Submission 39 — Aussie Deaf Kids and Parents of Deaf Children (39.1 Supplementary to submission 39) — The provision of hearing services under the National Disability Insurance Scheme (NDIS) | External submission

24 August 2017

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.

PO Box 231 BRUNSWICK HEADS NSW 2483

P: 02 6684 2571      M: 0419 495 032        E: info@aussiedeafkids.org.au

ABN: 39 127 705 793

The committee is seeking your views on the impact this delay The delay associated with access and provision of adequate has on access and provision of adequate supports and services supports and services for children who are deaf or hard of for deaf and hard of hearing children, their families and carers. hearing children 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 0-25 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 intervention requirements without further assessment when the from birth to their 26th birthday. 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

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

•  the hearing loss of the person necessitates the use of     There are three points that need consideration with this

personal amplification. statement:

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

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

It is essential children with absent or underdeveloped auditory nerves should receive automatic eligibility; these children do not benefit from amplification.
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 Aussie Deaf Kids support this streamlined access approach.

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.

This same body of evidence suggests that brain development Spoken language capability for any person with a hearing loss is and language capability have been achieved by the age of 26. predicated on their use of their listening devices. Without these Therefore, adults aged 26 years and over are not immediately devices, people who are deaf or hard of hearing and use spoken accepted to be likely to benefit from the same early intervention language are unable to communicate with family and friends or approach because there is no requirement to support the gain meaningful employment, which is contrary to the intent of the NDIS. Our system in Australia supports children with hearingdevelopment of the auditory pathways. Adults aged 26 years loss to optimise their spoken language through the use of high-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 The effect of this change is that prospective participants who are devices is a considerable and will be prohibitive for some aged 0-25 (inclusive) who meet the audiometric criteria will meet people. 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 devices 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 clients 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 criteria. “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 Section 8.3.3 is unclear and appears to contradict the early impairments’ has been added at 8.3.3: intervention Section 9.5.2.

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

Hearing impairments may result in reduced functional capacity        •  Children with a hearing impairment of ≥ 65 decibels in the

to undertake communication, social interaction, learning and better ear (pure tone average of 500Hz, 1000Hz, 2000Hz and 4000Hz) are eligible to be lifelong participants in theself-management activities. Generally, the NDIA will be satisfied

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

substantially reduced functional capacity to perform one or more early intervention criteria will receive NDIS funding until activities. This audiometric criterion reflects the lower limit of 26 years of age when their funding will be reviewed.

what is likely to constitute a substantially reduced functional          •  Adults over 26 years of age with a hearing impairments <

capacity to undertake relevant activities. 65dB decibels in the better ear (pure tone average of 500Hz, 1000Hz, 2000Hz and 4000Hz) continue to have access to personal amplification devices through theHearing impairments < 65dB decibels in the better ear (pure 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.”

Submission 39 — Aussie Deaf Kids and Parents of Deaf Children (39.1 Supplementary to submission 39) — The provision of hearing services under the National Disability Insurance Scheme (NDIS)