NDIA Accountability Project

Provision of hearing services for deaf children under the NDIS

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Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100 Parliament House Canberra ACT 2600

Re: The provision of hearing services under the National Disability Insurance Scheme (NDIS)

Thank you for the opportunity to comment on the provision of hearing services under the National Disability Insurance Scheme (NDIS) as outlined in the email from the Committee Secretary of 18 August 2017.

Before commenting on the requested discussion points, two terms that require clarification for parents:

  • “Provision of hearing services” – Hearing services is synonymous with the services that Australian Hearing currently provide to all children and young people under the age of 26 years of age, i.e. audiological management, provision of listening devices and their repair and replacement. It is unclear whether this is what is meant within the discussion points.
  • “Early intervention” – In Australia, the term “early intervention” in the context of children with hearing loss, refers to early childhood intervention services and the term “early intervention” is not used past the age of 8 years of age. However, in the broader academic literature regarding best practice for children who are deaf or hard of hearing, “early intervention” includes both audiological management and early childhood intervention. Within the context of the NDIS, early intervention is “intended to benefit a person by reducing their future needs for supports,” i.e. there is no age requirement and a person who receives early intervention does not necessarily become a participant of the NDIS following the early intervention period. More clarity about “early intervention” in this context is required to avoid confusion. An explicit definition is required for all stakeholders - especially, parents, service providers and NDIS planners.

In addition, while Australian Hearing is to remain a statutory authority, contestability of hearing services following the transition to the NDIS in mid-2019 remains a considerable concern for our organisation. More discussion and consideration of the issue of contestability is critical to ensure equity and quality of hearing services continues.

We have commented on the key discussion points in the table below.

Impact of Delay on Access and Provision of Supports

The committee is seeking your views on the impact this delay has on access and provision of adequate supports and services for deaf and hard of hearing children, their families and carers.

The delay associated with access and provision of adequate supports and services for children who are deaf or hard of hearing has been and continues to be problematic for parents and service providers.

The uncertainty associated with the NDIS eligibility criteria for children who are deaf or hard of hearing continues to be regularly discussed on Aussie Deaf Kids’ (ADK) social media sites. It is incomprehensible that this uncertainty continues, especially given the extensive rollout of the NDIS.

This uncertainty means that there are considerable discrepancies in the plans for children with a similar hearing loss. Children with parents who are “good” advocates are at an advantage in acquiring better packages for their children, which should not be the case. There must be equity, so all children receive the services and support they require irrespective of the capacity of their parents to advocate for their needs. Parent express anxiety that they might be disadvantaging their child and impacting on the child’s potential outcomes.

There is also a sense of urgency that parents must request as much as possible at the initial planning meetings because they are worried that their child will not receive the necessary services and support required. This is stemming from the uncertainty and inconsistencies within the current system.

Discrepancies with regards to children with mild and unilateral hearing loss are also causing parental anxiety and discontent. There has been at least one incident that we are aware of,

where the family have been advised that their child, who had previously received funding, is no longer eligible for the NDIS.

The delay in clarifying what will be covered under the NDIS is resulting in potentially unrealistic expectations about what will be funded for children with hearing loss. Clarification around the timing of cochlear implant and hearing aid upgrades, in particular, is required as there is much conjecture amongst parents about this topic. “9.5.2 Early intervention for hearing impairment for people aged The use of the term “early intervention” is confusing and is addressed in our cover letter.

The NDIA will be satisfied that a person meets the early ADK supports the ongoing funding of children with hearing loss from birth to their 26th birthday. intervention requirements without further assessment when the
person:

  • is aged between birth and 25 years of age; and

  • has confirmed results from a specialist audiological It would be helpful if the terms bilateral and unilateral were included within this statement. These are terms the parents understand and use to describe their child’s hearing loss. For example, Bilateral or unilateral hearing loss ≥ 25 decibels at 2 assessment (including electrophysiological testing when or more adjacent frequencies that is likely to be permanent or frequencies, which is likely to be permanent or long term; required) consistent with auditory neuropathy OR hearing long-term. and loss ≥ 25 decibells in either ear at 2 or more adjacent

  • the hearing loss of the person necessitates the use of There are three points that need consideration with this personal amplification. statement: 1. This denies culturally Deaf parents the right to choose not to use personal amplification for their child. While many Deaf parents choose listening devices for their children, the child’s

Streamlined Access Approach

  1. The right to the NDIS should not be premised on their use of a device.

  2. It is essential children with absent or underdeveloped auditory nerves should receive automatic eligibility; these children do not benefit from amplification.

