Chris Hayes (Werriwa, Australian Labor Party) Share this | Link to this | Hansard source

All of us with kids know how difficult and challenging it can be to raise children—the love and attention they need and the help they need to realise their full potential. However, families with children who suffer the autism spectrum disorders face many more complicated and worrying days than the rest of us. Few people really understand the challenge that parents face in that regard. Many of my local constituents who are parents of kids with autism have told me that existing services do not seem to cater for their kids’ special needs. Children with autism deserve the same start in life as everybody else, and when it comes to autism we are really talking of the need for early detection and early intervention. That is most important. The government understands this very well and is committed to offering support through six autism specific childcare centres and, in particular, the helping children with autism package. I accept that, as you say, this is a drop in the ocean, but it is a very clear start.

Parents know that mainstream childcare environments can be overstimulating for kids with autism. That makes it difficult for them to develop new skills. Kids with autism are better supported by services which take an autism specific approach to their development. These specialised childcare centres and early intervention services can also provide parents with much needed support and respite. These centres work very closely with the health services to help improve the consistency of autism diagnosis and, essentially, to assist parents with the necessary support. This initiative is most welcome by the 125,000 families affected by autism, particularly those families that the member for Fowler and I represent throughout the south-west of Sydney.

Tragically, the south-west of Sydney has a great percentage of people who suffer from autism. We are clearly overrepresented with people who suffer from autism. In fact, FaHCSIA’s statistics, which I looked at only yesterday, show that 50 per cent of people with autism in New South Wales actually live in the south-west of Sydney. The long-suffering families in the south-west of Sydney deserve the right to have access to appropriate services and professional support. This government’s commitment goes a long way to making sure that they do. Every time I speak to local families affected by autism, quite frankly it reinforces for me the need there is for support for these families and their children. These are people like Grace Fava, the founder of the autism advisory service, who has two little kids. One is Pasquale, aged six, and the other is Gianni, aged four. Both have been diagnosed with autism. Julie Dahmen, from Cecil Hills, has an 11-year-old child, Corey, who I have met on a number of occasions. They know only too well the special needs their kids have. We know that we have to do much in relation to developmental needs, occupational therapy and speech therapy, all of which need to happen early in order to help these kids.

One of my own staff, Vicki Meadows, has an 18-year-old daughter named Melissa. Melissa is autistic, with severe developmental delay. Melissa has never acquired speech and has limited life and communication skills. As a result, Vicki has a very close and wonderful working relationship with many of our local services and understands firsthand the many problems faced by families living with autism. She fulfils a fantastic role for me in that regard. I very much appreciate the compassion that she shows in her work with the families in my area.

Research and experience have shown that the earlier the diagnosis of kids with autism and the earlier their enrolment in early intervention programs, the better the outcomes. Early diagnosis and intervention are also essential to ensure families like Grace’s and Julie’s have access to appropriate services and professional support. I congratulate the Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin, and the Parliamentary Secretary for Disabilities and Children's Services, Bill Shorten, for being acutely aware of the needs in the south-west of Sydney and I am delighted that this important matter is progressing positively. South-west Sydney has very clear needs in respect of the treatment of autism— (Time expired)

Louise Markus (Greenway, Liberal Party, Shadow Parliamentary Secretary for Immigration and Citizenship) Share this | Link to this | Hansard source

I rise today to support the motion and the initiatives put forward to assist families with children with autism spectrum disorders. This is something close to my heart and something that I worked very hard to achieve when the coalition was in government. In particular, I support the call to have a specialised childcare centre established in south-west Sydney. It was the coalition that got the ball rolling on help for families with children with autism spectrum disorders. Last year the coalition announced funding of $190.7 million over five years. The key to that package was $116 million for early intervention programs to assist young children up to age six and their families to gain access to better support and services.

Historically, funding had gone to the states for broader disability support but those programs did not adequately address the needs of families with children with autism. As a consequence, many families battled on, getting what help they could from a state system that could barely cope with the demand. Alternatively, families saw how hopeless the state support system was and shouldered the costs themselves. In some cases that cost was estimated to be up to $20,000 per annum. The coalition took leadership on the issue and came up with a comprehensive plan. Over the five years of that plan, up to 15,000 families, carers and children were to gain access to a range of education, support and early intervention services.

