Proposal for the establishment of the National Youth Disability Council

A National Advocacy Voice for young people with a disability in Australia Contents 06 EXECUTIVE SUMMARY 08 BACKGROUND What is YDAS? What is AYAC? Proposal for the establishment of the National Australia’s first National Youth Disability Conference Youth Disability Council 12 THE STRUCTURE, ROLE AND INVESTMENT REQUIRED FOR A NATIONAL YOUTH DISABILITY COUNCIL A National Advocacy Voice for young people with a disability in Australia Structure Role Authors: George Taleporos, Bridie Hudson and Joshua Genner Investment required 16 THE CASE FOR A NATIONAL YOUTH DISABILITY COUNCIL Youth Disability Advocacy Service Level 2, 180 Flinders Street Why do young people with disabilities need their own Melbourne Victoria 3000 national voice? Human rights and legislative frameworks The Youth Disability Advocacy Service (YDAS) is a service of the Youth Affairs Council of Victoria (YACVic) United Nations convention on the rights of persons and funded by the Victorian State Government. with disabilities Australian Commonwealth Government National Published May 2013 Disability Strategy Further copies of this publication are available by The absence of a youth voice in the disability contacting YDAS: [email protected] advocacy landscape Generalist disability advocacy cannot adequately Electronic versions can be downloaded from represent young people with a disability www.ydas.org.au Children with a Disability Australia represents children Acknowledgement: and their parents We would like to acknowledge the young people with 28 CONCLUSION AND RECOMMENDATIONS disabilities who informed the content of this proposal as well as the sponsors of the National Youth Disability 31 APPENDIX A: WHAT YOUNG PEOPLE WITH DISABILITIES WANT Conference held in September 2012. FROM A NATIONAL VOICE A voice of our own and to be heard Our sponsors were: The Australian Government, Department of Families, Housing, Community Services, Systemic advocacy to government and Indigenous Affairs; City of Melbourne; Youth Affairs Raising community awareness Council of Victoria; State Government of Victoria; Victorian Electoral Commission; National Disability Age appropriate advocacy and Carer Alliance; Australian Youth Forum; National Direct involvement Disability Coordination Officer Program; Australian Youth Affairs Coalition; Disability Employment Empowerment Australia; Magic Mobility; Dyson Consulting; bankmecu. Geographic and disability representation 37 APPENDIX B: ADVOCACY ISSUES FACING YOUNG PEOPLE WITH DISABILITIES Housing and support through a National Disability Insurance Scheme Accessible housing Adaptive/specialised equipment Attendant support Education Lower secondary school completion rates Lower tertiary participation Discrimination within education Inadequate support detrimentally affects young people with a disability Employment Lower employment rates and income Discrimination in employment Inadequate support in the workplace Other barriers to employment Summary 52 APPENDIX C: LETTERS OF SUPPORT Disability Advocacy Network Australia People With Disabilities Australia Julia Farr Foundation Australian Federation of Disability Organisations University of Sydney 59 REFERENCES Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

Executive Summary Consistent with the Convention on the Rights of Persons with Disabilities and the Convention on the Rights of the Child, this independent youth–led advocacy voice will be driven This proposal recommends the establishment of the National and directed by young people with disabilities themselves. It Youth Disability Council (NYDC), a National Advocacy Voice to will include a wide representation of young Australians with represent and advocate for the rights and interests of young disabilities and will raise awareness of the issues faced by this people with disabilities between the ages of 12 and 25. This group. recommendation is an outcome of the first National Youth Disability Conference held in September 2012 and extensive It is proposed that the Federal Government invest $99,562 research with young people with disabilities. per year over four years for the National Youth Disability Council to operate as a national voice representing Australian The establishment of a National Advocacy Voice is young people with disability. It is recommended that the consistent with the National Disability Strategy and will serve Youth Disability Advocacy Service (YDAS) receive the funding to meet the Federal Government’s responsibilities under the to manage the establishment and operation of the NYDC in UN Convention on the Rights of Persons with Disabilities, the partnership with the Australian Youth Affairs Coalition (AYAC). Convention on the Rights of the Child and the objectives of the National Disability Strategy. The role of the NYDC will be to deliver an effective and efficient national consultation mechanism in order to promote The current approach — one organisation led by parents the views and priorities of young people with disability across to represent the voice of both children and young people — is Australia and advocate strongly to Government. not meeting young people’s advocacy needs. Young people with disabilities experience unique advocacy issues that are We are at a critical time for policy reform in Australia, distinct to those of children with disability and different to particularly in relation to disability support and education. those of parents of children with disability, therefore deserving These reforms need to occur with the interests of young specific attention through a dedicated, independent youth–led people with disabilities at the centre of policy development advocacy voice. These issues include access to housing and and implementation. The establishment of the National Youth support, and barriers to further education and employment. Disability Council is necessary for this to occur.

