Protocol for determining EI funding level for children with hearing loss

Submission to the Standing Committee on the NDIS inquiry into NDIS Planning

6th September 2019; Dr Jim Hungerford, Deputy Chair

Overview

This submission focusses on the Early Intervention plans provided for children with hearing loss under the NDIS where the parents desire their child to be able to speak.

Currently, children who are diagnosed and referred to Hearing Australia (previously called Australian Hearing) normally receive the first plan within one month, based on an automatic process using information provided by Hearing Australia. Subsequent plans are developed using normal procedures.

This system has a number of critical faults:

The first automatic plan is based solely on the level of hearing loss, not on the needs of the child. As a result the plan level for children with lower levels of hearing loss is substantially below the cost of the service needed to enable the child to develop to their spoken language goals.
There is no structured approach for subsequent plans. As a result the children normally receive a plan well below the cost of the service needed to enable the child to develop to their spoken language goals.
There is no requirement for the parents to use the funding effectively. The parents of children with hearing loss are not expert in the therapy required and as a result often choose services that will not enable achievement of the spoken language goals they have decided on for their child.
There is insufficient funding for children with multiple disabilities. Children with multiple disabilities are normally funded well below the sum of the cost of the services needed for each of their disabilities.

As a result of the above children are not being funded for the services they require to achieve appropriate levels of spoken language. Given this First Voice has made a number of recommendations to the NDIS and the Agency has been active and positive in its engagement. However, despite repeated meetings and years of engagement, these recommendations have not been taken up by the agency.

First Voice would welcome the opportunity to discuss these issues with the Committee.

Recommendations

First Voice makes the following recommendations to address the critical issues in NDIS planning for children with hearing loss:

A structured approach is adopted to determine the funding level for a child with hearing loss. This approach needs to incorporate the level of hearing loss, the age of the child, and the presence of specific factors (diagnosed delay in language, speech or social skills; diagnosed insufficient access to sound; or documented family context or engagement that is demonstrably preventing appropriate engagement with the therapy program).

The approach that First Voice recommends is appended to this submission (this has previously been supplied to the NDIA).

First Voice - submission to the Joint Standing Committee on the NDIS September 2019 Page 1 of 2

Stated supports be used to ensure funding is used effectively The planning system must ensure that the funding is used as per the NDIS Act. However, because of the Agency’s desire to support participant choice, the current implementation of the planning process allows use of the funding in ways that are not in accordance with the Act:

Allowing funding of supports that are not likely to be effective (clause 34(a) and 34(d))
Allowing funding of supports that are not likely to be value for money (clause 34(c)) Parents of children with hearing loss do not deliberately choose supports that are ineffective or poor value for money; however they may do so because of their lack of expert knowledge.

The NDIS has the authority to direct that effective supports be used (clause 33(3)). This is often used, for instance to ensure that purchased equipment is suitable and safe for the intended use, however it is not being applied in this instance.

The way that restrictions to the use of funding is normally done is by specifying the supports as ‘Stated Supports’ and this is suitable in this instance.

First Voice recommends that Early Intervention supports for children with hearing loss seeking spoken language be recorded on the child’s plan as Stated Supports, restricted to use with specialist integrated providers recognised by the NDIA.

Children with multiple disabilities receive funding sufficient for their needs The standard planning approach used for children with further disabilities in addition to hearing loss normally results in a plan that does not provide for the services required to achieve their spoken language goals in addition to their other therapies.

Presumably the thought behind this is that the provision of multiple therapies to a single child is more financially efficient than the provision of separate therapies. This is not the case where very different therapies are required. For instance, a child with cerebral palsy and hearing loss requires both physical therapy and listening & spoken language therapy at the same level as if they had only one or the other disability. Indeed the total cost is significantly increased due to the need for increased social & emotional support for the family and for the coordination of the two types of therapy.

First Voice recommends that Early Intervention supports for children with multiple disabilities be determined for each disability separately; and then the plan values for each be recorded on the child’s plan as Stated Supports, restricted to use with specialists in the appropriate areas.

