Being realistic about inclusion: What’s realistic for young people with disability?

    Being realistic about inclusion: What’s realistic for young people with disability?

    First published in the Bulletin for Learning Difficulties Australia: www.ldaustralia.org

    This article has been co-written by Mary Sayers, Chief Executive Officer of Children and Young People with Disability Australia (CYDA); Sue Tape, Project Co-ordinator - Inclusive Education at CYDA; and two young people with disability, Poppy Mullins and Xander Wroblewski. It provides a focus on young people with disability in the school system, and summarises a roadmap for changing what is taken to be ‘realistic’ – accompanied by a wealth of links to relevant resources.

    What has to change for students with disability, and why?

    COVID-19 has had a significant impact on the educational experience of students with disability. 2020 brought social isolation and constrained access to supports and services. The sudden change to remote learning made it extremely difficult for schools to provide reasonable adjustments for all students.

    2021 layered on challenges in getting vaccinated, continuing social exclusion, mental health deterioration, and for some, National Disability Insurance Scheme (NDIS) plan cuts.

    Students who have completed their education since 2019 have not had the same access to careers counselling, work experience, open days, employment fairs and other pivotal pieces of the post school education and employment puzzle.

    2022 has not been the hoped-for reset. For many, as COVID persists – compounded by staff shortages and the impact of a fractured school experience – the educational challenges continue to weigh on students and their families.

    Changing perceptions: transforming the impossible to the possible

    For students with disability, it was anticipated that 2022 would be a year of renewal and fresh starts.

    Rather than being offered messages of hope, however, many students with disability and their families report that they have been confronted by reductive communication from schools. CYDA carried out an Education Survey in 2022, and has also been collecting comments from family consultations and social media posts. The common themes that emerged have reflected reductive perceptions of what is ‘realistic’.

    “You need to be realistic about what’s possible for your child.”

    “Realistically not every child can go to their local school.”

    “Realistically, I will sort out all the other students first and then get to you.”

    Phrases like the ones above may have intensified with the pandemic, but they have typically greeted students with disability and their families from birth. They are comments that reflect low expectations and societal views on the potential of children with disability that entrench ablism in all facets of our community, including education.

    Adult disability advocates, Norman Kunc and Emma van der Klift (2019), similarly reflect on these types of attitudes and statements:

    “When we say something isn’t realistic, what do we really mean? What are we actually trying to say? ... the source of injustice to disabled people – is that when we use the phrase ‘not realistic’, we transform ‘I don’t know how’ into ‘It’s impossible’.”

    Support for students with disability: CYDA and the Australian Coalition for Inclusive Education

    Australian Coalition for Inclusive Education (ACIE) is an initiative bringing together organisations that share a commitment to advance inclusive education in Australia and across State and Territory education systems including government and non-government schools. Children and Young People with Disability Australia (CYDA) is Chair of ACIE and a national co-Convenor, together with All Means All – The Australian Alliance for Inclusive Education (All Means All).

    One of the resources available from ACIE, released to help realise inclusive education in Australia, is a publication entitled Driving change: A roadmap for achieving inclusive education in Australia.

    The roadmap has two key sections:

    1. The six key outcomes (or pillars) that need to occur if inclusive education is to be achieved, stepped out over the next 10 years; and
    2. The key levers for change needed to realise these outcomes.

    The six ‘pillars’ are as follows: 

    1. Ensure inclusive education
    2. Phase out segregated education
    3. Increase educational outcomes
    4. Stop gatekeeping and other discrimination
    5. Eliminate restrictive practices
    6. Prevent suspensions and expulsions

    The ‘key levers’ to realise its vision for change range across the following areas:

    • Student agency and voice
    • Policy and legislative change
    • Monitoring and accountability
    • Parent education/support
    • Teacher education
    • School cultures for inclusion

    These pillars are drawn from the evidence-base and embed the rights of students to education as set out in the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) and General Comment No. 4 (2016), which explains the normative content of Article 24 of the CRPD.