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ongoing funding ($150.000 per annum) from the Victorian Department of Human Services and is a service of the Youth Affairs Council of Victoria. Background What is AYAC? The Australian Youth Affairs Coalition (AYAC) is Australia’s non–government youth affairs peak body. AYAC undertakes This proposal for the establishment of the National Youth a range of activities including advocacy, research and policy Disability Council (NYDC) was prepared by the Youth Disability development, youth sector development and youth engagement. Advocacy Service (YDAS) in consultation with the Australian Funded by the Federal Government, AYAC works to: Youth Affairs Coalition (AYAC) and with strong input from young people with disabilities across Australia. yyrepresent the rights and interests of young people, and the sector which supports them, at national and What is YDAS? international levels YDAS is a Victorian wide advocacy service for young people yypromote the well–being of young Australians with disabilities aged between 12 and 25. YDAS provides one– yyadvance the participation of young people in the on–one support through our individual advocacy service and community. also works on broader issues affecting young people with disabilities through our systemic advocacy. This broader work Australia’s first National Youth Disability is directed by the YDAS steering committee whose membership Conference is made up of young people with a range of disabilities from In September 2012, YDAS brought together young people across Victoria. with a disability from across Australia for the first National YDAS has been in operation since 2006 and in this time has Youth Disability Conference. This conference was attended by undertaken extensive advocacy work on the national level. This over 150 delegates, primarily young people with a disability has included hosting a National Youth Roundtable in 2008 to aged between 12 and 25 years. Young people came from prepare a submission to the federal government about what capital cities as well as regional and remote areas as far young people with disabilities want from a National Disability away as Kalgoorlie. This event demonstrated the strong Strategy. YDAS has also taken an active role in advocating commitment that young people with disability have in voicing for a National Disability Insurance Scheme. YDAS receives their concerns about issues that most affect them within the Australian community.

8 9 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

At this conference, young people with a disability highlighted the critical need for a National Advocacy Voice that focuses specifically on the rights, needs and interests of young people with a disability in Australia, as distinct from the needs of children with a disability and separate from the voices of their parents and carers.

The Minister for Families, Community Services, Indigenous Affairs and Disability Reform, Jenny Macklin, attended Australia’s first National Youth Disability Conference and heard directly from young people with a disability about their call for a National Advocacy Voice. She invited further correspondence about this to the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA). The conference was also attended by Opposition Shadow Minister for Disability and Carers, Senator Mitch Fifield and Parliamentary Secretary for Family and Community Services, Senator Andrea Coote.

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The structure, It will meet by teleconference at least 6 times a year and will communicate between meetings primarily through email and role and investment social media platforms. The NYDC will host an annual conference to support the required for a national development of policy and systemic advocacy strategies. The conference will also include a face–to–face meeting of the youth disability council Council where policy priorities will be consolidated. It is proposed that the NYDC will be managed by the Youth Structure Disability Advocacy Service in partnership with the Australian Youth Affairs Coalition (AYAC). The NYDC will be resourced by a youth engagement and policy officer. This position will be managed by the Youth This partnership will bring significant expertise, experience Disability Advocacy Service in partnership with the Australian and networks together. As the peak body for young people Youth Affairs Coalition. The youth engagement and policy and the youth sector, AYAC will bring a wealth of expertise on officer will assist the council to undertake its day to day work, youth participation and giving voice to young Australians. YDAS including the preparation of policy submissions, research and will bring experience working directly with young people with organising meetings and the annual conference. disabilities both on a state and national level.

