Jane Prentice Speaks For Those Who Cannot

Yesterday, Jane Prentice, Federal Member for Ryan, stood in the Australian Federal Parliament and spoke for those who cannot. People with Language Disorders. The transcript of the Private Member’s Motion debated in Federation Chamber last night is below.  The words spoken by Jane Prentice and supported by members of both sides of parliament reflect a combination of many years of unrelenting provision of information by our Development Officer, Bruce Grundy, to State and Federal politicians as well as the longstanding relationship we have built with Jane Prentice in her current role as Federal Member for Ryan as well as her previous role on Brisbane City Council.  The process has been facilitated by the recent activity of the Glenleighden Action Group and by individual parents who have spoken to their local representatives about their personal journeys.

Please read the transcript as it is quite overwhelming reading and hearing these words, verbalised with such accuracy and clarity.  What a difference we can make when we are united in one purpose.  Thank you to all who have participated so far.  This is just the beginning.

Vikki Rose Graydon – Executive Principal

Debate resumed on the motion by Mrs Prentice: 

That this House:

(1) notes that:

(a) Primary Language Disorder (PLD) is a lifelong disability which affects many children in Australia;

(b) families of children with PLD face great uncertainties and vagaries due to the obscure nature of PLD and therefore the difficulty of reaching a diagnosis of their child’s disability;

(c) children with PLD have the best chance in life if they receive treatment for their condition as early as possible;

(d) without intervention, there are profound long term implications for affected individuals in terms of gaining an education and employment, leaving them feeling isolated and despondent and at a high risk of developing depressive and anxiety disorders; and

(e) an April 2012 report by the Australian Institute of Criminology highlights the high incidence (50 per cent) of oral language dysfunction in youth offenders;

(2) recognises that:

(a) the CHI.L.D. Association’s Glenleighden School is the only school in the southern hemisphere which caters specifically to the needs of children with PLD and other language disorders;

(b) for over 30 years, this school has achieved significant results for thousands of children;

(c) the CHI.L.D. Association:

(i) through both its outreach program and direct clinical services, provides support for children with PLD and their families and schools across Queensland; and

(ii) provides quality specialised early intervention services through its clinic, but is limited to those families who can pay for services as PLD does not fulfil the criteria for funding under the Better Start for Children with Disability Initiative; and

(d) there are currently no consistent eligibility criteria across Australian States and Territories for children with PLD to access specialised educational resources; and

(3) calls on the Government to consider PLD as part of a review of the Better Start for Children with Disability Program.

Mrs PRENTICE (Ryan) (19:36): I thank my colleagues who are speaking in support of this motion. I have moved this motion because this is such an important issue for the parents and children of Ryan, and across the country. As we see a concerted push to secure support for the most vulnerable in our community with the National Disability Insurance Scheme, I want to ensure that the children with communication difficulties, and particularly primary language disorder, are not ignored. Primary language disorder is a lifelong disability which affects children of all races and backgrounds across the country. Some studies indicate that communication disorders can affect up to one in 14 children. In Sydney, McLeod and McKinnon conducted a study of 14½ thousand primary and secondary school students and found that the incidence of communication disorders was in the order of 12 to 13 per cent.

To explain this speech and language impairment, primary language disorder is primary in the sense of being the most significant impairment contributing to activity limitations and participation restrictions on the individual’s current wellbeing, as defined in the World Health Organization’s International Classification of Functioning, Disability and Health. Because there has been a lack of clear evidence of specific neurological structural or functional differences to define the disorder, the medical and allied health community have had much difficulty agreeing on a consistent classification and definition of primary language disorder, let alone achieving full recognition in the community of its debilitating effects.

What we do know is that children with PLD will have difficulty understanding what others are saying and in using words to respond. Such a child may not respond to their name and may be reluctant to take part in conversation. They may struggle with reading because of difficulties sounding out words and understanding what is being read. They may struggle with writing when forming letters, words and sentences. And they may struggle with numeracy arising from the inability to appreciate sequences as well as abstract concepts. Children can also be easily distracted, readily given to frustration and therefore reluctant to learn new skills. These realities mean a child with PLD may not be able to communicate their wants and needs to parents and siblings and others, and may not be able to handle simple classroom tasks or respond adequately to instructions. In turn, these issues may lead to serious frustration and outbursts of temper and tantrums, which usually means normal schooling for such a child is quite problematic and social acceptance more broadly is particularly limited.