  3. There is minimal empirical evidence as to the efficacy of amplification devices for babies and young children with MBHL or UHL. Parents should not feel pressured to use a device simply to access NDIS funding. These children, however, do require ongoing audiological management and access to early childhood intervention and should, therefore, be eligible to receive early childhood intervention through the NDIS, irrespective of their use of a listening device.

  • This streamlined access approach for early intervention acknowledges a rich body of evidence that recognises that early intervention support up to and including the age of 25 is critical for people with hearing impairment as the developing brain requires consistent and quality sound input and other support over that period to develop normally and ameliorate the risk of lifelong disability.

Aussie Deaf Kids support this streamlined access approach.

This same body of evidence suggests that brain development and language capability have been achieved by the age of 26. Therefore, adults aged 26 years and over are not immediately accepted to be likely to benefit from the same early intervention approach because there is no requirement to support the development of the auditory pathways. Adults aged 26 years and over with hearing impairment will, therefore, be assessed.

normally, on a case by case basis, having regard to the quality listening devices. It is counter-productive to deny access availability of all relevant evidence.” to listening devices at a time when individuals are likely to begin employment, pay taxes, and start a family. The cost of listening device is a considerable and will be prohibitive for some people.

The effect of this change is that prospective participants who are aged 0-25 (inclusive) who meet the audiometric criteria will meet the early intervention requirements without further assessment.

We hear of many cases where former child clients of Australian Hearing are unable to afford hearing aids, which impacts on their family and work life. These people use old outdated or malfunctioning device that need replacement; or they purchase one hearing aid only; or they forgo some life necessities in order to purchase new aids.

The transition of former child client out of NDIS must be carefully considered. Ceasing NDIS eligibility for those who have previously been eligible will cause upheaval and hardship.

Also, the following text will be removed from List D, Section 4: ADK supports this deletion of these eligibility criterion. “Deafness/hearing loss – a 45 decibels or greater hearing impairment in the better ear, based on a 4 frequency pure tone average (using 500, 1000, 2000 and 4000Hz)”

An Additional Section entitled ‘Additional guidance for hearing impairment’ has been added at 8.3.3:

“8.3.3.Additional guidance for hearing impairments We view the following scenario as more appropriate

  • Children with a hearing impairment of ≥ 65 decibels in the better ear (pure tone average of 500Hz, 1000Hz, 2000Hz and 4000Hz) are eligible to be lifelong participant in theself-management activities. Generally, the NDIA will be satisfied

Eligibility Criteria

that hearing impairments of ≥ 65 decibels in the better ear (pure NDIS. tone average of 500Hz, 1000Hz, 2000Hz and 4000Hz) result in • Children who do not meet the above criteria but meet the early intervention criteria will receive NDIS funding until substantially reduced functional capacity to perform one or more 26 years of age when their funding will be reviewed. activities. This audiometric criterion reflects the lower limit of • Adults over 26 years of age with a hearing impairments < what is likely to constitute a substantially reduced functional 65dB decibels in the better ear (pure tone average of capacity to undertake relevant activities. 500Hz, 1000Hz, 2000Hz and 4000Hz) continue to have access to personal amplification devices through theHearing impairments < 65dB decibels in the better ear (pure decibel levels may also qualify for support under certain conditions: Hearing Services program.tone average of 500Hz, 1000Hz, 2000Hz and 4000Hz) in conjunction with other permanent impairments (for example vision or cognitive impairments), or where there is evidence of significantly poorer than expected speech detection and discrimination outcomes, may also be considered to result in substantially reduced functional capacity to undertake relevant activities.”

Thank you again for this opportunity.

Yours sincerely

Ann Porter AM CEO Aussie Deaf Kids

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