Emma Husar (Lindsay, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak on the report Provision of services under the NDIS Early Childhood Early Intervention approach. I am a proud member of this committee, and I will devote a lot of my time—probably an inordinate amount of my time—in this place to ensuring that the National Disability Insurance Scheme is something that we get right, because it is imperative that we get it right and there are a huge number of things that we need to fix.

I thank the chair of the Joint Parliamentary Committee on the National Disability Insurance Scheme, the member for Menzies, the Hon. Kevin Andrews, for all of his work on this committee and for the nature of the way in which he approaches the bipartisan committee and allows everybody an adequate amount of time, energy and resources to get our job done. He's an amazing chair. I know that he's on the opposite side of the bearpit from me, but he's an incredible advocate for the NDIS. I also mention the member for Jagajaga, the Hon. Jenny Macklin, who has devoted more of her working life to ensuring that we get the NDIS up and running than anybody else currently in this place. I thank all the members and senators on the committee and particularly give thanks to the staff of the committee secretariat, who always make coming along to and working for this committee an absolute joy: Gerry McInally, our secretary; Apolline Kohen, the principal research officer; Kimberley Balaga, the senior research officer; and Brooke Gay, the administrative officer. I pay special thanks to Brooke, who has moved on and will be replaced by someone else. I wish her all the best in her new role. The committee received 76 submissions and held six public hearings, and I thank everyone who gave their time by making a submission or attending the hearings and giving evidence.

The NDIS is an insurance scheme that takes an investment approach for people with a disability under the age of 65 to build skills and to improve their outcomes later in life. This is incredibly important for children with a disability. This inquiry was designed to individually determine and facilitate the most appropriate support pathway for children aged zero to six with a disability or developmental delay, regardless of diagnosis—the 'regardless of diagnosis' part is incredibly important to the legislation—and their families. It is incredibly important when we talk about culturally and linguistically diverse families, where advocacy for their children is not as culturally acceptable or as appropriate as it would be if they were not culturally or linguistically diverse.

Having had a lot of interaction with early intervention and the early intervention approach, I can absolutely assure everybody involved in every process that the NDIS is involved in that intervention at those early years is critical. I know that Dr Freelander, a paediatrician with some 40 years experience, will be in here later and will back me up. I have watched very closely the development of a number of children with autism spectrum disorder in particular and have seen kids who were able to get access to early intervention. I have watched a child once diagnosed with severely regressive autism, whose mother was told that he would never speak and never attend a mainstream school, overcome some of those challenges and some of that disability to be playing in a mainstream soccer team now and attending a mainstream school. The benefit to our country in later years when that little boy is employable, when that little boy can live independently and when that little boy does not require the full-time support or care of his mother or sisters is incredible. I can speak quite convincingly on that because that little boy is my son. He has autism spectrum disorder, which was diagnosed at 16 months of age. He was given access to every early intervention under the sun, and he now has a much better future. So I come into this place to be an advocate for everybody with disability—I have a lived experience. But I also know that the benefits for communities, for families and for our country of ensuring early intervention for those individuals are enormous.

By 2019-20 it is expected that 47,000 out of just under half a million NDIS participants with approved plans will be children between the ages of zero and six. The NDIA estimates that a further 59,000 children aged between zero and six may identify as having a developmental delay or disability but are not expected to need individualised funding supports.

The inquiry's terms of reference were the eligibility criteria; the service needs; the time frame; the adequacy of funding; the costs associated with early childhood early intervention services; the evidence of the effectiveness of the ECEI approach; the robustness of the data; the adequacy of information; accessibility, in remote areas in particular; the principle of choice of ECEI providers; the application of current research and innovation; and other related materials. There were some concerns expressed by the committee that I would like to briefly outline.

I know there was cause for concern from the committee that the current access arrangements are potentially disadvantaging families who cannot afford to source expensive assessments and reports to expedite their child's access to the scheme. I mentioned those at the beginning of my speech. The committee is also concerned with the numerous reports of significantly underfunded plans for early childhood early intervention participants, and I will draw the House's attention to a speech the member for Blaxland has recently given in the House where a child's plan had been reduced by 70 per cent. The support that that child is receiving is now reduced by 70 per cent. I'm not sure what therapies that child has had removed from her plan but, let me tell you, if that child presents with epilepsy, autism spectrum disorder and global developmental delay, those supports would be significant and needed.

