Research concerns regarding intellectual disability services under the NDIS Bill | External submission

SUBMISSION TO THE SENATE INQUIRY ON THE NDIS BILL

Submitted by

The Child Disability Group, Telethon Institute for Child Health Research (TICHR)

Western Australia

Contact: Dr Helen Leonard

The focus of research undertaken by the Telethon Institute’s Child Disability Group is on those disabling conditions that have a pervasive effect on children’s health, development and wellbeing. We have extensive expertise in intellectual disability (especially Down syndrome and Rett syndrome) and autism spectrum disorders.

The association between pre-term birth and long-term neurological disabilities has led to an increasing focus on investigating risk and protective factors for pre-term births towards developing more effective approaches to prevention.

TICHR’s Child Disability Group has:

maintained and analysed data from the population-based intellectual disability (IDEA) database in Western Australia since 2003;
established, maintained and analysed data from the Rett syndrome population database in Australia (AussieRett) since 1993;
maintained an international database (InterRett) since 2002; and
collected and analysed data on a population cohort of young people with Down syndrome born from 1980 onwards.

Major research projects have included:

population-based epidemiological studies on developmental disorders (intellectual disability, autism, Down syndrome and Rett syndrome);
a longitudinal study of the impact of Down syndrome on health, wellbeing, participation and quality of life of individuals and their families;
studies of the natural history and genetic determinants of rare disorders and of the management of associated health conditions; and
assessment of costs of care associated with intellectual disability syndromes.

Linkage of intellectual disability databases with other major population databases in Western Australia has enabled the identification of associations between complex health and developmental problems and child and family characteristics and outcomes.

OVERVIEW As one of the key research bodies in Australia specialising in the health, development and wellbeing of children and young people with intellectual disability, the Child Disability Group at the Telethon Institute for Child Health Research welcomes the opportunity to contribute to the further development and refinement of Australia’s National Disability Insurance Scheme.

The National Disability Services Scheme Bill appears to be very comprehensive in its current form.

How well it will operate in practice has yet to be tested. Trialling the scheme in designated launch sites will provide an opportunity for careful monitoring of the impact on people with disability, their carers and the service system. No doubt the lessons learned will be incorporated in the legislation eventually drafted for a national roll out.

HOWEVER …

While we welcome the NDIS initiative and the principles and commitments that underpin it, we would be concerned if a priority focus on personal independence, autonomy and individual decision making (as articulated in the objects and principles of the NDIS legislation) meant that the unique issues facing the broader population of people with intellectual disability and their family carers were not afforded sufficient attention and priority in the implementation of the new approach to disability services provision.

Similarly, it is to be hoped that the new, more individualised, approach to disability services provision will be supplemented by measures that also allow for informed consideration, and action, on many of the policy and systemic issues that impact on the health, wellbeing and quality of life of people with intellectual disability and their families (including the possibility of specialist service development, as well as improved service coordination between agencies working in different portfolio areas to address needs more holistically).

According to internationally renowned intellectual disability expert, the late Professor Jim Mansell (2006) the “de-differentiation” of specialist intellectual disability services reflects an international trend that has resulted in “the loss of special, separate policies and service structures for people with intellectual disabilities and their replacement by general policies and structures” (p. 72) .

Mansell argued that while the application of generic models may be suited to other client groups they “inevitably impose constraints based on assumptions that may not be relevant in intellectual disability”. As a consequence, people with intellectual disability were now, not only having to compete with other groups for priority of resources, but the specialist service understanding “of the special issues and problems of intellectual disability” that had previously existed was diminishing.

We share these concerns.

As we highlighted in the inaugural report of the Western Australian Intellectual Disability Database (2004) the areas of functional limitation associated with intellectual disability exert a pervasive

influence on the person’s ability to meet the everyday demands of their physical or social environment.

“People with an intellectual disability have difficulties with thought processes, learning, communicating, remembering information and using it appropriately, making judgements and problem solving” (Western Australian Intellectual Disability Database, 2004, p.5).

Significantly, the AIHW (2012) reported that 24.4% of disability service users with a primary intellectual disability and 26.7% of service users with autism had “little or no effective communication”.

