Act for autism. Amaze Election Manifesto. Becoming the autism state. Delivering change for autistic people in Victoria. amaze.org.

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1 2018 Victorian State Election amaze.org.au Act for autism Amaze Election Manifesto Becoming the autism state. Delivering change for autistic people in Victoria. Endorsed by

2 One in 100 Victorians are autistic. 2 Amaze: 2018 Victorian State Election Manifesto

3 85% of Australians have personal contact with an autistic person, yet only... 29% of Australians agreed that they have a good understanding of how to support autistic people. Autistic people have the lowest educational attainment and lowest employment outcomes of people with disabilities. 72% of Victorians agree more should be done to support autistic people in schools and workplaces. 3 Amaze: 2018 Victorian State Election Manifesto

4 Victorian State Election 2018 Amaze s Top 10 priorities The 2017 Parliamentary Inquiry into Services for People with ASD identified 101 recommendations to address the inequity and discrimination faced by autistic Victorians. The Victorian autism community is eagerly awaiting a commitment by government to take action on autism by releasing a fully funded Victorian Autism Plan, developed in partnership with autistic people and their families/carers. 1 Launch autism public education campaign $5m over 3 years to run the Change your reactions, change your actions campaign to improve attitudes and behaviours of the broader community towards autistic people and reduce the high levels of social isolation faced by autistic people and their families. 3 2 Autism-appropriate education Assessment and diagnosis Reduce the cost and waiting time, from referral to autism diagnosis to a maximum of 3 months, including through the establishment of a holistic state-wide diagnostic service. Fund implementation of a comprehensive autism education strategy, tracking progress and measuring outcomes throughout implementation. Commit to rolling out the new PSD funding model by the commencement of 2020 with funded programs and initiatives in five critical areas: 1) School staff capacity, 2) Inclusive school environment, 3) Family-School- Student relationships, 4) Student well being and mental health and 5) Targeted individual funding (as required). 4 Amaze: 2018 Victorian State Election Manifesto

5 4 Increase autisitic employment Reduce employment discrimination and improve workforce participation by autistic people by investing in programs to build understanding of autism as an opportunity for employers. 5 Mental Health Develop a mental health and autism strategy in partnership with autistic people, and establish a mental health and autism research fund. 6 Respond to specific needs of autistic women Build the capacity across mainstream service systems to better support autistic girls and women across their lifetime, including improved access to diagnosis and priority training for health and education professionals. 7 Create autism-friendly places 8 NDIS Make Victorian public places, tourism attractions and major events autism friendly, including sensory audits and funding for design modifications and evidence based resources to increase participation by autistic people and their families. Advocate and work with the Commonwealth Government to ensure the support needs of autistic people are being met by the NDIS and mainstream services. 9 Justice Ensure autistic people are appropriately supported throughout the justice system, and that data is collected on the number of autistic people arrested and held in Victorian prisons each year. 10 Expand autism information services Improve access to information services and resources on the NDIS, mainstream support services and community events, activities and places. 5 Amaze: 2018 Victorian State Election Manifesto

6 Delivering change for autistic people in Victoria Autism Spectrum Disorder ( autism ) is a neurodevelopmental condition which affects the ability of individuals in two main areas: social communication and interaction; and restricted, repetitive patterns of behaviours, interests or activities. Approximately 1% of the population is autistic. Currently, three times as many males are diagnosed as females. Autism is commonly present with other conditions, such as intellectual disability, epilepsy, anxiety and/or depression. Every autistic person is different, with diverse strengths, challenges and support needs. Recent research by Amaze found that: While 85% of Victorians have personal contact with an autistic person; Only 29% of Australians feel they have a good understanding of how to support autistic people. More needs to be done! This document outlines Amaze s vision to make Victoria the Autism State including a number of initiatives to ensure that the needs of autistic people are met. We have developed this document to outline how the next Victorian State Government can build on recent commitments to improve autism understanding and the participation of autistic people in all aspects of community life. For more information on each of the priority areas identified, please refer to Amaze s Position Statements at These priorities have been developed in partnership with autistic people and their families and carers. Yet only 4% of autistic Victorians and their families agree the public know how to support them. Recently within Victoria, there have been a number of inquiries directly relevant to autistic people. Amaze has welcomed the Victorian Government s initial commitments following these reviews. In particular, in its Response to the Victorian Parliamentary Inquiry into Services for People with Autism (December 2017) and in its Response to the Review of Program for Students with Disabilities (April 2016). In 2018, the autism community provided significant input over many months to develop an Autism State Plan, but it was not released before the State election. 6 Amaze Strategic Directions to 2040 and Strategic Plan