    There is clear information to attest to Australia’s lack of compliance with the CRPD and a mandate to make recommendations for change. The report Disability Rights Now 2019: Shadow Report to the United Nations Committee on the Convention on the Rights of Persons with Disabilities (CRPD) reviews Australia’s progress (or lack thereof) in implementing the CRPD.

    Each of the pillars are interrelated to each other and in many instances, the current gaps in policy and practice lead to compounding impacts for students with disability. Community attitudes, structural barriers, and culturally entrenched practice are significant barriers that need to be called out, addressed and regularly reviewed.

    Example reflective prompts for students and families for each key lever:

    Student agency and voice: How does the school gather student views on their own experiences? Are students with disability supported to talk about their experiences? 

    Policy and legislative change: Does the school discuss with families/carers and students the Disability Standards for Education (DSE), and what the child’s rights to reasonable accommodations and adjustments are? Does the school refer to any specific policies on inclusive education? Is it discussed in meetings? 

    Monitoring and accountability: What data are recorded about students and how is this shared with families/carers and students – individual, class or school? 

    Parent education/support: Does the school Parents and Friends or other family/ carers bodies discuss and reflect on inclusive education and how it is tracking on inclusion? Does the school support families/carers to connect with other families at the school who also have students with disability?

    Teacher education: Does the school talk about professional development in the newsletter or principal’s report at the family/carers bodies? Do teachers show an understanding of how to include the student and family? Do teachers talk about how they modify the curriculum? 

    School cultures for inclusion: How do families/carers and students recognise and celebrate success and effort by student, educators and school? Are the student and family made to feel welcome at school – by school staff and other families and students? 

    A stepped approach to making progress to realise inclusive education 

    The ACIE Roadmap has a 10-year vision for change, moving from the current state where students are both segregated in special schools and classes or enrolled in mainstream setting, towards inclusive education. Inclusive education is not about mainstreaming, it’s about transformation! Inclusive education is a signpost for the type of society we want in the future. Separating students from their non-disabled peers does not lead to good outcomes in the long-term. 

    Students are more likely to have poorer educational outcomes and face challenges to secure open employment. This has been termed the polished pathway from segregated education to segregated employment with people with disability still paid as little as $2 per hour. 

    Often, we hear that many children are supposedly too complex or “too disabled” to attend their local school. This is a cycle of misinformation, based on outdated views of what is best for students with disability and ignores what some exemplar schools are currently doing. 

    We hear and recognise the fears of families currently in or just out of the system. People are fearful of what “mainstreaming” would mean. This is not what we are asking for. Just closing down special schools without transforming local primary and secondary schools to be more inclusive would also do students a massive disservice. 

    Teachers need smaller classes, more time to plan, in-house access to supports and expertise and more support from the system. 

    We also need to address the misnomer of “parent choice”. If your local school is not prepared or equipped to provide and support your child to learn with their same age peers successfully and safely, then going to a special school is not a choice. It’s a compromise or coercion. 

    We need to have a National Inclusive Education Plan and actions to get us there in a sensible timeframe. Let’s imagine the future in 10 years’ time for children and young people with disability: 

    • From birth or when disability or developmental delay is first identified, families are encouraged and supported to strive for inclusion in their local community, and to make early childhood education and care the first step of an inclusive education alongside their non- disabled peers. 
    • Students learning alongside children and young people with disability understand that disability is something to be celebrated as part of our society. 
    • Families with non-disabled children understand that all students do better when there is full inclusion. 
    • Students with disability are not seen as a problem, and all schools have the right funding, support, training and cultures for inclusion.
    • We have high expectations and believe all students can flourish with the right adjustments for their education. 
    • That students leave their school education with options for education and employment knowing that society understands their value and there are pathways to an independent life. 

    However, what we have now is an educational divide, and we need a plan to bridge that divide, where all stakeholders work together to agree on the transformation to an inclusive schooling system for everyone. 

