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Joint Standing Committee on the National Disability Insurance Scheme
27/09/2017
Provision of services under the National Disability Insurance Scheme Early Childhood Early Intervention approach

FORWOOD, Mr Michael, Chair, First Voice

GATES, Ms Ruby, Chair, Siblings Australia

HAYES, Ms Jackie, Leader, Social Policy and Initiatives, JFA Purple Orange

HUNGERFORD, Mr Jim, First Voice

LIMAREFF, Ms Heidi, Deputy Chief Executive, Can:Do Group

MAYNE, Ms Jena, General Manager, Group Service Development, Can:Do Group

STROHM, Ms Kate, Founder and Director, Siblings Australia

VNUK, Ms Maria, Project Officer, JFA Purple Orange

WILLIAMS, Mr Robbi, Chief Executive Officer, JFA Purple Orange

Committee met at 10:01

ACTING CHAIR ( Senator Gallacher ): Welcome. I declare open this hearing of the Joint Standing Committee on the National Disability Insurance Scheme for its inquiry into the provision of services under the NDIS early childhood early intervention approach. The chair of this committee is the Hon. Kevin Andrews. His plane has been delayed, and he'll be here later in the morning.

These are public proceedings, although the committee may determine or agree to a request to have evidence heard in camera. I remind all witnesses that in giving evidence to the committee they are protected by parliamentary privilege. It is unlawful for anyone to threaten or disadvantage a witness on account of evidence given to a committee, and such action may be treated by the Senate as contempt. It is also contempt to give false or misleading evidence to a committee. If a witness objects to answering a question, the witness should state the ground upon which the objection is taken, and the committee will determine whether to insist on an answer, having regard to the ground that is claimed. If the committee determines to insist on an answer, a witness may request that the answer be given in camera. Such a request may also be made at any other time. I remind those contributing that you cannot divulge confidential, personal or identifying information when you speak. If you wish to supplement your evidence with written information, please forward it to the secretariat after this hearing.

Thank you all for appearing before the committee today. I invite each of you to make a brief opening statement, should you wish to do so.

Mr Forwood : Thank you for the opportunity to speak to you this morning in relation to early childhood early intervention arrangements under the NDIS. The communication, education, social and employment outcomes of children who are deaf or hard of hearing in Australia depend upon the NDIS getting right the ECEI arrangements for these children and their families. At present NDIS ECEI arrangements are way off track as far as services for deaf children are concerned. This is evidenced by children's continuing exclusion from the scheme; persistent delays in referral, sometimes as much as two or three years, that are highly detrimental to children's outcomes; lack of a guided pathway to specialist providers with proven outcomes that is managed by an agency with the appropriate knowledge and expertise, such as Australian Hearing; and, finally, the substantial gap between NDIA funding and the cost of specialist multidisciplinary ECEI language development programs—a gap that in recent months has increased and is now generally in the order of $10,000 per child per year. So, most children who are entering into specialist language development programs are now getting $6,000, against a cost of between $18,000 and $22,000 for a comprehensive multidisciplinary program.

The long delay in resolving these matters and addressing the funding deficiency is precipitating market failure at a rapid rate. Service closures and reductions are already occurring, which will impact on participant choice and on children's outcomes. To protect children's outcomes during the NDIS trial and the implementation period, Australia's specialist providers of ECEI for deaf children have carried the cost of the NDIA funding gap. This is no longer sustainable as the numbers of underfunded children entering the scheme increases. The joint standing committee is familiar with these issues, and we are grateful for your active support in seeing them addressed urgently.

I will now turn to the things we have covered that amplify and go to the heart of the problem as set out in our written submission to the inquiry. Our submission covers the main points we wish to make. These are as follows. The NDIS lacks a suitable mechanism for funding evidence based, outcomes focused early intervention, including early childhood early intervention. The current NDIS ECEI policy and funding framework essentially mirrors NDIS arrangements for funding people who have permanent disability and lifelong personal support needs. These arrangements are based on an assessment of existing and observable functional impairment and disability as well as the allocation of resources on a reasonable and necessary basis to meet these needs. The greater the severity of disability, the higher the level of funding in most cases.

The fundamental objective of these arrangements is the fair distribution of resources, together with increased choice and control over their own lives for people with disabilities. As we say in our submission, everyone who's involved in the NDIS and these extraordinary and huge reforms totally supports those principles in relation to people who have permanent, lifelong support needs. But, by default, the principles of 'reasonable and necessary' and 'choice and control' have become the drivers of NDIS ECEI policy and funding arrangements and have displaced the normal ECEI design principles of evidence based practice, a focus on proven outcomes, value for money, cost-benefit and the scheme objective of maximising future employment and economic productivity of people with disabilities, all of which are stated principles in the early intervention section of the act and espoused in NDIS policy and public statements.

Consequently, NDIS ECEI arrangements not only severely constrain evidence based practice and investment outcomes funding principles but also heavily compromise other key tenets of early intervention, such as the critical partnership relationship between the expert clinical team and the client in monitoring and co-managing the intervention program, and ongoing investment in research, development and innovation in the interests of continuously improving the efficacy of intervention programs. Neither of these fundamental tenets of multidisciplinary early intervention as we know it in community development and in the health sector are possible under the current NDIS ECEI arrangements.

In summary, current NDIS ECEI arrangements are totally unsuited to funding programs whose fundamental purpose is to prevent or minimise functional impairment and disability before it occurs. They are designed to measure existing and observable functional impairments and disability and to fund according to that. Early intervention funding is not about sharing resources equitably on the basis of measurable need; it is about making timely, prudent investment in evidence based programs designed to prevent or minimise the development of functional impairment in children with birth and early childhood impairments and to minimise the impact of any such impairment. For children who are deaf or hard of hearing, it is about making an adequate, timely investment in evidence based language development programs—speech or sign—that will prevent the child's diagnosed hearing loss from developing into functional impairments and disability in relation to their communication, education, mental health and social participation as they grow older. Conversely, it is about making an investment in optimising the communication, education and lifelong social and economic participation of children who are deaf or hard of hearing, as per the objects of the NDIS.

As pointed out in our submission, children with hearing loss are hugely disadvantaged by current arrangements, as their condition is hidden and in most cases—unless they have additional disabilities—at birth and in early infancy, when they present to the NDIS, there is no measurable functional impairment. In the absence of appropriate ECEI arrangements, this just results in the generic NDIA access partners and planners, supported by their regional and state managers and administration, allocating funding that does not bear any relation to the cost of the proven effective early intervention programs these children require and have been receiving in Australia for the past 20 years.

Finally, our latest information from the NDIA as we struggle along in the current environment is that reference packages are probably four to five months, possibly longer, away. Also, very recently there has been an intimation that, notwithstanding what we thought and we supported as a very positive development with regard to the eligibility of children with mild bilateral hearing loss and unilateral hearing loss, it is likely that these children will have access to the scheme for aids and appliances but children with the lower levels of hearing loss will not be funded for early intervention therapy. These are just understandings that we've picked up from discussions with people within and around the NDIA, but both of those developments concern us.