This is happening now quite frequently. Planners may have a poor understanding of the needs of the children they are developing plans for. My local NDIS office is accessed not by a lift but by a flight of stairs. I will just let that wash over everyone: just marinate on the irony of that for half a minute.

The committee report also explores evidence in relation to recurring shortfalls in plans for children with autism spectrum disorder and the PEDI-CAT tool that is unsuited to assessing the functional capacity of children with a developmental delay, including those with autism spectrum disorder. There is a concern that the ECEI partners do not currently have the capacity or funding to conduct essential outreach and support services for vulnerable cohorts, because all the funding is now individualised. The committee has recognised that the ECEI approach is also in its infancy, so we do give it time to make some errors and to help it along the way.

The committee has made 20 recommendations to strengthen the scheme to ensure children can be appropriately supported to reach their full potential, which is the ultimate outcome of the NDIS. I want to mention recommendation 2, which falls under early childhood partners. The committee is recommending that a nationally consistent process for the engagement of partners be identified by the NDIA. The adequacy of plans, in recommendation 8, says that the NDIA should provide 'ongoing and targeted training' to planners who are creating ECEI plans for children, to ensure they are equipped with the most up-to-date knowledge, expertise and resources in their decision-making.

I would also add in there that their buildings are adequately accessible for those who need to get into them. Funding of plans, in recommendation 11, speaks about the committee urgently recommending that the NDIA address the issues of scope and level of funding in plans for children with autism, with a view to ensuring that recommend evidence based supports and therapies are fully funded. Recommendation 15 says that we want the NDIA to consider allocating specific funding for the development and provision of tailored support programs for parents, carers and siblings of children with a disability through the ILC. I note that the committee acknowledges that better access to support for families and carers should be an integral part of the ECEI approach.

I know that this is important to families because, when you care for a child or a sibling with a disability, it is not just the child with the disability that it impacts on; it is everybody in that household. The rates of divorce and family breakdown where they are caring for a small child with a disability is extraordinarily high, much higher in those communities and those families than without. I know Lindsay families and parents are crying out for better access to supports. My office is a de facto NDIS office. There would not be a day that goes by that I don't deal with or tackle at least half a dozen inquiries from families who need more help, more access or more support with their NDIS plans.

Recommendation 19 is that we want to collaborate with a people with a disability from Aboriginal and Torres Strait Islander and CALD communities, to co-design and develop accessible information about the scheme. That is why I was devastated to hear one of the committee members last week at our meeting say that we don't need brochures or information in other languages. I strongly recommend that we do this and do it as a matter of expediency.

I want to thank everybody who made submissions, those who gave evidence and particularly those who care for children who have a disability, those who make the time to take their kids to the paediatricians, the speech therapists, the occupational therapists, the intervention therapists, the social workers, the play therapists, the music therapists and the special playgroups that are supported and their own support services, because it is an incredible job and an incredible task. I think we all owe it to those people to support them.

Mike Freelander (Macarthur, Australian Labor Party) Share this | Link to this | Hansard source

First of all, I'd like to thank the Joint Standing Committee on the NDIS for their hard work and their very detailed findings, which I thoroughly support. I'd also like to thank all those who made submissions to the Joint Standing Committee on the National Disability Insurance Scheme, and in particular the families that made submissions and spent a great deal of time considering the information they should relate about the NDIS. As I have said, I welcome the findings. In some ways they perhaps don't go far enough, and I think there are some issues with the NDIS that we still need to address.

I have spent all my working life dealing with children with disabilities, and I thoroughly support the NDIS. I think it's a fantastic social intervention that has always had bipartisan support, and I welcome that and I thank people on both sides of the parliament for the development of the NDIS—in particular, Julia Gillard, the Labor Prime Minister whose reputation grows and grows the longer it has been since her prime ministership. I also thank some on the other side, such as the member for Warringah, Mr Abbott, who was also a strong supporter of the NDIS.

