Submission from I CAN Network

Submission No 127

INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER

Organisation: I CAN Network

Date Received: 22 April 2016

Submission S127 Received 22/04/2016 Family and Community Development Committee

COMMUNITY PARTICIPATION & THE ROLE OF GOVERNMENT

‘All over the world, people with all kinds of differences are telling you what they need you to do to include them, and what they can offer the world. If you listen well, open your mind to a different way of experiencing the world, and learn as much as you can, the journey towards becoming an inclusive society will finally be clear and attainable’

Christian Tsoutsouvas, 21-year-old on the Spectrum and Network Leader, I CAN Network

Recommendation 1: That Government deepen its relationships with grassroots programs that are directly building up the voices and skills of Victorians on the Autism Spectrum.

We believe the single greatest thing that Government could achieve from the Committee’s Inquiry is sending a signal to the community that it will pursue, at all levels, greater space for people with Autism to inform government decisions made on Autism services. This Inquiry is a great springboard for Government to not only recognise the great capacity of people on the Spectrum to serve the community, but also to directly speak with and listen to people on the Spectrum.

Victorians on the Autism Spectrum hold all the answers to increasing the community participation of their peers on the Spectrum. I CAN Network’s rapid growth has shown that people on the Spectrum are enterprising, innovative and when given the opportunity, can be very successful in business.

To achieve Recommendation 1, Government needs to work directly with people on the Spectrum and their organisations and encourage parliamentarians to be strong champions for (1) social enterprise and disability (2) community-driven support groups for Autism families and (2) employers backing people with Autism.

CASE STUDY: I CAN NETWORK AS A SOCIAL ENTERPRISE

The I CAN Network has set an example of how people on the Autism Spectrum can work together. The organisation is a great outlet for people on the Autism Spectrum to showcase and build on their strengths and skills that will not only be helpful for the organisation, but also their respective career. Depending on their strengths, individuals on the Spectrum can pursue the following opportunities in I CAN Network as an organisation:

• Volunteers (64 volunteers) in different parts of the organisation, where they can leverage their strengths, talents, expertise and passion to contribute to the I CAN Network
• Mentors (26 mentors) for school, university/TAFE and camp programs. We incorporate a self-sustaining mentoring model into our program where mentees on the Spectrum are given opportunities to grow into mentors. Currently we actively pay 14 young adults on the Spectrum to deliver mentoring sessions in schools and universities/ TAFEs where they use their lived experience of Autism to empower young people on the Spectrum to feel proud of their Autism.
• Speakers (12 speakers) via our speakers agency where people on the Autism Spectrum are paid to deliver talks and professional development workshops. In these sessions they talk about how hard they have worked to achieve success in their lives.

The I CAN Network has tapped into and accommodated the needs, talents and strengths of people on the Autism Spectrum to benefit not only individuals, but also the role of the organisation in the community. I CAN Network is a model that Government and State authorities can learn from to fulfil Recommendation 1

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‘In my own personal experience, a manager once said to me at my yearly review that “you deliver on time and under budget, your work is exceptional and you are always thinking outside of the box”. This was then followed by “but I’m going to have to mark you below average because of your communication skills”.

Damien Watson, 42-year-old on the Spectrum, IT professional and Senior Developer, I CAN Network

WORKFORCE PARTICIPATION AND THE ROLE OF GOVERNMENT

Recommendation 2: That Government promote initiatives that make the workplace Autism-friendly and prepare Victorians with Autism for the world of work.

Government needs to actively champion the workplaces that are benefiting from employing people with Autism. The list of these workplaces, across diverse fields, is increasingly growing. As an example, I CAN Network is increasingly being approached by companies such as Coles as well as Commonwealth authorities such as the Australian Bureau of Statistics to share our learning from being a workplace of people on the Spectrum.

Equally important is our high expectations of people on the Spectrum and the co-designed preparation of them for the world of work. Our experience as an employer has been that there has been far too much focus on putting people on the Spectrum on the books of employment agencies, rather than creating new programs that empower them to compete in the workplace and learn how to communicate their strengths.

CASE STUDY: TRANSITION TO EMPLOYMENT CUSTOMER SERVICE TRAINING

A big focus of I CAN Network’s internal professional development of its people has been customer service training. Our people have received excellent feedback from our customers when we have customised our training to their communication preferences and mapped for them a quality customer service cycle.