7 Amaze: About us Amaze is the peak body in Victoria for autistic people and their supporters. Amaze is a not-for-profit organisation established in 1967 that represents around 55,000 autistic Victorians. Autistic people and their families/carers are at the centre of everything we do: actively engaged and involved in our work and decision making processes. In 2015, we launched our Strategic Directions to 2040 a 25-year plan to achieve social impact where society respects every autistic person and they have real opportunities to participate and contribute. To achieve this, our three main goals are to: (1) Increase community understanding of autism; (2) Improve attitudes and behaviours towards autistic people; and (3) Create more opportunities for meaningful participation and contribution for autistic people. Amaze: 2018 Victorian State Election Manifesto 7

8 Priority 1 Victorian Autism Plan Development of a robust, sustainable and measurable 5-year Victorian Autism Plan, in partnership with autistic people and their families/carers. Amaze welcomed the Victorian Government s commitment in December 2017 to develop a 5-year State Autism Plan that will drive the inclusion, support and well-being of autistic Victorians. Following the two-year Parliamentary Inquiry into services for people with autism and the initial Government response, the autism community was disappointed that the Autism State Plan wasn t released before the election. Amaze calls on the future Victorian Government to immediately develop and release the Plan, in partnership with the Victorian autism community. The plan needs to have a clear vision and five-year outlook, and it must include autism specific funded initiatives and programs to achieve this vision. The significant engagement to date with the community (through the Inquiry and intial plan development in early 2018) has provided numerous suggestions as to what these may include. To ensure that Autism remains a high priority for any incoming Govnerment, a Premiers Advisory Council on Autism needs to be established. To deliver upon the new plan, an Autism Plan Implementation Taskforce needs to be established, within the Department of Premier and Cabinet (DPC), to oversee the whole of Government plan delivery. This Taskforce must collaborate with an advisory group of autism community representatives. The government must also invest in training for autistic leaders, ensuring their place at all tables, including within government and on boards. To embed autism as a priority across government, and ensure a long term sustainable approach, Amaze recommends the establishment of a Victorian Autism Act. It also recommends the establishment of a bi-partisan Parliamentary Group on autism to oversee data collection, autism research and service delivery, and make recommendations to government. Drawing on legislation enacted in the United Kingdom, United States and Canada, a State Autism Act for Victoria could require: Publication of an updated State Autism Plan every 5 years. Statutory guidance for mainstream and specialist services to implement the State Autism Plan. Monitoring and evaluation of the State Autism Plan s impacts. Collection, analysis and reporting of autism data, including prevalence, community attitudes and experiences across sectors. Establishment of a parliamentary group on autism The Victorian Government should also rapidly act on the recommendations from the Victorian Parliamentary inquiry to propose a National Autism Strategy at COAG. A national strategy would build on Victoria s leadership in autism and is essential to support the rights and needs of autistic people across Australia. 8 Amaze: 2018 Victorian State Election Manifesto

9 Priority 1 Victorian Autism Plan The next Victorian State Government must: Fully fund the Autism State Plan for 5 years, including: Public Education campaign to improve understanding of autism and how to support autistic people ($5m over 3 years) Establish a Premier s Advisory Council on Autism Feasibility study to establish regional centres for autism - a one-stop shop for service integration, information, support and capacity building for the autism community to be co-located within existing service locations ($250k) A workforce development strategy for building autism competencies across mainstream and autism specific workforces, with a specific focus on health, mental health and justice workforces. Monitoring and evaluating the short, medium and long term actions in the Plan, including the second community attitudes and experiences research in 2019 ($150k per year) Establishment and funding of an Autism Plan Taskforce within DPC. Autism peak body funding ($200k per year) Commitment to commence the development of the next Autism State Plan in It should also: Invest in leadership training and scholarships for autistic people ($400k per year) Establish an All-Party Parliamentary Group on Autism ($50k per year) Fund a feasibility study for the establishment of a Victorian Autism Act ($500K) Propose a National Autism Strategy at COAG ($Nil) Amaze: 2018 Victorian State Election Manifesto 9

