a child with hearing loss receiving timely and appropriate specialist early intervention therapy is approximately $497,000 (Deloitte, 2017 op.cit.). With less than 50% of children with hearing loss accessing the required specialist therapy, the potential benefit from the program exceeds $275 million.

EVIDENCE THE PROGRAM WORKS

The program has been designed using the highly successful Queensland Hearing Loss Family Support Service. This service is offered to the families of all children aged birth to six years in Queensland who receive a “direct refer’’ result on newborn hearing screening or are diagnosed with a permanent hearing loss.

ALIGNMENT WITH ROADMAP FOR HEARING HEALTH

The Roadmap for Hearing Health was delivered to the Federal Government in February 2019. Launched with much applause from the sector, it articulates key initiatives and priorities for the Government. Implementing THE PROGRAM will enable Government to address key elements of the Roadmap, specifically:

  • Page 5, Priority 7: “There is a smooth transition for clients from the Hearing Services Program (HSP) to the NDIS, with a particular focus on vulnerable clients currently receiving services through the CSO component.”
  • Page 14, Key action 2: “Implement a consistent and standard pathway for paediatric referral and services, including a single, national point of referral for children post early-identification of hearing challenges.” Most importantly, it reflects the objective of ensuring there is no child “slipping through the cracks” as enunciated throughout the Roadmap.

ALIGNMENT WITH THE NDIS PRINCIPLES

The NDIS is based on the following four insurance principles:

  • The funding base required is determined by the reasonable and necessary support needs of the participants;
  • The NDIS seeks to minimise lifetime support costs by investing in people early to build their capacity and optimise their lifelong social and economic independence;
  • The NDIS will invest in research and encourage innovation; and
  • The NDIS has the ability to act at the systemic level, as well as fund individual support needs.

Overall, the financial sustainability of the NDIS is predicated both on significantly reduced costs of lifelong support and care (including disability pension payments) through effective, evidence-based early intervention as well as significantly increased national economic benefit through increased employment of people with disabilities.

The program is aligned with these principles. It:

  • Ensures that children are linked with early intervention services based on their support needs;
  • Minimises lifetime costs by maximising the independence and social inclusion of children;
  • Optimisies future employment of children with hearing loss, with associated long-term economic benefit;
  • Allows rapid adoption of innovation and best practice through supporting families’ choice; and
  • Integrates the activities of the Health and NDIS systems to better support the children.

The multidisciplinary service delivery of specialist early intervention services supports each child’s overall development, including those with additional disabilities. The use of educators, speech therapists, auditory verbal therapists, occupational therapists, physiotherapists, psychologists and audiologists with children and their families enables a “whole of child” family-centred approach to be taken and supports the development of the early building blocks and skills for children with additional needs. Further, given the strong networks that specialist early intervention services have throughout the areas in which they operate, they provide a significant support in the cross-referrals of children to other specialist services.

3. STRUCTURED NDIS PLANNING APPROACH (for EI funding of children with

  hearing loss)

Summary

Regardless of the method of communication, every child with a hearing loss has the right to appropriate early intervention to maximise their language skills before entering formal schooling. The therapy needs to be family focussed, with an integrated inter/trans-disciplinary team providing parent coaching and support, enabling the child to be immersed in the learning-rich environment needed for these children to develop good language, including social and literacy skills. The required high level of intervention during the early intervention years results in life-long benefits for the child and family, their community, and the NDIS through increased participation in social and learning environments. This in turn leads to greater independence and wellbeing for an individual, including later economic independence and productivity.

A structured planning approach is required to ensure that appropriate funding to enable this therapy is provided, with a range of objective measures used to provide equity in the funding determination.

The objective measures required are of:

  1.  The nature and severity of their hearing loss
  2.  Risk factors:
          a.  Existing communication abilities (language, speech, social communication, literacy skills)
          b.  Access to sound
             c.  Family context and engagement
  3.  Any additional disabilities

In combination these assessments enable a structured planning approach that ensures children are provided with plans proportional to their needs, whilst also ensuring consistent and equitable funding.

Plan funding levels

The following default funding levels are appropriate to support the specialist Early Intervention required for the development of language for children with hearing loss at any stage in their journey. The funding levels are:

     Intense          High          Medium       Low
      (level 4)            (level 3)            (level 2)            (level 1)
    $24,150         $16,560         $8,535           $4,386

The funding level is determined by a combination of age; level of hearing loss; and the presence of risk factors.

These funds are for specialist Early Intervention to develop language; if the child has additional disabilities that require other supports these need to be funded separately and in addition. The funding amount for any additional disabilities is calculated using the standard NDIA protocols and added to the Structured Plan amount.