The popularity of our mentoring, evidenced by its growth from seven programs in September 2015 to nineteen programs in April 2016, is a testament to the great customer service skills of people on the Spectrum. Many of our team naturally have these skills. Others have worked with us to identify their challenges (such as phone communication) and manage ways around communication touchpoints that might give them anxiety.

WORKFORCE PARTICIPATION AND EDUCATION

‘The I CAN Network has helped me be more confident about the way I approach my life whenever I confront something that I think is hard’.

Anthony Hay, 19-year-old on the Spectrum and Mentor, I CAN Network

Recommendation 3: That Government promote a State-wide emphasis on programs that support the life transitions of people on the Spectrum, from cradle to grave.

Programs that build social connections

‘I have been a camp mentor at a couple of the I CAN Network camps. I enjoy being a mentor a lot, and I mostly enjoy the opportunity to give back to the network and help to give others the same positive experience I had as a camp participant’

Ben Phillips, 17-year-old on the Spectrum and Mentor, I CAN Network

Our community needs young Victorians with Autism to feel a greater sense of belonging in the community. Data from the Australian Bureau of Statistics (2012 and 2014) points to a self-perpetuating cycle that sees the Australian community miss out on the talents people on the Spectrum bring. Only 42% of Australians of Australians with Autism are employed. A

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contributing factor to this is necessarily the meagre 19% of young Australians gaining a post-school qualification. This is related to the statistic that an overwhelming 86% of primary and secondary students on the Spectrum who report ‘experiencing social, emotional and learning difficulties in schools. As outlined by the numbers, difficulties in one area of the life of a person with Autism such as education can compound the struggles later in life such as employment.

One of the informal transitional supports that young Victorians on the Spectrum need to help them progress through their developmental milestones and achieve mainstream employment opportunities is positive peer experiences that connect them with like-minded people and raise their aspirations. It’s important that these are positive peer experiences, not respite for parents and carers alone as through a person’s self-motivation they are driven to take control of their lives. This will break the cycle of being overlooked in education and in employment.

One of the strategies we have taken to make sure young people on the Spectrum know they are valued members of the community and avoid any cycle of reliance from parents or government welfare is the I CAN Network Camps.

CASE STUDY: THE I CAN NETWORK CAMPS

We run quarterly teen camps for 14-18-year-olds on the Spectrum and youth leadership camps for 18-30-year-olds on the Spectrum. Our camps instil a sense of ambition in participants by exhibiting what it means to have an ‘I CAN’ attitude and provide examples of people on the Spectrum who have overcome great obstacles to become successful.

The camp program involves the following:

• Building participant their self-confidence via outdoor activities which gives them a sense of what an ‘I CAN’ attitude is
• Establish a sense of identity and belonging via a ‘Dress to Obsess’ theme night where participants wear costumes that express their own interests. This is important as it allows them to be themselves in a safe, positive environment that accepts who they are
• Create connections and networks that can support them in the future

As a consequence of the camps, participants:

• Establish a vision/ambition that participants will work hard towards, breaking constraints along the way
• Establish new friendships and networks that decreases their loneliness and that they can fall back on in the future
• Witness the varied strengths of people on the Spectrum, lending them the appreciation that it is OK to be themselves and that their abilities can be used for good.
• Come ‘out of their shells’ and meet up with other people on the Autism Spectrum who are just like them.

Our camps have been well-received by participants that attend them as 65% participants say they would like to attend another camp and 70% participants would recommend the camp to their friends. These results show that transitional support such as the camps are a great way to derive benefits in young people on the Autism Spectrum in the long-term so that they are not reliant on parents and government and can function as independent beings who are driven by an ‘I CAN’ attitude.

Programs in higher education and training

‘I have completed school, finished TAFE, and I am now studying a Bachelor of Social Work at Victoria University. I have support from my personal ‘I CAN Network’ including my mum, my brother, the I CAN Network, university staff, some medical professionals, and my dog Scout. With persistence and resilience, I always try to think ‘I CAN’’.

Abbie Kinniburgh, 25-year-old on the Spectrum and Network Leader, I CAN Network

In our experience, we have observed that the greatest challenge to the successful transition of people on the Spectrum from higher education/ training to the workplace is their university course’s retention of them. The founders of I CAN Network were university students and graduates. One of the many reasons we chose to build the network in late 2013 was an observation that our peers were struggling through their university courses and as a result, many were dropping out before successfully attaining a qualification.