    Young people’s voices about inclusive education 

    Levers for change: Empowering students 

    One of the key levers for the change needed across education and community attitudes is enabling and empowering students. The concept of student agency is rooted in the principle that students have the ability and the will to positively influence their own lives and the world around them. Article 21 of the UNCRPD – Freedom of expression and opinion, and access to information supports the need to ensure that persons with disabilities can exercise the right to freedom of expression and opinion. 

    We hope that the aspirations and goals of young people with disability play a key role in the shape of the new Federal Government, the outcomes framework of Australia’s Disability Strategy 2021-2031 and the future recommendations from the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability  including: 

    • recognition of the key role of student agency and voice in preventing violence, abuse, harm and neglect of students with disability, 
    • greater effort to involve students with disability in democratic processes at the national, regional and state/territory and school levels incorporating student voice in educational policy and practice, 
    • leadership on systems and schools to provide accessible information that allows students to safely learn about their rights and the process to complain, 
    • investment in schools and systems to seek feedback from students and ex- students with disability about what works, especially from those with complex communication needs and intellectual disability, 
    • development of a national inclusive education plan that recognises the impact that clear systems and processes for harnessing student voice and encouraging agency can have on ensuring an inclusive education. 

    Poppy’s voice 

    Inclusivity and Reality - Deconstructing the “One Size Fits All” Approach 

    There has been an emphasis on practical implementations of inclusivity directed at education providers, and while this is a starting point, we need to think about how we approach these implementations. 

    The focus should not just be on the practical solution but the way that the solution is communicated. Too often in the disability sector, a lack of clear communication impacts heavily on the educational outcomes of a young person as was my own experience in high school. 

    The support I required from the special education unit at my mainstream school was the provision of a teacher’s aide to assist me with the technology I required. The head of the unit imparted that I should increase my independence. Now I am not suggesting that young people with disability should be cloistered. What I am saying, is that the method used for gaining “independence” robbed me of mine. 

    I was assigned a well-meaning aide but one who was uncomfortable with technology. This culminated in my goal of high achievement being jeopardised, creating a cycle of frustration. It was only through a third-party intervention that I was able to express my difficulties and adjustments were made. 

    Had I had a chance to clearly state my educational goals earlier with all responsible for my support present, then my independence as a student would have been fulfilled. As it was, my education was blocked by the veiled ignorance of a one size fits all approach; refusing to consider the nuances of my independence as a student. 

    It is not enough to focus on structural inclusions, or the provision of alternative curriculums for those that need. All stakeholders in a student’s life need to fully discuss and develop a plan of action for educational achievement regardless of disability. 

    A barrier faced in the implementation of this practice is lack of time for preplanning. All involved should conduct meetings with students to discuss the supports required for achievable, equitable educational outcomes. This process should be reviewed often. Inclusive education providers must lobby the State Government to ensure appropriate funding is provided. 

    This may appear excessive but with 10% of Australian school-aged students living with disability, inclusivity cannot be side-lined (Australian Institute of Health and Welfare, 2020). It is time for inclusivity in education to be more than a political buzzword. 

    Xander’s voice 

    As a year 10 student and a participant of the National Disability Insurance Scheme (NDIS), the term ‘inclusion’ has been a word I have grown up hearing a lot. Schools state they provide an inclusive education in line with the Disability Standards for Education. I see lots of examples of this, however I think there could be stronger action to improve on their efforts. 

    My experience with inclusion in high school has been successful and a big improvement from my primary years. I think it is because they welcome consultation and always follow through with action. I also believe it is because at my enrolment interview, I spoke about why (despite claiming to be) I did not feel, I was valued or included at primary school, as a student with a disability. 

    I acknowledge the education system works very hard at inclusion, but I want more action on problem solving the areas in which it falls short. Firstly, I’d like to address the inability of the education system to provide the individual level of support required by ALL students with disability. I think it is short sighted of the Federal Government to provide funding for disabled children through the NDIS and not provide adequate support for them at school. This is just crazy when kids spend most of their time at school and the Federal Government’s contribution toward those who are verified, does not cover the needs of these children. This lack of sufficient funding to support children with disability at school, directly impacts on their inclusion. 