In summary, the NDIA do not understand hearing loss in children and they do not understand the basic principles of effective early intervention for children who are deaf or hearing impaired to put them on the pathway that they should be entitled to choose and enjoy. With regard to the choice issue and the reasonable-and-necessary issue: I've dealt with reasonable and necessary, but with choice, First Voice and its member centres totally support the right of parents to choose the mode of communication for their child and we totally support the right to choose the early intervention provider they want to have; but, should they choose the provider of a multidisciplinary comprehensive outcomes focused organisation, they should be provided with sufficient funding to cover the cost of that program. Thank you, Mr Acting Chair and Committee.

Mr Williams : I'd like to open the statement by acknowledging the Kaurna people, who have been the traditional custodians of this land, and recognise the importance of the spoken word, which is what this committee is about today. It is 2½ thousand generations, I calculate, that the Kaurna people represent in Australia, so 2½ thousand conversations between grandparents and grandchildren. It's the power of the spoken word I think we can underestimate, and so the power of this type of hearing is very important if we're to advance the chances of our fellow citizens. I recognise the committee in its work to advance and uphold the common good that is our society and economy and our communities, and I trust that our conversation today will help advance the life chances of Australians living with disability and their families.

JFA Purple Orange is a largely self-funded not-for-profit. We prefer to call ourselves a social profit agency, because we set our outcomes in terms of social change. We're based in Adelaide but we think we've earned a national reputation. Our work is anchored on dialogue with people living with disability and their families. We try to understand what policy and practice issues can help, and then we go in to bat on those issues. We also work with governments and service providers on a range of issues and we also, through our grant-making trust, commission what we consider to be good ideas that can help improve people's life chances—ideas around supported decision making, circles of support, micro-enterprise as a way of supporting people with severe disability into employment—because this is the hard work that is involved in supporting very real positive changes in people's life chances.

Also, we should acknowledge all the officers involved with the transmission of the NDIS into reality, because it's not an easy gig. I wake up every morning grateful that I don't work for the NDIA, because I think that the challenge that they have in bringing this good idea into reality is a very difficult one. The scheme is very important. The NDIS is one of the biggest social welfare reforms in modern times, and it's a great opportunity for Australia to become a world leader. What we don't want it to be is an international cautionary tale. The scheme at its heart is about advancing people's control and choice of their lives and also their participation—their valid participation—in community life and the economy. Alas, a good idea is at its most vulnerable during implementation.

First off, language is so important: think about the oral tradition. We often reveal our intentions in terms of the language that we use. We've said this in our submission and will say it again: I don't know why we use the word 'intervention'. Who has an intervention? Alcoholics have interventions by members of their family and concerned networks—they have interventions. The police intervene in fracas in the street. Interventions are essentially when people lose control and choice. Surely, the scheme is about advancing people's control and choice. Why on earth would we use the word 'intervention'? We don't want to intervene in families' lives; we want to invest in families. So we would encourage the scheme, the committee and anyone else with an interest in this to replace what the I stands for. You don't even have to change the initial—it's still ECEI—you just change the word 'intervention' to 'investment', because that is what it is, an investment. To pick up on Michael's points, to properly invest in people we have to understand their circumstances well and to create arrangements that allow people to really understand and chart the future they want for their child and for their family.

What are the characteristics of the rollout that cause us concern? I will make some brief reference to the points we made in our submission. We believe that a conceptual framework for organising a coherent system for ECEI involves four elements. You need a radar, a system of alerts that help to spot issues early with families and their children. You need a compass that gives you a clear sense of direction, a clear value base, for what the ECEI is intended to bring benefit to. You need a map which is clear, first and centre: planning that builds capacity in families and in their children in support of ordinary, valid life goals. And you need an engine: you need sufficient resource to create genuine momentum towards those outcomes. It's our contention that the radar, the compass, the map and the engine are not yet sufficiently in place to constitute a properly coherent, cohesive investment in the lives of children and their families where there is experience of disability.

The challenges, in the main, I think, are twofold. I'm going to take a reductionist approach, so I apologise if I oversimplify. But it seems important to anchor the concerns on the extent to which they may be undermining those two cornerstones values for the scheme—that is, control and choice for its participants and their families, and valued participation in community life and the economy. There is a third value, which is that funding is sustainable into the future so that people know they can call on into the future for their support needs, but we often refer to it generally in our communities, it seems, and in our media as: Is the NDIS going to go broke? Is there going to be enough money to go around? Do we need to ration? The centre of gravity is in the wrong place around sustainability. The whole point about sustainability is that the funds are available into the future for people who need them.

So, in terms of those two main values of control and choice, and participation in community life and in the economy, what we are hearing from the people we talk with is that the principle of control and choice is not easily being advanced and upheld in the current rollout. We believe that part of the reason for that is the aggressive time frame in the bilateral agreements, which sets out an agenda in terms of a volume of people at a dollar-volume price over a volume time frame. The preoccupation with those markers places extraordinary pressure on the NDIA to hit numeric targets and, in so doing, to not have the fair opportunity to undertake an authentic, person centred approach with each participant in the scheme and their family.

We are concerned that in those bilaterals some of the calculations that contribute to the contributions might have been based on people assuming that certain state funded services for children would no longer be required, because if they're needed they will be purchased through the scheme, through people's individual budgets. We think that's an unsafe assumption and should only be tested once the scheme is at full rollout so that you can see what the demand is for certain services and what else remains that needs to be covered to ensure there are no gaps. But we are concerned there is a yanking out of resources from existing services at the state level that leaves families short.

We are also concerned that there may be a cost shifting from some local mainstream services. So, now that we've got a scheme, all roads lead to Rome, and the scheme might be seen as nirvana by those other mainstream services in education and health, who have their own budgeting challenges. We're concerned there are pressures throughout the transition into the scheme, where normal mainstream services that children and their families should be able to access are becoming less available because of gatekeeper assumptions that they will be better served under this scheme. We are also concerned that, as a result of the scheme, some service providers are having to calculate a per capita cost for the services they previously provided through a block contract structure with the state government, and that's producing an inflated cost of services that, by its nature, is preventing some families from making choices to consume those services, because they now appear expensive.

So we're concerned about the pathways, and we'll go into this more later today, when we get the opportunity to talk about the transition generally in the scheme. But I'll give voice to it now, as I think it's important because it's entirely relevant to young children and their families. It's contemplating how the pathway works in the scheme—so that linear pathway for people entering the scheme, going through stages of eligibility, assessment, planning, signing off the plans so that funds flow, orchestrating arrangements and then seeing if any of it makes a difference in terms of people's life chances. That's a linear pathway, but that linear pathway takes place in the context of community. Our contention is that that linear pathway needs to be as streamlined as possible, as clear as possible, not only so that you can maximise the funds that are available for direct supports for participants but also so that the scheme can properly invest in the community context.

At the moment in South Australia, our understanding is that there is no ECEI partner, which means that that role is performed from within the NDIA. Our view of that role, just as it is for the view of the LAC for older participants coming into the scheme, is that that role is much less about navigating the pathway of the scheme—that should not be its centre of gravity—and it should be much more about how people navigate community, how people navigate the connection into fair and reasonable access to mainstream services and to mainstream community resources that represent the gateway to genuine community belonging. If we don't have sufficient investment in supporting children and their families to make those connections into community life then that is going to bring a greater pressure onto the scheme in terms of the third value, which is its financial sustainability. So we have to fix this issue quickly. There has to be a stronger framework to assist young children and their families, where there is disability, to fully make use of the community resources that should be available to any child and their family. Without that arrangement in place, the scheme is going to be wobbly in terms of choice and control, it's going to be wobbly in terms of participation in community and the economy, and it's going to be wobbly in terms of its own financial sustainability.

