Feature Issue on Transition in a Global Context for People with Intellectual, Developmental, and Other Disabilities

Adam Dickson volunteers at a community farm.

The former Australian Prime Minister Scott Morrison drew public criticism this year for remarks that many observers believed were fundamentally ableist. He subsequently apologised, but the negative attitude regarding disability is widespread here. It is a major reason why many Australian public policies, programs, services and supports are inadequate and do not afford people with disability equal opportunities or their human rights.

Low expectations regarding abilities and aspirations for people with disability are extremely common. Segregation occurs often in education, employment, community settings, and housing. The experience of post-school transition for people with disability very much reflects these circumstances.

Post-school transition in Australia refers to the process in which young people can access information and make decisions about their lives after leaving school. The options are continued education; open employment (known elsewhere as mainstream employment); supported employment (sometimes referred to as sheltered workshops); day programs; community day centres; transition and employment programs; volunteering; individual programs; and unemployment.

It is a highly variable experience. Done well, young people receive information, work experience, options, assistance and expertise from their school and other community sources.

Too often, this is the exception. When I served as chief executive of Children and Young People with Disability Australia (CYDA), poor transition experiences were often reported to CYDA and significant systemic inadequacies were evident. This led us to seek funding in 2015 for a project to analyse legislative and policy frameworks, programs, and the lived experiences of young people with disability.

The project, Post-School Transition – The Experiences of Students with Disability, found that these experiences are typically poor and inadequate, reflecting systemic disadvantage. It is common for students with disability, families, and schools to have difficulty accessing information about options, the project found.

Some good transition programs and practices exist, but these are not consistent in quality and geographical location. A key reason for this is there is no clarity as to who is responsible for post-school transition. It doesn’t lie specifically with either the federal or state governments. It also sits within different policy and program areas – disability, education, and employment.

A key finding of the project was that students with disability had better outcomes if their families provided strong advocacy and support and had community connections. Many others left school with no plans for the future and become isolated, dependent, and impoverished. (Children with Disability Australia, 2015)

Little has changed since the report was released. Australia has one of the most enviable disability services and support systems in the world, the National Disability Insurance Scheme (NDIS). Supports and services have increased in number, but the transition process remains highly variable across the country and responsibility for implementation is unclear.

My son Adam’s experience of post-school transition demonstrates the precariousness, and also the critical role family can play, particularly for people with intellectual disability and very high communication and behaviour support needs. There is no doubt that without my experience and expertise, and the broader advocacy and support of our family, Adam would have been destined for a life of limited opportunities and segregation.

Adam is 22 years old and lives at home with our family. This includes his two siblings, Danny, 23, and Charlotte, 17, along with his parents. His older brother Josh, 25, lives in regional Victoria. We live in inner city Melbourne. Adam likes being active and really enjoys family life, travel, swimming, food, music, art, and screen media.

Adam has significant communication and behaviour support needs, and we have advocated strongly for his participation in family life and the broader community. His life has very much been characterised by an experience and expectation of inclusion.

Our expectations around transition were no different. We knew employment would present significant challenges, but were adamant that his life after school must be informed and based on his interests, be inclusive, and enable him to meaningfully participate in the community.

Adam’s inclusive education paved the foundations for a rich post-school life. We were fortunate to have local schools willing to work with us as a family, which allowed Adam to attend, learn, be enriched, and be a valued contributor to his school. It also meant that he developed relationships with peers and others in the community. These connections are critical to forming pathways within and beyond the post-school transition process.

Initially, Adam attended a segregated school. We were informed that this was best for him, despite him attending the local preschool, and it was presented as the only option. He was overwhelmed by low expectations and was very unhappy in this environment.

A telling moment was when his teachers summoned me to a meeting after I had said I thought Adam, then 6 years old, may be bored at school. In his presence, they told me how incapable Adam was as they asked him to undertake a learning task I knew Adam had been doing since Kindergarten. Adam put the learning task in the rubbish, looked me in the eye, and said “car – home.” The teachers told me this was a clear demonstration of what little understanding I had of how “impaired” he was. For me, it was the moment I became determined to send him to the non-segregated school, where he did complete the remainder of his primary and secondary education. This required vigilant advocacy by us as his parents, and his siblings played a strong role along this journey.

Had he stayed at the school for students with disabilities, Adam would have spent significant time travelling. This would have left no time for other regular childhood activities after school, such as getting to know other children, joining clubs, sport, or even just simple things like playing in the park or going to the shops near home. Many people know Adam in our neighbourhood through him just being present. He has developed relationships and connections.

Adam has people in his life who are what I think of as “life changers.” His secondary school principal, Linda Mitchell, is one of these people. Her commitment and expertise in adjusting curriculum and navigating the school system made an inclusive high school education possible for Adam, and her community connections created additional opportunities. She was constant in her view that the school was greatly strengthened through having Adam as a student.

The typical school transition process at our local school provided rich information, mostly about further education or work training pathways. It was thorough, but was of little relevance to Adam.

The post-school coordinator said she had little knowledge of what options existed that would be accessible and meaningful for Adam. It was not because she didn’t see it as important, but more a reflection of the reality that there aren’t clear pathways. She provided me with a list of about 15 options. Around 10 were situated in segregated settings and the others didn’t reflect what he was interested in, such as literacy classes at the neighbourhood house.

I carefully considered Adam’s strengths, what he enjoyed, and how he could be supported. Adam likes to be busy and have a routine. How long he participates in a task can be variable.

We thought about the places and people Adam and our family had developed connections and relationships with during his childhood. I researched options for participating and volunteering in the community. I met often with the school principal, who suggested contacts and options or brokered introductions in the community she thought may provide rich opportunities for Adam. He then met people, visited places, and tried different experiences.

Today, Adam is engaged in an inclusive, meaningful life that includes personal training, music lessons, art, and six volunteer jobs each week. The volunteer tasks vary in time commitment, and that flexibility is important as his interests change or opportunities arise. He volunteers at CYDA, Disability Discrimination Legal Service, the local outdoor bowling club, his former high school, a thrift shop, and at a community farm.

Funding from the NDIS is critical, as it means that Adam has access to significant paid support to go about his life. I undertake “self-management” of his funding package. This has enabled us to employ a range of people of similar age to Adam. The relationships with his support workers are critical. Most have worked with him for years, and the few that have left are still in his life and keep in contact as friends.

None of this was simple. Often, the initial contact for involvement for volunteering is met with a genuine disbelief that Adam can contribute to an organisation. We constantly need to work through misconceptions that an organisation is doing Adam a favour by allowing him to volunteer. Some suggested Adam volunteer in only disability specific programs. We patiently explain and educate about the value of inclusion.

It is a constant process of education by Adam and our family that with the right supports and attitude, there are great outcomes. This includes a genuine recognition by those Adam gets to know that he makes a valuable contribution. We remain vigilant in our advocacy for Adam to have an inclusive and meaningful life, and everyone is richer for it.

References

Children with Disability Australia. (2015). Post school transition: The experiences of students with disability. https://cyda.org.au/search/details/85/post-school-transition-the-experiences-of-students-with-disability.