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I CAN Network has learnt that mentoring can be a very powerful transitional tool to ensuring students on the Spectrum are retained by their course and that their university benefits from embracing Autism.

Our mentoring programs allow young people on the Autism Spectrum to see and celebrate their strengths. This increases not only their self-confidence, self-awareness and self-acceptance but also builds an inclusive culture in universities and schools for students on the Autism Spectrum.

CASE STUDY: I CAN UNIVERSITIES & TAFES

I CAN Network has established student networks at Monash University, Swinburne University and Victoria University. These networks focus on self-support where students benefit from each other’s shared experiences of university life and empower each other to succeed in university. It is also a way to voice what they need to succeed from lecturers and university support staff. The group is also an opportunity to meet other students and staff on the Autism Spectrum. The more advanced of these programs, such as at Victoria University, are now paying for third year students on the Spectrum to mentor first and second year students on the Spectrum.

South West TAFE: We have experienced a lot of support from TAFEs for diverse and flexible learning arrangements for students on the Spectrum. As an example, I CAN South West, I CAN’s regional network in Victoria’s South West Coast will be delivering a centralised mentoring program for 15 teenagers on the Spectrum at South West TAFE in Warrnambool, starting in May 2016.

Programs in primary and secondary schools

‘School was a very difficult time for me, I didn’t find the I CAN Network until I was in year 12. I was always aware, or was reminded about the things I couldn’t do at school. Apart from my small family, I didn’t get much encouragement. I do remember one special teacher, Miss Pretto, who helped me a lot’.

Caitlin Downie Kempson, 19-year-old on the Spectrum and Mentor, I CAN Network

The whole education system needs to embrace a rethink of Autism, away from ‘I Can’t’ to ‘I CAN’. The system needs to promote initiatives that are building up the strengths of students and giving them greater opportunities to contribute to their school communities: in the classroom, the schoolyard and at school events. The current paradigm is focused on ‘managing behaviour’ which only addresses ‘the tip of the iceberg’ and misses the cultural change needed in schools to create the enabling environments that students on the Spectrum need to thrive.

The students that have been the most misunderstood are students who have greater support requirements and higher communication needs should they be non-verbal. We have observed that these students are given next to no space to voice their ideas or show their imaginations in their broader school communities.

CASE STUDY: THE ‘I CAN SCHOOLS’ PROGRAM

The I CAN Schools program run by I CAN Network takes a three-pronged approach to achieve cultural change: (1) it mentors students on the Spectrum (2) motivates teachers and parents to ‘go the extra mile’ and (3) educates peer groups on Autism. The end goal is to create a school community that benefits from embracing Autism, in which students on the Spectrum experience self-acceptance, social connection, self-confidence and optimism towards their future possibilities. Our secondary school programs (commonly for Year 7-11 students) are named by their student mentees. Our primary school programs (commonly or Year 3-6 students) are known as ‘Imagination Clubs for kids with big imaginations’.

The program reaches many schools and students. By the end of June 2016 we will be delivering 18 school-based mentoring programs.

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The strength of I CAN Schools is each program is delivered by two mentors, at least one of which is on the Spectrum. The mentors are trained in I CAN’s mentoring approach which has been designed by people on the Spectrum. Each mentor team runs modules within their programs that build soft skills and confidence in students on the Spectrum through a focus on teamwork, personal strengths and motivations, communication and interpersonal skills, planning and organisation, innovation and stress management. Our most successful I CAN Schools will soon be paying Year 12 leavers on the Spectrum to return to school as I CAN mentors and mentor Year 7-10 students on the Spectrum. This feedback loop is one of the main incentives for schools in buying the program.

In terms of outcomes, our internal studies on the program have found that:

• Participants feel more confident about themselves, more thoughtful on what they want to do in the future and more proud of being on the Autism Spectrum, and
• The program generates a safe and social environment where mentees can be themselves and interact with other young people, including mentors and mentees, on the Autism Spectrum

To complement the mentoring, our mentors deliver motivational presentations at year level assemblies and educational presentations at staff professional development days. The overwhelming feedback on these events is the appreciation our listeners feel to actually hear directly from people on the Spectrum.

Of note is the opportunity we have in our three specialist schools to empower students with high communication abilities to tailor the program to their peers with high communication needs. As an example, the I CAN elective at Northern School for Autism is creating a student council which will be responsible for embedding the views of students with high needs in the school community and its events.