It is important to note that these children are not necessarily intellectually impaired. Their hearing and vision are usually excellent, they may have the same physical potential of others of their age and their appearance almost always provides no clue. Therefore, families and children face great uncertainties and vagaries due to the obscure nature of PLD, and that can cause great difficulty in reaching a diagnosis of the child’s disability. Without intervention there can be profound long-term problems for students to gain a full education and employment. Sufferers can feel isolated, despondent and anti-social, leaving them at high risk of developing depressive and anxiety disorders. This can lead them down the slippery slope of serious antisocial behaviour and brushes with the law. They then become part of the offender cycle, where the frustration of suffering and isolation from untreated speech and language impairments can lead to multiple incarcerations. Worst of all, because of their condition, sufferers have enormous difficulty explaining or even defending themselves against accusations of illegality.

However, there is some hope for these children and their families—hope that this spiral can be broken. Since 1976, the CHI.L.D. Association has catered for children and adolescents with severe speech and language impairments through both the Glenleighden School and its Let’s Talk Development Hub. The team at CHI.L.D. Association has been successful in treating thousands of children who have the most severe forms of primary language disorder. I would like to take this opportunity to thank the countless numbers of volunteers and staff who have been involved with CHI.L.D since its founding, including—but not limited to—their current executive principal, Ms Vikki Rose Graydon, who has been with the association for 20 years. I would also like to thank head of school Cae Ashton, tireless fundraisers such as Bruce Grundy and of course the staff and allied health staff, including teachers, physiotherapists, speech pathologists, psychologists and others involved in all the projects.

Children who attend the Glenleighden School enter with between zero and two per cent of the speech language capacity of their peers. Clearly, we are talking about the most severe cases of PLD, but at the Glenleighden School they have developed an approach that successfully helps these children achieve their educational and personal potential—so successful that a child may only need to attend the school for one year or a couple of years before they can enter the mainstream schooling program. Some students attend the school through to senior school, continuing to work on their disorder. Unfortunately, the Glenleighden School is the only one of its type in the southern hemisphere which caters specifically for children with PLD. Parents come from all over the country to bring their child to Queensland at a huge financial cost to their family, uprooting themselves for a better life for their child. Similarly, the association’s Let’s Talk program provides outreach services for more than 300 children a year, not just in Brisbane but at schools across Queensland. They help children with PLD and also intellectual disabilities, autism spectrum disorder, dyspraxia and other conditions. The important work that these people do for what are some of the most vulnerable children in our community cannot be underestimated.

I mentioned in my maiden speech that some issues are simply too important to resort to partisan attacks. We must all support the CHI.L.D. Association’s work in a bipartisan manner. I would like to thank my Queensland colleague Senator Claire Moore for the support she has given, as well as the shadow minister for disabilities, Senator Mitch Fifield, who has visited the school with me. There are two main issues which Australian governments must address. Operational definitions of disability are inconsistent across states. In Queensland PLD is listed under a category of speech language impairment and funding is allocated on that basis. In some states direct funding for teaching children with PLD does not occur. In the final report of the Gonski review, no recommendations were made for disability loading on the basis that the panel perceived ‘significant obstacles’ preventing them from doing this. Therefore, there remain significant concerns in the community about whether implementation of the Gonski review will address concerns about disability loading. Australians still do not know what support will be provided to all Australian students, including those with a disability, despite the government having received the Gonski review in 2011.

The issue of inconsistent recognition across the states affects the ability to treat children equitably. At present, although research is clear about the incidence and impact of PLD on children, there is no direct early intervention for children affected by PLD because it is not recognised as a condition with respect to the Better Start initiative. As a result children will often be diagnosed and treated as having PDDNOS—pervasive development disorder not otherwise specified, which falls under the umbrella term of the autism spectrum disorder. This can be a huge problem because often treatment will then be focused on the social and emotional problems of a child rather than on the linguistic problems, which secondarily cause social and emotional problems.