Definitions for levels of hearing loss

The definitions for the different levels of hearing loss are those of Australian Hearing:

  • Normal 0-20 dBHL (3 or 4 frequency average)
  • Mild 21-40 dBHL (3 or 4 frequency average)
  • Moderate 41-60 dBHL (3 or 4 frequency average)
  • Severe or worse 61dBHL or worse (3 or 4 frequency average)

Children with Auditory Neuropathy are regarded as having a Severe loss in that ear; children with a cochlear implant are treated as if that ear has a Moderate loss; and where a child in ‘Normal’ in one ear, but the other ear has a loss, the child is classed as ‘Unilateral’ (single-sided hearing loss).

The level of hearing loss must be determined and documented by an audiologist.

If the child has hearing loss in both ears, but they are at different levels of loss, the dB loss of the two ears is averaged to determine the level of loss. For example:

    Left ear 45dB loss (Moderate) and Right ear 65dB loss (Severe of worse) – average
 55dB Assigned average level of loss – Moderate

  • High if there is loss in both ears with an average loss of ‘Moderate’.

  • Intense if there is loss in both ears with an average loss of ‘Severe’ or worse.

Protocol for children receiving subsequent plans for specialist Early Intervention:

Children who are already engaged with a specialist Early Intervention provider will have information on whether they have risk factors and also the degree of those risks. The specialist providers will provide this information (as per the documentation requirements detailed below) to Hearing Australia and the Early Childhood Partner so that the appropriate level of plan can be allocated.

Depending on the situation this information may be provided for an early review of the plan (typically necessary where previously undocumented risks to outcomes become apparent; for instance following identification of risk factors occurring after the start of the initial automatic plan) or otherwise prior to the end of the previous plan.

Standard plan if there are no risk factors:

  • If a child is expected to have cochlear implant surgery during the plan year, they receive a High plan.

  • Otherwise:

    • Low if there is unilateral loss.
    • Medium if there is ‘Mild’ loss in both ears.
    • If there is loss in both ears and the average loss is ‘Moderate’ or worse:
      • High up until 36 months of age,
      • Medium from 37 months of age onward.

Standard plan if there are one or more documented risk factors:

  • High if bilateral ‘Mild’ or if there is unilateral loss.

  • Intense if there is loss in both ears and the average loss is ‘Moderae’ or worse.

Risk Factor Documentation requirements:

  1. Language Delay / Disorder Standardised Assessment: PLS-5/CELF-P2/ CELF-5 Core Language/Expressive/Receptive This risk factor is for children who upon completion of standardised formal assessment have a standard score of <=84 (i.e., delayed) for one of receptive language, expressive language, or total language score. A sub-test out of the standard range doesn’t result in the child being assessed as having delayed language.

Clinical Identification in the absence of a standardised assessment For children who are unable to complete a standardised language assessment (due to additional needs, English as an Additional Language etc.), their language is to be assessed based on Clinical identification as detailed in the ASHA assessment guidelines for determining language delays and/or disorders ([https://www.asha.org/Practice-Portal/Clinical-Topics/Spoken-Language-Disorders/](https://www.asha.org/Practic e-Portal/Clinical-Topics/Spoken-Language-Disorders/)).

Risk Factors

1. Language Delay/Disorder

This includes using clinically appropriate:

  • Language sampling
  • Dynamic assessment
  • Systemic Observation/Contextual Analysis
  • Ethnographic Interviewing
  • Curriculum Based Assessment
  • Informal measures (checklists, rate of progress tools, normative comparison)

2. Speech Delay / Disorder

Standardised Assessment: GFTA-2 or DEAP This risk factor is for children who upon completion of a standardised formal speech assessment are assessed to be below the normal range.

Clinical Identification in the absence of a standardised assessment

For children who are unable to complete a standardised language assessment (due to additional needs, English as an Additional Language etc.), their speech is to be assessed as per ASHA guidelines; based on informal measures of single word articulation and phonological skills, connected speech samples, intelligibility and fluency ratings.

3. Social Communication Delay / Disorder

Diagnosis of Social Communication Delay/Disorder This risk factor is for when a child has a formal diagnosis of a social/communication delay or disorder, such as ASD or Social Anxiety diagnosis.

Clinical Identification in the absence of a formal diagnosis

This identification is to be based on observation and performance in group programs and settings, and administration of assessments (as per ASHA guidelines) such as the TOMI-2, Scaled Theory of Mind Assessment, Pragmatics Profiles and Checklists.

4. Literacy Delay / Disorder

Diagnosis of Phonological Awareness Delay or Literacy Delay/Disorder Diagnosis of delayed phonological awareness is based on formal assessment results (standardised or criterion referenced) of a phonological awareness test such as the CTOPP, PAT-2, CELF-4/P PA subtests, SPAT, QUILL, SEAPART. Diagnosis of literacy delay or disorder is based on any composite score in any formal reading/writing assessment (standardised or criterion referenced) such as the YARC, Woodcock.