The specific causes of autism are not known. What is known is that intervention works best when diagnosis is made early and a broad range of support services are utilised. There is no single, short-term solution. That is why I worked hard with families and my colleagues to come up with a plan to help those families. The coalition’s comprehensive plan to help families included: extending Medicare to cover diagnosis and treatment for children up to 13 years of age for paediatricians, child psychiatrists, speech pathologists and occupational therapists; training and support programs for parents and carers to undertake early intervention activities at home; one-day workshops and information sessions, including access to online workshops and information for up to 5,800 parents and carers of school students with autism spectrum disorders; professional development for an estimated 1,800 teachers and other support staff to assist school students with autism spectrum disorders to achieve better education outcomes; up to 200 new autism specific playgroups across Australia, providing access for more than 8,000 children with autism, by 2012; access for up to 4,000 eligible children who require more intense activities than can be offered through playgroup to one-on-one and tailored group programs for two years; and for 1,200 children who are the most severely affected, individual assistance of up to $20,000 for eligible families over two years to contribute to intensive early intervention services.

While I congratulate the new government for following the leadership of the coalition on this matter, I note that some of the specific programs put forward by the coalition have been watered down. Some of the numbers against specific programs appear to be missing. Many families are desperate for help and have enormous financial, emotional and social challenges. They are coping but barely. I want to thank not just the coalition for listening to my representations on behalf of my community but also my colleagues—the member for Sturt, the member for Riverina and the member for Canning to name some—for their advocacy.

There is much more that needs to be done. The challenges are still there. That is why I support, and call on the government to consider, a specialised childcare centre to be established in south-west Sydney. This is a good start but more is needed. I note that the government has said that through a related initiative they will establish six autism specific childcare centres which will provide individualised programs for children with autism spectrum disorders, but where is the detail? Autism is debilitating but with intervention in the early years children will have the opportunities to fulfil their potential, and they deserve nothing less. I call on the government to not just make a start but consider moving beyond this and consider a specialised childcare centre not just for south-west Sydney but for other parts of Sydney and the nation, and give families and their children with autism hope and support.

Julia Irwin (Fowler, Australian Labor Party) Share this | Link to this | Hansard source

I am pleased to second the motion moved by the member for Werriwa. Autism spectrum disorder affects more than one child in every 100 in Australia. Autism refers to a group of developmental disorders that affect a person’s interaction, communication and behavioural patterns from mild to severe degrees. In New South Wales alone autism affects 43,000 people. It is a disability which, as the motion recognises, can be addressed by intervention such as special education, speech therapy, occupational therapy and other behavioural interventions. To be most effective those interventions should begin at an early age when they can lead to those affected achieving a full and productive life.

In south-western Sydney the rate of autism is, for unknown reasons, higher than in other parts of Australia. In this less well-developed part of Sydney, which is home to more than one million people, autism services are stretched to the limit. Waiting lists can be as long as two years. When early diagnosis and intervention is critical for success, the delays can reduce the effectiveness of intervention programs. This puts further pressure on dedicated parents anxious to help their children to lead a normal life.

Among the most effective ways of assisting children with autism spectrum disorder is access to specialised childcare facilities. Centres which provide the appropriate education and therapy as well as developing the skills and resources of parents represent the best way of dealing with autism in urban communities.

My interest in the plight of families with children diagnosed with autism was refreshed by my constituent Mrs Grace Fava. As the mother of two boys aged four and six, both of whom have been diagnosed with moderate autism, Mrs Fava is well acquainted with the frustration faced by parents. Mrs Fava founded and is currently president of the Autism Advisory and Support Group. Her experiences have much in common with other parents in south-western Sydney. While services are targeted at those severely affected, those at the moderate and lower end of the scale have a greater potential to lead normal, productive lives. The lack of available services condemns them to achieving less than their full potential. In honouring an election commitment, the government has recently announced $190 million over five years to helping children with an autism package. In addition, the government is committed to the development of six autism specific childcare centres.

I am not one of those members who advocate resources for their own electorate when there is a stronger case for resources in other parts of Australia. In this case, however, there is a clear case for locating an autism specific centre in south-western Sydney. For people from other states and even for people from inner Sydney, it is often difficult to get across the sheer size of Sydney. With nearly four million people spread over 2,000 square kilometres, it is not a matter of saying one centre in Sydney can serve the whole area or population. In other parts of Sydney—in the eastern suburbs and inner western areas—general preschool disability services are available. Services such as speech therapy, which is an important part of autism intervention, however, are not as readily available in south-western Sydney as they are in other areas.