Ms Limareff : The Can:Do Group comprises South Australia's two oldest service charities, which are Townsend House, known as Can:Do 4Kids, and the Royal South Australian Deaf Society, known as Deaf Can:Do. We also have a social enterprise audiology business. As a provider of children's services, we have provided services to children with hearing or vision impairment in South Australia for over 140 years and under the NDIS for over four years. NDIS has opened up a lot of opportunities for our clients and for us as providers, and we applaud the government for bringing in this scheme.

We have added new clinical service schemes and have expanded our client base significantly. We have been able to spend time during this transformation training more staff as well as bringing in a research officer to ensure that we are, at all times, providing best-practice evidence based services. This doesn't come without a cost. At this point we estimate we have spent about $800,000 cash, of our own money, to undergo this transformation.

The approach that Can:Do 4Kids takes depends very much on the needs of our clients. We utilise an evidence based assessment called a routine based interview. This is designed to establish a positive relationship with the family, to gather information about the child's and family's needs and to develop a list of functional outcomes through a semi-structured interview about the child's and family's daily routines. This means that our approach to each family is unique and it is unique to them and their needs.

Regarding the early intervention partner, our concerns were laid out in our very short submission. We believe that the lack of partner in South Australia was, in part, a problem created by the NDIA itself regarding the application process. Despite the intention of this being a national project, it was treated differently in each state. The largest difference in South Australia was the fact that one had to tender for the entire state. In South Australia we didn't have anyone prior to the NDIA doing this role, unlike some of the other states that had a similar role already there. There was no-one who could take this on, also remembering that we were the trial site for children and people involved in working with children were not allowed to tender for this, so it left very limited options for anyone to tender in our state. Right now we do have some regard to what's happening, simply because everything's gone quiet. This makes us concerned about the lack of transparency, about finding an ECEI partner in South Australia. I am concerned we may end up with something that is more politically motivated—about keeping jobs in South Australia—than about outcomes for families.

We can achieve the best results for families by appointing a partner immediately, by ensuring the partner takes on the entire role as designated and not just picks the parts of the role that they want. The partner needs to have good relationships and working relationships within health and education and needs to know the rules, because there's a large problem in this state right now for families in the relationship between NDIA, education and health. They're getting a little bit lost in that mess there. Families need the clear referral pathways that a good partner will give them.

I also think there is a problem for our families in regard to when they come into the NDIA. Many of them do not know that they are under an early intervention pathway versus a disability pathway, and what this means for them when their child is six, seven or eight years old and is transitioned either off the scheme or onto another pathway. This is very unclear and causes a lot of concern for our families.

At this point, it is important to highlight the difference between early intervention and intervention that happens early. I feel bad using the word now, but I'll continue this way. I'm going to use the diagnosis of hearing loss as my example. An important point to make is that I am a trained audiologist and I'm well aware that audiologists are not trained in true early intervention techniques. In fact, I recently asked a colleague at Australian Hearing if she could define what early intervention is. She could not. She did not know what the actual job of an early intervention specialist was. When I explained to her that it involves supporting the family and would require professional expertise in someone who could provide support beyond the hearing loss, she told me that as a parent herself she surely could provide the support.

At the current time, when a newborn in South Australia is diagnosed with a hearing impairment through the UNHS program, the family is asked the question: 'Do you want your child to speak?' Whilst we agree that for over 90 per cent of newborns with a hearing loss the answer to this question is going to be yes, we take issue with this being the first question that is asked of them. In addition, after the family answers in the affirmative, they are referred directly to Australian Hearing as their only option of provider, and they are quickly fitted with hearing aids or devices so we can all pat ourselves on the back and talk about how no children in this country get lost in the system and how quickly we get hearing aids on them. This is not early intervention. This is intervention that is happening early. Whilst we wholeheartedly agree with fitting children who have hearing loss with hearing aids early, and we acknowledge that the evidence strongly links early fitting with better future speech and language outcomes, we do not agree that this is the most important first step for these children or their families.

According to Early Childhood Intervention Australia, early childhood intervention is the process of providing specialised support and services for infants and young children with developmental delays or disabilities and their families in order to promote development, wellbeing and community participation. In the current model, families are being told only of the medical approach to hearing loss, not of the cultural approach of being able to live life positively with deafness. This may or may not include the use of devices. The family supported by Can:Do 4Kids is able to understand that there may be a range of options to suit their children. And whilst a majority do choose to undertake a fully auditory-oral approach for their child, at least we know they're making an informed decision. And given that between 30 and 40 per cent of deaf and hard-of-hearing children have a comorbid condition, some of which may preclude or be more important than speech and language development, all families must be given the tools to succeed for their specific child.

At Can:Do 4Kids we recently made the decision to start fitting hearing aids to infants and children, and we pay for this ourselves. We use proceeds from a recent asset sale to do so. We have commenced the service after many years of our clients asking for us to do so, but also because it truly provides families with two things, the first being choice and control. The second is a truly holistic approach to managing the child's hearing where all of the allied health professionals are working together at one site and often at one appointment—unlike what happens now, where the audiologist is located at Australian Hearing and another business is supporting all the other needs of that child.

While we have read the recent reports still waiting to be heard, we do not agree with the recommendation to keep all children aged zero to five with Australian Hearing. We do not understand why it is okay to disempower the parents of deaf and hard-of-hearing children, making it the only disability with no choice and control. And what of the children with other disabilities who also have hearing loss? What's going to happen to them in this model? If the decision is made to keep the children with Australian Hearing, then we also support the idea that they become the full early intervention providers for these children, because the best practice model is a transdisciplinary approach with all the allied health providers working together.

I want to make this point a bit further by illustrating this with a client's story. We commenced our new services in July. We currently have only four children on this service, because we have not launched it publicly, as we are awaiting the outcomes of the report. However, two of the four clients who have joined our program have never worn hearing aids before. One of the clients I'm going to talk about I will call Jackson. He was born in July 2014 at the Women's and Children's Hospital in Adelaide. Jackson was picked up via UNHS, and eventually his parents were told he had a bilateral, moderate sensorineural hearing loss. Like most families in this position, Jackson's parents had never known anyone born with a hearing loss and they simply didn't believe the test results. Despite their lack of acceptance of the diagnosis, they were shepherded off to Australian Hearing for a hearing aid fitting. At appointment No. 3, where Jackson's mum reported that all they did was talk to her about hearing aids, and the family refused hearing aids, she excused herself to go to the toilet, took Jackson and snuck out of the building.

The family turned up at Can:Do 4Kids 2½ half years later with concerns about Jackson's speech development. We discussed their needs and their goals for Jackson, and both parents continued to be adamant that he would not ever wear hearing aids. After eight weeks of family support via our social worker, our early intervention specialist and a speech pathologist, we had given Jackson's family all the tools we could to support him on an oral journey if they continued to refuse aiding him. We spent these eight weeks regularly talking about hearing, the reasons behind the hearing loss and the effects of a hearing loss, and we even had them meet an older child on site, in a non-confrontational environment, wearing hearing aids. It was not until the family learned that Jackson could be fitted with hearing aids by us, in a familiar and supportive environment that they already knew, that they chose to proceed and only at this point, of course, with one hearing aid—not our recommended two.