In 2010 the Australian government announced new funding to improve access to early intervention services for eligible children of up to $12,000 with a maximum of $6,000 per financial year. Funding is available for cerebral palsy, Down syndrome, fragile X syndrome and some vision or hearing impairments. The list of currently eligible conditions means that some disabilities make the grade while other families with children whose needs are just as great miss out on assistance. I have written on numerous occasions, as has the organisation, to members of the government, who have assured me and CHI.L.D. that work is underway for a more consistent definition of disabilities at the national level. So it is incredibly disappointing that progress has been very limited to date and the government has indicated that they will not assist children with PLD.

Furthermore, because there is no consistent definition, the school must classify their students as having either a physical disability or an intellectual disability in order to gain access to federal funding. The school therefore believes it is an important ethical issue because, as previously mentioned, a child who suffers from PLD does not necessarily have a diagnosable physical or intellectual disability. As I have said, it is imperative for the prognosis of children affected by PLD that they receive intervention as early as possible prior to entering the education system. Therefore, there is the potential to benefit these children by including the most severe forms of PLD as a treatable condition in Better Start for Children with Disability. Including primary language disorder on the list of eligible conditions will provide certainty and assurance to parents across Australia that their child will have access to early intervention treatment directly related to their speech-language impairment. I commend the motion to the House.

Mr RIPOLL (Oxley—Parliamentary Secretary to the Treasurer) (19:46): I commend this motion to the House and want to add my support for people who have primary language disorder and their families. I recently met with a constituent of mine, Deborah Heller, a mother whose son lives with primary language disorder. I would like to publicly commend Deborah and her husband, Justin, for bringing their story to my attention and for their persistence and strength. They are truly remarkable parents. I would like to begin by telling you a little bit about their story. Deborah and Justin’s son Cooper was born in 2007 and they realised early on in Cooper’s life that something was not quite right. He could not speak at all and was becoming isolated from family and other children. Cooper became anxious and frustrated and was completely incapable of communicating the simplest of messages. The family also faced prejudice in the community, as you can probably imagine. Deborah said to me, ‘Please take a moment to really think about how you would feel if other people watching your child grunting, squealing or being generally inappropriate for their age said to you, “If he was mine I’d kill myself.”‘

Deborah and Justin faced an uphill battle in getting help for Cooper as waiting lists for speech therapy were extensive in both the private and public sectors. They happened to live in Townsville at the time. After travelling from Townsville to Brisbane to see a neurologist, Cooper was diagnosed with severe speech-language disorder. Language disorders and impairments are very much a hidden disability in the community. Few people understand the disorder and we rarely speak about it. I would, therefore, like to bring this important issue to the attention of the House. Children like Cooper are often misdiagnosed, sometimes with autism or intellectual impairment. Primary language disorder children can have autistic traits, sensory issues, major behavioural challenges, delays in developmental domains and problems with gross and fine motor skills. These traits often combine to pose severe barriers to their ability to learn.

After approaching numerous schools in Townsville and finding none that could help, the family decided to move to Brisbane and attend the Glenleighden School in Figtree Pocket. This is a world-leading school, particularly in this field, and provides world-class PLD education through a combination of methods. Deborah told me that Cooper is very happy at the school and is getting a great education—although the family have had to make some financial sacrifices, as you can imagine, in uprooting their family from Townsville to Brisbane and taking care of all the special needs that their son Cooper has. Deborah wants her sons to have the same opportunities as the rest of us want for our children. Deborah and Justin tell me that people with PLD are more likely to enter the justice system, are at risk of long-term unemployment, have a higher incidence of mental health issues and are at risk of poverty and homelessness.

There is a lot more that we could do, and I think there are many things that we are actually doing now. Because this is a complex issue and not well understood in the community, there are often myths about what is happening. Unfortunately, it does come down to levels of funding and who provides what, where and how.

This government has a number of programs. One in particular is the More Support for Students with a Disability funding program, which provides $200 million in additional government funding to government and independent schools over last year and this year. As part of this funding $2.7 million was provided to the Queensland Association of Independent Schools and the Queensland Association of Independent Schools provided part of these funds to Glenleighden School specifically for this type of special benefit and training. The federal government also provides recurrent funding to Glenleighden School. In 2010 that funding totalled $853,000, or a bit over $12,000 per student. This has increased since then.