First Voice - submission to the Joint Standing Committee on the NDIS September 2019 Page 2 of 2

Children with hearing loss where the family desires spoken language: protocol for determining the level of specialist early intervention funding required

Plan funding levels ……………………………………………………………………………………………………………………. 2 Definitions for levels of hearing loss …………………………………………………………………………………………… 2 Definitions for Risk Factors ………………………………………………………………………………………………………… 2 Protocol for children receiving their first plan for specialist Early Intervention ………………………………… 3 Initial automatic plan: …………………………………………………………………………………………………………… 3 Protocol for children receiving subsequent plans for specialist Early Intervention …………………………… 3 Standard plan if there are no risk factors: ………………………………………………………………………………… 3 Standard plan if there are one or more risk factors: ………………………………………………………………….. 3 Risk Factor Documentation requirements …………………………………………………………………………………… 4

Language Delay / Disorder ………………………………………………………………………………………….. 4
Speech Delay / Disorder ……………………………………………………………………………………………… 4
Social Communication Delay / Disorder ………………………………………………………………………… 4
Literacy Delay / Disorder …………………………………………………………………………………………….. 4
Insufficient Access to Sound ………………………………………………………………………………………… 5
Complex Family Context ……………………………………………………………………………………………… 6 In the context of this document, early intervention is provided to enable a child with hearing loss to develop the best spoken language that they are capable of (and for children without additional disabilities this should be age-appropriate language), so that they have the opportunity to most easily develop to their potential within mainstream society.

Outside any additional disability a child may have, the challenges that determine the level of support these children require are:

The nature and severity of their hearing loss;
An existing communication delay or disorder (of language, speech, social communication or literacy skills);
Insufficient access to sound; and
A family context or engagement that is preventing appropriate engagement with the therapy program.

The children who require the highest levels of support are those who face the greatest challenges (not simply the level of hearing loss). Also children in their first year of early intervention require higher levels of support to enable the family and child to successfully commence on the highly specialised pathway required to achieve age-appropriate language. The required level of early intervention support is determined by the combination of these factors that apply to a particular child.

Children with additional disabilities require separate additional funding.

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Plan funding levels The default funding levels are appropriate to support the specialist Early Intervention required for the development of spoken language for children with hearing loss. The funding levels are:

Intense          High          Medium       Low

(level 4)            (level 3)            (level 2)            (level 1)

$22,750.00       $15,600.00       $8,040.56        $4,385.76

These funds are for specialist Early Intervention to develop spoken language; if the child has additional disabilities that require other supports these need to be funded separately and in addition.

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

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

Normal 0-20 dBHL Mild 21-40 dBHL Moderate 41-60 dBHL Severe or worse 61dBHL or worse

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.

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 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

Definitions for Risk Factors

There are three Risk Factor categories that determine the amount of service required for a child with hearing loss. These are:

Existing communication delay or disorder; affecting a. Language b. Speech c. Social Communication d. Literacy
Insufficient access to sound
Complex Family Context These risk factors require documentation to Hearing Australia and to the Early Childhood Partner by an appropriately qualified clinician (an audiologist; a Listening and Spoken Language therapist, a speech pathologist or a Teacher of the Deaf; or a clinical psychologist, counsellor or social worker). The documentation required to substantiate these risk factors is provided later in this document.

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Protocol for children receiving their first plan for specialist Early Intervention Children in their first plan for early intervention receive a higher level of support than is typical for later years. Inherently these children and their families already have key risk factors due to the challenges of: a family struggling with the grief of lost expectations; learning about their child’s disability and how it needs to be managed; and the issues with keeping hearing devices on babies who have not yet learned the benefits from access to sound. This higher level of support ensures that these and any other risks to outcomes are identified and addressed in the critical earliest period of life.

To enable the initial automatic plan, the level is based solely on the diagnosed level of loss.

Initial automatic plan:

Medium if there is unilateral loss or if bilateral ‘Mild’.
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 following 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 to receive a cochlear implant they receive a High plan.
Otherwise: o Low if there is unilateral loss. o Medium if there is ‘Mild’ loss in both ears. o If there is loss in both ears and the average loss is ‘Moderate’ or worse:  High up until 36 months of age, then  Medium from 37 months of age onward.

Standard plan if there are one or more 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 ‘Moderate’ or worse. Protocol for determining EI funding level for children with hearing loss Page 3 of 6

Risk Factor Documentation requirements

Language Delay / Disorder Standardised Assessment: PLS-5 /CELF-P2/ CELF-4/5 Core Language/Expressive/Receptive This risk factor is for children who upon completion of standardised formal assessment have a standard score of <=84 (ie, 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/).

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)

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.

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.

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.

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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.

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

This risk factor applies where a child is not wearing their device(s) for at least 80% of waking hours.

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.

Insufficient Access to Sound: 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 who meet this criteria 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).

Insufficient Access to Sound: 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 is 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.

Insufficient Access to Sound: Functional Listening Index - Paediatric

This risk factor applies when a child’s score is lower than the 75% percentile of all children through the Early Intervention program, and/or rate of listening progress is less than required to achieve potential language outcomes.

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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-show’s 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 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
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