Limitations in the capacity to communicate effectively would obviously also impact on the development of participants’ plans which are “directed by the participant” as proposed under the NDIS bill.

A bulletin on intellectual disability published by the Australian Institute of Health and Welfare in 2008 commented on the special issues and challenges faced by people with intellectual disability relative to people with other disabling conditions.

“People with intellectual disability encounter special challenges that are different from people with other types of disabilities in a number of important aspects. For example, they have difficulty learning and applying knowledge and in decision making. They may have difficulty identifying and choosing options at key life transition points. They often have difficulty adjusting to changed circumstances and unfamiliar environments and therefore need high support during times of change” (AIHW 2008, p.1).

Recognising that all disabilities present their own unique challenges, the lifelong need for at least some level of guidance and supervision to compensate for the consequences of limited cognitive and adaptive capacity distinguishes people with intellectual disability from those with other disabling conditions.

We suggest that a different set of dynamics may also apply in the relationship between people with intellectual disability and their parent carers, where parents typically provide the required guidance and supervision well beyond the age when most other people would tolerate parental oversight and control.

Drawing on data from the 2003 ABS Survey of Disability, Ageing and Carers, the AIHW Bulletin reported that many people with intellectual disability had multiple impairments:

57% of people with intellectual disability aged under 65 years also had a psychiatric disability
Just under half of those with intellectual disability also had physical /diverse disability. “The high prevalence of psychiatric disability and speech problems among people with intellectual disability is associated with the high proportion of people in this group who have difficulty communicating and fitting in socially. These disabilities may mean that people often have difficulty adjusting to changed circumstances and unfamiliar environments. These restrictions affect their participation in education and employment” (AIHW 2008, p.12).

If evidence-informed disability policies are to be developed and effectively implemented, and if support services tailored and delivered to meet client needs, we argue that these differences need to be taken account of both in policy-making and in service delivery.

1.1. People with intellectual disability in a “whole of disability” service framework

Our research confirms that many children and young adults with intellectual disability are currently not receiving the support and services they need to:

achieve their developmental potential (based on continuing opportunities, and support, for learning, and applying, a range of skills that will enable them to lead a healthier and personally fulfilling life appropriate to different stages of their life)
build happy and healthy interpersonal relationships (including and beyond their immediate family carers and paid support workers)
participate purposefully and constructively in community life (both social and economic life). In the absence of needed services, the health and quality of life of family carers is also being severely compromised. For example, our research shows that mothers of children with Down syndrome experience poorer mental health than the general population that was associated with their child’s behaviour, health and level of independence in functioning (Bourke et al, 2008).

We note that under the “whole of disability” approach to service provision characterising the former

Commonwealth States and Territories Disability Agreement and the National Disability Agreement,

the proportion of people accessing specialist disability services who have an intellectual disability has been steadily declining, suggesting that much of the recent growth in service usage is coming from people with disabling conditions other than intellectual disability.

According to the Productivity Commission Report on Government Services (2012), in the seven years between 2003-04 and 2009-10:

the total number of service users increased by 57.6% (from 179,162 to 282,293). However:
the number of service users who reported intellectual disability as their primary disability increased by only 17% (from 71,600 to 83,841), while the number of service users reporting intellectual disability amongst a number of disabling conditions increased by 21% (from 83,489 to 101,625).

With respect to employment services funded and/or provided through the Australian Government: the total number of service users accessing employment services increased by 84.8% (from 64,281 to 118,801)

However:

the number of people with a primary intellectual disability accessing employment services remained static, increasing by only 0.44% (from 26,612 to 26,730)

the number of people reporting intellectual disability among a range of other disabling conditions accessing employment services increased by 7.9% (from 29,504 to 31,839).

The proportion of people with intellectual disability accessing specialist disability services relative to the total number of service users has also steadily declined.

In 2003-04:

40% of the total 179,162 service users had a primary intellectual disability and 46.6% reported intellectual disability among a range of disabling conditions.

In 2009-10:

the proportion of service users with a primary intellectual disability had dropped by more than 10% to 29.7% while the number reporting intellectual disability as one of their disabling conditions had dropped to 36%.

