Submission to the Victorian Family and Community Development Committee’s Inquiry into services for people with autism spectrum disorder

Submission No 133

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER

Organisation: National Disability Services

Date Received: 27 April 2016

Submission S133 Received 27/04/2016 Family and Community Development Committee

NATIONAL DISABILITY SERVICES VICTORIA

April 2016

Overview

NDS is pleased to make a submission to the Family and Community Development Committee’s Inquiry into services for people with autism spectrum disorder (ASD).

Life opportunities for many children and adults with ASD in our community are currently restricted, reflecting the inadequate early intervention services traditionally available, limitations on disability supports, significant problems with accessible education and poor employment options, and continuing high levels of discrimination. The NDIS offers great potential to address some of these concerns, but will not achieve this potential without effective intervention by the State and Commonwealth governments in implementing the National Disability Strategy, and in Victoria, implementation of an ambitious State Disability Plan which tackles the inclusion of people with disabilities in our community.

National Disability Services

NDS is the peak body in Victoria and Australia for non-government disability service providers, with more than 200 members in Victoria and more than 1,050 members nationally. We have a diverse and vibrant membership, comprised of small, medium and larger service providers supporting thousands of people with disability, including both children and adults with autism spectrum disorder. Our members employ over 8,000 people in Victoria alone and are supported by countless volunteers in delivering vital services to Victorians with disability.

NDS is committed to improving the disability service system to ensure it better supports people with disability, families and their carers, and to building a more inclusive community. NDS has advocated strongly over a number of years for the introduction of a National Disability Insurance Scheme (NDIS) and is now supporting service providers across Victoria as they transition to the new Scheme.

Autism Spectrum Disorder

Autism has been described as *“lifelong developmental disabilities characterised by marked difficulties in social interaction, impaired communication, restricted and repetitive interests and behaviours and sensory sensitivities”*i. Autism Spectrum Disorder (ASD) is the term used to describe a group of disorders that includes autism, Asperger’s syndrome and pervasive developmental disorder (also known as atypical autism). Whilst autism is the most commonly occurring form of ASD, there is a wide variety and differing levels of severity of symptoms found in people with ASD. The condition affects the way individuals are able to interact with others and they often find the world to be a confusing place. For many people with autism, it is a very disabling condition that presents substantial challenges for those affected, their families and friends. People with autism usually need quite different supports in some areas, such as employment, compared to people with other disabilities. Many people with autism have a combination of disability types resulting in complex needs. Development of effective policies, frameworks and programs to improve outcomes in the disability sector depends on recognition and understanding of the diverse nature of disability.

According to the Autism Victoria Professional Advisory Panel, the current prevalence of ASD within Australia is estimated to be 1:160 childrenii. There has been a rise in the prevalence of Autistic

Disorder and the combined ASDs over time, especially since the 1990s and in children, most likely due to a combination of changing diagnostic criteria and increased public and professional awareness of autism.

Current Experiences

There are many reports, studies, anecdotal stories and media reports attesting to the abysmal experiences and outcomes of many children and adults with ASD in our society. The Australian Bureau of Statistics’ (ABS) Autism in Australia 2012 report, identified deeply disturbing outcomes for Australians with autism in the realms of education, labour force participation and employment, need for assistance and receipt of assistanceiii.

Data on educational outcomes is deeply concerning. An appropriate school environment can provide opportunities to develop important social and life skills. However, the ABS 2012 study found that of the 95% of children with ASD who experience educational restrictions, 6% of these children were not able to attend school because of their disability and 44% attended either a special class in a mainstream school or a special school. For children with autism attending school, 86% reported ‘having difficulty’ at school, with the majority having difficulty fitting in socially, learning and communication.

The ABS study also found that of those people with autism who finished school, 81% had not completed a post-school qualification. This was well above the rate for the rest of the population and people with no disability.

Compounding this negative educational experience, the ABS found poor labour participation outcomes, with a labour participation rate of 42% for people with autism compared to a rate of 53% for people with disabilities generally and 83% for people without disabilities. This trouble participation rate is in a context of Australia having very poor employment outcomes in general for people with disabilities, particularly when compared to other industrialised countries. Disturbingly, Australia ranks 21st out of 29 in employment participation rates for people with a disability amongst OECD countriesiv.