10 Priority 2 Assessment and Diagnosis Reduce the cost and waiting time, from referral to autism diagnosis to a maximum of 3 months, through the establishment of a holistic state-wide diagnostic service. Autism assessment and diagnostic services should be readily available to all people who require them, irrespective of age, gender, locality, financial status, race or cultural identity. No child or adult should wait longer than 3 months for an autism assessment post referral. The earlier a diagnosis of autism can be made, the earlier evidence based autism-specific early intervention can commence, maximising outcomes for children, adolescents and adults, and increasing the developmental trajectory across their lifetime. Many autistic children can be reliably diagnosed by the age of 24 months, and there is general agreement that children can demonstrate recognisable autism symptoms in their first 12 months. However, data held by Amaze demonstrates that the average age of diagnosis among children (under 7) is between 49 and 71 months. For many autistic people (particularly autistic women), their diagnosis of autism may not occur until adulthood, following many years of anxiety, social difficulties, and challenges entering and maintaining employment. The barriers to accessing an autism diagnosis in Victoria have been found to include a lack of autism understanding by primary healthcare professionals, long waiting lists (particularly in regional, rural and remote areas), workforce capability, significant costs (particularly for adults, given there are no Medicare items for adult autism diagnosis) and a lack of information and support for families in navigating the diagnosis pathway. Amaze welcomed the Victorian Government s commitments (December 2017) to build the capacity of all Maternal and Child Health (MCH) nurses to identify early signs of autism and refer children for diagnosis earlier. However, a comprehensive strategy is needed to improve autism knowledge among ALL professionals involved in screening, initiating and undertaking autism related assessments. A state-wide autism diagnostic service (including diagnostic clinics within Primary Health networks) is also required to co-ordinate efficient and high quality screening, assessment, diagnosis and post diagnosis support for people of all ages. Wait times, from referral to autism assessment, should be closely monitored to measure the impact of any reforms. The significant variability within and between Australian states and territories in how autism is assessed and diagnosed must also be comprehensively addressed. Amaze has welcomed the Cooperative Research Centre for Living with Autism s (Autism CRC) development of a national diagnostic guideline for autism that promotes consistent and best practice autism diagnosis and ensures equal access to diagnosis. The final guideline is expected to be released mid The Victorian government must fund its implementation, including professional development opportunities for existing clinicians. 10 Amaze: 2018 Victorian State Election Manifesto

11 Priority 2 Assessment and Diagnosis The next Victorian State Government must: Fund implementation of the Autism CRC Diagnostic Guidelines including professional development opportunities for existing diagnosticians. Adoption of CRC Guidelines in State Education and Health systems It should also: Monitor waiting time, from referral to autism diagnosis to measure impact of reform ($70k) Develop and implement a strategy to improve autism knowledge and understanding among health professionals. ($500k) Lobby Commonwealth Health Minister to establish Medicare items for adult autism diagnosis ($nil) Establish a state-wide autism diagnostic service to co-ordinate screening, assessment, diagnosis, and post diagnosis support. ($TBC) Fund the development of ASDetect Professional, and an implementation plan, to support early identification of autism ($800k) Fund resources and information service to guide people and families seeking diagnosis and to support services and linkages ($200k) Amaze: 2018 Victorian State Election Manifesto 11

12 Priority 3 Autism-appropriate Education Fund implementation of a comprehensive autism education strategy, tracking progress and measuring outcomes throughout implementation. Commit to rolling out the new PSD funding model by the commencement of 2020 with funded programs and initiatives in five critical areas: 1) School staff capacity, 2) Inclusive school environment, 3) Family-School- Student relationships, 4) Student well being and mental health and 5) Targeted individual funding (as required). Every autistic student has the right to a quality education and to access and participate in school on the same basis as students without disability. School can be very challenging for autistic students. This is largely due to the challenges autistic students face with communication, social interactions and their unique learning styles in an environment and system that, in many ways, is not designed with their needs in mind. Often individual needs are not met and individual strengths are not recognised or harnessed for learning. Evidence shows that autistic students are significantly more likely than their typically developing peers to be suspended or excluded, targets of bullying, suffer depression and anxiety and under-perform academically relative to their level of intelligence. Autistic students should have access to an education system that provides an inclusive culture and a multi-faceted, individualised, needs based approach to learning that is tailored to their strengths and unique learning styles. Recently within Victoria there have been several inquiries directly relevant to the educational outcomes of autistic students. Amaze has welcomed the Government s commitments following these reviews to improve inclusiveness in schools, teacher training, built environments, transition support, accountability, reporting and transparency. Amaze has also welcomed the Victorian Government s commitment to develop a comprehensive education strategy for autistic students. The implementation of this strategy must be fully funded and include programmatic opportunities for identifying gaps, measuring impact of existing programs and reporting on outcomes (educational and wellbeing). Amaze is awaiting further commitment from the Victorian Government on the four recommendations to reform the Program for Students with Disabilities (PSD), these include reforming the criteria for individualised funding: to make this funding more equitable, better targeted and based on strengths and functional need. Without firm commitments to reform in this area, school will continue to be a very challenging place for autistic students, with social, learning and economic impacts into adulthood. In addition, a lack of co-ordination between the education sector and NDIS has led to significant confusion regarding the interface between NDIS funded therapy services and state funded disability support services in schools. Better co-ordination is urgently needed, including trialling of joint planning, service integration and single assessments for students with NDIS Plans and PSD funding. 12 Amaze: 2018 Victorian State Election Manifesto