    Yes, I know talking about this just gets both levels of government blaming one another, but gee, just think; for the benefit of all, wouldn’t it be great if our new newly formed Federal Government could step up and learn to consult and negotiate with integrity with the state and territory governments? Is it not time for a cohesive redesign of policies, at both the state and federal level? 

    Without changes to funding models that provide adequate support for ALL students, there will always be issues with inclusion. 

    Now let’s think about when and how decisions are made in the wider education system and daily in our schools. I would like to see what I call ‘inclusive decisions’. All decisions, whether they are around the school’s implementation of the curriculum, class planning or excursions, needs to consider ‘inclusion’ prior to them being made. In many cases decisions are acted upon or announced without any, or little consultation with support staff or other relevant stakeholders. What some schools call ‘consultation’ is more of a discussion, as the decision itself, has already been made. 

    When decisions are made without adequate, timely consultation or thought of inclusion, it sends students with disability one very loud message. Although unintentionally, it tells us that we are not valued members of our school community and are in fact, a burden. 

    Without demonstrating a process of making ’inclusive decisions’ and providing funding for adequate and individual support for students with disability; there can be no claim of providing an ‘inclusive education’. 

    About the contributors 

    Mary Sayers (she/her) joined Children and Young People with Disability Australia (CYDA) as Chief Executive Officer in July 2019. Over her career she has worked across policy and research, advocacy and service delivery to progress positive outcomes for children and young people, and the broader determinants of social wellbeing. She has family experience of disability as a parent and is a passionate advocate for the rights of children and young people. 

    Sue Tape (she/her) joined CYDA in April 2020 and her work is all about education – early childhood and school. Sue is building an inclusive local community around her family and is excited about the opportunities to share CYDA’s work, connect with other families and be a force for change. 

    Poppy Mullins (she/her) is an aspiring writer and advocate with quadriplegic cerebral palsy. Poppy currently works for both CYDA and as a member of the ACIE’s Youth Working Group project. Poppy was also a member of the co-design committee for CYDA’s inaugural National Youth Disability Summit in 2020 and appears here in CYDA’s LivedX series. 

    Xander Wroblewski (he/him) is a 15-year-old high school student with Ehlers Danlos Syndrome and a proud member of the LGBTQIAP+ Community. Xander is passionate about advocating for all people with a disability, especially his peers, within the education system. Xander has recently co-hosted CYDA webinars ‘Inclusion in early childhood: when and where do we start?’ and ‘Early intervention and inclusion – can we do both?’.  Xander also shared his tips for early intervention for families of young children, based on his lived experience. 

    If you have any queries about this article, please contact Sue Tape (CYDA’s Project Coordinator for Inclusive Education) at This email address is being protected from spambots. You need JavaScript enabled to view it.. 

    References 

    Mann, Glenys, Cuskelly, Monica, & Moni, Karen (2015) Choosing a school: parental decision-making when special schools are an option. Disability and Society, 30(9), pp. 1413-1427. From https://eprints.qut.edu.au/129222/ 

    Inclusion Australia (2022) Equal Pay, Equal Respect, Federal Election 2022 Platform, p. 9. From https://www.inclusionaustralia.org.au/wp-content/uploads/2022/05/Equal-Pay-Equal-Respct-Federal-Election-2022-Platform-Inclusion-Australia.pdf 

    Australian Institute of Health and Welfare. (2020). People with disability in Australia. From https://bit.ly/3bhP7Yw 

    Kunc, N. & van der Klift, E. (2019). Being Realistic Isn’t Realistic: Collected essays on disability, identity, inclusion and innovation. Telwell Talent. 