NDS members and some of those families supported by NDS members, have provided examples of distressing situations resulting from inadequate supports provided to people with ASD, a lack of understanding from community members and sometimes outright discrimination.

Looking ahead

This Inquiry provides an opportunity for the Committee and, through its report, the Victorian Parliament, to take stock of the current situation and ongoing developments with the NDIS, and to identify timely actions which can be undertaken by the Victorian government to address this dire situation for people with ASD in our community.

NDIS

The NDIS is expected to improve significantly the experiences of many children and adults with ASD. The NDIS will rollout across Victoria over a three year period, from 1 July 2016 to 30 June 2019. If

designed and implemented well, the NDIS will support innovative and sustainable service provision, advance the social and economic participation of people with disability and reduce the need for crisis expenditure in the health, justice and welfare sectors.

NDIS offers the promise of delivering substantially more services to people with disability, services that better suit their individual needs and which are provided in flexible, responsive and innovative ways. The focus on community and economic engagement foreshadows NDIS participants being able to participate more fully in community and economic life. Insurance principles underpinning the NDIS will support a more prudent and targeted allocation of public resources based on a long-term (lifetime) economic view. Investment in early intervention and funding growth will ensure that appropriate specialist disability support will complement and enhance independence and natural supports – reducing overall Scheme costs. These developments will involve disruptive transformation of the existing disability services system, including a move to a more competitive, market-based approach driven by the individual choices of people with disability. Investment in the NDIS is enabling significant allocation of funding for supports for individuals, allocated on a ‘reasonable and necessary’ basis through development of individualised plans. In fact, people with autism and related disorders account for 31% of approved plans, the highest proportion for any defined disability under the Schemev. Under the Scheme’s insurance principles, there is a strong focus on early intervention. There is also expected to be a strong focus on supporting individuals into employment and improved community inclusion. Such elements offer the promise of improved outcomes for children and adults with ASD.

The National Disability Insurance Agency (NDIA) has recently released a detailed report looking at evidence for good practice for supports provided to preschool children, their families and carersvi. Development of this paper drew on input from an array of professionals and advocacy organisations, and canvassed extensive studies and papers. The report reinforces the underlying principles of early intervention being evidence-based; recognizing that families require support; family centred practice; and individual planning. Recommendations include that children with a diagnosis of autism should receive on average 20 hours per week of early intervention, development of individual plans for each child, and an emphasis on family engagement and involvement. It is expected that the NDIA will draw on this report and its recommendations in development of its early intervention practice for children with ASD.

Changing role of the state government in the new NDIS disability context

The role of the Victorian government in relation to people with disability is changing but continues to be critical. Whilst the NDIS is being delivered by the NDIA, the Victorian Government will continue to have significant ongoing responsibility to support people with disability, including those with ASD. This is as both a co-funder and co-designer of the NDIS, and in relation to ongoing direct responsibility for mainstream services and the broader Victorian community. Particular areas requiring ongoing action by the Victorian government include:

advocacy to NDIA regarding Information, Linkages and Capacity Building (ILC) services
interface between the NDIA and mainstream services
implementation of a breadth of strategies to create an inclusive state, in line with the aims of the National Disability Strategy, and a new and ambitious State Disability Plan

accessibly of mainstream services, including education and health care

Information, Linkages and Capacity Building (ILC) services

The NDIS will directly support only a portion of people with disabilities - those with permanent disability with significant impact on function. 105,000 Victorians are expected to become NDIS participants at full scheme rollout, leaving almost 900,000 Victorians with disability who will still require access to appropriate services. These people, including some on the autism spectrum, will rely on mainstream services and on activities funded under the Information, Linkages and Capacity Building (ILC) program of the NDIS.

The ILC program is still being developed, and it is not clear how smoothly, or if at all, many of the current community-based programs targeting people with ASD will transition to the new ILC funding stream. Such services include information provision and referral, volunteer co-ordination, peer support groups and a range of community development activities. Initiatives like these are highly valuable and make a critical contribution to many individuals and families affected by ASD, as well as our broader social capital.