I'm happy to report that today Jackson is a happy and confident three-year-old who was fitted with his second hearing aid three weeks ago. His speech and development, while delayed, are now developing beautifully. When the recommendations came down saying that children zero-to-five should stay with Australian Hearing, both Jackson's family and our paediatric audiologist were devastated. This success would not have been achieved in the new model. This is only one example of many we have of families whose first needs are not met by the current pathway. The most important part of the journey for these families, time and again, is timing. They need the right information at the right time for them, not for our country's statistics and KPIs but for their own successes.

I will end with our recommendations for the committee, which is a transparent process of choosing and setting up early childhood early intervention partners in South Australia, and a holistic pathway for the children, not bits and pieces. We would like NDIA to manage the pathway, not the Office of Hearing Services. We would like NDIA to also bring in a specialist for children with hearing impairment—and children with vision impairment, as we have ongoing problems with our vision impairment children and the lack of knowledge around equipment that they need. We need a clear interface with NDIA. We have concerns about how Australian Hearing is going to be able to do this role when hearing impairment is not the main condition of the child. If they are providing early intervention services themselves, then they should not be the referral pathway to others; we do agree with that. Under this system, if the funding comes under the Office of Hearing Services, these families are going to have to continue to navigate two different systems. We need to seriously consider why we consider hearing disability a totally different form of disability where parents are unable to make an informed decision on behalf of their child and they need to go down only one pathway. Sending all children to Australia Hearing is not the right outcome for all children. The outputs academics rely on to manage this are not following the same principles at the core of the NDIA, which are choice and control. Thank you.

ACTING CHAIR: Ms Strohm.

Ms Strohm : Thank you. Siblings Australia has been working in this space for nearly 19 years. In that time, in spite of lacking core funding, we have developed a national and international reputation for the work that we have done with families and professionals. When we look at the NDIS ECEI approach, it talks about helping all children with developmental delay or disability and their families. It also talks about determining appropriate supports for the child and family, including information and emotional support. The access partner is supposed to determine the appropriate supports for the child and family. 'Family' is mentioned many times throughout the document. However, when you go down further into that document, there is really no mention of siblings of children with disability and what role they can play or the impacts on them. Even on the NDIS website explaining the ECEI journey, one of the steps is 'work out your family's support needs'. But again all of the emphasis is on the child with the disability.

Even the National Disability Strategy talks about the 'strategic policy to address complex needs of people with disability, their families and carers in all aspects of their lives'. Now, a decade later, there is still no attention given to siblings. There are huge gaps in the support of siblings. We have done a number of research projects to look at what support is out there. Basically, it is a hit-and-miss situation. There are very few, and a lot of the ones that were operating have stopped since the introduction of the NDIS. Parents talk about finding it heartbreaking watching the impact on the other children in the family and not being able to find support. We put millions of dollars into parent support and we recognise the stress that they are under, and yet these children are often experiencing very similar stressors to the parents but they are dealing with them as children and so they do not have the maturity to cope with those stressors.

Part of the difficulty is that there is no policy around siblings and there is a lack of awareness in providers about what siblings need. Thinking about why siblings are important, we believe that they are incredibly important for the person with the disability. Many people with disability become isolated, and yet we know so little about the barriers and the enhancers to that sibling relationship. Siblings play an important role in the social and emotional wellbeing of people with disability, and they are often there longer than anyone. They are certainly there longer than parents, special educators and any other people that might be involved with the child, and then the adult, with disability.

Siblings are also a key component of the sustainability of the NDIS. They are a major part of the informal support for a person with disability. But, again, there is no support for them. They are a key part of succession planning as parents become older. Often, siblings will step in and take over that role. Often, they're dealing with a whole range of leftover emotions from their childhood. They're also balancing ageing parents and their own children, as well as a person with disability—their brother or sister. They're often referred to as the 'club sandwich' generation.

It's interesting that Robbi talked about investment. I think that's really important. If we want to invest in families, if we want to strengthen families, then we need to strengthen the whole family. It's not just about strengthening parents and the child with disability. These siblings can play an enormous role. Parents can be overwhelmed by the need to juggle the needs of all family members. So if we can support them in supporting those other children in the family, we are really helping parents be better parents for the child with disability as well.

We know that siblings are at risk. The Australian Institute of Family Studies showed that they had higher rates of depression. Research around the world has shown that they have higher rates of anxiety and depression. We've done mapping projects. We've done other research projects with adult siblings. The vast majority talk about experiencing anxiety, depression, self-harm and a whole range of other mental health problems. They've also been shown to be at higher risk of physical health problems as well.

I won't go into all of the reasons why siblings are at risk but I can certainly expand on those if you would like me to. The Royal Australian and New Zealand College of Psychiatrists stressed the need to really take note of siblings and their needs as part of a family investment. Some of the benefits of sibling support are fairly obvious. If we get in early and invest in that family early, all family members are going to be stronger. The family are going to be stronger. They're going to be more able to support that child with disability. After all, they're the first social network for that child—and then adult—with disability.

Unfortunately, siblings are overlooked, as I said. There are really five main reasons for that. They're not good advocates for themselves. They've grown up with the needs of someone else always being more important. So they don't feel like they can put their hand up and say, 'What about me?' They often have survivor guilt and similar feelings that make it very hard for them to say, 'Hey, I have needs here as well.' Families are stretched. We all know that parents are stretched in finding services for the child with a disability. So, often, they overlook the signs in a child who is a sibling that they might be struggling as well. The issues aren't recognised by service providers. They often lack the skills and the knowledge to support these children. The sibling support sector is uncoordinated. There's no collaboration, there's little evaluation, apart from a program that we've developed, and there's also a lack of resources for agencies. As I said, with the NDIS model, agencies now have no flexibility with their funding. Before, they used to use some of their block funding to support siblings. Most of that has dried up.

Again, I come back to the lack of government policy. Siblings are not in policy anywhere. There is a lot of rhetoric about families, but, unfortunately, here there is no mention of siblings. This is unlike in the UK, where the Children Act states that the needs of brothers and sisters should not be overlooked—they should be provided for as part of a package of services for the child with a disability. So siblings are provided for at that policy level. That doesn't mean that every sibling gets support, but at least it's a starting point. There is some imperative for agencies to do something about, which they aren't at the moment. If I get a chance later, I'm also happy to talk about the problems with including siblings under the young carer policy umbrella. There are huge issue with that, including dignity for people with disability, for identity issues with the sibling and a whole range of areas that I'm happy to expand on.

Finally, there is a need to recognise siblings at risk themselves, but also in terms of what they can contribute to the person with disability. There needs to be a national initiative that coordinates the relevant research, guides policy and develops best practice. Investment needs to be taking a preventative approach. There needs to be workforce development and clear guidelines.

Now, I understand that the ECEI approach may not be able to directly support siblings themselves. That approach may not cover that. But they should at least be advocating for siblings to be supported somewhere, that they need to be in policy and that they need to be a key part of supporting parents, a key part of supporting siblings themselves so that they can be strong and have a strong relationship with the person who has a disability. But anyone who has an interest in people with disability has to have an interest in the people who are going to have the longest relationship with them.

