1 William Street Brisbane 4000
GPO Box 806 Brisbane
Queensland 4001 Australia
Our reference: COM 03522-2020
21 July 2020
Senator Hollie Hughes
Committee Chair
autism.sen@aph.gov.au
Dear Senator Hughes
Thank you for the opportunity to provide information to the Commonwealth Senate Select Committee on Autism (Select Committee).
Issues raised by stakeholders
As Queensland Minister for Communities and Minister for Disability Services and Seniors, I hear from a range of people with disability, including people with autism spectrum disorder (ASD), their families and carers, service providers and others in the disability sector about their experiences. I would like to take this opportunity to share what I am hearing with you and highlight a few key activities the Queensland Government has in place to support Queenslanders with autism.
In addition to regular stakeholder engagement, the Queensland Disability Advisory Council (QDAC) and the Queensland Carers Advisory Council (QCAC) have also provided advice in relation to disability policy and issues arising for carers.
Stakeholders have identified a broad range of issues which impact on the lives of people with autism. These issues are summarised in Attachment 1. Progress in resolving these issues is critical for the achievement of greater social inclusion, participation in employment, and better support for people with autism in Queensland.
Attachment 2 outlines a number of initiatives the Queensland Government has in place to support people with autism that may be of interest to the Committee.
Overlap with previous inquiries
I note that generally, the issues I have outlined in the attached are consistent with those raised by the Queensland Government in its submission on the 2019 Review of the NDIS Act 2013 and the Participant Service Guarantee (Attachment 3). I recommend the Select Committee refer to this document, also available at:
https://engage.dss.gov.au/ndis-participant-service-guarantee-2019-submissions/1573708709/.
While I acknowledge the review of the NDIS Act report has now been released
(https://www.dss.gov.au/disability-and-carers-programs-services-for-people-with-disability-national-disability-insurance-scheme/review-of-the-ndis-act-report), many of the issues raised in Queensland’s submission remain relevant.
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In addition, a number of issues identified in this submission have been the subject of recommendations of previous inquiries, such as the Joint Standing Committee on the NDIS’s Inquiry into Market Readiness. The Queensland Government has previously suggested that to increase accountability, the NDIA should institute regular reporting on the responses to these recommendations and of other formal recommendations made to it by other Commonwealth Parliamentary committees or statutory bodies, such as the Productivity Commission.
Thank you for the opportunity to raise these issues.
If you require any further information or assistance in relation to this matter, please contact Ms Carolyn Nicholas, Chief of Staff in my office
Yours sincerely
Coralee O’Rourke MP
Minister for Communities and
Minister for Disability Services and Seniors
Enc. (3)
CC: The Honourable Grace Grace MP, Minister for Education and Minister for Industrial Relations
The Honourable Di Farmer MP, Minister for Child Safety, Youth and Women and Minister for the Prevention of Domestic and Family Violence
The Honourable Mick de Brenni MP, Minister for Housing and Public Works, Minister for Digital Technology and Minister for Sport
Attachment 1 - Outline of key issues identified through stakeholder engagement
A key responsibility as part of my Ministerial portfolio and an associated priority for my department (the Department of Communities, Disability Services and Seniors [DCDSS]) is to ensure that the views of people with disability and key stakeholders are heard in relation to issues that have impacts for them.
DCDSS has heard feedback from many stakeholders that relate to the experience of people with Autism. Outlined below is a brief summary of some of these core issues raised by stakeholders.
Diagnosis
Concerns are raised by stakeholders that there is a conflict between the time it takes to achieve a professionally thorough and accurate diagnosis and the timeframes for access to NDIS funding. This can result in access to supports being delayed or not accessed.
Evidence required to receive a package
Stakeholders note that a large amount of evidence is required to apply for an individual package. While evidence ensures the application is robust and helps match services to need, a balance must be considered to ensure the application process is not a significant burden or act as an overall disincentive to accessing supports under the NDIS.
NDIA supports and processes
Stakeholders report, that where people with autism spectrum disorder (ASD) do become eligible for the NDIS, participants may face delays before they are able to meet with a planner and plans may not include the right type, mix and amount of support. Stakeholders report this has been due to incompleteness of the planner’s knowledge about disability and/or the participant’s individual needs, or inconsistency with the agreed roles and responsibilities of the NDIS and other service systems. Stakeholders also report that in some cases lack of planner knowledge can also lead to inequitable outcomes e.g. people with similar needs in similar situations receiving very different plans (see example p.14 in Tune Review submission). These problems are compounded where participants are exceptionally vulnerable or significantly disadvantaged, such as children with ASD in the child protection system who are experiencing significant issues, including with:
- expensive assessments, and lengthy wait times to obtain an assessment
- accessing an assessment by a clinician with an understanding of both ASD and trauma
- lack of assessment services for young people as they get older
- accessing robust NDIS plans for children experiencing challenging behaviours, which may lead to exclusion from school and/or engagement with the police and youth justice system
- lack of early engagement in planning for transition of children from the child protection system, which should occur well before the child turns 18.
