Jane Prentice (Ryan, Liberal Party) Share this | Hansard source

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.

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