SUBMISSION TO JOINT STANDING COMMITTEE ON NDIS – INDEPENDENT ASSESSMENTS
MINDFUL, CENTRE FOR RESEARCH AND TRAINING IN DEVELOPMENTAL HEALTH Department of Psychiatry, The University of Melbourne
Mindful Centre for Training and Research in Developmental Health is the state-wide unit responsible for the delivery of postgraduate courses, training programs, professional development and research programs in child and adolescent mental health. Mindful has a comprehensive ASD Training Calendar and supports a State-wide ASD co-ordinator network to embed learning into practice and facilitate ASD assessments in Victorian Child and Adolescent /Youth Mental Health Services
Background
Victorian Specialist Mental Health Child /Youth ASD Coordinators
The Mindful, Victorian ASD Statewide Coordinator supports a network of ASD/Neurodevelopmental Assessment Team Coordinators across the 14 tertiary Victorian Child, Adolescent/Youth Mental Health Services. These specialist clinician coordinator positions were funded as part of the 2009 Victorian Autism State Plan. In addition, Mindful also received funding to develop and deliver a comprehensive Autism Spectrum Disorder (ASD) training calendar focussing on assessment and treatment of complex ASD presentations and co- occurring mental health conditions.
The Mental Health ASD/Neurodevelopmental Disorders coordinators provide a network of public specialist assessment services for children and young people with ASD who have a complex presentation, are difficult to diagnose and have co-occurring mental health conditions. Common co-occurring mental health disorders are anxiety, depression and ADHD. Other co-occurring conditions included eating disorders, obsessive compulsive disorder, and presentations of self -harm and increased risk of suicide. In addition, these children and young people may also have experienced trauma, family breakdown, non-attendance at school; homelessness, criminal justice system, socio economic hardship and /or CALD Background.
Through the Victorian Child/Youth Mental Health ASD/Neurodevelopmental teams many of our most vulnerable and disadvantaged children and young people with suspected ASD have access to diagnostic and treatment services.
ASD and Mental Health
Children and youth with ASD have difficulties with emotional regulation, social understanding and communication that impact on the child’s/ young person’s ability to function within the community and access education. Families of children with ASD experience a higher rate of mental health issues. Children/youth with undiagnosed or poorly treated ASD often become
increasingly anxious and depressed with age and higher levels of self-harm and suicidality are well documented. ASD and undiagnosed or untreated co-occurring mental health problems lead to poorer outcomes for the child /young person/adult with ASD and increased stress for families/carers. Delays in accessing appropriate interventions further contribute to poorer outcomes in all areas of a person’s development: socially, emotionally and academically/vocationally.
Mental Health comorbidity in ASD is high across the lifespan.
This submission will address the following questions: d. the independence, qualifications, training, expertise and quality assurance of assessors j. the appropriateness of independent assessments for particular cohorts of people with disability, including Aboriginal and Torres Strait Islander peoples, people from regional, rural and remote areas, and people from culturally and linguistically diverse backgrounds; k. the appropriateness of independent assessments for people with particular disability types, including psychosocial disability; and l. any other related matters
Where assessments are provided by tertiary public mental health services in Victoria, a thorough and comprehensive multidisciplinary assessment of these complex children and youth with ASD, is currently completed.
Victorian Child/Youth Mental Health ASD/Neurodevelopmental teams are concerned that about:
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Understanding the complexity of co-occurring Mental Health & ASD If further assessment is required by NDIS, it is best completed by a practitioner or assessment team that knows the child/youth and understands their associated mental health difficulties. The neurodevelopmental and mental health conditions of these children/youth require a comprehensive assessment across a variety of contexts. The impact of a child’s/youth’s autism and mental health condition both impact on their functional skills and both therefore need to be considered.
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The impact on the child and Young Person It is unlikely that an accurate assessment will be achieved if completed by an unfamiliar practitioner. Meeting new people is inherently difficult for people with autism and assessment is best conducted within the context of an established therapeutic relationship.
Engaging these children/youth in assessment can be difficult as trust is a primary issue for many of these children/youth who have experienced trauma, family breakdown and social disadvantage.
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Increased burden on families and carers For these clients/families who have already undergone an extensive tertiary assessment it seems an unnecessary financial cost to repeat assessments with a third party. It will increase the stress of parents already distressed as many have not been able to use allocated NDIS funding due to a limit allied health workforce. Research has demonstrated parents of children with Autism, experience higher levels of stress and mental health issues than parents of children with other disabilities. The new process is likely to disadvantage parents who are less able to advocate for their children due to their own social, or educational disadvantage and for families from culturally or linguistically diverse background. These families were previously supported by reports and assessment by their current providers. The assessment process is burdensome and can raise confronting or sensitive information. Moving though this mandatory process each year with an unknown assessor is likely to be detrimental to the mental health and wellbeing of many parents and young people and could be avoided.
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Workforce implications Further “Independent Assessment” will create additional and unnecessary demand on an already limited workforce particularly in rural areas where allied health services are limited. It will also impact on the current unacceptably long waiting lists for therapy services across rural and metropolitan areas.
Recommendations
That the family/young person have the choice/ option to have clinician/public tertiary
assessment team complete the functional assessment for vulnerable
children/adolescents with co-occurring ASD &mental health conditions
That a standardized measure be provided by NDIS to the usual treating clinician/or
public tertiary assessment team to complete.
That there is some flexibility of measures to ensure it is appropriate for the client,
their mental health condition and their social situation and supports. For example,
treating clinicians may choose to add additional measures should they feel these
better capture the client’s difficulties.
That it is likely to be more cost efficient to fund treating clinicians/tertiary assessment services to complete any further assessment required by NDIS which would place less demand on an already limited allied health workforce. That NDIS should make any measures required accessible to tertiary Child/Youth Mental Health ASD/Neurodevelopmental teams.
Frances Saunders ASD Statewide Coordinator Mindful, Centre for training and research in developmental health Building C, 50 Flemington Street, Travancore 3032 Department of Psychiatry, The University of Melbourne E: fsaunders@unimelb.edu.au
Associate Professor Alessandra Radovini Director Child and Adolescent Psychiatrist Mindful, Centre for training and research in developmental health
Pieta Shakes Child & Youth Mental Health Service Neurodevelopmental Psychiatry Clinic Coordinator GV Health, Shepparton
Dr Fiona Zandt Mental health Specialist Autism Team Coordinator Royal Children’s Hospital, Melbourne.
Johanna Rouse Coordinator - Neurodevelopmental Stream Orygen, Parkville
Libbi Bland Child & Youth Mental Health Service Speech Pathologist/Coordinator Gippsland Neurodevelopmental Assessment Service Latrobe Regional Hospital
Julie Gillin Coordinator of SAAS (Specialist Autism Assessment Service) Child & Adolescent Mental Health Service, Bendigo
References
Brookman-Frazee, L., Stadnick, N., Chlebowski, C., Baker-Ericzén, M., & Ganger, W. (2018). Characterizing psychiatric comorbidity in children with autism spectrum disorder receiving publicly funded mental health services. Autism, 22(8), 938–952.
Kirby, A. V., Bakian, A. V., Zhang, Y., Bilder, D. A., Keeshin, B. R., & Coon, H. (2019). A 20-year study of suicide death in a statewide autism population. Autism Research, 12, 658-666.
Randall, M., Sciberras, E., Brignell, A., Ihsen, E., Efron, D., Dissanayake, C., & Williams, K. (2016). Autism spectrum disorder: Presentation and prevalence in a nationally representative Australian sample. Australian & New Zealand Journal of Psychiatry, 50(3), 243-253