According to the AIHW (2012) these declining trends of service usage by people with intellectual disability continued into 2010-11 when the proportion of service users with a primary intellectual disability dropped still further to 27.6% of the total 314,252 service users for the year.

The AIHW also reported on the proportion of service users with different disabling conditions in open employment and those in supported employment in 2010-11:

12% of the 107,368 people with disability in open employment had an intellectual disability
69.4% of the 21,568 people in supported employment had an intellectual disability. The lower representation of people with intellectual disability in open employment is of concern, particularly as our research shows that participation in open employment not only benefits the person with intellectual disability (in this case people with Down syndrome), but it also has a positive impact on the quality of life of their family carers.

Data cited in the AIHW bulletin on intellectual disability(2008) confirmed that the high levels of unmet demand for specialist disability services under previous disability service frameworks have been impacting disproportionately on the lives of people with intellectual disability and their family carers.

Of the 26,700 Australians with disability estimated to have an unmet demand for accommodation and respite services in 2008, 85% (or 22,800) had an intellectual disability (AIHW 2008).

Based on figures from the 2003 ABS Survey of Disability, Ageing and Carers, the AIHW calculated that as many as:

17,700 people with intellectual disability had an unmet demand for assistance from employment services
10,300 people with intellectual disability had an unmet demand for community access services.

Many of these people had multiple disabilities.

In addition, our own research indicates that many people with intellectual disability are not registered with the formal disability services system and are therefore not receiving any support from it.

As of 2008, details of 9517 Western Australians born since 1983 with intellectual disability were recorded on Western Australia’s intellectual disability population database. Of that number, only 60% were registered for services with the Disability Services Commission.

However, a substantial 3689 cases ascertained through the Education Department, were not registered with the Commission. Many of these “unregistered cases” were Aboriginal children most of whom had a mild-moderate intellectual disability.

These data reinforce the need to carefully monitor the differential impact of disability policies and service trends on people with different disabling conditions, and most particularly on people with intellectual disability. Differences in impact according to racial background, different levels of intellectual disability and other demographic characteristics also need to be monitored.

1.2. This submission

This submission cites the findings of some of our more recent research (as well as other relevant research) to support our case that, as well as focusing on the needs of individuals, the implementation of the National Disability Insurance Scheme needs to take account of the special needs and challenges faced by people with intellectual disability and their family carers at a population level.

In line with this principle, we have also made specific comment on selected items in the legislation which we consider may not adequately represent, or advance, the best interests of people living with intellectual disability.

We would be happy to provide further information to the Senate inquiry if required.

RELEVANT RESEARCH 2.1. Population-based research (the WA Intellectual Disability Database)

In Western Australia, demographic and medical information on people with intellectual disability has been systematically collected by the formal service system since 1953. The long term nature of this data collection has not only enabled trends to be monitored over time, but also provided a rich source of information for studies into the characteristics and support needs of the population of Western Australians with intellectual disability.

In 2003, management of the WA Intellectual Disability Database was transferred to the Telethon

Institute  for  Child  Health Research  enabling  ascertainment from  multiple  sources and an

infrastructure for the data to be linked with other population databases. Research studies accessing the IDEA database thereby provide a more complete picture of the impact of intellectual disability on people’s lives, together with the support needs, and system requirements that may flow from these impacts.

While acknowledging that people with intellectual disability are not a homogonous group, as stated in the inaugural report of the intellectual disability database, we maintain that:

“...the planning of services for people with  intellectual  disability can be more

accurately determined when based on whole of population estimates” (Leonard et al,

p. 4). Listed below are a selection of studies that have sourced data from the WA intellectual disability database to provide an insight into the impact of intellectual disability on people’s lives, and the support and service needs that may result from the needs and impacts identified.

These studies reinforce the broad range of supports required by people with intellectual disability to lead a quality life as part of the community, as well as the supports required by family carers to manage some of the stresses associated with providing for their children’s needed care and support. These supports extend beyond specialist disability service provision and highlight the importance of joined up services across portfolio areas of responsibility to ensure people’s needs are adequately met.

