NDIA Accountability Project

Submission 40 — The Shepherd Centre (40.1 Supplementary to submission 40) — The provision of hearing services under the National Disability Insurance Scheme (NDIS)

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

ABN: 61 000 699 927

Supplementary submission to the Joint Standing Committee on the National Disability Insurance Scheme inquiry into the provision of hearing services under the NDIS, February 2017

Dr Jim Hungerford, CEO

Summary

This is a supplementary submission made by The Shepherd Centre, subsequent to the hearing of the Joint Standing Committee on the National Disability Insurance Scheme inquiry into the provision of hearing services under the NDIS, held in Melbourne on 20th February 2017.

Evidence provided to the Committee testified to the inadequacy of the current NDIS funding for effective early intervention services for children with hearing loss. The Committee asked for specific suggestions as to what actions should be taken to address these issues; this supplementary submission addresses that request.

In addition, evidence was provided to the Committee regarding the adequacy of audiological services in the case of a contestable market for paediatric audiology under the NDIS. The Shepherd Centre does not agree with those assertions and this submission addresses that point.

Need for the NDIS to fund effective EI for children with hearing loss As demonstrated to the Committee, if effective early intervention is provided very soon after a child is diagnosed with permanent hearing loss, that child has every chance of achieving the same language ability as a child without hearing loss.

However if that intervention is not provided or delayed; if the intervention is not fully funded and so is not sustainable; or if non-effective intervention is provided; then those children will very likely not achieve the language they should. This results in correspondingly worse life outcomes for the child.

Unfortunately the current NDIS approach is generating problems in all four of these key areas:

  1. Some children with permanent hearing loss are being assessed as not being eligible for early intervention funding, despite the evidence of the impact of losses on their school and social outcomes;

  2. The referral pathways for children have become more convoluted, delaying the time until children receive funded services by many months;

  3. The funding provided is calculated only by hour of service, not by the effort required to deliver outcomes, with the total amount of funding being capped far below the cost incurred; and

  4. Services are being funded that do not produce good language outcomes (such as single therapist support), wasting both money and the potential of the child.

As a result The Shepherd Centre makes the following key recommendations (the recommendations and the respective numbering are taken from the main submission of The Shepherd Centre to the Committee):

Eligibility

  1. All children developing permanent hearing loss prior to age 6 are to be eligible for early intervention services under the NDIS. The NDIS entry criteria need to make it clear that children with unilateral hearing loss, or mild bilateral hearing loss, are eligible for EI without further needs evaluation; as well as children with more severe levels of loss being eligible.

  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. The NDIS entry criteria need to make it clear that older children developing more severe hearing loss are eligible for early intervention; however children with unilateral loss or bilateral mild loss do not require EI if the loss develops after age 5.

  3. All children developing permanent hearing loss are to be eligible for hearing devices under the NDIS. The NDIS entry criteria need to make it clear that all children with hearing loss are eligible to access hearing devices (such as hearing aids); maintaining the current situation with Australian Hearing.

Rapid provision of services

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

A system is needed with ‘honest brokers’ funded by the NDIS. These staff would receive referrals from the diagnostic programs that are already funded and established in each State or Territory; and would then work with those referred families and children to ensure that they were engaged with the NDIS; and also engaged with a hearing device provider plus a specialised early intervention provider (both of the family’s choice); as quickly as possible.

The Shepherd Centre supplementary submission to the inquiry into hearing services under the NDIS, February 2017 Page 2 of 6

Full funding and quality control of required services

  1. Adoption of the appended ‘Protocol for NDIS EI support for children with permanent hearing loss’ (or an equivalent) to ensure that children with hearing loss can continue to achieve spoken language at the same level as their peers without loss. A national reference package is required to establish the minimum standard of support provided to children who have a diagnosis of permanent hearing loss prior to 6 years of age. This package needs to establish:

  • Eligibility criteria (as per the previous recommendation)

  • Setting the level of support dependent on a combination of: audiological diagnosis; presence of any communication delay; any additional risk factors; age; and any additional needs the child has

  • Funding (for each level of service) at a magnitude that will sustain the required therapy to achieve outcomes; with that funding not linked to number of face-to-face hours but instead linked with demonstration of achieving outcomes

Need for the NDIS to require additional controls on paediatric audiology Paediatric audiology needs to be treated differently to adult audiology under the NDIS. 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. This issue has received significant press coverage.

If this financial incentive existed when supplying devices for children, where parents were unable to assess the clinical benefit (they cannot listen through the ears of their baby!) and where they would always want the best for their child, there would be an unacceptable risk of exploitation.

Professionally, 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.

Systems must be put in place to ensure that the NDIS does not create new problems that are worse than the current issue of lack of choice.

As a result The Shepherd Centre makes the following key recommendation (the recommendation and its number is taken from the main submission of The Shepherd Centre to the Committee):

Accreditation of paediatric audiologists and paediatric audiology facilities

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

An accreditation system must be established to identify the individuals and 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)

The Shepherd Centre supplementary submission to the inquiry into hearing services under the NDIS, February 2017 Page 3 of 6

  • 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; or in the absence of this, a requirement that they only provide advice that is in the best interests of the child

  • 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 result.

The Shepherd Centre supplementary submission to the inquiry into hearing services under the NDIS, February 2017 Page 4 of 6

Appendix: 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

inear Moderate  - risk: High        - risk: High        - risk: Med        - risk: High

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

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

Mild      - risk: Low        - risk: High        - risk: Nil**       - risk: High

the    21-40dB  + risk: Low     + risk: High     + risk: Nil**    + risk: High

inear Moderate  - risk: Med        - risk: High        - risk: Low        - risk: High

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

91+dB   + risk: High     + risk: High     + risk: High     + risk: High
  • 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. + Risk factors: the presence additional risk factors that significantly increase the support needs of the child. Relevant risk factors are listed below.

The Shepherd Centre supplementary submission to the inquiry into hearing services under the NDIS, February 2017 Page 5 of 6

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:

  1. 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;

  2. Intervention to support the development of age-appropriate play and social skills;

  3. Audiological management where necessary to ensure assistive devices are being appropriately and effectively utilised;

  4. Support and education for the family and for inclusion of the child into the family’s community;

  5. 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:

  1. 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.

  2. 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.

  3. 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.

  4. 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

•   Bilingual/multilingual environments       •   Recurrent middle ear pathology

The Shepherd Centre supplementary submission to the inquiry into hearing services under the NDIS, February 2017 Page 6 of 6