Clinical Identification of literacy delay/disorder in the absence of a formal diagnosis

In situations where a standard or formal assessment has not yet happened or is not appropriate (significant delay, additional needs, English as an additional language), clinical identification will be made as per ASHA guidelines.

5. Insufficient Access to Sound

Insufficient Access to Sound: Late Diagnosis

This risk factor applies where a child’s diagnosis is made 6 months or more after the likely onset of hearing loss.

For children not diagnosed after newborn hearing screening: the onset of hearing loss is based on initiating cause if known (such as meningitis, trauma, ototoxic pharmaceutical treatment, etc). If there is no known initiating cause, an onset age of 6 months is assumed.

Insufficient Access to Sound: Device Compliance

Insufficient Access to Sound

Chronic Middle Ear Pathology

This is defined as three consecutive months of evidence of Type B tympanometry (with typical ear canal volume), which has been conducted by Paediatric Audiologist or Australian Hearing with minimum monthly checks while the child is without a head cold; or ongoing management through a GP and referral to ENT specialist.

Meets CI Evaluation Criteria

Based on the current evidence, referral for Implant Evaluation is a loss of >=70dBHL at 4kHz or ANSD in either ear (Ching et al 2007, Leigh 2013). The insufficient access to sound risk factor is indicated for all children where:

  • A formal Cochlear Implant Evaluation has not yet been completed, or
  • They are in the process of Cochlear Implantation evaluation or awaiting surgery, or
  • A family has chosen not to proceed with Cochlear Implantation despite it being clinically recommended but they are still choosing an oral approach (putting communication development at risk).

Seven (Ling) Sounds

This risk factor applies based on the child’s response to the Seven (Ling) Sounds assessed during the preceding 3 months, where the ‘minimum standard’ (required to facilitate appropriate spoken language development through listening) is not met for 25% or more of assessments.

The minimum standards are:

  • For a child under 12 months of age: unable to detect all Seven Sounds at conversational level from a distance of at least 1 metre through listening alone (may include duration or pitch cues while learning the task).
  • For a child 13–24 months of age: unable to detect all Seven Sounds at conversational level from a distance of at least 1 metre through listening alone with no cues.
  • For a child of 25 months or more: unable able to detect all Seven Sounds at conversational level from a distance of at least 3 metres through listening alone with no cues.

Functional Listening Index - Paediatric®

This risk factor applies when a child’s score is more than 1.5 standard deviations below the expected score for their age on the FLI-P (Functional Listening Index – Paediatric®).

Complex Family Context

This risk factor applies where there is documented family context or engagement that demonstrably prevents appropriate engagement with the therapy program. Presence of a complex family context that doesn’t demonstrably impact engagement with a program does not establish this risk factor.

The following are items that provide direct evidence of lack of appropriate Family Engagement:

  • High number of no-shows or notification of cancellation at the last minute (for example, 4 or more in a 12 month period without extraordinary circumstances).
  • High number of cancellations (for example, 8 or more in a 12 month period without extraordinary circumstances).
  • Poor level of engagement/buy-in during sessions and lack of necessary and recommended follow up.
  • Difficulty building clinical rapport in sessions across any/all team members and/or with the service as a whole.
  • Poor or no engagement with recommended external support services.

Contexts Demonstrating Potential Engagement Issues

A number of contexts have been demonstrated to potentially prevent appropriate engagement. Identification of some of the following contexts provide supporting evidence of engagement issues:

Communication context

  • Interpreter required
  • Non-English Speaking Background (NESB) / English as an Additional Language (EAL), Culturally and Linguistically Diverse (CALD) families
  • Lower family literacy or learning levels that impact on ability to access program content

Family response to Hearing Loss context

  • Minimal or no acceptance of Hearing Loss / additional diagnoses
  • Minimal or no ability/willingness to discuss hearing loss with others
  • Minimal or no acceptance of commitment to, and need for, intervention/support

Family History & Functioning context

  • History of child protection concerns or involvement
  • Separated parents
  • Single parent
  • History of family violence
  • Substance Use
  • Refugee background
  • Minority groups e.g. ATSI
  • Financial hardship
  • Parental unemployment
  • Unstable accommodation including homelessness

Parenting Capacity context

  • Personal health concerns that impact role as primary carer
  • Parent has additional needs
  • Caring for others e.g. a number of children with additional needs / carer to partner or elderly parent
  • Multiple children with hearing loss in family
  • History of Mental Health concerns
  • Attachment concerns
  • Child safety concerns including basic care