Life expectancy

Bittles et al (2002) investigated how the life expectancy of people with intellectual disability had changed over time. The study found that the mean age of Western Australians with intellectual disability (referred to and registered with the Government service provider) had more than trebled in the close on 50 years from 1953 to 2000 (from a mean age of 11.2 years in 1953 to 32 years by 2000).

The authors noted that as people with intellectual disability moved into middle age they were also more likely to have a range of other health problems than people who do not have an intellectual disability including:

a greater tendency towards obesity and decreased physical fitness;
an increased predisposition to psychiatric problems; and
an increased risk of health conditions and challenges such as osteoporosis, thyroid disorders, nonischaemic heart disease and early onset dementia.

“With this in mind, the results of the present study should prove useful in evaluating the future health, residential and care needs of this significant sector of the population, especially because substantial increases in life expectancy are occurring across the spectrum of ID severity” (p. M471).

Birth defects

Petterson et al (2005) linked data from the WA Intellectual Disability Database with the Western Australian Maternal and Child Health Database to examine the co-occurrence of birth defects and intellectual disability. The linked data show that birth defects were present in 30% of children with intellectual disability who survived to one year of age, with even higher rates present in children with more severe intellectual disability (54%).

The co-occurrence of birth defects and intellectual disability suggests higher health care needs (and potentially personal and family care needs) for this group of children.

The authors commented on the relevance of the study for future service planning:

“The data are useful for those providing services for children with developmental disabilities especially for predicting family support and accommodation and respite requirements for children and adults with severe ID” (p. 65).

Admission to hospital

Williams et al (2005) linked data from the WA Intellectual Disability Database with data from the WA Midwives Collection and the WA Hospital Morbidity Dataset to explore the likelihood of children with intellectual disability being admitted to hospital in the first five years of life compared to those who did not have an intellectual disability.

The study found that, not only were Western Australian children with intellectual disability almost twice as likely to be admitted to hospital in their first five years of life than children without intellectual disability (79% compared to 48%), they were admitted four times more frequently (4.2 admissions compared to 1.1 admissions) and for close on three times as long (an average of 29.6 days for children with intellectual disability compared to 8.3 days for children who did not have an intellectual disability). The average number of days spent in hospital in the first five years was even higher for those with a medically diagnosed intellectual disability (45.3 days) and higher still for children with severe intellectual disability (50 days).

Our more recent study on hospitalisations (Bebbington et al, in press) has indicated that the likelihood of hospitalisation varies according to level of intellectual disability and presence of autism. Children with an intellectual disability or autism experience an increased risk of hospitalisation varying from two (for those with autism) to ten times (for those with severe intellectual disability) that of the rest of the population.

Frequent hospitalisations can be particularly traumatic for people with intellectual disability and autism, especially if the person lacks the cognitive capacity to understand what is happening to them and why, and/or cannot communicate their physical discomfort or their feelings about the experience. This can compound the stresses experienced by family carers in dealing with their child’s need for hospital treatment

Referring to the international trend towards a so-called “de-medicalisation of intellectual disability which the authors claim has led to “a universal trend away from the provision of clinical services for these children”, the results of the data analysis:

“… clearly show that children with ID have substantial medical needs that culminate in higher risk of hospitalisation for a variety of clinical diagnoses in the first five years of their life. The impact of these admissions most likely not only impact on the welfare of the affected children but also on the rest of their immediate and extended families” (p. 1247).

Susceptibility to psychiatric illness

Morgan et al, 2008 investigated the high level of psychiatric illness co-existing in people with intellectual disability. The study linked data from the WA Mental Health Information System with the Intellectual Disability Register to show that close to one third of people with intellectual disability (31.7%) also had a psychiatric disorder which the authors report is probably an under estimate.1

The authors commented on the increased challenges facing people with intellectual disability and their family carers when a psychiatric condition was also present:

“Both intellectual disability and severe psychiatric illness result in serious and lifelong impairments. When the two co-occur, the impact of burden of disease on affected individuals, their carers, their family and friends, and the services that provide for them is particularly high” (p. 370).