ACTING CHAIR: Thank you very much. I have a couple of questions before we go to other members of the committee. In respect of the hearing situation, I've been listening to this evidence and reading submission for some time. The crux of the issue is that early intervention has some compelling evidence and logic to it, and an increased spend in the earlier days offsets an increase in the latter years. Is that right?

Mr Forwood : More than offsets, if that's their chosen pathway.

ACTING CHAIR: That seems to be a little in contest with the NDIA planning model, where there's probably a $6,000 to $10,000 investment early, which is a shortfall?

Mr Forwood : I think what happens—and this is very understandable—is that the planners and access partners each day are seeing parents and families with children who have multiple severe disabilities. They have physical disabilities and they might have a range of levels of intellectual disability. And often I think they are not babes in arms, like many of the children who have been screened and diagnosed through the hearing screening. So, they are confronted with people with a range of obvious disabilities. I believe this is a scheme that, understandably, has been designed to allocate funds fairly on the basis of assessed functional impairment and the impact of those impairments—and I'm talking predominantly about adults here—on their lives, together with their aspirations, so that they get sufficient funding to manage their own lives and to change and have control of their lives. But when you come to early intervention in this particular instance—and I know from my discussions with other people in the early childhood early intervention sector that this is not always the case—there is a very well established clinical pathway for the parents who choose for their child to learn, predominantly to speak but also to have communication development that enables them to then have pretty much a normal, mainstream schooling and to complete year 12 and go on and get the outcomes that we talked about.

There is a cost to that, particularly in the first five years, and some subsequent cost. But if a family chooses that and chooses a provider who provides these sorts of services then that needs to be adequately funded. If you half fund that, you will end up not getting the result. It will be a waste of public resources, and it will be a huge disappointment to the families who had an expectation and a hope that their child would learn to speak fluently. So, what we have at the moment is people running multidisciplinary, wraparound programs that Heidi and other members of the panel have talked about. We have been running these programs for a long time. We have proven outcomes. It follows all the evidence, including evidence that every month or three months or six months of delay in commencing intervention impacts adversely on the child's communication and life outcomes. We know all this. But the NDIA, in the absence of a properly formulated early childhood early intervention investment—I like the word 'investment'; we use it ourselves, as this is about investing in young children when you know what their condition or their impairment is and minimising the development of that impairment into a functional impairment that affects their daily living and their participation in society and becomes a lifelong disability. It is just terribly frustrating to have moved into a new set of arrangements and to see a generation of children who have a hearing loss at birth, who have permanent childhood hearing impairment, put into circumstances where they are just going backwards.

Ms MACKLIN: On the issue to do with children with hearing loss: as you know, we recently did an interim report on these issues, and we made recommendations about some of the matters you raised. But I was very concerned about some of your opening remarks, and I think the committee would benefit from some further information from you, if you have it. You said that there are children being excluded. I think it would be helpful to know how many, where, the nature of the exclusion and why they are being excluded. You said that some children are facing delays of up to two to three years, which is obviously completely unacceptable. I think it would be very helpful to highlight for the committee where they are and who's having to wait for that length of time. I think we all understand the problem with it, but, plainly, if the message is not getting through, the purpose of this inquiry is really to try to draw attention to the issues so that they can be addressed, so I think would be helpful if you were able to provide that.

Mr Forwood : Senator, we can do that.

Ms MACKLIN: We're obviously familiar with the gap in funding, because you emphasised that in the hearing inquiry, but you said today that that funding gap has increased. Maybe you could explain why that is. You also talked about service closures. I think we have to be a bit careful in this area, because it is a changing environment and people are now getting choices that they didn't have before. We don't necessarily want to stop change happening, but, equally, the committee is aware that closures are happening not because people now have choice and want to go somewhere else but for the reasons you're highlighting, which are that the amounts being provided just aren't sufficient to meet the costs of provision. You don't have to do it now, but could you come back to us with some detail? Each of those statements was very significant.

Mr Forwood : We have evidence, though I'm sure you'd prefer me not to do it now.

Ms MACKLIN: No. I just want to give everybody a chance.

Mr Forwood : Sure, but we can do that. We have instances of information of that.

Ms MACKLIN: If you could give us the detail of children excluded, the delays et cetera—each of those very big statements that you made—I think it would be very helpful. A number of you also raised the question of the need for an adequate mechanism for early childhood investment or to get a clear pathway, and I think it would be helpful for us if maybe each of you were to draw that out a bit more. Compared to what exists now, what explicitly do you think would be a more adequate mechanism? I think we've got the message loud and clear that you want an independent partner here in South Australia. You've made that pretty clear, everybody, and we've got that message. But, really, what doesn't exist in the pathway now or what needs to change from what currently exists so that it works better for children and all the people around them?

ACTING CHAIR: Mr Hungerford, were you going to make a comment before?

Mr Hungerford : I will address both of those issues. The comment I wanted to make before was about the NDIA's attitude towards the investment into children with hearing loss. I don't believe that they disagree with the fact that they should be funding children at a level that achieves the outcomes that are possible. I think that they have internal bureaucratic problems that stop them being able to provide that solution because they're concerned about—

Ms MACKLIN: Like what? What does that mean?

Mr Hungerford : My belief is that they're concerned that, if they agree to a funding mechanism for the hearing loss sector that covers this $10,000 gap, other sectors will then try to find ways to extend that funding mechanism to theirs and they'll get a cost blow-out. So I believe it's a bureaucratic issue rather than a belief that this degree of investment is required. The draft national reference packages that have been explored do foresee the level of investment required to achieve the outcomes. That was just a comment to the previous question.

ACTING CHAIR: We heard evidence in Brisbane yesterday that there is emerging evidence about early intervention for children with autism that delivers the same sorts of outcomes. So that is probably a genuine concern for the department, that it may spread.

Ms MACKLIN: And for the benefit of the children.

ACTING CHAIR: And a better outcome overall, which is good, isn't it—that's what we want.

Mr Hungerford : Absolutely. And I think that's the crux of the matter—that if the agency acted on the act, where the act says that they will invest to reduce the future need, then those investments are highly worthwhile, even within the NDIS, let alone from society's point of view.

If I come down to the pathway for children entering early intervention, to your point, Jenny, then I think that, for us, we do support Australian Hearing acting in that role for children with hearing loss—simply because of the available structures that we have in Australia, it is the one that would be able to be implemented successfully there. We believe fully that it sacrifices parent choice, which we think is sad; however, we don't see a feasible mechanism to get around that. And, if I can just segue from there, I do want to congratulate the committee on its report into hearing loss under the NDIS where I think that the committee did a fantastic job, and there are many excellent recommendations there. Thank you.

ACTING CHAIR: Could I go to Ms Strohm's point: I was just reminded of my aunty's role in looking after my uncle for some 50 years, which basically just happened. Is there any description of the sibling role in the NDIS, particularly with parents who pass on? Obviously, that's what has happened historically. Does it not get any recognition whatsoever?

Ms Strohm : No. And the unfortunate thing is that some siblings give up their own lives to support a person with disability; some of them are, yes, 50 years plus. But then there are others who move right away because of the stresses, and they're also the group that we need to focus on. Because if we could, as I said before, invest in them earlier, then they may not take over the care but they can be a huge part of the social and emotional wellbeing of that person with disability.