Active lobbying by the Victorian Government will be required to ensure that the NDIA’s ILC framework and competitive grants commissioning process, which is expected to replace some of the current block funded services in Victoria, does not inadvertently create service gaps or see the demise of effective and valuable activities. It is important that any move to NDIS ILC funding does not displace a swathe of valuable existing services before they have had the opportunity to demonstrate their impact and effectiveness.

Recommendation: That the Victorian government monitor and assist existing effective community activities supporting people with ASD and other disabilities to transition to NDIS ILC funding or arrange continued state funding

Interface between NDIS and mainstream services

Another new and critical role for the Victorian Government with the impending rollout of NDIS, is to actively support development of a smooth interface between NDIS funded services and mainstream services.

The NDIA is introducing new funding and new processes around disability supports for individuals, however these individuals will also continue to access services across education, health care, perhaps housing or protective services, perhaps through the criminal justice system and so on. Substantial development work needs to occur at all these interface points, at the system level through to the service provision level. Delivering this key outcome may require the Government to adopt a proactive approach to cross-departmental program redevelopment to address service gaps which may emerge as Victorian disability funding is reallocated to the NDIS. The capacity of mainstream services needs to be strengthened to better support people with disabilities and ensure these services interface tightly with the NDIS, so that Victorians with disability, including those with ASD, don’t ‘fall between the cracks’.

Creation of an inclusive community

A third area of activity recommended for the Victorian government is the implementation of a suite of initiatives and strategies to create an inclusive state, in line with the aims of the National Disability Strategy, and a new and ambitious State Disability Plan.

The National Disability Strategy, endorsed by all Australian Governments, provides a comprehensive framework for achieving an inclusive nation. Despite widespread political support for the Strategy, implementation has been slow, and overshadowed by the focus on delivering the NDIS. Yet achievement of outcomes under the National Disability Strategy is contingent on, and essential for, successful implementation of the NDIS. Inclusive transport, technology, justice, housing, health and education systems are imperative for a viable NDIS that has the capacity to increase the social and economic participation of all people with disability, including those with ASD. Implementation of the Strategy will reduce the cost of crisis services in the hospital, justice and income support sectors.

The Victorian government has a key leadership role to play in continuing to lobby the Commonwealth government for investment in and active commitment to this national strategy. Victoria also has the opportunity to reflect the ambitions of the National Strategy in its own State Disability Plan.

The Victorian State Disability Plan 2017-2020 is currently being developed, and represents an opportunity to be courageous and ambitious in developing and implementing whole of government targets towards building an inclusive community where people with a disability are supported and empowered to make choices that enable them to live a life they value. Such a Plan will allow Victoria to position itself as leading the way on social inclusion.

The Final Report of the Parliamentary Inquiry into Social Inclusion and Victorians with Disabilityvii, released in 2014, made 25 key recommendations which will assist in advancing social inclusion for Victorians with disability. This landmark bipartisan report attracted many submissions from a broad cross-section of the community. Its considered recommendations provide a blueprint for policies which will complement the NDIS rollout, and which can be implemented via the State Disability Plan.

Recommendation: Invest in development and implementation of an ambitious 2016-19 State Disability Plan across government portfolios to deliver inclusive Victorian communities, and reflect the ambitions of the National Disability Strategy

Amaze CEO, Fiona Sharkie, has stated, *“The biggest step forward we could make is an attitudinal shift whereby everyone in society increases their knowledge and understanding of autism and make small adjustments and exhibit patience and genuine willingness to include people on the autism spectrum. Increasing our collective understanding of autism will see us reap benefits from the many unique strengths that people on the autism spectrum offer.”*viii NDS agrees with this view, and recommends that the Victorian Government funds a community education campaign aimed at increasing awareness and inclusion of people with disabilities, including people with ASD. In addition to assisting Victoria to become the most inclusive State, such a campaign would help attract a diversity of people to the disability workforce, as required by the NDIS.