Integrated services across whole-of-life
Concerns are raised by stakeholders that there is a lack of coordination and integration of services, in particular across a person’s life course. Positively, there is a focus to support children and young people with ASD during schooling years while they are in the education system. However, there are concerns that the supports provided post-schooling are more limited.
Early Intervention
Stakeholders consider that early intervention is a powerful mechanism for improving outcomes for children with ASD. More consideration is needed to the supports that are most beneficial at particular stages in the child’s life. Proposed areas for improvement include:
- developing plans based on an individual, person-centred approach
- reviewing plans to ensure they meet the changing needs of individuals and enable children to remain safely at home
- ensuring plans include adequate supports from appropriate sources particularly for children with ASD who present with profound, severe and complex needs.
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Access to supports in rural and remote communities
Stakeholders often report difficulties individuals in rural and remote communities face in receiving supports. In addition, diagnosis and treatment may be difficult in rural and regional areas and there are limited support services to assist young people with ASD, especially within rural and remote communities. Limited support services can add to stress experienced by families, and can lead to family breakdown.
Research
Stakeholders suggested that research needs to be conducted to support innovative approaches and practice to help inform what can make a difference; and develop a better understanding of the characteristics of ASD. Research that delivers a better understanding of the characteristics of ASD could be used to inform and assess innovative approaches which can improve long term effectiveness of supports.
Impacts for carers and families
Carers and families are often the people providing direct support to people with ASD, as well as having to navigate systems to obtain appropriate supports. This Inquiry provides an opportunity to consider the adequacy of supports available for carers and families.
Education and awareness
Stakeholders advise that there is a need to improve understanding about ASD in the broader community, and specifically among people supporting those with ASD. For example building a better understanding of:
- the difference between a mental health diagnosis and neurodevelopmental condition
- how young people with ASD may present, and react within stressful situations
- the impact of trauma on how a person with ASD may present
- the supports and interventions that may be appropriate for young people with ASD
- that ASD is a life-long condition.
A National Strategy on Autism
Stakeholders support the development of a National Strategy on Autism to integrate services for people with ASD across their lives, and to drive changes across sectors, similar to the National Plan to Respond to Elder Abuse in Australia. This is an opportunity to translate the myths and misconceptions about people with ASD into positive futures and greater community education. Any National Strategy on Autism must be developed by engaging and consulting with people with ASD, their families and advocates and have particular regard to the specific needs of people with ASD from Aboriginal and Torres Strait Islander backgrounds.
Attachment 2 - Outline of Queensland Government initiatives
The Queensland Government is committed to supporting Queenslanders with disability. Outlined below is some information on the key initiatives delivered across the Queensland Government to support people with autism spectrum disorder (ASD) that may be of interest to the Committee.
Autism Hub
The Autism Hub within the Department of Education delivers professional learning, supporting educators to include and engage students with ASD, and enables parents to partner with schools in their child’s education. Since 2015, the Autism Hub has established strong partnerships with a range of key stakeholders to support students, their families and educators to navigate and access the wide range of dedicated ASD support services and programs offered by the NDIS, Queensland Government and non-government agencies. The Autism Hub supports the needs of school leaders, teachers, parents and caregivers through a state-wide, cross-sector advisory model. Examples of some of the innovative projects include a Men’s Shed with a special interest group for male family members of children with ASD, and a school mentoring program for adolescents through the I CAN Network.
Specialist Child Safety and Youth Justice services
The Department of Child Safety, Youth and Women also works closely with the National Disability Insurance Agency to ensure children and young people with ASD who are in care have access to the supports to which they are entitled.
A Specialist Services team in the Department of Child Safety, Youth and Women provides quality, evidence-based, well-coordinated support to children and young people in contact with the child safety system who have disability, mental health needs, and/or complex and high-risk behavioural, psychological, emotional needs. This includes children and young people from Aboriginal and Torres Strait Islander backgrounds and those on dual orders.
Specialist Services Clinicians work with Child Safety Officers and other stakeholders to support the health and development of children with high and complex needs through:
- early identification of disability, health, mental health and behavioural support needs
- identifying the appropriate supports required to meet those needs that are available through mainstream services, the NDIS or commissioning of supports as required.