There is more good news. The Gonski review provided some very specific measures. Other people have spoken about this in different areas. Gonski identified that there was no consistent approach, there was a real mismatch between what happens at different levels. There is a better way and Gonski provides that mechanism. There is also limited and inconsistent data on the number and location of students with disabilities. It is important that we actually know this so that we can fund it properly. On 7 December last year all school education ministers gave provisional endorsement to a model for a nationally consistent collection of data on school students with a disability. This model moves away from an approach based on identification and support of students according to particular types of disabilities, and instead the model encompasses all disabilities and is focused on the level of adjustment provided for a student to access and participate in schooling on the same basis as those without a disability. It takes away that problem of whether one particular condition is in or out as part of this debate. Students will be included in the data if they have a condition, including a language disorder, which results in the person having a learning difficulty. This is an important part of the change that this government is bringing forward.

Unfortunately school funding from the state has been cut to this school. I know that has been acknowledged from the other side. I do not want to make a political issue of it but just state the fact that it has been cut. There was a promise from the previous government to increase funding from 22 to 40 per cent. It reached 29 per cent but that has now been a cut. I do not accept that school funding should be cut, but if there is one area where it definitely should not it is particularly in the provision of education for students with disabilities.

There are questions about what we are doing about this and I think they are fair questions. But there are answers. It is not as if this government is sitting on its hands on this very important issue. This government is committed to improving the lives of Australians with disabilities and under Australia’s fragmented disability services system, which is highly complex, many people cannot get the sort of support that they need. This should not continue and we want to change it.

In recognition of this the Gillard government have already significantly expanded the support services we provide for children with a disability. In 2008 we assisted more than 25,000 children with a disability to access early intervention services throughout our Better Start for Children with Disability and Helping Children with Autism programs specifically. This debate tonight gives me the opportunity to provide a little more information about this particular program and how it relates to primary language disorder. It is claimed that perhaps the government made an administrative change in regard to PLD in terms of access to Better Start and that this was somehow removed. The Department of Families, Housing, Community Services and Indigenous Affairs, which administers the Better Start program, has confirmed to me that PLD was never included as an eligible condition under Better Start. We cannot have changed because it was never in. Individual children with multiple diagnoses including PLD may have been included under Better Start but not on the basis of having PLD alone. It is important to get these things clear because that has an impact in terms of where funding is understood to have come from. It is also claimed that the government classified a condition known as pervasive developmental disorder not otherwise specified as an autism spectrum condition. This is not correct. The department has confirmed that the government do not set the definition the definition of autism in Australia; in fact, we use a diagnostic tool developed in the United States.

We know that despite progress we have had through these programs like Better Start there are still gaps and still inconsistencies. We need to continue to bridge those gaps and to rectify those inconsistencies because it is the right thing to do regardless of funding levels and models and whatever else may be out there.

These gaps and inconsistencies do affect people with primary language disorder. We know there is a better way to identify them—which is what we did, beginning last year—and to meet the needs of children and other people with significant disabilities. That is why we are leading the way to reform Australia’s disability system through the National Disability Insurance Scheme, widely known as the NDIS—a massive undertaking by Australia, by this government, for a fair, constructive and progressive way forward to deal with the issues and take a more holistic approach.

A person’s eligibility for the NDIS is not based solely on a diagnosis of their disability, because we recognise that that does not meet everyone’s needs—just as, when it comes to issues such as autism, primary language disorder or other things, it is not the government that sets what is in or out; we work to frameworks and models, and that is obviously done at other levels by experts. The government’s role is to make sure that people are not disadvantaged by the system—that the system actually helps, aids and supports them and provides the funding to the right people. I believe support should go to young people, particularly those with primary language disorder. It should help those parents who are doing everything they can in their struggle to make sure that their children have the same opportunities that everyone else’s children have.

That is why I am very much in support of the motion put forward by the member for Ryan, because I think she raises a really good issue, and I know she is very genuine about bringing this forward. It is a school in her electorate, but I am very supportive and I think she will find that she has lots of support on the government’s side and that, if we work together on this, and try to find where the problems sit, we can find solutions. So I am very supportive of the motion—that is why I wanted to speak on it—and also very encouraging of the parents who work so hard to make sure that their children get a fair go.