Recommendation: That the Victorian Government fund a community education campaign aimed to increasing awareness and inclusion of people with disabilities, including those with ASD

Accessibility of Mainstream Services

Closely related to the need to create an inclusive Victoria, is the imperative of transforming the accessibility of many of our mainstream services, with a focus on the education system.

Education

The Victorian education system, at both primary and secondary levels, needs to change dramatically, so as to welcome and appropriately support young people with ASD. The long-awaited nationally-consistent collection of data on school students with disability was implemented in August 2015. The sector understood this would contribute to the establishment of a schooling resource standard which includes an adequate loading for children with disability and helps to enable inclusive education. The Gonski Review of Funding for Schooling, 2011, provided a blueprint for funding according to individual needs of studentsix. NDS is disappointed that secure needs-based and targeted funding has not been allocated as an outcome for the start of the 2016 school year, and urges the Victorian government to commit to fully accessible education.

Recommendation: That secure needs-based and targeted education funding be provided to cover all students with disability based on the Nationally Consistent Collection of Data on School Students with Disability to ensure fully accessible education

There are many areas of school process and practice, culture and training, which need to be addressed. These are discussed at length in the Victorian Equal Opportunity and Human Rights Commission’s Held Back report 2012, which examined the experiences of students with disabilities in Victorian schoolsx. This report provides many disturbing findings, including that of the 346 parents who stated that their child had ASD, 70% reported that their child had experienced bullyingxi. The use of restrictive practices and seclusion in schools is also addressed in the Report, and has been the subject of recent media reports. NDS endorses the Commission’s recommendation that the regulation of restrictive interventions in Victorian schools be transferred to the jurisdiction of the Office of Professional Practice, Department of Health and Human Services.

Recommendation: that regulation of restrictive interventions in Victorian schools be transferred to the jurisdiction of the Office of Professional Practice, Department of Health and Human Services

Recent media reports have also highlighted a review undertaken by former Disability Discrimination Commissioner Graeme Innes of supports provided to Victorian school studentsxii. Articles quote the review as finding that Victorian schools lack a ‘culture of inclusion’, and state there was evidence that some go so far to ‘explicitly or subtly’ refuse to enroll children with disabilities. The findings reportedly identify children with autism, as well as dyslexia, as particularly likely to miss out on continuing to qualify for support as they transition to secondary school. It is noted that the

government has indicated that it will be accepting many of the report’s recommendations, and providing additional funding in the 2016-17 budget to provide greater support to students with disability.

Further recommendations:

Provide non-individualised funding to schools that is dependent on progress made towards disability action plans to ensure children with disability are welcome and supported in schools.
Educate school communities about disability inclusion and benchmark inclusive education with progress on disability action plans published on the ‘my school’ website.
Strengthen training for all teachers on the skills required to teach and include children with disability, and promote related professional development
Ensure specialist advice is available, such as how to modify the curriculum for a particular child, promote positive behaviour for children with disability, and improve general understanding around why certain restrictive interventions must not be used.
Develop joint planning between schools, families and the NDIA

Employment

Another important area critical to the life outcomes of many people with ASD is employment. Whilst there is potential for the NDIS to significantly improve the employment prospects of people with ASD, this will require active state government involvement through creation of inclusive communities, and an education system that adequately prepares people for the workforce. There is also the potential for proactive approaches to fostering employment opportunities for people with disability in the public sector, including flexible employment practices and opportunities for people with disability to enter or gain employment experience in the Victorian Public Service. In doing so, the Victorian Government should look to the example of the NDIA, where 18% of employees have a disability compared to an overall public service average of 3.5%. By taking the lead in promoting the importance of disability employment, the Government can demonstrate to other employers the possibilities and benefits of employing people with disability.

The Government could also lead by example in supporting the work of innovative employment initiatives such as TestIT, which is a software testing firm which provides long term employment opportunities for people with Asperger’s Syndrome. Such individuals often have excellent memory recall, high attention to detail and a superior ability to identify defects and irregularities, which has proven to be a competitive advantage in software testing firms.