The council will be made up exclusively of young people with disabilities. It will include: Role The NYDC will: yya minimum of two young people with disabilities from every state and territory yyrepresent the rights, needs and interests of young people with a disability to Australian Commonwealth yyat least two people from regional/rural Australia government departments yyat least two people from a CALD background yyprovide young people with a disability with opportunities yyat least two indigenous people to inform youth and disability legislative and policy yyat least two people who identify as GLBTIQ development, for example through consultation processes and national forums yyat least two people with a learning disability. yyraise awareness within the Australian community The NYDC will elect a chairperson and other individuals to of the rights, needs and interests of young people represent them on relevant committees and working groups with a disability including the national peak representative body AFDO.

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yydevelop an active national membership base of young people with disabilities and relevant organisations yycontribute to policy development and holistic service models for young people with a disability. For the next three years, this will include a key focus on the launch of the National Disability Insurance Scheme. It will advise Government on policy, funding models and service delivery frameworks that meet the needs of young people with a disability yycoordinate and deliver a national conference for young people with a disability in Australia. At this conference, diverse representations of young people with a disability will be sought, for example, young people with a range of disabilities, cultural and linguistically diverse backgrounds and other life experiences. Investment Required The investment required is $99,562 per year over four years. A breakdown of the investment is provided in the table below.

NYDC Budget Item Investmest Salary 42000 .6 EFT Work Cover 500 Superannuation 3780 Administration/rent 7000 YDAS staff time 12480 $60/h x 4h/w AYAC staff time 5000 Website/promotion 5000 IT 2500 Staff travel & accommodation 6000 Teleconferencing 900 Member travel & accommodation 11250 Attendant care 2000 $40/h x 50h Interpreters 1152 $72/h x 16h Tota l 99562

14 15 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

The case for a National Youth Disability Council

“I want to see a national voice for young people with a This proposal has emerged from the interests and disability because it is important! We are a minority that not experiences of young Australians with a disability. The ideas, many people listen to very often, usually assuming that we recommendations and direct quotes in this proposal come know nothing and that everybody else knows what is best from three sources: for us because they have more life experience! They don’t!” yythe Youth Disability Advocacy Service (YDAS) conducted Courtney, 20, VIC an online national survey as well as email and phone “…in providing our experiences it may pave a way in consultations during January and February 2013 for showing that young people with a disability can achieve all young people with a disability to provide direct input into the goals that young people without a disability but this the proposal may be done in a different way.” Kylie, 24, VIC yythe first National Youth Disability Conference in September 2012, participants provided input at “I want for young people with disabilities what I want for all the conference and through subsequent email young people — to be empowered, engaged, supported, and correspondence valued. I would like all young people with disabilities to have the supports that they need to participate and control their yyAYAC and the Australian Human Rights Commission own life, whatever that means for them.” Connor, 18, QLD conducted an online national survey, with the results collated in the 2013 report “In Our Own Words: The Voice & Opinions of Young People with Disability.”

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“The feeling of independence is truly inspiring and invigorating” Molly, 21, NSW

Approximately 300 young people with disabilities have A National Advocacy Voice for young people with disabilities contributed to this proposal. 143 responded to the AYAC survey. would address the need for a welcoming, youth-friendly forum 42 participated in YDAS consultations, either by phone, email for young people with a disability, separate from existing parent- or the online survey. Over 100 were part of the National Youth led advocacy settings that often overlook young people’s Disability Conference. contributions and can be intimidating for many young people. Why do Young People with Disabilities need their “An opportunity to have our voices heard and to network with one another. It would also prepare and enable the next own National Voice? generation of people with disabilities to advocate for the “I’d like to see more people with disabilities involved as they rights of people with disabilities” Katrina, 21, NSW know what they’re talking about and it’ll be coming from their views” Martin, 21, WA Young people have priorities and interests that are different to parents and older people. This is most evident with respect The In Our Own Words survey found that over half of the to life choices including: further study, employment, financial young people with a disability had limited or no opportunities affairs, friendships, relationships and independent living. to share their views and opinions and 71 per cent said that they would like more opportunities to have their voices heard.1 “I believe we do face challenges but if we as young people with a disability can come up with the solutions, I think the “I think the main reason to have a National Voice is because Australian Government may take us more seriously” Marita, young people with disabilities … are often overlooked when it 24, VIC comes to making decisions about what they want and need, when they are perfectly capable of doing so… We are the experts in this, and should be treated as such” Tess, 20, VIC

