6 March 2017

Committee Secretariat
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
CANBERRA ACT  2600

Supplementary submission: Inquiry into the provision of hearing services under the
National Disability Insurance Scheme

Dear Sir/Madam

Thank you for the opportunity to recently address the committee in Melbourne, and to have the
opportunity to provide a supplementary submission to elaborate on matters discussed at the
tearing. Please find this supplementary submission attached.

I also wish to provide the committee with online references to three new research reports that
should be read as supplementary to both our original and supplementary submissions:

- Deloitte Access Economics, Cost benefit analysis of First Voice members’ early intervention
programs, January 2017
http://www.firstvoice.org.au/wp-content/uploads/2016/09/First-Voice-Deloitte-Access-Economics-Cost-
Benefit-Analysis.png

- Deloitte Access Economics, Comparative review of reported outcomes from interventions for
children with hearing loss, Literature Review, January 2017
http://www.firstvoice.org.au/wp-content/uploads/2016/09/First-Voice-Deloitte-Access-Economics-Literature-
Review.png

- First Voice, Report on education, employment & social outcomes of First Voice member centre
graduates (18-28 years), January 2017
http://www.firstvoice.org.au/wp-content/uploads/2016/09/First-Voice-Graduate-Outcomes-Report.pdf

Thank you for the opportunity to bring the matters to the attention of the Committee.

Yours faithfully

Mr Michael Forwood
Chair, First Voice
C/- Cora Barclay Centre
185 Melbourne Street
NORTH ADELAIDE SA  5006

Supplementary Submission to the Joint Standing

Committee on the NationaL Disabiiity Insuranee Schemo

lnquiny Into tho provislon ot hearlng servicos uncor thc Nattonal Dlsability Insoarance Schomo

Fron Firs+ Voico

Submited by:

Michacl Forwodd Cholr, Flrst Voloio O/Coro Barcloy Cenlro 18S Melbouno Stroot NOOTH AOOLAIODI SO 3OOOS

G Morch 2017

Contents

1 Introduction p1 2 Current situation p1 3 Specific solutions to immediate and urgent issues p2 4 The root problem (and potential structural solutions) p3 5 Conclusion p5

Introduction

This is a supplementary submission from First Voice following the public hearing of the Joint Standing Committee on the NDIS inquiry into the provision of hearing services under the NDIS held in Melbourne on 20 February 2017.

Its purpose is:

• to reinforce the urgency of finding solutions to key policy and funding issues affecting hearing-impaired children under the NDIS; and
• to promote further consideration of an alternative services and funding model that is specifically designed to support evidenced-based, outcomes-focused early intervention into the future.

3. Specific solutions to immediate and urgent issues

In terms of daily operations and child/family outcomes, the following solutions are needed:

1. Mandate evidence-based clinical protocols including a guided pathway

It is essential that a national guided referral pathway to expert providers with proven outcomes be introduced as a matter of urgency.

This matter has frequently been raised with the NDIA during the NDIS Children’s Trial in SA, and subsequently, but to no avail.

The extraordinary short and long term outcomes achieved by hearing-impaired children in Australia are predicated on the continuation and strengthening of current best practice clinical guidelines as detailed in a number of submissions to the Committee, including First Voice’s original submission.

Based on service providers’ knowledge and experience of the different referral arrangements across Australia, it should not be difficult to design a national guided referral pathway that is neutral, family friendly, transparent and accountable.

First Voice would be happy to work with the Royal Institute of Deaf and Blind Children (RIDBC) and other interested parties in drafting a protocol for consideration by the Committee and to submit it in time for the Committee’s consideration.

2. Address NDIS funding shortfalls and payment arrangements

An urgent review of funding arrangements is urgently needed. This could be done either by adjusting existing arrangements or by introducing an alternative funding mechanism specifically for early intervention programs of the kind provided for hearing-impaired children.

Current NDIS funding arrangements result in a gap of $6-8K per child per year between participant funding and the costs of early intervention program delivery. For a service provider with 250 children this represents an annual revenue shortfall in direct service delivery costs of $1.5-2M. This is clearly not sustainable. However this issue has persisted for 18 months (since September 2015) and remains unresolved.

Two possible solutions have been flagged:

• A proposal discussed by the Expert Reference Group to revise NDIS items of service relevant to complex, multi-disciplinary early intervention programs to include an hour of “integrated support” for every hour of direct face-to-face therapy; and
• The initial South Australian solution in which the NDIA simply agreed to provide families with sufficient funding to cover the costs of their chosen early intervention communication program subject to certain conditions including transparency of costs; scaling of services in line with the child’s measured progress in speech, language and social development; immediate passing back to the NDIS of savings from scaling down; annual reporting on program outcomes; and openness to audit at the discretion of the NDIA.