Risk of abuse

A population-based study on substantiated child maltreatment cases in Western Australia (O’Donnell et al, 2010) found that one of the strongest child-related factors to substantiated allegations of maltreatment was that the child had an intellectual disability (increasing the risk of substantiation by a factor of three).

“This implicates the need for early identification of disabilities in children, support for families and interventions to improve the functioning of disabled children. Research indicates that respite care for families with a child with a disability is an important factor in reducing child protection risk. This should not only consist of crisis respite care, but also planned respite to ensure the reduction of ongoing stress that may be experienced by a family who have a child with a disability” (p. 926).

1 AIHW (2008) reported that 57% of Australians with intellectual disability under the age of 65 also experienced psychiatric disability increasing to 62% of people with a severe or profound limitation. However, an analysis of the literature on the prevalence of psychiatric disorders among people with intellectual disabilities (Whitaker & Read, 2005) suggests there may be differences in prevalence according to the severity of the intellectual disability, and that associated psychiatric problems may be less of an issue for people with mild intellectual disability.

1.2. Other Australian research on the special challenges faced by people with intellectual disability

Mental disorders

A systematic literature review of the co-morbidity of intellectual disability and mental disorders in children and adolescents conducted by Australian researchers Stewart Einfeld and Louise Ellis from the University of Sydney in association with Eric Emerson from Lancaster University in the UK (Einfeld et al, 2011), concluded that between 30% and 50% of children and adolescents with intellectual disability also have a mental disorder (where the authors considered psychiatric disorder, mental illness, and serious psychopathology to be synonymous).

The authors comment that the findings of their review highlight the need for:

an increase in public health interventions aimed specifically at reducing the prevalence of mental disorder among people with intellectual disability;
greater capacity in mental health services to identify mental disorder in people with intellectual disability as well as greater capacity to provide targeted support accordingly; and
better design of intellectual disability services “in recognition that a substantial proportion of their clientele will have significant mental disorder” (p. 142).

Risk of injury

Another Australian study on the injury rates experienced by young people with intellectual disability relative to the general population found that that “this group has an eight times excess injury mortality and double the injury morbidity of their counterparts in the general Australian population” (Sherrard et al, 2001, p.60).

The authors commented on the implications of their findings for the health care system and for parents of young people with intellectual disability:

“… parents require substantial information, advice and guidance for injury prevention … because of the deinstitutionalisation of this population which has transferred the enormous responsibility for daily routine care and possible injury care onto parents” (p. 61).

Emotional and behavioural problems

The relationship between intellectual disability and a range of behavioural problems has been widely explored in the research literature.

In an Australian study, (Einfeld & Tonge, 2006) reported that 41% of children aged 4-18 could be classified as having severe emotional or behavioural disorder (or as a being psychiatrically disordered).

Despite the reported high incidence of severe emotional and behavioural problems among children with intellectual disability, the study found that only a small proportion (10%) of children with intellectual disability who had major, co-existing behavioural, emotional or psychiatric disorders were in receipt of specialist assistance to deal with the issues arising from the compounding of problems arising from these co-morbidities.

A subsequent study also involving the authors cited above (Forster et al, 2011) reported that a further distinction needed to be made between emotional and behavioural problems reported between people with severe intellectual disability and those classified as having a profound intellectual disability where people with profound intellectual disability displayed less disruptive behaviours than those with a severe intellectual disability.

The authors recommended that caution should be exercised when combining the people with severe intellectual disability and people with a profound intellectual disability into a single category for research purposes.

THE PROVISIONS OF THE NDIS BILL We applaud the proposed legislative principles and the rights set out in them in the NDIS Bill. However we note that they are not dissimilar to the principles already incorporated into Disability Services legislation in the different Australian jurisdictions which, sadly, have failed to provide any guarantee of service provision to fulfil the rights articulated.

It is to be hoped that the NDIS will provide a stronger basis for the nominated “rights” to become a reality as well as providing an opportunity for redress when the principles are not applied in practice or reflective of the lived experience of people with disability and their family carers.

As we stated earlier in this submission, it is difficult to predict the impact of many of the provisions until they have been tested in practice.

