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The LifeSpan Project

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Investigating the Mental Health of People with Intellectual Disability across the Lifespan

Chief Investigators

Professor Bruce Tonge, Centre for Developmental Psychiatry & Psychology, Monash University.

Professor Stewart Einfeld, Brain and Mind Research Institute, University of Sydney.

Dr Caroline Mohr, Centre for Developmental Psychiatry & Psychology, Monash University.

Mental illness is 2-3 times more prevalent in people with an intellectual disability (ID) than in the general community. Problems related to mental illness in people with ID frequently causes distress to the individual and their carers, exacerbates their disability, adds to the costs of caring by government and private agencies, as well as disrupting the educational and occupational prospects for the individual .

Unfortunately, mental illness in this population often goes undetected and therefore untreated.  One of the greatest obstacles is that instruments used to assess and assist in diagnosis of mental illness in the general community are not suitable for use with individuals with an ID.

Monash University's Centre for Developmental Psychiatry and Psychology, in conjunction with the University of New South Wales, have been conducting a longitudinal study (Australian Child to Adult Developmental study; ACAD). The study is investigating behavioural and emotional disturbances in a large representative sample of children, adolescents and adults with ID, together with four syndrome cohorts. 

The current study emerged from work conducted on the ACAD project, the internationally unique 15 year follow up study that has led to the development and use of the Developmental Behaviour Checklist (DBC).

The DBC has been translated into 19 languages and is an instrument that is being used within Australia and internationally for the assessment of a broad range of behavioural and emotional disturbances in young people with mild-profound ID.  

The use of two versions of the DBC, the DBC-P (Primary Carer Version) and DBC-T (Teacher Version), has helped to ascertain the prevalence of behavioural and emotional problems amongst young people with ID and identify crucial biopsychosocial factors which predict or protect against the development of mental illness in this population. Both instruments have proven to have robust psychometric properties.  Normative data is available for the total DBC score as well as for each of the five subscales for young people with all levels of ID.  The DBC-P and DBC-T both have standardised norms, allowing the severity of psychopathology for an individual, overall and in the subscales, to be quantitatively compared to their peers.

Due to clinical and research demands, the Chief Investigators developed a new checklist, the Developmental Behavioural Checklist for Adults (DBC-A). This is used to assess behavioural and emotional disturbances in individuals with an ID that are 19 years and over.  The DBC-A is a modified version of the DBC-P, with six instead of five subscales, and robust psychometric properties. Further, distinct groups of items on the DBC-A can indicate the possible presence of a variety of psychiatric disorders such as psychotic illness, mood and anxiety disorders as well as autism. 

Although it is rapidly being adopted by clinicians and researchers, and has already been translated into Dutch, Finish, French and German, the DBC-A will be a more constructive assessment tool of psychopathology when standard norms are available The current project aims to obtain standardisation norms for the DBC-A (total and subscale scores) for adults with all levels of ID.  

DBC-A data will be collected from a representative sample of adults from the age of 16 years with an ID who live in South Australia.  In addition, the study will also provide vital information regarding the mental health status of those adults with an ID, including the prevalence and nature of mental illness in this population across the lifespan, and also present us with the opportunity to study mental health problems and needs amongst specific groups, such as indigenous Australians and ageing individuals.

An additional aim of the current study is to investigate mental health problems in late adolescents with an ID in their transition from school life into adult services. The collection of data from older adolescents (16 years+) with ID has been made possible by collaborating with the Department of Education and Children services (DECS).

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The current project has received funding from the Australian Research Council (ARC) for three years (2005-2008).   Additional support and funding is provided by three Industry Partners: The Intellectual Disability Services Council (IDSC), (now Disability SA) Minda Inc and The Department of Education and Children Services (DECS). These industry partners will provide the study with assistance in identifying, locating and contacting individuals on their register with an ID.   

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Additional funding has also been provided by the APEX Foundation for Research into Intellectual Disability, a volunteer based association that offers community services and support to those with special needs.

 

For updates on the current progress of the project please refer to our LifeSpan Newsletters.