    Sayers, M. (2022) Evidence, page 199, transcript of proceedings, Public Hearing 24, Wednesday, 8 June 2022, The Royal Commission Into Violence, Abuse, Neglect and Exploitation Of People With Disability. From https://disability.royalcommission.gov.au/publications/transcript-day-3-public-hearing-24-canberra 

    DPO Australia. (2020). Segregation of People With Disability Is Discrimination and Must End, Position Paper, September 2020, Disabled People’s Organisations Australia (DPO Australia) and 38 disability rights and advocacy organisations including CYDA. From https://dpoa.org.au/endsegregation/ 

    Links 

    1. The Australian Coalition for Inclusive Education (ACIE) ‘Driving change: A roadmap for achieving inclusive education in Australia’ 

    2.  Australian Coalition for Inclusive Education 

    3.  Disability Rights Now 2019: Shadow Report to the United Nations Committee on the Convention on the Rights of Persons with Disabilities (CRPD)

    4.  Article 21 of the UNCRPD 

    5. Australia’s Disability Strategy outcomes framework

    6. Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability  

    7. National inclusive education plan as shown in CYDA’s 2022 Federal Election Platform 

    8. Disability Standards for Education 

    9. LivedX Series

    10.  ‘Inclusion in early childhood: when and where do we start?’ 

    11. ‘Early intervention and inclusion – can we do both?’ 

    12. Xander’s tips for early intervention 

     

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    2020 Review of the Disability Standards for Education 2005

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    Article: Governments urged to prioritise Victorians with disability during second COVID wave Advocates warn of "tragic outcomes" if proper planning is not undertaken

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    Once again no planning for children and young people with disability during the COVID-19 pandemic

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    Podcast: Left behind: remote learning while living with disability By Hilary Harper on Life Matters

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    Disability Royal Commission - Response to Criminal Justice System issues paper

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    Article: 'One of the most difficult times we've ever experienced': Students with disability struggle during pandemic

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    Not even remotely fair: Experiences of students with disability during COVID-19 - Full Report

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    Not even remotely fair: Experiences of students with disability during COVID-19 - Summary Report

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    Not even remotely fair: Experiences of students with disability during COVID-19 - Summary Report

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    Almost half of students with disability denied key school supports during pandemic: New research reveals

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    Article: Only one fifth of school students with disability had enough support during the remote learning period

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    Senate Select Committee on Autism inquiry

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    ACIE Driving change: A roadmap for achieving inclusive education in Australia

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    Urgent action needed to support Victorian children and young people with disability  during COVID-19 lockdowns

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    More than isolated’: COVID-19 compounds inequities for children and young people with disability

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    Inquiry into the Australian Government response to the COVID-19 pandemic

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    Webinar – NDIS and COVID-19 information for families and young people (NDIS participants 18 - 25 years and beyond)

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    Don’t leave our kids behind: Families of kids, young people with disability concerned about new intensive care coronavirus guidelines

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    The right to inclusive education must not be contested by the Disability Royal Commission at the first hearing commencing in Townsville today

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    The right to inclusive education must not be contested by the Disability Royal Commission at the first hearing commencing in Townsville today

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    Aussie schoolkids with disability excluded segregated bullied and robbed of education

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    Restrictive practices authorisation in NSW

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    National education evidence base issues paper

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    Royal Commission into Institutional Response to Child Sexual Abuse consultation paper best practice principles in responding to complaints of child sexual abuse in institutional contexts

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    Willing to work: National inquiry into employment discrimination against older Australians and Australians with disability

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    Royal Commission into Institutional Responses to Child Sexual Abuse issues paper 9 addressing the risks of child sexual abuse in primary and secondary schools

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    Hear our voices - current levels of access and attainment for students with disability in the school system and the impact on students and families associated with inadequate levels of support

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    Royal Commission into Institutional Responses to Child Sexual Abuse issues paper 8 - experiences of police and prosecution responses

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    National Disability Insurance Scheme quality and safeguarding framework

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    CRPD general discussion on the right to education for persons with disabilities

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    National framework for protecting Australia's children (2009 - 2020)

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    Equality capacity and disability in commonwealth laws

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    Enabling and protecting: Proactive approaches to addressing the abuse an neglect of children and young people with disability

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