Recently the I CAN Schools program has welcomed interest from government and corporations. The Department of Education and Training is sponsoring three public secondary schools to model the I CAN Schools program. Coles’ Store Support Centre are also creating four positions for mentees from the I CAN Schools program in the digital work experience program.

Currently Tasmania and South Australia are immersing themselves in the I CAN Schools program to see if and how they might implement it in their respective states.

Recommendation 3: That Government promote leadership on learning diversity among executive teams in the public secondary education system

‘My principal won’t take your program because she’s worried an influx of special needs students will affect her MySchool data’

Anonymous teacher in Melbourne’s western suburbs

I CAN Network is very concerned about the state of learning diversity in Victoria’s public secondary schools. Community awareness of the value of early childhood development has meant that primary schools have largely become well equipped in learning diversity. However, the paucity of programs for adolescents and young adults on the has meant that state secondary schools have not yet been able to engage with students on the Spectrum to set them up for success.

One of the indicators of the lack of readiness in public secondary schools to tap the different minds of students on the Spectrum was exposed in February 2016. At that time, we received Government funding to offer free mentoring program to three state secondary schools. Despite many positive appraisals from principals in Catholic, specialist and some state schools, it took a search to a total of nine schools to find three public secondary schools who would embrace a free mentoring program.

The reasons given from schools who refused our mentoring programs were very disappointing. The I CAN Network team would have welcomed questions on evidence and methodology, however the responses left us thinking that several schools were unwilling to do anything deliberate for students with learning differences. One teacher said that their school did not want to gain a profile in learning diversity because a public image in the area might overwhelm them and ‘affect their MySchool data’. Another wellbeing coordinator agreed there was chronic need for the program, but said ‘we aren’t ready structurally’ for a program for students on the Spectrum.

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This experience in offering a free program to public secondary schools showed I CAN Network that the issue was far more complex than just financial limitations in the public secondary system. The schools we were speaking with clearly needed a reminder of all the legislation and policies in place to champion the rights of diverse student thinkers in public education. In state education, this existing legislation is the entire basis on which a family with learning differences can rely. By contrast, families in the Catholic education system can rely on the philosophy of Catholic schools to develop the student not only intellectually but also spiritually, morally, physically, socially and emotionally regardless of who they are. Therefore, Catholic schools have an obligation to understand and meet the learning needs of students on the Autism Spectrum to ensure that they are engaged in education. In short, families with diverse learning needs require the Government to hold up and champion existing public schools who are good role models in diversity in education, in the hope that this might shift the thinking in state education.

REGIONAL AREAS AND AUTISM SERVICE PROVISION

Recommendation 4: That Government use its existing regional development initiatives/ offices to promote a community development approach towards the transitions of Victorians on the Autism Spectrum in regional areas.

Victoria has a thriving regional community. Increasingly there are social enterprises for people with a disability emerging in these communities and becoming very successful due to local appetite to support community-driven initiatives. I CAN Network has experienced rapid growth in regional towns because of a chronic lack of service provision and the appeal of our network model to a regional area. A strong example of this is in South West Victoria

CASE STUDY: I CAN SOUTH WEST

South West Victoria: Two Warrnambool investors brought the I CAN Network mentoring program to Victoria’s South West in August 2015. In a short timeframe, local state, specialist and Catholic schools developed a terms of reference in which they agreed to build a local social enterprise for students on the Spectrum. The strength of the program is that it is grassroots and community-driven. The local movement behind it has meant that the region are now running their own I CAN Camps for teenagers on the Spectrum. The goal of the program is to provide every school in central Warrnambool and Mortlake with I CAN mentors on the Spectrum by the end of 2017, after which the program will start to expand across Portland, Hamilton, Camperdown and Colac.

Inspired by the South West, the Ballarat community is creating an I CAN Ballarat social enterprise and the Wodonga/ Albury communities are creating an I CAN Ovens & Murray social enterprise. Both these regions hope to be delivering expanded I CAN mentoring programs by mid-2017.

In conclusion, through the running of programs in schools, universities, camps and organisations and the utilising of people on the Autism Spectrum, we are promoting an inclusive view of people on the Autism Spectrum, where their view of Autism shifts away from deficits-based to strengths-based. Through this ‘rethink’ of Autism, we are improving the post-school pathways and employment and wellbeing opportunities for people on the Autism Spectrum. I hope that the ideas raised in our submission will be something that the Government will take into consideration when planning for services that best utilise the strengths of people on the Autism Spectrum.

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