The aspirations of the autism community in Victoria have guided development of this plan. Between February and April 2018, the Victorian Government held more than 20 consultation meetings and conducted an online survey of 787 people in the autism community.
The government held six workshops to hear from people in the autism community:
- education – 15 February 2018
- health and mental health – 21 February 2018
- employment and pathways to employment – 1 March 2018
- housing, justice and parenting – 6 March 2018
- diagnosis, and integrated and coordinated services – 14 March 2018
- rural and regional issues – 5 April 2018.
These workshops were attended by autistic people; parents and carers; advocacy groups; peak bodies; disability service providers; health, allied health and education professionals; researchers; and representatives from Victorian government departments. In total, 115 people participated in one or more workshops, including about one in six who identified as autistic or as a family member of an autistic person.
Key issues raised by participants across all the workshops included:
- the importance of engaging people with lived experience of autism in the planning and delivery of all services for autistic people
- the need to treat each autistic person as an individual, requiring personalised support and services at all stages of their life
- the importance of early diagnosis and intervention
- ensuring there is access to information on services and support that is appropriate in content and style for autistic people and their carers at all stages of life, particularly during transition points such as school entry and seeking or starting work
- increasing the understanding and capability of workforces that interact with autistic people
- ensuring that services provided to autistic people are integrated to meet their needs
- improving data collection on services needed by autistic people and the performance of those services
- increasing community understanding of the needs of autistic people.
Many of the workshop participants also commented on the value of having networks for sharing information, including the workshops as a valuable part of this information-sharing process.
Targeted meetings and focus groups
The government conducted 14 targeted meetings and focus groups to gain a deeper understanding of issues affecting autistic people in Victoria. These included:
- participants at Araluen support service (facilitated by Amaze) – 15 March 2018
- Behaviours of Concern Peer Action Group (facilitated by VALiD) – 15 March 2018
- participants at Annecto David House support service (facilitated by Amaze) – 19 March 2018
- Victoria Police Disability Portfolio Reference Group – 27 March 2018
- Olga Tennison Autism Research Centre – 4 April 2018
- LGBTI+ issues (hosted by Spectrum Intersections) – 5 April 2018
- Victorian Children's Council – 6 April 2018
- culturally diverse communities (hosted by Action on Disability within Ethnic Communities) – 11 April 2018
- Office of the Public Advocate – 18 April 2018
- Commission for Children and Young People – 20 April 2018
- women and girls with autism (hosted by Yellow Ladybugs) – 18 April 2018
- Aboriginal communities (hosted by the Victorian Aboriginal Health Service) – 30 April 2018
- Office of the Disability Services Commissioner – 1 May 2018
- members of the Victorian Public Service Employees with Disability Network (The Enablers) – 4 May 2018.
Advisory group members distributed an online survey to enable a broader range of people in the autism community to have a say on the topics covered in the workshops. Of the 787 people who completed the survey, 116 (15 per cent) identified as an autistic person and 598 (76 per cent) as a family member or carer. Almost one-quarter (24 per cent) of respondents (189) were from a rural or regional area of Victoria.
Ninety-three per cent of respondents chose to provide information on the level of difficulty experienced or help needed doing various activities of daily living. This question was adapted from a standardised indicator of disability status developed at the Australian Institute of Health and Welfare. Fifty per cent of respondents indicated that they (or an autistic person they care for) had a limitation in one or more activities. This included 82 with profound limitation and 196 with severe limitation.