Mr TUDGE (Aston) (19:57): It is with great pleasure that I second the motion put forward by the member for Ryan which highlights the issue of primary language disorder and, most importantly, calls for a review of the Better Start for Children with Disability initiative to potentially include primary language disorder in the list of categories which that initiative funds. I also commend the member for Oxley on his fine words just before me in providing very strong support for this motion.

Primary language disorder is in many ways a hidden condition that can have a significant impact on a child’s ability to learn and engage. It is not easy to detect and therefore can sometimes go unnoticed. However, it is widespread and is said to affect a very high proportion of Australian school children. Some studies have suggested that as many as one in 14 Australian school children are affected by primary language disorder in some capacity. Clearly, there is a spectrum—from those who have very severe primary language disorder and struggle to communicate at all to those who just have difficulties communicating but can still, nevertheless, communicate some language to others. So the proportion of people who are potentially suffering obviously means that this disorder is having a significant impact on a large part of Australian society.

The disorder itself causes speech and language skills to be impaired. Therefore, a child with this condition has trouble expressing themselves—what they are thinking and how they are feeling. They also have difficulty in understanding when others are communicating with them. While this can seem fairly innocuous, it can actually have a severe impact on a child’s growth and development, both academically and socially.

What assistance is there to support these children who suffer from this disorder? Sadly, there is no consistent assistance which applies across Australia to help such children but, as the member for Ryan highlighted, there is at least one school in Australia, the Glenleighden School, which does amazing work in this area. It caters for people who have severe primary language disorder. It does, as the member for Ryan pointed out, amazing things and ensures that those kids, after a couple of years, can move into a mainstream school and adequately cope there, socialise and develop fully just as any other kid can do. I commend the school on their fine work and on their commitment to raising awareness of this disorder around the nation.

However, I also believe that we must look at other ways of providing support to parents and schools catering for students who suffer from this condition. I strongly believe that the government must, where it can, provide assistance to those suffering generally from a disability including from the disability at question here. I understand there are so many needs which compete for funding. I generally think we need to provide more money overall for kids who have learning difficulties or disabilities generally. I think that funding needs to not only go to kids at government schools but equally go to kids at Catholic and independent schools; it should not matter which school you attend.

The Better Start for Children with Disability initiative is a good program which does provide funding for kids who do have disabilities. However, there is only a short list of disabilities which make the grade for this program such as Down’s syndrome, cerebral palsy, and hearing and vision impairment. I by no means would like to see the funding for those disabilities reduced but I would like to see a review of this program with a view to expanding it and potentially incorporating primary language disorder in the list which it may be able to fund in the future. That is in essence the nature of the motion in front of us. The motion calls for a review to take a proper look at this particular initiative, assesses its adequacy and also determine whether or not primary language disorder should be incorporated in the list of disabilities which should be funded under that program.

I congratulate the member for Ryan for moving this motion this evening. Again, I congratulate the member for Oxley, the speakers on the other side of the chamber and also those who have brought this issue to our attention. (Time expired)

Ms LIVERMORE (Capricornia) (20:02): Like my fellow speakers in this debate, I am very pleased to be speaking to this motion tonight. I join with them in thanking the member for Ryan for bringing this motion before the House and for giving members the opportunity to learn more about primary language disorder. It gives us a chance to develop a better understanding of how children and adults with this disorder—and it is a lifelong disorder—and the people who love and care for them can be helped and supported. It is not unusual for private members’ motions in the House to discuss various diseases and disorders that our constituents are struggling with and to call attention to their plight and the need for more research or more funding to save or improve lives.

The subject of tonight’s debate, primary language disorder, is particularly deserving of our attention because it is otherwise so hidden from mainstream view, adding to the hardship of families who are trying to make sense of it and do the best for their child. The Sunday Mail in Queensland published an excellent article on primary language disorder a couple of years ago. It described primary language disorder as being insidious. It is hidden because primary language disorder children look no different to any other child. It is not well understood and is often difficult to diagnose or is misdiagnosed altogether, adding to the frustration and heartache of parents who are dealing with children with this disorder. It is also one of those things that can take a long time for parents to pick up on themselves and to start that journey of trying to find a diagnosis. So it can be some time before children receive any kind of treatment or intervention for PLD. It is often mistaken for developmental delay, autism or some form of intellectual or physical disability. In fact it is none of those things; it is a language disorder pure and simple.