It is important to consider the needs of regional areas of Sydney if we are to effectively deliver these essential therapy services to the families in need of them. Too often we have seen families forced to spend many hours each day travelling to centres located far from their homes and employment. While I can appreciate that in country areas this is not unusual—and I do sympathise with isolated families—surely we can plan for the efficient delivery of services in our major cities in ways that reduce this costly and stressful burden on the families of children with disabilities. The location of one of the six autism specific centres in south-western Sydney is a much-needed step in providing these important services in a place close to the children and families who so desperately need them.

Kay Hull (Riverina, National Party) Share this | Link to this | Hansard source

It is again a great pleasure to rise in support of a member who has decided to put his support behind autism and the families of people with autism. I have done this many times in the House. I have had grievance debates and put up many issues in relation to autism. So it gives me great pleasure to now stand as a member of the opposition supporting families who have children with autism. There is no doubt that we need early and accurate diagnosis of autism. This needs to be supported by treatment plans that are prepared by early intervention specialists. I have one such early intervention specialist in my city of Wagga Wagga that covers the entire area around the Riverina. They do a sensational job and it is not autism specific but it is dealing with a lot of mums and dads and new babies and providing a significant approach to the way in which autistic children will be able to achieve their life’s potential.

It is unfortunate that, at the completion of education, around seven out of eight people with autism receive the disability support benefit once they reach an eligible age. With early intervention this can be halved if not further reduced simply because it enables the much-needed speech pathology and a host of other occupational therapies to take place that will enable a child to go into mainstream, if that is the case, and be able to make a fist of that. We need to be able to prepare our young autism sufferers to live and work independently. In fact, it can happen. The majority of these young people do not have intellectual disabilities and they do not have health reasons why they really cannot participate in a normal workforce. They just simply have not had access to early diagnosis and the available treatments with significant treatment plans that give access to numerous services.

Just recently 27-year-old Justin Omrod from Orange, who suffers from Asperger’s syndrome, decided to go on a bike ride. He came through my region of Cootamundra, Junee, Wagga Wagga and Gundagai. On his ride he was trying to indicate to the minister that he wanted the commitment to autism honoured. During his ride Justin launched a 16-page publication called Turning wheels for autism. It is a navigation book for country New South Wales. This is a guide to autism and the book contains information about what autism is, hints for families and carers, and contacts and support services. Justin did a fabulous job in raising the issues of autism through his ability to cycle such long distances.

I would like to thank the government and the minister particularly for funding for another 12 months the program from Currajong Early Intervention Service called Team around the Child. It was most welcome, and even if it is just for 12 months it has enabled us to keep our professionals. I would urge the minister to come to visit the program and to see just what a hub and spoke network does for early intervention services in rural and regional areas. We have this outreach service that goes out to the communities, and many of the clients of Team around the Child have been the families who are experiencing autism in one or two members—at times there can be three tragic cases—where there has been no support services made available to these families.

I thank the minister for funding Team around the Child: Working together in early childhood intervention. It was a fabulous initiative of the last minister. It has now been responded to by the Minister for Families, Housing, Community Services and Indigenous Affairs, Jenny Macklin. I openly urge her to look at this program, to see that this program could be rolled out right across Australia. It is sensational. It has now been adopted in many countries overseas. In my view, it is a great credit to Kurrajong Early Intervention Services, particularly Sue Davies, who has retired and moved on to easier issues. She is a women who has fought fiercely for the rights of those in the disability sector. (Time expired)

Sid Sidebottom (Braddon, Australian Labor Party) Share this | Link to this | Hansard source

A vital part my education on autism has been Burnie couple Marisa and Andrew Barry, who have been dealing first hand with autism since their twin daughters Zara and Kayla were first diagnosed. Andrew describes the diagnosis as ‘being let loose in a maze with a blindfold and nobody to help guide you.’ To their great credit Marisa and Andrew were not deterred when heading into that maze and through perseverance and a daily battle they have seen their daughters make great progress in their development. In their own words, it has been a search, and one that continues to this day—something they hope to help overcome for other families through input in a new autism centre announced for my electorate of Braddon by Jenny Macklin, the Minister for Families, Housing, Community Services and Indigenous Affairs. Andrew says:

The week after Zara & Kayla’s second birthday we received their initial diagnosis of PDD-NOS (Pervasive Developmental Disorder—Not Otherwise Specified). The girls received the diagnosis of PDD-NOS not Autism as determined by the Assessment criteria as they were under 3 years of age.

The most disappointing aspect of the diagnosis was the manner in which it was delivered which in summary was ‘they are 12 months behind now, that is a lot for this age, they will probably never catch up, I am very sorry to be delivering you this news but I have to rush I have another appointment to attend.