13 Priority 3 Education The next Victorian State Government must: Implement and monitor the comprehensive Autism Education Strategy ($100k for annual monitoring) It should also: Roll out the new PSD Funding Model across all Victorian Schools by the 2020 School year. Trial and evaluate an expansion of the Look Out program for autistic students in schools, to build staff capacity to meet the needs of autistic students and provide a structured contact point for students/ families. ($TBC) Provide professional development to support inclusion in four-year-old kindergartens for autistic children, including early identification of autism for educators. ($200k per year) Invest an additional $20m in the Inclusive Schools Fund to provide ongoing funding opportunities. Develop additional guidance to schools to build autism friendly environments - supporting selfregulation, engagement and full participation. ($100k for guidance) Increase coordination between Education and NDIS supports and The Education Gaps In 2015, the ABS reported that: 97% of autistic students experienced educational restrictions; 44% of children indicated they needed more support or assistance at school; 35% of autistic people achieve Year 10 or below, compared with 17% of general population of students. Amaze: 2018 Victorian State Election Manifesto 13

14 Priority 4 Increase autistic employment Reduce employment discrimination and improve workforce participation by autistic people by investing in programs to build understanding of autism as an opportunity for employers. Autistic people bring a range of strengths, interests and skills to the workforce but face barriers finding, maintaining and engaging in employment. Unemployment and underemployment can result in lifelong consequences and economic costs, including loss of confidence, lowered self-esteem, increased mental illness and dependence on government and family support. A survey of Victoria s autism community, conducted by Amaze in 2016, found that only 50% of respondents had been able to find employment, with 94% reporting they had not received enough support to help find a job. In 2015, the Australian Bureau of Statistics found that the unemployment rate for autistic people was 31.6%. This is more than three times the rate for people with disability and almost six times the rate of people without disability. Autistic people currently encounter a range of barriers when seeking to enter and remain in the workforce, with the biggest barrier being employer attitudes. It is often assumed that autistic employees will be less capable, or that it will be burdensome or costly to provide any required assistance, modifications or adjustments. These views have been found to be common in surveys of employer attitudes by various disability and industry groups. Further barriers to employment for autistic people can include: Relatively low educational attainment rates; Interview processes and the social reciprocities of the workplace; Negotiating adjustments that may be required to workplace routines, workloads, access and sensory requirements; Discrimination, Harassment and Bullying; and National disability employment programs and support services failing to meet their needs. The Victorian government, in partnership with the Commonwealth government, must take immediate action to better meet the support needs of our autistic community in the workplace. Crucially, it must help employers recognise that autism is not a burden, but an opportunity, with many autistic people bringing unique strengths, skills and talents to the workplace, industry and commerce. The Victorian government must also lead by example, developing, implementing and promoting workplace opportunities for autistic people both within and outside of government, including trialling alternative recruitment/interviewing processes. 14 Amaze: 2018 Victorian State Election Manifesto

15 Priority 4 Increase autistic employment The next Victorian State Government must: Develop a strategy for showcasing the strengths of autistic employees and the benefits of an autistic workforce for employers. It should also: Develop and implement inclusive procurement practices for all Government tenders and services to promote autism and disability employment economic participation. Expand the RISE program across the VPS for another 100 autistic staff members over four years. Trial alternative hiring processes for autistic candidates, including alternate methods for interviews for 12 months with 5 private organisations. Fund the development of a free online capacity building program for employers seeking to employ autistic staff. Develop job readiness training for autistic people to communicate their strengths, skills and adjustment needs to employers. Increase autism specific school pathways/ career programs to support transitions to employment and build capacity of employers and employees to support autistic people. Commit to a % of the VPS disability employment target (12% by 2025) being for autistic people. Develop a support package for autistic people seeking qualification of TAFE Priority Courses. 31.6% Amaze: 2018 Victorian State Election Manifesto 15