Nevertheless, we believe the legislation needs to be more explicit as to how the new approach to disability service provision will address some of the systemic issues that impact on the quality of life of people with different disability conditions, and especially those with limited cognitive and adaptive capacity.

We maintain that the involvement of family carers in the lives of their family member with intellectual disability is qualitatively different than it is for people with other disabling conditions requiring a much more intense and enduring lifelong commitment in the provision of guidance, supervision, and often protection, as well as meeting the person’s personal care requirements.

As such, we believe that disability services legislation also needs to provide some assurance on the rights of family carers including their right to supports that will also enable them to lead a decent quality of life.

Monitoring the impact of the new approach to disability services provision on people with different disabling conditions and their family carers will require the collection and analysis of disability specific population data across a range of indicators and service areas.

In line with these general principles and concerns, the comments below relate to specific provisions in the legislation.

Objects and principles (p. 4):

The need for people with disability to receive supports that will enable them to lead a decent or reasonable “quality of life” should also be explicitly stated, rather than limiting these supports to those that will enable people “to participate in and contribute to social and economic life to the extent of their ability” (Principle 2)
The terms “reasonable and necessary” as applied to the provision of supports appears to be too vague and capable of broad interpretation. An explanation of what is considered to be “reasonable” may provide greater certainty and assurance that needs will be met (Principle 5)
The principles make specific mention of early intervention supports. There may also be value in making reference to measures that may prevent disability in the first place
While reference is made to acknowledging and respecting the role of family carers, no mention is made of the “rights” family carers, including their right to supports that will enable them to lead a reasonable quality of life. We believe there should be.

Participants and their plans (p. 25)

The disability service access requirements specify that the person must have a “substantially reduced functional capacity”. People classified as having a mild intellectual disability may not be assessed as having a substantially reduced capacity. However, due to the limitations they experience in “making judgements and problem solving, they may still require support to participate constructively in community life. In this respect, it is of concern that an estimated 20% of the prison population in NSW has an intellectual disability (NSW Law

Reform Commission, 2010)

Specific mention is made of ”early intervention requirements” to “mitigate, alleviate or prevent the deterioration of the functional capacity of the person”. While we acknowledge the value of early intervention, it is important to also acknowledge that people with intellectual disability require ongoing developmental opportunities to acquire and maintain their skills and “prevent the deterioration of functional capacity”.

Principles relating to participants’ plans (p. 30)

Principe (e) states that participants’ plans should “consider the availability to the participant of informal support services generally available to any person in the community” (emphasis added). We are concerned that this principle should not be construed as an expectation that family carers will provide lifelong support at a level that compromises their own quality of life or used as an excuse not to provide formal support (as occurs under current system)
Statements on the rights of the person to “exercise control” over their life and “maximise choices” may not be relevant/appropriate to a significant proportion of people with intellectual disability who lack the capacity to make reasoned judgements, solve problems and/or communicate their needs.

Matters that must be included in a participant’s plan (p. 31)

The requirement that the participant’ plan must include a statement of the participant’s goals, objectives and aspirations is again problematic for many people with intellectual disability particularly those who have no effective means of communication. In such cases, the person’s goals, objectives and aspirations can only be construed by others who are closely involved in their lives.

Reasonable and necessary supports (p.33)

Greater clarity is required on what constitutes “reasonable and necessary”.
The focus on supports that “assist the participant to undertake activities, so as to broaden the participant’s social and economic participation needs to be broadened to also encompass “enhancing the participant’s quality of life”
The statement “the funding or provision of the support takes account of what it is reasonable to expect families, carers, informal networks and the community to provide” does not make clear as to what constitutes a “reasonable” expectation of support provided by families, carers, informal networks and the community. Nor is it clear as to whether supports will be provided, if the groups nominated above fail to provide the required support however reasonable the expectation that they should do so.

Managing the funding for supports under participants’ plans (choice for the participant in relation to plan management (p. 38)

Self-management assumes that the person is capable of managing the funds. A person with intellectual disability may want to manage their own plan but lack the capacity.

Administration (p. 45)

Many of the administrative requirements assume a level of intellectual competence including a strong reliance on literacy skills and competencies. It is likely that most people with intellectual disability will require the appointment of a nominee to manage these requirements on their behalf.