As I have said, I think the NDIS is a fantastic social intervention, and I've seen the relief on the faces of parents who have a child with a severe disability, knowing that their child or children will receive lifelong care and support. I would stress that that is not just because of the financial supports involved and the supports in providing housing and intervention services. This is something that's really important to me. What the NDIS says to those who have a child or a person in the family with a disability is: 'You are part of us; you are part of our society. We will bring you with us. You are as deserving of the fruits of our social networks as anyone else.' I think that's a really important inclusive message, and a very important message that the people of Australia are giving to those who are less fortunate. So it is really important from that philosophical point of view as well as from the other points of view. It's a sign that we as a community recognise that we're all in this together and that we will lift you up and you will come with us on our journey. As I have said, I welcome the findings of standing committee and I welcome its recommendations.

I acknowledge that the NDIS rollout has not been perfect. I didn't expect it would be. I think there are few of us in the paediatric community that found it all smooth going. There are lots of wrinkles that need to be ironed out. The rollout in many places has been very rapid and there have been problems with poor training of the planners and assessors. There have been some haphazard plans and long waiting times before review. I tell all my patients and their parents not to accept plans over the phone, that the planners need to see the child in person, preferably in their own home. As has already been mentioned, there have been some difficulties even in accessing NDIS offices, and I think that's been part of the poor planning process. I know that originally in many areas there was a plan to have standalone NDIS offices. But, because of moves by this government to try and compress the budget, NDIS offices have now often been forced to move into Centrelink offices, often in cramped conditions, with poor wheelchair or even poor stroller accessibility. That's not been a good thing and I hope that that will change.

I think that some of the planning basics that should have been considered by the NDIA have been underbudgeted and not thought through—things like personal care costs, transport costs, transition-to-work programs for people with disabilities and, in particular, and it's been brought to my attention by a number of my constituents, funding for mental health disorders and rehabilitation for people with severe mental illness. These issues are brought up time and time again, not only by the constituents and their families but also by some of the providers in my electorate of Macarthur, and I'm trying to work through these issues on a daily basis with many of them.

We know that many parents who have disabilities have a lot of trouble interacting with the NDIS, and they can have similar problems, in this day and age, dealing with Centrelink. I think that's an issue that needs to be thoroughly canvassed. It seems that the people who get the best NDIS plans are often those who are the most articulate and the best advocates for themselves and for their children and family members. So I think we could do more in that space.

However, to me the most glaring deficiency has been the lack of planning for those very young children requiring early intervention programs. These are children who often present with problems from birth, and we have previously had very good services for them. We are now in danger of actually making things worse, not better. A prime example is those children who are born with severe to profound hearing loss. In Australia, we have one of the best programs in the world. Every newborn child in Australia has a hearing test in the first few days of life, and if they're diagnosed with a severe or profound hearing loss they're immediately referred to the National Acoustic Laboratories—a free service provided by government—and then on to an early intervention program. In my home state of New South Wales, the biggest provider of these services is the world-famous Shepherd Centre, which provides fantastic early intervention programs for children with severe to profound hearing loss—often those children requiring cochlear implants.

We know that world's best practice is to intervene very early for those children—with hearing aids and speech therapy and other interventions on a frequent basis. The problem is that with the NDIS there is a long lag time between diagnosis, the package being produced and the financial remuneration. This means that places like the Shepherd Centre have to carry the not inconsiderable cost of the early intervention programs, often for many months, before the remuneration package comes through. That means that they may not be able to provide the services that they have been providing throughout New South Wales. That's something that certainly needs to be looked at and reviewed. We don't want to lose our world's-best-practice management of infants with severe to profound hearing loss.

We also know that in cases of very young children with disabilities it's often hard to form a final diagnosis, and it's often hard to get in for assessments because of long waiting times. In my electorate of Macarthur our child development unit currently runs on a waiting time of almost 12 months. This means that even though the children would benefit from early intervention, because of financial constraints, very often they may not get their therapies until their NDIS package is approved after the initial assessment for which they have already waited a year. They may then wait many months after that to get the financial package. So I think we need to do more about the early provision of NDIS packages for children with severe disability who are very young and who require early intervention.

Our long waiting times often relate to funding issues at our local hospitals. That's certainly true in my electorate. I think we could do more to commence early intervention programs in very young children. In Macarthur there's a very good program, the KU Starting Points, run by the former Kindergarten Union. It provides early intervention programs, but it does miss out on funding from the NDIS because of the long delays.

I think the NDIS is a wonderful program. I thank both sides of parliament for it and I thank the standing committee for their findings. But there is more to be done.

Debate adjourned.