16 Priority 5 Support mental health Develop a mental health and autism strategy in partnership with autistic people, and establish a mental health and autism research fund. Autistic people are at significantly higher risk of one or more co-occurring mental health conditions than the general population, most commonly depression, anxiety and obsessive compulsive disorder. It is currently estimated that 50 70% of autistic people experience a co-occurring mental health condition. However, autistic people face significant barriers when seeking to access a diagnosis and/or support for their mental health. These barriers can include a lack of autism recognition and understanding by mental health practitioners. It can also include a lack of coordination and collaboration between mental health, mainstream health, disability services and other sectors, including education, employment, justice and housing. There exists no co-ordinated approach to ensuring professionals across these sectors can access the level of autism knowledge and skills required to diagnose, meaningfully treat or facilitate the treatment of mental health conditions in autistic people. As a result, mental health services are not taking responsibility for the mental health needs of autistic people, with many mental health practitioners often assessing an autistic person s mental health concerns as simply part of their autism, and redirecting the person to disability services. As a result, mental health conditions are often not diagnosed or adequately treated, resulting in poor health, an increased risk of suicide and other poor educational, social and employment outcomes. A lack of autism understanding among mental health practitioners can also de-value neurodiversity. A patient s positive self-identity as an autistic person must be recognised by mental health and healthcare professionals as this may influence the types of mental health interventions and treatments preferred by the patient. Acknowledgement of individual preferences and self-identify are key to developing positive therapeutic relationships. Amaze welcomed the Victorian Government s commitment (December 2017) to develop a strategy to build autism competency across mainstream workforces, including mental health, to better equip them to respond appropriately to autistic people. However, a detailed strategy for autism and mental health, that aligns with Victoria s 10-year Mental Health Plan, is needed. It must focus on raising recognition and understanding of autism and mental health, ensuring all public hospital and healthcare facilities provide dedicated quiet spaces, and enhancing service collaboration and co-ordination. In developing this strategy, the government must consult and engage closely with autistic people, their families/carers and autism organisations. Dedicated funding to support capacity building and collaboration between mental health, autism, and other sector professionals and staff is also required. 16 Amaze: 2018 Victorian State Election Manifesto

17 Priority 5 Support mental health The next Victorian State Government must: Develop a detailed strategy for autism and mental health that aligns with the Victorian 10 Year Mental Health Plan. It should also: Fund a mental health and autism summit, hosted by Amaze and Mental Health Australia, to bring together mental health and autism researchers, practitioners and consumer representatives to identify research priorities, capacity building requirements and service collaboration. ($150K) Facilitate a campaign for mental health and health professionals to reduce the stigma of autism and mental health and raise community understanding. Commit $2m to establish a mental health and autism research fund. Establish a role within the Office of Professional Practice to undertake Autism Practice Leadership within the Public Health and Mental Health systems, to identify evidence based practice and build the capacity of the systems to better meet the needs of autistic people. ($300k per year) Amaze: 2018 Victorian State Election Manifesto 17

18 Priority 6 Respond to the specific needs of autistic women and girls Build the capacity across mainstream service systems to better support autistic girls and women across their lifetime, including improved access to diagnosis and priority training for health and education professionals. Women, and the parents and carers of girls, face numerous barriers when seeking an autism assessment and diagnosis, and supports and services across their lifetime. As a result, autistic women and girls are at increased risk of social isolation, abuse and discrimination. The failure to identify, diagnose and support autistic girls and women largely results from a lack of knowledge, particularly among health and education professionals, of how autism can present in autistic girls and women, compared to autistic boys and men. Historical gender bias in screening and assessment tools is also a key factor. As a result, many autistic women and girls are not receiving funding or appropriately tailored supports or services. Many autistic girls often fail to qualify for individualised funding under the Program for Students with Disabilities (PSD) due to the distinct ways autism can present in girls, compared to boys. Employers often don t recognise the strengths of autistic women or know how to support their needs. Many intervention programs/approaches are designed with the stereotypically male characteristics of autism in mind. 18 Amaze: 2018 Victorian State Election Manifesto Countless women who have received an autism diagnosis in adulthood have expressed feelings of self-acceptance and relief. Being able to connect with other autistic women through autistic women s networks and finally access appropriate services has been life changing for many. Amaze therefore welcomed the Victorian Government s commitments in 2017 to: launch a public education campaign that would include the distinct needs of autistic girls and women; and develop mentoring, peer support, advocacy and social opportunities for autistic girls and their families. However, as recognised in the Victorian Parliament s Inquiry into services for people with autism spectrum disorder Final Report more needs to be done. An appropriately funded holistic strategy for diagnosing and supporting women from childhood to adulthood (with a focus on training health and education professionals, and supporting autistic women in the workplace) must be developed in collaboration with autistic women, and included in Victoria s State Autism Plan.