We didn’t receive any referral to the Autism Tasmania Network or suggestions of possible or potential treatments or interventions.

This was our first example of the ignorance of the Tasmanian Medical Community to (ASD) Autism Spectrum Disorder.

The couple started their search for information and assistance and began an applied behaviour analysis program developed by Dr Ivor Lovaas and recognised as the most successful and proven intervention for autistic children. Andrew goes on to say:

Research has proven that if a child receives 40 hours a week of 1:1 intervention from an early age (preferably 2) a significant proportion of children lose their diagnosis of Autism.

We commenced this therapy program with Marisa being the active therapist and given other parental responsibilities of 3 young children could only manage 1 hour of therapy per child a day. In order to increase these hours it necessitated us to recruit suitable persons to undertake this role. This process within itself to obtain suitable and reliable persons to undertake this role is very difficult and stressful.

Due to lack of services in Tasmania it was necessary for us to engage the services of Victorian ABA Providers. This was necessary to train therapists to undertake the ABA. This involved a weekend training workshop and monthly visits thereafter. It is necessary for us to pay for her flights to and from, arrange accommodation in addition to her consultancy payments.

We have seen Zara &Kayla progress with their ABA from being strapped in their highchairs requiring full physical prompting to have them clap or wave to now being able to sit at a desk and attend school for lengthy periods of time completing various tasks. These tasks include

• able to read in excess of 250 words
• reasoning skills
• math skills
• appropriate play skills
• appropriate conversation &
• now have receptive comprehension to age level.

As earlier commented, GP & Paediatric services were grossly inadequate, accordingly we sought out specialist services. To obtain such a service we waited for 12 months to see a well-known Sydney based Autism Specialist.

This trip required us to have our eldest daughter cared for whilst we undertook a stressful journey with Zara & Kayla to Sydney for their initial consultation.

Phone consultations on a monthly basis are required to monitor treatments and further testing. As these were not done by visitation they are not Medicare claimable and as such are extremely costly.

The Barrys remain optimistic. Andrew says:

There is no cure for autism. But there is a lot that can be done to improve the quality of life, not only for the directly affected children but also for their families. It is possible to provide any affected children with a normal life through their adolescent and adult life. Sure they may still have a few quirks but haven’t we all—

indeed—

For some this journey will last a lifetime. However it is possible to make a significant difference. Early diagnosis and intervention is the key.

It should not be this hard, Colleagues, and it is families like the Barrys who are blazing a trail for others to follow, particularly in my electorate. We should be doing everything we can to help them, and others who follow, to negotiate their way through the autism maze. I thank honourable members, particularly my colleague for raising this very important issue.

Greg Hunt (Flinders, Liberal Party, Shadow Minister for Climate Change, Environment and Urban Water) Share this | Link to this | Hansard source

I rise to give my wholehearted and bipartisan support to this motion. My office and I have interacted with families of children who have autism or autism spectrum disorders, as have almost all—perhaps all—members in this chamber. It is a real challenge and, as the father of a three-year-old, I understand how lucky and blessed I am to have a child with just the normal array of toddlers’ challenges. For parents of children with autism there is a great challenge, and the challenge comes about from this particular fact: it is permanent but it is treatable. That is the most important thing. That means it is something for which those of us in this chamber and in this parliament have a responsibility. In our time and on our watch we can do more to deal with this challenge.

I had the fortune recently to meet with researchers from Monash University, and they explained to me that through early intervention and early diagnosis we are able to take early and permanent action. The action which is taken in the first five years of life for those diagnosed with autism or autism spectrum disorders can make a difference for an entire life. That is a weight, a task and a responsibility which is real, important and significant. Many of our debates here are important but in some way anodyne, disconnected from the reality of a person’s day-to-day existence, but if we give bipartisan support on this issue the work that we do can be real and profound and transform not just one life but an inordinate number of lives of children and, in turn, of brothers and sisters and of parents. It is the ripple effect writ large.

Let me turn to one particular example. I have had the fortune to meet a woman in my electorate called Helen Lloyd. Helen is the mother of a little boy, Jordan, who has an autism spectrum disorder. He is making his way through primary school and is on his way towards secondary school. Every year Helen stages a walk of about 20 kilometres along the southern coast of the Mornington Peninsula. She does that to raise money for funds to provide additional assistance for Jordan in school. Without that additional assistance, Jordan would not be able to progress, would not be able to take the steps which have seen him become such a delightful young man. It has been a real honour to know Helen and Jordan, but I have seen the struggle which they have had to go through in order to obtain that special assistance, the additional teaching support. Jordan is a sufficiently high-functioning and intelligent boy to be classified as not needing the full array of support, which would give him the chance of leading the fullest, best life that he could lead. Therefore, his mother has had to struggle and scrape and work to make that difference. The challenge we face with autism is defined, to me, in the life and existence which Helen and Jordan Lloyd have had to lead. They have succeeded and triumphed and beaten the odds, but it is, I think, through the strength and courage of Helen and through the determination and delightful character of Jordan that they have been able to do so.