Ms MACKLIN: What would be a good place to start if you were going to provide improved support to siblings? Where would you start?

Ms Strohm : Right at the very beginning. With an ECEI, there need to be pathways—people working in the area need to be sib-aware, basically. And there need to be pathways, initially, for parents where they can access support—there are no pathways at the moment. We're the only pathway, and we're existing mainly on the voluntary efforts of me and the board of management. So we need pathways. We need pathways for those children to get to support, we need pathways for the parents to be able to access support, which just isn't happening now. But also we need that to continue on. In response to what you said, I've met people in their 50s and 60s who have been dealing with their own emotional issues but also really contributing to the life of the person with disability. No-one in their whole lives has asked them how they are and how they are going. Now that is appalling, when we've known for many years that they're at risk, and we've known for many years what roles they play. We've done surveys, as I said, with adult siblings who play a huge role. What we need is for siblings to be able to develop a good life for their brother or sister but also themselves. But it has to start at the very beginning.

Ms Limareff : In regards to the clearer pathways, I think there are probably four keys to that. The first would be to really specify the roles of health and education in this as well. Right now, there's a bit of either stepping forward and taking on things that perhaps should stay with the NDIA, or just handballing over—and this idea that the NDIA will solve all problems. And so we are getting some children through who would have normally gone into a pre-childhood program with DECT, or something with Health. And so the lack of clarity there is a problem and I think the partner can work well in helping us in that way.

Recognising the specialty of those of us who already provide in this field and the knowledge that we have, particularly around something like hearing loss or vision impairment where—if you've worked in the area of disability—there's not a lot of general knowledge specific to these things. I think it's important that that's acknowledged in the pathway. I think there needs to be clarity for families about how they're entering the system, what the difference is between an early intervention pathway and a disability pathway, and what that means for them now and for their future. This is probably the best part about having a partner: there will be a consistent source of information across the state and one truth, which we're really lacking right now.

Ms HUSAR: Ms Strohm, I'm familiar with your background and your work. I've known about it for at least the last 10 years, being a parent of a child with a disability and two others that are not affected. For the benefit of Senator Gallacher, some of these programs used to be block funded and they would roll out. My experience was that they were always charities that were providing, and it was largely left up to me. I think that that's very important. We've got things like Triple P and Stepping Stones that are programs that are regarded and that are focused at the parent end, which you talked about in your opening statement. How do you see being able to roll something out across the country? How do we solve this? We know it's an issue, we know what the benefits to including siblings are, and we know the pressures that they're under, but how do we take that next step to ensure that they are included?

Ms Strohm : The first step, I think, is to have a recognised body, like Siblings Australia, that is supported to do the work. At the moment, like I said, we're likely to close at the beginning of next year because we don't have the capacity to do any succession planning. But we need an organisation that can do that workforce development and that can determine best practice guidelines. At the moment, it's really hit and miss. There are programs that may be running, but we don't know if they're doing harm. We really need a coordinating body that can help coordinate any of the work that is happening to ensure collaboration and to do the research. Like I said, what are the barriers and enhancers for sibling relationships to be strong? We don't know. There are a range of things that need to be done, but we need to have a funded body that can do that, both an advocacy body and one that provides services. We've been providing services for a long time, like I said, but there's a limit to what we can do without that resource base—at the very least, some core funding to enable us to do that work.

Ms HUSAR: Were you given some core funding a few years ago under previous—

Ms Strohm : No, we've only had grants from time to time. For the last 10 years, we haven't had any grants, except for the last couple of years. We had one in 2009 to do a mapping project and run a conference, then we had some funding through the Sector Development Fund to do some work with adult siblings, and we're now doing a mapping project through the ILC. In December, we're back to no core funding. I'm working from my home office; I have done so for the last 10 years. Unless we can get some strength in the sector, then all of that experience and expertise is going to be lost. Like I said, we've got an international reputation. People overseas are using our products. I've been asked to present overseas multiple times. That's going to be lost if we can't get some sort of support.

Ms HUSAR: Mr Williams, you referred to the PEDI-CAT in your written submission. Do you want to do away with it?

Mr Williams : The answer is not as easy as yes or no. The answer would be that the scheme is driven by certain values and therefore by certain outcomes. If the scheme's about supporting people to access opportunities in community life and the economy, then that's what you want to measure. It's the same thing with choice and control. We would suggest that if there are certain outcomes that you want and, therefore, you want to measure those outcomes, those same measures would be what you'd use to understand someone's current circumstances. Just like any research design, pre and post measures should be the same. Our concern is twofold. There are aspects to some of the current tools like PEDI-CAT that don't necessarily map well the person's current circumstances. An example would be that the PEDI-CAT doesn't map well the circumstances of a child with severe autism. But, more broadly, the current assessment tools don't measure the things that we think should be outcomes.

I'll mention this later in the other part of the hearing today, but the best example I can give, because we've experienced it firsthand through one of our colleagues, is that the PEDI-CAT—I know we're talking about early intervention, but I'll make this point—asks of that family whether their 12-year-old child living with down syndrome can climb a ladder. Unless the scheme wants to see more 12-year-old children who have down syndrome able to climb ladders—unless we actually want that as one of our outcomes of the scheme—why would we ask that question in the assessment? Why wouldn't we ask questions that we would normally ask 12-year-olds? Why don't we ask: have you got friends; are you safe on the internet; how's the transition to high school going; or are you starting to help out around the house? Those are the things that we want to know about, I would suggest, for 12-year-old kids. Why it asks about whether the child can climb a ladder and transfer a box onto a shelf is beyond me. There will be parallels with the PEDI-CAT for early intervention. We spoke to some of our colleagues in the sector, including agencies working with the disability community, and one of their concerns is that the PEDI-CAT just does not do an adequate job of understanding the circumstances of kids with autism.

Ms MACKLIN: Can I just follow this up, because it came up—didn't it, Kevin?—at the hearing that we had in Melbourne. I'd be interested in other people's views about the PEDI-CAT. Certainly all of the other people in Melbourne made exactly the same points that you've made and recommended, as you have, that it be reviewed and that other issues be included in the assessment process. But it is a significant issue because, as well as wanting to make sure that children are more broadly assessed in the way that you've just described, you and others also emphasise the need for consistency, so it's a matter of how to do these two sometimes contradictory things. If this is not the right mechanism, does another exist, or should this be modified?

Ms Limareff : I would probably go back to the one that I brought up in our submission, which is the routine based interview which is evidence based and actually talks to the child. Particularly in early intervention, it's about what's happening for that family at that moment. Again, I'll go back to what I know. I know this isn't all about hearing loss, but, being in the hearing space, it's an invisible diagnosis. Families often don't believe it. Then, they go through shock, grief, anger and loss—all the steps. The routine based interview is about, 'What happens for you every morning?' If the goal is around wearing hearing aids, that we put that in place with regard to, 'Tell us about your morning.' That's where we start. Anyone who's a parent knows that a morning with children is not a fun time of day that we all enjoy, so just going through those steps—

Ms MACKLIN: It's only beaten by the evening!