19 Priority 6 Respond to the specific needs of autistic women and girls The next Victorian State Government must: In collaboration with autistic women, develop and fully fund resources and training to improve understandings of autistic women and girls (of all ages) across mainstream services, including case studies in each service system. It should also: Develop a holistic strategy for diagnosing and supporting autistic women and girls. Prioritise training and professional development for health, sexual and reproductive health and education professionals in how autistic girls and women present, including gender specific behaviours and characteristics. Monitor autistic women and girls experiences in education, employment and the NDIS. Fully fund comprehensive mentoring, peer support, advocacy and social opportunities for autistic girls and their families The estimated ratio of autistic boys and men to autistic girls and women is currently 3:1, however experts agree this may be an underestimate. Amaze: 2018 Victorian State Election Manifesto 19

20 Priority 7 Create autismfriendly places Make Victorian public places, tourism attractions and major events autism friendly, including sensory audits and funding for design modifications and evidence based resources to increase participation by autistic people and their families. Autistic people face a range of barriers to participation in community life due to a lack of autism friendly environments (including across schools, workplaces and public places). Autism Friendly Environments provide sensory sensitive physical spaces, tailored resources and trained staff who understand and can support the communication and cognitive needs of autistic people. There is robust evidence that Autism Friendly Environments can improve community access and participation for autistic people. In particular: Sensory regulation can be supported through design/ modifications relating to spatial configuration, acoustics, lighting, thermal comfort, materials, air quality and safety; and Tailored resources can be effective to support cognitive differences and reduce anxiety. For example, social scripts and visual schedules can support understanding of what to expect when visiting a place or event. They can also scaffold a person s ability to work through unexpected changes in an environment or situation. Sensory maps can support identification of high sensory (i.e. loud, busy, lots of visual stimuli) and low sensory (i.e. quieter) areas. Designing environments with the characteristics of autism in mind can not only reduce anxiety and increase participation and independence of autistic people, it can also be cost saving and benefit the wider community. Some innovative organisations across Australia, including Museums Victoria and Parks Victoria, have already taken steps to create more autism friendly environments. The Victorian Government has also applied its Inclusive Schools Fund to create sensory and quiet spaces across 88 Victorian schools. However, autistic people continue to face significant environmental barriers when seeking to access and participate in most Victorian schools, public places and events. As recommended in the Victorian Parliament s Inquiry into services for people with autism spectrum disorder Final Report, a comprehensive and government lead strategy for building and promoting autism friendly environments across Victoria is urgently needed. A review of existing barriers is required, followed by a comprehensive approach to developing autism inclusion best practice guidelines and providing funding and/or grants to community organisations and businesses (such as hospitals, healthcare settings, the MCG, Melbourne Conference and Entertainment Centre, Rod Laver Arena etc.) to ensure access and participation for all autistic people. 20 Amaze: 2018 Victorian State Election Manifesto

21 Priority 7 Create autismfriendly places The next Victorian State Government must: Develop autism inclusion best-practice guidelines for all public places, transport, tourism attractions and major events. It must also: Review the extent to which environmental barriers are restricting access and participation for autistic people, including through sensory audits and the impacts of existing building standards (in collaboration with autistic people and specialists). Support development of a social enterprise for autistic people to consult on how to develop autism friendly spaces. Provide funding and/or grants for business and community organisations to develop social scripts and sensory maps, and/or modify their environment to support venue/event access. Commit to creating quiet rooms and spaces in all public hospitals, healthcare, arts, major sporting/ concert venues. Train all public transport staff to understand and support autistic people. Work with the Commonwealth government to explore how a universal design approach across all public buildings, places and events may better support access and participation for autistic people. Amaze: 2018 Victorian State Election Manifesto 21