Registered providers of supports (p. 55)

The requirements for registration of providers of support implies that appropriate services are already available or will be developed to meet the needs of people with intellectual disability. It seems likely that new intellectual disability specific services will need to be developed to address the complex needs of this population sub-group. It is unclear as to whether the scheme will have the capacity to encourage and support the development of new, targeted services of specialised services

Nominees (appointment p. 73)

For people with intellectual disability, it is likely that most parents will act as both correspondence nominees and plan nominees. Given the personal nature of this pre existing relationship, the process outlined seems very formal

NDIS Launch Transition Agency (p. 93)

The data collection and research role of the NDIS Launch Transition Agency will be critical in determining whether the new approach is adequately addressing the support needs of people with different disabling conditions as well as people with different demographic characteristics
As well as the Agency’s role to “develop and enhance the disability sector”, there is a need to also ensure that service coordination across sectors is promoted and enhanced eg coordination with child protection, criminal justice, health, community service systems (and others).`

Independent Advisory Council (membership p. 110)

The proposed composition of the Independent Advisory Council does not seem to provide adequate representation to ensure the needs and issues facing people with intellectual disability and their families are addressed (particularly given that the highest proportion of disability service users have an intellectual disability). There is a risk that issues facing people with intellectual disability will be subsumed by more articulate and sophisticated advocates who are better able to argue their case.

REFERENCES

AIHW (2008), Disability in Australia: intellectual disability. Bulletin no. 67. Canberra. AIHW.

AIHW (2012), Disability support services; services provided under the National Disability Agreement 2010-2011, Australian Institute of Health and Welfare, Canberra.

Bebbington A, Glasson E, Bourke J, de Klerk N, Leonard H. Hospitalisation rates for children with intellectual disability or autism born in Western Australia 1983 – 1999: a population-based cohort study. BMJ Open; in press.

Bittles A H, Petterson B A, Sullivan SG, Hussain R, Glasson EJ, Montgomery PD. The influence of intellectual disability on life expectancy. The Journals of Gerontology Series A, Biological Sciences and Medical Sciences 2002; 57A(7): M470-M472.

Bourke J, Ricciardo B, Bebbington A, Aiberti K, Jacoby P, Dyke P, Msall M, Bower C, Leonard H. Physical and mental health in mothers of children with Down syndrome. The Journal of Pediatrics 2008; 153:320-6.

Einfeld SL, Tonge BJ. Population Prevalence of Behavioural and Emotional Disturbance in Children and Adolescents with mental retardation. 2. Epidemiological findings. Journal of Intellectual Disability Research 1996; 40: 99-109.

Einfeld, S, Ellis, LA, Emerson, E. Comorbidity of intellectual disability and mental disorder in children and adolescents: A systematic review. Journal of Intellectual and Developmental Disability 2011; 36(2): 137-143.

Forster S, Gray KM, Taffe J, Einfeld SL,Tonge BJ. Behavioural and emotional problems in people with severe and profound intellectual disability. Journal of Intellectual Disability Research 2011; 55(2): 190-198.

Leonard H, Petterson B, Bourke J, Morgan V, Glasson E, Bower C. Inaugural report of the idEA database - intellectual disability in Western Australia. 2004; Telethon Institute of Child Health Research. Perth. Western Australia.

Mansell J. Deinstitutionalisation and community living: progress, problems and priorities. Journal of Intellectual and Developmental Disability 2006; 31 (2), 65-76.

Morgan VA, Leonard H, Bourke J, Jablensky A. Intellectual disability co-occurring with schizophrenia and other psychiatric illness: population-based study. The British Journal of Psychiatry 2008; 193(5):364-72.

NSW Law Reform Commission. People with cognitive and mental health impairments in the criminal justice system: an overview. 2010; Consultation Paper 5, NSW Government.

O’Donnell M, Nassar N, Leonard H, Jacoby P, Mathews R, Patterson Y, Stanley F. Characteristics of non-Aboriginal and Aboriginal children and families with substantiated child maltreatment: a population-based study. International Journal of Epidemiology 2010;39(3):921-8.