While it is for the NDIA to determine how best to proceed, First Voice sees advantages in the latter approach which would essentially be an outcomes-based funding approach similar to that which operated successfully with the Cora Barclay Centre during the first two years of the NDIS Children’s Trial.

Include Children With Unilateral Hearing Loss

Under early intervention principles all children with diagnosed hearing loss should be automatically eligible for early intervention funding.

It is self-evident that the situation of children with unilateral or mild bilateral hearing loss (probably less than 500 new cases per year) is fundamentally different from that of the very large number adults with similar hearing loss acquired in later life after they have learnt to speak, been to school, become employed and so on.

As per previous submissions to the Committee:

• There is strong evidence that people with unilateral hearing loss and mild bilateral loss are at significant risk of diminished communication capability, poor educational outcomes and social emotional and psychological problems. It is estimated that about 30% of these children will suffer significant impairment. Current research in this field suggests that this statistic will rise.
• The purpose of early intervention is to maximise people’s well-being and to reduce service requirements and costs in later life. Thus it makes social and economic sense to provide children with unilateral hearing loss with the necessary services to achieve these goals.
• The cost of early intervention for children with unilateral hearing loss – which is predominantly short-term parent education and training followed by ongoing monitoring and assessment where appropriate – is low, often as little as of $4-6K in the first instance.

Early intervention for children with unilateral hearing loss is inexpensive and an effective approach to minimising adverse impacts a significant number of children. It makes good sense in terms of improved life outcomes, avoided costs, and overall cost benefit.

The root problem

Reflecting on the Committee’s questions, First Voice believes that the root problem is that NDIS policies and funding arrangements are fundamentally at odds with what is required for evidenced-based early intervention programs to achieve and sustain high-level client outcomes.

The NDIS policy and funding arrangements for the full scheme have been developed primarily for people with disabilities requiring lifelong personal services and supports. These arrangements are inconsistent with basic requirements for effective multi-disciplinary listening and spoken language early intervention. It is therefore not surprising that these arrangements have given rise to the operating policy and funding issues that have defied resolution over an extended period of time.

Five Main Areas Of Disconnection Between Ndis Generic Policy And Funding Arrangements And Early Intervention Requirements:

• 1. The main scheme principle of participant choice and control conflicts with the requirement for evidence-based early intervention to adhere to clinical best practice protocols to achieve optimal client outcomes.

• 2. The need for the main scheme to limit Tier $3$ funding to people with significant, lifelong needs for personal care and support conflicts with the fundamental objective of early intervention to anticipate and identify health and disability needs at all levels and to prevent or reduce the need for lifelong supports to the greatest possible extent in the interests of the well-being of individuals and the national economic interest (the insurance principle).

• 3. Planning and funding decisions in the main scheme lie with NDIA planners (essentially an administrative function) and this conflicts with the fundamental need in early intervention for decisions about client service plans to be made by the clinical team in the light of all available evidence and in conjunction with the child’s family.

• 4. Funding allocations in the main scheme are comparative and based on assessed functional impairments and this conflicts with the basic early intervention requirement for funding to be sufficient to meet the cost of a participant’s chosen intervention for as long as is prudent and necessary to minimise functional impairment and maximise lifelong social and economic independence.

• 5. Main scheme funding and payment arrangements are based on inputs, are transactional, administratively burdensome for families and their providers and undermine the close relationship between families and providers that is necessary in intensive, inter-connected, family-centred early intervention. Wherever possible early intervention programs should be funded on outcomes, not inputs.

Potential organisational and public policy options/solutions:

The NDIA’s approach to date has been to attempt to minimize the impact of various issues by “massaging” solutions into the policy and funding settings within the main scheme. This hasn’t worked. So if an “issue by issue” approach within existing NDIS policy and funding settings doesn’t work, we need to look elsewhere - potentially to alternative organizational or structural solutions.

Parallels with other healthcare models and best practice

To guide this process of review and consideration, we can also look to alternative models of healthcare practice where there are comparable aspects of structure, practice and/or communication.

There are some parallels in the early intervention model for hearing impaired children and the multi-disciplinary rehabilitation teams working in spinal injuries or head injuries. This specifically relates to the close interconnection between members of the team, the team and the patient/client and family, and the team and external providers. Similarly, there are parallels with some Commonwealth health funded centres of national excellence.