Ms Limareff : When you take it back a few steps and add in a disability where you're fighting to put some hearing aids on your child on top of getting them dressed, getting them to eat breakfast and getting them out the door on time, we actually start with the routine of the family. Then, we work the disability in for it to be a normal part of that family's everyday life. We have functional outcomes that suit the child so they're working not only within the disability but also as a functional part of the family. It brings better outcomes for everybody, and it's much more appropriate.

Ms MACKLIN: Do other people have a view about this?

Ms Hayes : I'd just like to highlight that families are also saying to us that the PEDI-CAT isn't being explained to them in terms of why these questions are being asked. They've got no context around it. It will suddenly ask if your child can climb a ladder or raise a box above their head, but there's actually no context around why the assessment is happening. The PEDI-CAT wasn't originally used for the first plans of many children in South Australia, so it's something that's coming up in the review stages of the next plan. Also, I think, it's quite demoralising to go through those questions. If you keep saying. 'No,' you're asked another question, so the level of impairment of your child is becoming more obvious. It's very deficit based and, as Robbi said, it doesn't really relate to the particular goals of the child.

Ms MACKLIN: So what do you think the alternative should be?

Ms Hayes : There obviously has to be an assessment. I think the original assessment was about function, and that assessment was pretty much done by a GP or a specialist that the child may have seen previously. Obviously there has to be some functional assessment, but it has to be relevant to the age of the child and the stage that the child is at, and it has to relate to what a typical child of that age would be doing, because they are the outcomes and goals for that child and for that family.

Mr Hungerford : The PEDI-CAT for paediatric hearing loss is totally unsuitable because it is based on the observation of already present deficits. For a baby with hearing loss, there is nothing that you can observe in that instance. We're required in New South Wales to use PEDI-CAT on all of the children we're supporting, and with every single child the PEDI-CAT rating is well below their actual needs rating because it's—

Ms MACKLIN: Including babies?

Mr Hungerford : Including babies—particularly with babies. If we had a 10-year-old profoundly deaf child who'd never received any early intervention, then of course it will correctly identify that they've got substantial needs, but it doesn't identify the need for early intervention. As to alternatives, the agency is developing an alternative specific for hearing loss. However, whilst we understand what they're incorporating into that, they haven't shared with us how they're intending to assign ratings to that system, so we don't know whether it's going to be appropriate or not.

Mr Forwood : I think that Heidi made a point about lack of involvement and engagement of the agency with chosen current providers. There's a lot of information where children and families are already on service with a provider, where much more sensitive and considered information could be given to the agency in the process of determining funding allocations. But I would say that a very high percentage of Cora Barclay Centre families find their interactions with the NDIA extremely difficult, frustrating and, quite often, offensive and irrelevant to their needs. It's a very unhappy situation, so it needs to change.

Mr Williams : On the question of an alternative to PEDI-CAT, one of the challenges for the scheme is that obviously it wants to establish a framework to ensure its sustainability into the future, and for that the actuaries need to have access to data they can rely on. Where that takes the thinking is that what we can rely on is data that's gathered from instruments that have, in a research sense, reliability and validity. But that is an unsafe reliance because all we'll ever do is look back on and use tools that already have some kind of established reliability and validity, and that gives us no option to innovate anything for the scheme itself. For every reliable, valid tool, there was a time when that tool didn't have reliability and validity; it was new and it was being tested and explored. I think that's where the scheme is at. There is nothing wrong with the scheme looking to design and develop its own ways of establishing measures of circumstances that speak to the values and the outcomes that the scheme is pursuing. So we would argue that the guiding centre of gravity should not be reliable and valid tools; it should be fitness for purpose. If the scheme can find and design its own tool that's fit for purpose, it's going to have a much better chance, I think, of gathering the data it needs to make the scheme a success. I would further suggest that, in identifying what fit for purpose looks like, it could do a lot worse than to connect with the range of voices in the community, including those around this table, who can contribute to the sorts of things that would be useful to ask families and kids.

Ms HUSAR: I take your point, having filled out a number of different kinds of surveys and asked all kinds of questions, but I want to go back to a baby who's gone from the hospital and had their hearing test. Anybody that has a level of common sense would understand that a three-day-old baby is obviously not going to show any functional impairment, because they're a baby. They're meeting their KPIs of pooing, crying regularly, sleeping a lot and feeding. Are there babies that are coming in, getting their hearing done—and their interventions if that's appropriate—but then not going forward and being supported in any other way?

Mr Hungerford : We're contracted as a transition provider in New South Wales because of the specific system within New South Wales. As a transition provider we're required to use the PEDI-CAT on all of our children, so if we did have a baby coming in with those characteristics they would get, obviously, a nil result there and we would then need to argue the fact of why that was an invalid result and why, based on our arguments, they should receive certain supports. The problem comes when our recommendation goes into the agency. They see the tool that they've nominated, saying there's no need to do anything, or anything much; they see our professional recommendation; and they have to reconcile themselves between those two contrasting views. Some of the planners accept what we've said and agree about the level of support. Some planners say, 'Well, the tool says nothing; therefore you get nothing'—and a whole range of different variances in between. It's driven by the fact that the agency, obviously despite the assurances to the committee earlier in the year, has still not been able to finalise the standard national references packages.

ACTING CHAIR: Is this a result of the enormity of the task that they have in approving plans? Is it a bureaucratic decision or is it because they have to do 10,000 plans?

Mr Hungerford : I believe it's bureaucratic. Again, I want to emphasise that I have no inside knowledge of the issues within the agencies that are preventing them from resolving this. I believe, however, that they would be able to resolve it if the people who were working on it were allowed to resolve it. I believe that their solutions are not acceptable to the agency.

Ms MACKLIN: Just to pull your points together, Robbi and Jim: Robbi's saying that we do need tools that are fit for purpose, which is very sensible, and you're saying that they are being developed for children with hearing loss. We understand all the difficulties around getting it finalised. We've heard all that evidence. But the question, given this is about a broader inquiry into early intervention, is: do any of you have a view about other tools that need to be fit for purpose that are being developed or need to be developed? Is there a discussion going on to that end in the disability community or in the NDIA or, preferably, in both?

Mr Hungerford : If I could comment on just the second part of the question: I really welcome Robbi's comments that the NDIA should be an engine for innovation. The NDIA is requiring a huge level of service innovation from service providers, which hopefully is going towards good ends. At the moment it's just going towards minimising costs rather than actually assisting families, but there's a lot of innovation. But it could also be actively guiding innovation in assessment tools, service models and things like that with the aim of achieving better outcomes. I'm unaware that there is any investment placed in that area. Other people may know more.

Ms MACKLIN: It seems to go right to the heart of what you're saying, doesn't it—that that work needs to be done? It doesn't all need to happen inside the agency. I can think of a range of different places where work like that could be done.

Mr Williams : Yes. I think there's a clear latent need right now to discuss and find alternatives to the current arrangements. Part of the problem is that the various stakeholders are so busy trying to navigate the scheme—not just the NDIA themselves but the service providers and, in particular, participants and families—that the energy comes into a space of: 'Well, this doesn't feel right.' What's happening at the moment is that people are noticing the problems, digesting them and just contemplating why there are problems. There hasn't been sufficient daylight to say, 'How could this be different?'

