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Submission to the Joint Standing Committee on the NDIS inquiry into the transitional arrangements for the NDIS
Dr Jim Hungerford, CEO
August 2017
This submission focusses on the impact that the NDIS transitional arrangements have on children with hearing loss.
As documented by numerous previous submissions to the Committee, children with hearing loss who are diagnosed and rapidly progress through to a specialised provider of listening & spoken language therapy will normally then go on to develop spoken language at the same level and at the same rate as other children without hearing loss. However, delays of even a few months in the provision of this specialist assistance can result in potentially permanent delays in language development.
The NDIS transitional arrangements have adversely affected the pathway for children for children with hearing loss. The following recommendations are made to address these problems:
Recommendation 1: Australian Hearing be appointed as the single designated Early Childhood Partner for children diagnosed with hearing loss across Australia.
Recommendation 2: The NDIA provide the required resources to complete and implement the national reference packages for children with hearing loss.
Recommendation 3: The NDIA restricts funding for early intervention for children with loss to providers that meet appropriate quality standards.
Recommendation 4: The NDIA provides long-term funding surety to peer-based information services for parents of children with hearing loss.
The Shepherd Centre – NDIS Transitional Arrangements, August 2017 Page 1 of 3
The following points are made according to the terms of reference for this inquiry:
- The boundaries and interface of NDIS service provision, and other non-NDIS service provision, with particular reference to health, education and transport services.
A key issue in this area for children with hearing loss is the reduction in State-funded guided referral systems to ensure children with hearing loss engage with a specialist early intervention provider.
Prior to the introduction of the NDIS a number of States & Territories provided a guided referral service that was funded from either Health or Education (depending on the jurisdiction). These services actively engaged with all children diagnosed with a hearing loss and ensured they engaged with a specialist service provider chosen by the family that matched their desires for their child’s therapy.
The need for this service was driven by the fact that over 90% of the parents had no prior experience of childhood hearing loss. As a result they did not know what services were required or the urgency in accessing services that was needed; and without guidance unacceptable delays occurred prior to therapy.
With the introduction of the NDIS, and the transfer of ‘disability’ funding, a number of these guided referral systems have been reduced or are under threat. This is already leading to significant delays in families accessing the specialist services that their child needs.
However, given the patchwork nature of these services across Australia, along with the development of the ECEI Approach, an improved and nationally consistent guided referral pathway can be provided through the appointment of Australian Hearing as the Early Childhood Partner for children with hearing loss. With this role Australian Hearing would be funded to provide the required guided referral pathway for these children.
Recommendation 1: Australian Hearing be appointed as the single designated Early Childhood Partner for children diagnosed with hearing loss across Australia.
- The consistency of NDIS plans and delivery of NDIS and other services for people with disabilities across Australia.
A key issue in this area for children with hearing loss is the dramatic variation in NDIS plans provided to children with equivalent levels of need due to their hearing loss.
This issue has been accepted by the NDIA and was one of the reasons for the establishment of the Early Childhood Intervention (hearing loss) expert reference group in 2014.
However despite this group being commissioned almost three years ago, and in contrast to repeated assurances provided by the NDIA, the required national reference packages have still not been established. This is not due in any way to the expertise or commitment of the NDIA staff involved in this process. Over the last three years hundreds of children with hearing loss have received totally inappropriate plans, putting their future at risk – entirely unnecessarily.
Recommendation 2: The NDIA provide the required resources to complete and implement the national reference packages for children with hearing loss.
The Shepherd Centre – NDIS Transitional Arrangements, August 2017 Page 2 of 3
A second key issue in this area for children with hearing loss is the unnecessary variation in the delivery of NDIS plans provided to children with hearing loss.
The NDIA accepts that providers supporting children with hearing loss must have specific expertise and frameworks, so that the children can achieve the outcomes that their parents desire for them. It is accepted that non-specialist services, or sole practitioners, cannot provide the nature of services required for these children to achieve good levels of spoken or signed language.
However the NDIA has not acted to ensure that funding is only provided to services that can provide the outcomes that parents want; due to a perceived conflict with the principle of parent choice. However this is only a perceived conflict – the requirements of the NDIS Act are explicit about the need for evidence based therapy for early intervention. For children with hearing loss, the only services that have this evidence are the specialist providers of spoken or signed language therapy. The parent choice needs to be among these providers who have the evidence that they can achieve the outcomes the parents want.
Recommendation 3: The NDIA restricts funding for early intervention for children with loss to providers that meet appropriate quality standards.
- The rollout of the Information, Linkages and Capacity Building Program. A key issue in this area for children with hearing loss is the need to provide support for peer-based information services for parents of children with hearing loss.
It is typical for all parents of a child diagnosed with a disability to be struggling with grief and confusion. However, in contrast to other disabilities, with hearing loss it is imperative that these parents very quickly understand what is required for their child and the need to act, so that their child has the opportunity to achieve the outcomes they desire.
Access to a strong and supportive network of other parents who have previously been in similar situations is critical for a new parent. These networks; such as Parents of Deaf Children, the Canberra Deaf Children’s Association, and Aussie Deaf Kids; are critical in providing the support that can enable a parent to cope with their child’s situation.
The future of these organisations is under pressure due to the move to the ILC framework and resulting lack of funding surety. It is very likely that the loss of these organisations would result in significantly higher costs in the subsequent catch-up support that these children and families will require through their NDIS plans.
Recommendation 4: The NDIA provides long-term funding surety to peer-based information services for parents of children with hearing loss.
The Shepherd Centre – NDIS Transitional Arrangements, August 2017 Page 3 of 3