There is a range of initiatives which are proving to be effective overseas, such as Extraordinary Ventures, North Carolina, USA, an innovative car wash operation in Florida, USA and a popping corn company, also in the USA. Such companies have adopted new ways of thinking, and have adapted and rearranged workplaces to take advantage of the strength and skills of people with ASDxiii. Again, the Victorian government could actively support such initiatives through its procurement policy, and/or funding of infrastructure support to enable the development of such business ventures.

Recommendation: That the Victorian government actively foster and support employment opportunities for people with disabilities, including those with ASDs, through its procurement program, and through support for innovative approaches to employment creation

Conclusion

The life opportunities for many children and adults with ASD in our community are currently restricted, reflecting the inadequate early intervention services traditionally available, limited disability supports, significant lack of accessibility across many mainstream services, particularly in the education and employment arenas, and continued high levels of misunderstanding and discrimination across society. The NDIS offers great potential to address these concerns, but will not realise this potential without active and effective intervention by the Victorian government.

The role of the state government is changing with the advent of NDIS, and the government now needs to focus its attention on: advocacy to NDIA regarding ILC services; investment in development of a smooth interface between NDIA and mainstream services; implementation of a breadth of strategies to create an inclusive state, in line with the aims of the National Disability Strategy and a new and ambitious State Disability Plan; and strong leadership in relation to increasing the accessibility of mainstream services, particularly in education and employment. Such efforts, combined with the introduction of NDIS, can offer real hope that the life outcomes for children and adults with ASD in our Victorian community will be improved.

redacted: s47F - Personal privacy

David Moody State Manager Victoria National Disability Services

Endnotes

i Autism Spectrum Australia, at https://www.autismspectrum.org.au/

ii http://www.autismvictoria.org.au/policy/documents/PrevalenceofASD 001.pdf

iii Australian Bureau of Statistics, 4428.0 - Autism in Australia, 2012, at http://www.abs.gov.au/ausstats/abs@.nsf/Latestproducts/4428.0Main%20Features12012?opendocument&tabname=Summary&prodno=4428.0&issue=2012&num=&view=

iv Sickness, Disability and Work: Breaking the Barriers, A Synthesis of Findings across OECD Countries, see http://www.oecd-ilibrary.org/social-issues-migration-health/sickness-disability-and-work-breaking-the-barriers9789264088856-en

v NDIS 10th Quarterly Report to COAG Disability Reform Council, Dec.2015, p.31, see http://www.ndis.gov.au/sites/default/files/documents/Quarterly-Reports/Report-to-the-Disability-Reform-Council-Q10-1.pdf

vi Roberts, J., Williams K., Smith K, & Campbell L., Autism spectrum disorder: Evidence-based/evidence-informed good practice for supports provided to preschool children, their families and carers, at http://www.ndis.gov.au/sites/default/files/Early%20Intervention%20for%20Autism%20research%20report.pdf

vii See http://www.parliament.vic.gov.au/fcdc/article/2174

viii Fiona Sharkie, Amaze CEO, see http://www.amaze.org.au/2016/01/response-to-the-recent-media-reporting-on-autism/

ix Review of Funding for Schooling Dec. 2011, at https://d3n8a8pro7vhmx.cloudfront.net/aeu/pages/1/attachments/original/1393387838/GonskiFinalReport2012.pdf?1393387838

x Held back: The experiences of students with disabilities in Victorian schools, 2012, Victorian Equal Opportunity and Human Rights Commission, at http://www.humanrightscommission.vic.gov.au/index.php/our-resources-and-publications/reports/item/184-held-back-the-experiences-of-students-with-disabilities-in-victorian-schools-sep-2012

xi Ibid, p.73

xii Gordon, J., Victorian schools not inclusive for students with disabilities: report, The Sydney Morning Herald, 17 April 2016, See http://www.smh.com.au/victoria/victorian-schools-not-inclusive-for-students-with-disabilities-report-20160417-go8d10.html

xiii Szczerba R., Exploring a New Business Model for Autism, see http://www.huffingtonpost.com/robert-j-szczerba/exploring-a-new-business-b7735200.html