I am very confident that there will be plenty of people within the disability community, including those demographic agencies associated with particular types of disability, who would have some very helpful views on different ways that the scheme could understand the circumstances of somebody and how that would then lead to the types of investment that would be most helpful to the person.

I am a psychologist by background, and one of the things I have been particularly interested in is the psychology of organisations. I'm fascinated by how organisations run, their cultures and so on. One of the things that's reasonably well known now is that, when an organisation goes through any kind of restructure, for the duration of that restructure people who are involved tend to take their eye off the ball of quality. They lose sight of their ordinary work because they become preoccupied with the restructuring journey. That's why a lot of companies do restructures very quickly and get them over with—they know it's a time of great disruption. What we're going through at the moment is a restructure of disability funding and support. We have this mighty effort to transition from what was, which we know wasn't working for people—the SHUT OUT report was clear on that and that's why we got a National Disability Strategy—to what we hope could be for people's lives in the future. But we are now in this period of the great restructuring of it and, unfortunately, what's happening is that we are so preoccupied with navigating the contemporary pathway that it's not creating the time to think about the quality issues. I think that's what's happening, but I'm confident that there are many people who can contribute to alternative assessment tools.

Ms MACKLIN: It would be helpful for the committee, given the nature of the inquiry, if people could come back to us on the sorts of recommendations we could make to encourage that work.

ACTING CHAIR: We took some evidence yesterday in Brisbane that said a package of $800,000, through some innovation and changes, was reduced to $200,000. So it is not one-way traffic here. If you have an entirely prescriptive model, you can prescribe the ultimate in costs and then, with some interaction, it's reduced. We should look to get the detail of that case. That was the straight-up evidence—$800,000 reduced to $200,000. That would give us some pointers in the right direction.

Ms HUSAR: We've heard a lot of evidence all over the country, and you're the first person I've heard say that Australian Hearing, as the referral pathway, is inadequate or detrimental. You talked about the case of a family not wanting hearing aids. For my benefit, can you explain—obviously its choice and control why someone wouldn't go down that path—the benefit to the child of not giving that child the opportunity to hear?

Ms Limareff : I'm not saying there is a benefit to not giving them one. I'm saying there is a benefit to giving choice and control to other people beyond Australian Hearing to give the same services in a different environment. My example was that Australian Hearing—as of right now I know they are hiring some early intervention staff, and I am ex Australian Hearing staff, so that's out there—doesn't hire any other disciplines outside of audiologists and audiometrists. There are no social workers on staff; there are no early intervention specialists; there are no teachers of the deaf; there are no speech pathologists, although I have heard recently they may hire speech pathologists. My point is that if a child is coming to us and we have all those other supports already—and we have paediatric audiologists on our staff—I think there is a greater advantage to them getting all their services in one place. For example, the way we got hearing on Jackson was the audiologist started showing up at his speech pathology appointments. She became a familiar face and part of his regular intervention. We share all of our clients with Australian Hearing and we have to because they come to us for one type of support and then they go to Australian Hearing just to get their hearing aids. What happens sometimes is that they will rock up for speech therapy appointment and their hearing aid will not be working. We have 10 audiologists on staff, yet technically we are not supposed to mess with those hearing aids. So we then have to send them back to Australian Hearing, who will then do an appointment with the child, maybe a week or two later. We've lost the time for speech pathology, the appointment time and the family time. If this was all happening in one place I think there'd be a greater outcome for the family. I also note the study that says that this country leads the world for not having the loss of children between UNHS and hearing aid fitting, which is fantastic because that does relate to positive speech outcomes. But I would like to put forward the point that—because I used to practice in America as a paediatric audiologist, I can tell you—the reason that people don't take up hearing aids there is that it's not funded, not because there's not a pathway. I think the advantage we have in Australia is the fact that we fully fund these families, and I don't think that if they don't go to Australian Hearing but we continue to fund them we're going to lose.

I would also question why, in a contestable market place, Australian Hearing would pull out. If they have the right end goal in mind and they have families and communities in mind—and they're remaining with government, we've been told—why, if it's a contestable marketplace, are we concerned that they won't be there anymore? They should be; there's no reason I can think of that they wouldn't be. But we're still giving family's choice and control to go to others. I would strongly advocate that we don't open it up to the entire market whatsoever, because I back myself with the fact that we need specialist information and specialists; we need people who actually know paediatric audiology to work with these families and work in paediatric speech pathology. But I really struggle with the concept that these parents aren't able to deal with choice.

Mr Hungerford : If I could respond to that, we—and I think First Voice more broadly would also agree—think that the ideal situation would be for families to be able to choose from a number of service providers who are able to provide an integrated service of hearing aids as well as their other services. We see the advantages of that in our work when we're working with children with cochlear implants because we're able to offer an integrated service there and the children get a much better outcome than they would if they had—as historically existed—two separate services, and the Australian Hearing system will perpetuate that.

Our reason for arguing it is the downside risks. If we have a contestable market it's very likely that a large number of paediatric audiology providers will arrive who do not have good expertise and there'll be people who are tempted down to a bad market. We were originally arguing for exactly the position you're arguing for now and we've given up on the thought that it would be achieved. Then the other thing is that Australian Hearing being there is able to be this expert provider of the initial plans, which would be so hard to achieve otherwise.

Ms HUSAR: It's sort of contrary to what we're hearing, which is why I've asked you about it.

Ms Limareff : We're the only ones who have self-funded fitting hearing aids to children, in this entire country, outside of Australian Hearing.

Ms HUSAR: There are two reasons why we have been successful in those goals, and we are world leaders in this. Coming from a disability background, diagnosis that has no referral pathway or giving a parent a diagnosis of hearing loss and saying, 'See you, out the door you go,' and giving them no actual place to start is very dangerous. I would think that having that very clear pathway is good, and I see Australian Hearing as having the ability to direct a bit of traffic and then provide that—

Ms Limareff : Look, if that works. I, unfortunately, had a son born with not a disability but a medical issue and no-one said to me, 'You must go to this hospital,' or, 'You must see this specialist.' It was, 'Here's a range of what happens in Adelaide and here are the people you can talk to, off you go.' This is what I'm suggesting: I don't think they're going to say, 'We can't tell you anything about hearing loss, good luck to you,' but I do think they can say, 'These are the specialists who work in this field and these are your options.' So I don't think it's black and white.

Ms HUSAR: For some families that would work fine, but there are a whole group of families that aren't able to self-advocate and who would need that stepping stone or that scaffolding to get into—

Ms Mayne : I guess my argument would be: why is that different to any other disability? There are going to be families, no matter what the disability of their child, who are going to be great and strong advocates who can get amazing outcomes for their children, and there are going to be some that aren't. But we don't have those safeguards in any other diagnosis, so why just have it for one specific diagnosis? We don't have it for vision and we don't have it for other physical disabilities, so why only just one?

Mr Forwood : I think we have it because we have this clear evidence that a very early start to aiding, implanting and therapeutic intervention produces such extraordinary results. I can think of some ways in which what you do at Can:Do could possibly be accommodated in time with what we all think is necessary now, but you need every family to get somewhere as a starting point. If they opt out after that, that can be their choice.

Ms Limareff : That's where the ECEI partner will come in.

ACTING CHAIR: It's interesting to see the debate across the table. Thank you very much for a very informative discussion and your submissions.

Committee adjourned at 11:30