The Department of Youth Justice supports young people with ASD in the youth justice system by:
- working with allied health professionals in the courts, youth justice service centres and youth detention centres to identify support needs and assist young people to access NDIS or other supports
- utilising Behaviour Support Teams as part of a multidisciplinary team within youth detention centres to provide intensive support to young people with complex mental health and/or behavioural issues.
Additionally, Specialised Multi Agency Response Teams are being trialled in eight locations throughout Queensland for young people in the youth justice system to support the Children’s Court in assessing and addressing young people’s needs and factors that contribute to offending behaviour.
Supports for Foster and Kinship Carers
Queensland Foster and Kinship carers are supported in a number of ways to meet the needs of children and young people in their care with complex needs, including those with ASD, including:
- in addition to the fortnightly foster carer allowance, the High Support Needs Allowance (HSNA) may be provided to assist a carer with the direct care costs of a child assessed as having a high level of support needs where the needs consistently result in costs exceeding the fortnightly caring allowance
- a Complex Support Needs Allowance may also be provided to assist a carer to meet the direct and additional indirect costs of caring for a child assessed as having a complex or extreme level of support needs, that consistently result in costs exceeding both the
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fortnightly caring allowance and HSNA, due to there being more costly expenses, a wider range of expenses and/or a greater frequency of expenses
- for ad-hoc costs in meeting care needs over and above the fortnightly caring allowance, carers can also be supported through reimbursement of some Child Related Costs, for example medical expenses
- additional training targeted at carers supporting children and young people with complex needs, this includes a Positive and Protective Series, which has a module focused on Sexuality and Autism Spectrum Disorder that was developed by True Relationships and Reproductive Health in 2016. For more information see:
https://www.csyw.qld.gov.au/child-family/foster-kinship-care/carer-training/foster-carer-training/advanced-training/positive-protective-series - additional external training, which can also be accessed and funded through a specific application where identified in the Foster Care or Placement Agreement.
Disability Connect Queensland (DCQ)
The role of the Department of Communities, Disability Services and Seniors (DCDSS) has shifted from providing a number of services to children, young people, adults, their families and carers to supporting and advocating for people with disability. This role also includes working in partnership with the disability sector to create an all-abilities Queensland and monitoring the NDIS to ensure it delivers the outcomes we all expect for Queenslanders with disability. The establishment of DCQ ensures the oversight and advocacy that Queenslanders with disability deserve. A key strategy of DCQ is to seek and consider the lived experience and views of people with disability (including those with ASD), their families, carers and the sector, as we continue to build a more inclusive and accessible Queensland.
Assessment and Referral Team (ART)
The new Assessment and Referral Team (ART) within DCDSS assists people with disability in their applications to the NDIS. Commencing in Maryborough, South Burnett, North Burnett and Fraser Coast areas, the ART is working to identify people in these areas who may need extra help applying for the NDIS. The ART will progressively rollout across the state. This program is funded by a $20 million investment negotiated by the Queensland Government with the Commonwealth Government. Further information about ART can be found at:
https://queenslandcommunities.engagementhub.com.au/disability-connect-and-outreach-hub
Be Well Learn Well
Be Well Learn Well (BWLW) is a Department of Education initiative in partnership with CheckUP, Gidgee Healing and the Apunipima Cape York Health Council. The initiative aims to identify and address behavioural and learning issues, improving educational outcomes for Aboriginal and Torres Strait Islander students from pre-Prep to Year 12 across eight remote state schools.
BWLW integrates early intervention and health methodologies in the school setting, supporting a workforce of education and health professionals to respond holistically and in a timely manner to the risk factors influencing child development and schooling outcomes. The services incorporate input from principals, teachers, school support staff, the student’s family and the wider community in the process of improving learning outcomes for each student.
BWLW supports Aboriginal and Torres Strait Islander student developmental needs through the delivery of targeted speech pathology, occupational therapy, psychology and clinical psychology services to identify and address behavioural and learning issues.
Further information about BWLW can be found at: https://education.qld.gov.au/students/aboriginal-torres-strait-islander-education/be-well-learn-well
Housing Principles for Inclusive Communities
In Queensland, housing responses for people with disability, including people with ASD, are underpinned by the Housing Principles for Inclusive Communities. The Housing Principles of rights, choice, control and inclusion aim to ensure that people are empowered to make informed decisions
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about their home and living arrangements and are provided with opportunities to participate in the community. The housing principles have been developed jointly by Queensland Government agencies in collaboration with Griffith University, National Shelter, and the Queenslanders with Disability Network (QDN). The principles align with the intent of the United Nations Convention on the Rights of Persons with Disability, the NDIS and the Queensland Housing Strategy 2017-2027. Further information about the housing principles can be found at:
https://www.hpw.qld.gov.au/about/initiatives/housing-principles-inclusive-communities