Not everybody has been as lucky as to have that combination. That is where our task begins. There are two things which need to happen: firstly, the groundbreaking research through organisations such as Monash University. If there is anything in our society which is deserved of funding, it is this sort of research to assist with understanding the diagnosis, the early intervention and, ultimately, the treatment which will deal with this problem of autism. Secondly, it is the funding itself for each individual case to ensure that as each child goes through preschool and primary school they get the direct support of additional personal assistance. That personal assistance will make the difference to the quality of their lives. That is real and important and that is what we stand for in this parliament. It is our task. It is our watch. I thank the member for the very valuable motion and we offer our bipartisan support.

Sharon Bird (Cunningham, Australian Labor Party) Share this | Link to this | Hansard source

Thank you, Mr Deputy Speaker. Firstly, I thank the member for Werriwa for putting the motion before the House today. Like many members here, I also have a fair amount of lobbying occur in my electorate from parents of children with autism. On 30 April I was invited by the principal, Mr Bruce Rowles, of the South Coast School for Children with Autism to a parents’ coffee morning at which there were approximately 30 parents present who wanted to take the opportunity to talk to me about some of the experiences and challenges they had come across in having a child with autism. I firstly put on the record my sincere appreciation for the great honesty and optimistic way in which they presented the issues to me. It is interesting to note that a number of them have multiple children with autism spectrum disorders. Often it is not just one child that a family can be dealing with; it is not uncommon for there to be multiple children with the ASD at varying levels within one family.

It is also true, as the paediatrician in my area with whom I was talking about this acknowledged, that it is an increasing occurrence. For reasons we do not yet understand, the regularity of ASD in children is increasing significantly. It is, sadly, not a condition that we are seeing decrease over time, but in fact increase. I reinforce the comments of the previous member about the importance of research not only, I suspect, into the nature of the condition and its best treatment but also perhaps into reasons why we are seeing an increasing occurrence of it in our society.

Having said that, one of the most profoundly telling stories that came through to me from these parents was that very initial experience of the often drawn-out, difficult and very worrisome process of identification and diagnosis. Many of us have been referred by our GP to a specialist for particular tests and we come back to the GP to get the results. Few of us realise that that is exactly what happens also with parents whose child has been referred to specialists for testing and they come back to the GP for the result of that testing. Sadly, with the best will in the world, most of our GPs rarely have these cases so they are not well-equipped to actually deal with the parents at that very critical point where they are getting that diagnosis back, at the point where you have the most chance of connecting them to the relevant services and to letting them know that there are supports and particular interventions available.

This was a very common story round the table from all 30 parents. As a result of that, I contacted the Illawarra Division of General Practice to get them to have a look at the issue of providing better service support to our GPs so that when they get a diagnosis back—and I cannot imagine they have too many in their professional career—they can connect with the division of GPs and say: ‘I have the diagnosis back; I have the parents coming in. What do I need to be telling them? What is the best way to handle this?’ The following most common story is their frustration with knowing that early intervention is critically important and can make a world of difference and then finding access to that early intervention. In some ways it is almost worse than thinking that there is nothing there, to know that there is something and you cannot access it for your child.

That is why I think many of the initiatives under the Helping Children with Autism package are profoundly important for these families—in particular, the Department of Health and Ageing’s contribution to that package for helping children with autism, to increase and provide Medicare items. I just want to acknowledge these because they are important to these parents: Medicare items for consultant physicians to diagnose and develop a treatment plan for children aged under 13 on referral from the GP; psychologists, speech pathologists and occupational therapists to provide up to four services per child to collaborate with the psychiatrist or paediatrician on the assessment where required, so they are not left alone to do that; and psychologists, speech pathologists and occupational therapists to provide early intervention treatment following diagnoses of up to 20 services per child. It is a significant increase. I know, for those parents in my electorate, it is a really important initiative which will assist them.

Danna Vale (Hughes, Liberal Party) Share this | Link to this | Hansard source

Order! The time allotted for this debate has now expired. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.