22 Priority 8 NDIS Advocate and work with the Commonwealth Government to ensure the support needs of autistic people are being met by the NDIS and mainstream services. The National Disability Insurance Scheme (NDIS) has the potential to be life changing for autistic people across Victoria and nationwide. The largest social reform in Australia since Medicare, it represents an outstanding opportunity to address failures in current disability care and support systems, with a fundamental paradigm shift from a rationed based system to a rights based framework. In Victoria, 25% of all NDIS participants have identified autism as their primary diagnosis. However, both the Productivity Commission s recent NDIS Costs Review and the Victorian Parliament s Inquiry into services for people with ASD, found that the NDIS is failing to identify and respond to the needs of autistic people. There is a lack of clear and consistent information for autistic people seeking to access/accessing the scheme, a lack of autism knowledge among planners and National Disability Insurance Agency (NDIA) staff, a lack of quality, consistency and transparency in planning and inadequate/inflexible funding to meet the support needs of autistic people. As the scheme continues to roll out across Victoria, the Victorian Government must work with the Commonwealth government to address these failures and ensure the NDIS is capable of supporting autistic people. Amaze recognises the NDIS is intended to fund reasonable and necessary supports associated with a person s disability, it is not intended to replace mainstream supports, such as general healthcare and education supports. However, there has been considerable confusion regarding the interface between NDIS and mainstream services, including state funded services. This has impacted upon continuity of service during roll out and led to a diminishing of services for many autistic Victorians, particularly in the areas of mental health, education, respite and housing. The Victorian Government must work with the Commonwealth government to ensure the continuity of services, that the interface between the NDIS and mainstream/state funded services is clear and that funding and services for autistic people are not diminished. Furthermore, not all autistic people qualify for individual funding under the NDIS. However almost all of these people will require support across their lifetime, in school, employment, when seeking to access their local community and/or for mental health conditions. Accordingly, the Victorian government must ensure that it is meeting the needs of ALL autistic people. 22 Amaze: 2018 Victorian State Election Manifesto

23 Priority 8 NDIS The next Victorian State Government must: Ensure that services for autistic people are not diminished and are meeting demand by: Monitoring the impacts of the NDIS on disability service provision in Victoria, and the interface with mainstream services; Investing in service development to mitigate provider of last resort issues for autistic people with complex needs and behaviours of concern; Investing in workforce development including identifying options to boost service options for regional Victorians. Provide adequate growth funding to support Victoria s transition to the full roll out of the NDIS. Advocating on the COAG Disability Reform Council to ensure the support needs of autistic people are being met by the NDIS. It should also: Support the development of an NDIS Autism Pathway for autistic people to be developed in partnership with autistic people Undertake a stocktake of existing disability programs that funding will cease in 2019 and investigate options for service continuity and expansion if gaps remain after withdrawal of funding. Amaze: 2018 Victorian State Election Manifesto 23

24 Priority 9 Justice Ensure autistic people are appropriately supported throughout the justice system, and that data is collected on the number of autistic people arrested and held in Victorian prisons each year. Autistic people are vulnerable to poor outcomes in Victoria s criminal justice system. Greater understandings of autism are needed across the whole of the justice system to ensure autistic people are understood, appropriately supported and treated fairly. While autistic people are more likely to be victims than perpetrators of crime, they can be vulnerable to involvement (or perceived involvement) in a crime for reason of their characteristics, such as poor social and social communication skills. Autistic people can also fail to understand when they are being taken advantage of, and unknowingly coerced into committing a crime. If arrested or charged with a crime, difficulties with social communication and understanding expressions can result in autistic people misinterpreting questions in interviews, failing to understand their rights or failing to give appropriate, accurate, reliable responses to the police/courts. A lack of eye contact and some stimming behaviours can also be misinterpreted and signs of guilt, i.e. fidgeting. Many lawyers fail to recognise the relevance of autism to perceived criminal behaviours or difficulties when interacting with police and courts. Within the prison system autistic people can become isolated and vulnerable to harm. Information resources and training, developed in co-design with autistic people and their families, for lawyers, police and all justice system employees are long overdue. They should aim to build knowledge about autism and the impacts various autistic characteristics may have on behaviours and a person s interaction with, and experiences in, the justice system. Amaze is also concerned by cases where prison settings are being used to hold autistic people due to appropriate settings (i.e. settings for people with disability or cognitive impairments) being unavailable. No data is currently available on the numbers of autistic people that have contact with the justice system or are incarcerated in Victoria. There is also a lack of adequate housing and support for autistic people following their release from prison. Amaze therefore welcomed the recommendations from the Victorian Parliament s Inquiry into services for people with ASD that data be collected on the numbers of autistic people interacting with the justice system, and this data be provided to the responsible Minister. Amaze also welcomed the recommendations that the Victorian government provide specific supports to autistic people while incarcerated, based on an assessment of need, and that corrections staff receive training to develop the capacity to engage with autistic people and understand their needs. The interface between the NDIS and the justice system is complex and also requires clarity to ensure autistic people do not fall between the cracks while in, and when leaving the prison system. 24 Amaze: 2018 Victorian State Election Manifesto