People with primary language disorder have a serious disability with speech and language but this is not accompanied by other sensory disorders like deafness. As was explained by the parent of a child with primary language disorder in the feature article in Queensland’s Sunday Mail, it is like the person with PLD is in a foreign country where they cannot understand what is being said and do not have the ability to speak or communicate in a way that can be understood by others. To add to the puzzle facing sufferers and their parents and carers, the disorder manifests itself in a wide range of different ways, leading to the difficulty of pinpointing the diagnosis. It affects talking and comprehension, and how people make sense of the words that they hear. It affects concentration, writing, even balance and coordination, motor skills, problem solving, and, in some cases, people’s senses are heightened. Whatever form it takes, it is very easy for us to comprehend how profound the consequences are for a child’s social and educational development, behaviour, happiness and the ability to function at school or in society.

What parents are looking for first, is an answer—a correct diagnosis, so that they can understand what their child is going through. Then, they can work towards finding the treatment and intervention that will make a difference. I am pleased to say—and it is actually highlighted in the member for Ryan’s motion—that many parents in Queensland have been able to find an answer and do have their children on the right path to engagement, to learning and to finding a way to make sense of the world even while they are suffering from Primary Language Disorder. That is because those children are enrolled at the Glenleighden School, in the western suburbs of Brisbane. It has a unique and, in fact, world recognised methodology of looking at students in a very holistic way. It has different experts, including experts in physiotherapy, psychology, occupational therapy, speech pathology et cetera. They are looking at how to unlock the key to language and comprehension for these students. Parents at the school have described the miracles being performed for their children.

I want to quickly pick up on the point that the member for Ryan makes in her motion, and that other speakers have talked to, about how to get more help for sufferers of Primary Language Disorder. I would like to point out that two of the initiatives that we are debating in the House this week—the Gonski reforms of education funding, and also the NDIS—really do look at new ways of dealing with these things. They are not looking at the definition of a disability, but, in fact, what treatment or what support is required to overcome the disability. (Time expired)

Ms O’DWYER (Higgins) (20:07): I am very pleased to stand in support of this motion put forward by my good friend and colleague the member for Ryan and seconded by my other good friend and colleague the member for Aston, and I join with those across the chamber here tonight to commend the member for Ryan for bringing forward this motion to the House.

Primary Language Disorder is a developmental disorder that affects many children across Australia. Children with PLD, as it is known, do not develop the ability to use or understand spoken or written language at the same rate as their peers. By 12 months of age, a child without PLD would be saying their first words such as ‘mama’ and ‘dada’. However, sufferers of PLD may not be able to say their first words until they are three years of age. This has several negative implications on the child’s development, and children with PLD often experience learning difficulties, social isolation, and behavioural problems. In some cases, PLD can affect the child’s coordination and fine motor movements.

While there is no cure for PLD, it has been shown that early intervention greatly improves the child’s ability to communicate and interact with others. If sufferers of PLD do not receive the early attention they require, their speech or language disability impairment may become more profound and have a serious impact on their ability to learn and interact with others in the years to come.

This often makes mainstream schooling difficult, and very frustrating not only for the child but also for their family, as adequate assistance is not always available. Despite the impact that PLD has on a child’s ability to learn and interact with others, sufferers are not eligible for additional funding under the government’s Better Start for Children with a Disability program. The Better Start initiative provides funding to children who have been diagnosed with one of 13 specific disability types prior to their sixth birthday, and this is not one of them.

As the member for Ryan has pointed out, in her electorate there is some hope for parents who have children suffering with PLD: the Glenleighden School in Brisbane, which has been teaching children with PLD for the past 30 years. In my own electorate of Higgins, for more than 39 years the Currajong School has offered specialist support for students with spectrum disorder associated with social and behavioural problems. Currajong has a specialist support staff that includes a psychologist, a speech pathologist and an occupational therapist, all of whom work closely with teaching staff to ensure the best outcomes for each student. Every student has learning or behavioural goals that the staff and family work toward achieving. I have visited the school and seen the very dramatic impact that a specialist learning environment can have on children with behavioural and social issues and with such learning difficulties as PLD. I have sat with parents who have told me how these schools have helped their children to achieve their educational and personal potential.