Petterson B, Bourke J, Leonard H, Jacoby P, Bower C. Co-occurrence of birth defects and intellectual disability. Paediatric and Perinatal Epidemiology 2007;21(1):65-75.

SCRGSP (Steering Committee for the Review of Government Services Provision). Report on Government Services 2012: Chapter 14 - Services for people with disability, Productivity

Commission, Canberra

Sherrard J, Tonge BJ, Ozanne-Smith J. Injury in young people with intellectual disability: descriptive epidemiology. Injury Prevention 2001; 7: 56-61.

Williams K, Leonard H, Tursan d’Espaignet E, Colvin L, Slack-Smith L, Stanley F. Hospitalisations from birth to 5 years in a population cohort of Western Australian children with intellectual disability. Archives of Diseases in Childhood 2005; 90(12):1243-8.

ATTACHMENT 1

Recent research publications drawing on data from the Western Australian IDEA database

Petterson B, Leonard H, Bourke J, Sanders R, Chalmers R, Jacoby P, et al. IDEA (Intellectual Disability Exploring Answers): A population based database for intellectual disability in Western Australia. Annals of Human Biology. 2004;32(2):237-43.

Leonard H, Petterson B, De Klerk N, Zubrick SR, Glasson E, Sanders R, et al. Association of sociodemographic characteristics of children with intellectual disability in Western Australia. Social Science and Medicine 2005;60(7):1499-513.

Leonard H, de Klerk N, Bourke J, Bower C. Maternal health in pregnancy and intellectual disability in the offspring: a population-based study. Annals of Epidemiology 2006;16(6):448-54.

Petterson B, Bourke J, Leonard H, Jacoby P, Bower C. Co-occurrence of birth defects and intellectual disability. Paediatric and Perinatal Epidemiology 2007;21(1):65-75.

Leonard H, Nassar N, Bourke J, Blair E, Mulroy S, de Klerk N, et al. Relation between intrauterine growth and subsequent intellectual disability in a ten-year population cohort of children in Western Australia. American Journal of Epidemiology 2008;167(1):103-11.

Nassar N, Dixon G, Bourke J, Bower C, Glasson E, de Klerk N, et al. Autism spectrum disorders in young children: effect of changes in diagnostic practices. International Journal of Epidemiology 2009;38(5):1245-54.

Leonard H, Dixon G, Whitehouse AJO, Bourke J, Aiberti K, Nassar N, et al. Unpacking the complex nature of the autism epidemic. Research in Autism Spectrum Disorders 2010 2010/12//;4(4):548-54.

O’Donnell M, Nassar N, Leonard H, Jacoby P, Mathews R, Patterson Y, et al. Characteristics of non Aboriginal and Aboriginal children and families with substantiated child maltreatment: a population-based study. International Journal of Epidemiology 2010;39(3):921-8.

Dye DE, Brameld KJ, Maxwell S, Goldblatt J, Bower C, Leonard H, et al. The impact of single gene and chromosomal disorders on hospital admissions of children and adolescents: a population-based study. Public Health Genomics 2011;14(3):153-61.

Leonard H, Glasson E, Nassar N, Whitehouse A, Bebbington A, Bourke J, et al. Autism and intellectual disability are differentially related to sociodemographic background at birth. PLoS ONE 2011;6(3):e17875.

Parner E, Thorsen P, Dixon G, Klerk N, Leonard H, Nassar N, et al. A Comparison of Autism

Prevalence Trends in Denmark and Western Australia. Journal of Autism & Developmental

Disorders. 2011;41(12):1601-8.

Langridge AT, Glasson EJ, Nassar N, Jacoby P, Pennell C, Hagan R, Bourke J, Leonard H, Stanley FJ. : Maternal conditions and Perinatal Characteristics Associated with Autism Spectrum Disorder and Intellectual Disability. 2012 PLoS ONE; in press

O’Leary C, Leonard H, Bourke J, D’Antoine H, Bower C. Intellectual disability: population-based estimates of the proportion attributable to heavy prenatal alcohol exposure. 2012, Developmental Medicine and Child Neurology; in press