25 Priority 9 Justice The next Victorian State Government must: Fund the development of mandatory training modules on autism for all emergency service workers including police recruits, Protective Services Officers, Paramedics and Fire staff ($300k). It should also: Collect data on the numbers of autistic people arrested and held in Victorian prisons each year. Conduct a Literature Review of global practice for autistic people in the criminal justice system including law enforcement, courts and corrections facilities. ($150k) Develop of a Code of Practice for working with people with disability and mental health for Victorian Police ($500k) Work with the Commonwealth government to clarify the interface between the NDIS and justice system, ensuring autistic people are being held in appropriate settings, are adequately supported while in prison and can access appropriate postrelease housing and support. Amaze: 2018 Victorian State Election Manifesto 25

26 Priority 10 Expand autism information services Improve access to information services and resources on the NDIS, mainstream support services and community events, activities and places. Upon receiving an autism diagnosis and beyond, autistic people and their families/carers face a complex maze of supports and systems to navigate. Easy access to reliable information, co-designed with autistic people and their families, is essential to ensure they are able to access appropriate supports and make informed decisions. For the past 10 years Amaze has provided its Autism Information Advisor s (AIA) service as part of the federal government s Helping Children with Autism (HCWA) package. This service provides advice to parents and carers following their child s autism diagnosis, including how to access funding and support. Between July 2015 and April 2017: 26,909 contacts were made with the Amaze AIA telephone/ service, with customer satisfaction ratings of 99%. 249,452 information and fact sheets were downloaded from amaze.org.au. With the transition to the NDIS, and cessation of HCWA it was unclear how the AIA service would continue to be funded and operate. Amaze was recently awarded an ILC National Readiness Grant to pilot (over 18 months) a multichannel Integrated Autism Information and Support Service in Victoria, with a plan for national scale up. This service will provide free, independent, accessible, evidence-based autism information and support for autistic people and their families and carers. The content will include diagnosis advice, service information and referrals to community and peer support. Funding is directed towards establishing and operating the 12hr/day, 5 days/pw phone, SMS, and web chat service.amaze is seeking an additional $800k per year from the State Government to provide this service 24 hours a day, 7 days per week in Victoria. However, this service alone cannot support all the NDIS information needs of autistic people and their families/ carers. In particular, there is an urgent need for clear and accessible information resources on the NDIS and mainstream supports for all ages (including education and employment supports) tailored to the needs of autistic people and their families. Information resources about community based events, activities and places should also be tailored to the needs of autistic people. The development of these resources must occur through co-design with autistic people and their families/carers to ensure they are as clear, relevant and practical as possible. Specific resources for CALD and ATSI communities are also urgently needed and must be developed in partnership with these communities. 26 Amaze: 2018 Victorian State Election Manifesto

27 Priority 10 Expand autism information services The next Victorian State Government must: Fund the development of clear and accessible information resources on the NDIS, mainstream support services and community events, activities and places in co-design with autistic people and their families/carers (200k per year) It should also: Develop a suite of culturally specific resources for CALD and ATSI communities, in partnership with these communities. ($200k) Support the National expansion of Amaze s Integrated Information Support service to a 24/7 service. ($800k per year) Amaze: 2018 Victorian State Election Manifesto 27

28 For more information Refer to Amaze s Position Statements: a. Accessible environments for autistic people b. Assessment and Diagnosis c. Autistic women and girls d. Education e. National Disability Insurance Scheme f. Restrictive Practices g. Mental Health h. Employment Available at Contact Us: 24 Drummond Street, Carlton VIC 3053 T: F: E: info@amaze.org.au W: amaze.org.au