There are significant problems, as we all know, with disability funding. We know that disability funding is different in each and every state. The hope that somehow disability funding will be solved by the Gonski recommendations is just that—a hope. We have no detail currently as to how it might apply. The coalition’s policy at the last election was to have an education card that would not discriminate between children who went to a government school and those who went to an independent school. The funding would follow the student so that parents could have choice as to where they sent their child to school to ensure that it was the best possible environment for them. We on this side want a learning environment where it is possible for children with PLD and other issues to receive targeted assistance for their conditions not only at school but in the years beyond that and for parents to receive the right and appropriate support. I commend the motion that the member for Ryan has brought before this House. It is a critically important issue.

Mr LYONS (Bass) (20:12): I am pleased to rise in the House today to speak on the motion proposed by the member for Ryan on primary language disorder. This is an important issue, and I wish to share with the House some recent findings. Tasmanian researcher Belinda Jessup of the Tasmanian Department of Education last year completed her PhD on primary language disorder. She found that 41.2 per cent of Bass prep pupils have some form of the disorder; that 18.2 per cent of the general school population in Bass have this disorder; that primary language disorder has no obvious genetic cause, nor is it socioeconomic; and that it is demonstrated in kinder and prep as children not having comprehension and language skills. Belinda also found that primary language disorder leads to low self-confidence, low self-esteem, bad behaviour issues, antisocial issues and trouble with the law. It is more frequent in boys. It is clear that this is a problem, and I commend Belinda for her efforts and interest in this important area. Other research shows that early intervention through speech pathology is critical.

The St Giles society is Tasmania’s largest provider of public speech pathology and it is a fantastic organisation. St Giles was founded in 1937 as a response to the polio epidemic. The organisation has since truly flourished through two polio outbreaks and the deinstitutionalisation of children’s disability services, and it is evolving to meet the current disability reforms towards the provision of the National Disability Insurance Scheme. St Giles, just on Friday night, celebrated 75 years of service to the Tasmanian community. I thank each and every one of its staff and volunteers for the great work they do. St Giles was founded by the community for the community and this underpins everything it does.

This government is committed to improving the lives of Australians with disability, and this is demonstrated by our actions since 2007. St Giles, in Launceston, has certainly been the beneficiary of this commitment, with the federal government providing it with $6.8 million in the 2012-13 budget for paediatric services in Tasmania.

Under Australia’s fragmented disability service systems many people cannot get the support that their families need. The people missing out include children with disability, many of whom can benefit greatly when they get early help in their lives. Supporting kids with disability through early intervention can make a huge difference to their development and gives them the best chance to make the most of their lives. This is particularly the case for children with primary language disorder. My wife’s nephew, in fact, had early intervention and now he is a carpenter working in business and making his way in life.

Since 2008 we have assisted more than 25,000 children with a disability to access early intervention services through the Better Start for Children with Disability program and the Helping Children with Autism Program. So our extra support for children with disability is already making a difference and I am very pleased about that. But we know there are still gaps and there are still inconsistencies. I know this from my time as the business manager at Launceston General Hospital and before that as the manager of Beaconsfield Hospital. We are leading the way to reform Australia’s disability system through the National Disability Insurance Scheme, a true Labor reform in the tradition of Medicare. The coalition had 12 years to act on services for people with a disability and they sat on their hands. They stood by while demand grew for disability services, and disability pensioners struggled with the cost of living. They failed to invest in disability services and they failed to support students with disability. The NDIS is a fundamental change to how we will deliver disability care and support.

Late in November last year I received an email from the mother of girl in my electorate, Mrs Ruth Symons. Ruth’s daughter Katherine has a disability and she shared with me her struggles. Ruth wants the very best for her daughter. She said:

The chance to have consistency of care for Katherine. To be able to take some control of the care that she receives and the care she will need. To not feel threatened by agencies or Service providers for questioning their services or their lack of outcomes. To have a choice and a voice! BUT above all the chance for her to reach her full potential.Our $1 billion investment in launch sites shows how serious we are about the NDIS. How people acquire their disability should not determine their support. I support this motion.


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