1. Australian Youth Affairs Coalition (in press). In Your Own Words: The Voice & Opinions of Young People with Disability. Surrey Hills, New South Wales: Author. 18 19 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

United Nations Convention on the Rights of Persons with Disabilities

A National Advocacy Voice would enable young people with a disability to enjoy their human right to participate in “It is vital I am involved in my political and public life (Article 29) and the right to freedom decisions as overall my life of expression (Article 21) and to raise awareness of the rights needs and interests of, people with disability (Article 8 of the is the one which will receive Convention). the most impact from those Article 29: Right to participation in political and public life decisions.” Rhiannon, 14, NSW Article 29 outlines the right for people with a disability to effectively and fully participate in political and public life on an equal basis with others, including the right to form and join “The biggest challenge in any disabled person’s life is national bodies that represent their interests. acceptance from society in general. To be treated as the A National Advocacy Voice would enable young people intelligent human beings we are and given the trust and with a disability to have direct involvement and decision respect most people take for granted” Jake, 23, WA making, through strategic planning, active membership “It’s been hard to put up my hand and say yes I have a disability. and consultation processes, and direct representation to So when someone comes along and makes you feel happy government. It would further facilitate direct involvement by and they get you its pretty good to feel a part of something” accommodating the accessibility needs of young people with Georgia, 18, NSW a range of disabilities. It would provide welcoming forum for young people with a disability, separate from existing adult- Human rights and legislative frameworks focused advocacy settings that can be intimidating for some young people. The establishment of a National Advocacy Voice for young people with a disability is consistent with the United Article 8: Awareness Raising Nations Convention on the Rights of Persons with Disabilities (The Convention), which Australia ratified in 2008 and the Article 8 outlines the right for people with a disability to Convention of the Rights of the Child. It also aligns directly raise societal awareness of their rights, needs and interests. with the Australian Federal Government’s National Disability This Article outlines the two overarching benefits of awareness Strategy introduced in 2011. raising: (1) to combat stereotypes, prejudices and harmful practices against people with a disability; and (2) to promote recognition of skills, merits and abilities of people with a disability. 20 21 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

The National Youth Disability Council would raise awareness that advocacy plays a critical role in addressing barriers of the rights, skills and contributions of young people with a that impede opportunities for people with a disability to disability to the federal government by informing federal policy participate in their communities. A National Advocacy Voice development and representation in government consultations for young people with a disability would address barriers to and ministerial advisory groups. This National Advocacy Voice participation by accommodating their disability access needs would also raise the profile of young people with a disability in and providing an age-appropriate forum for their voices to be Australian communities, through effective engagement with heard by government and their communities. mainstream and social media and other systemic advocacy campaigns. In summary, young people with a disability have a right to participate in the political and public life within the Australian Australian Commonwealth Government National community, as outlined in international human rights legislation Disability Strategy to which Australia is signatory, as well as in Australian Commonwealth Government policy frameworks. The National The Australian Commonwealth Government’s National Youth Disability Council would provide an age-appropriate and Disability Strategy 2010-2020 is a high-level policy framework accessible forum for them to enjoy such rights. to guide government legislation, programs and services across mainstream and disability-specific areas of public policy.2

The National Disability Strategy 2010-2020 includes as one of its six policy areas Rights protection, justice and legislation. The critical role of advocacy is emphasised under this policy area, as a means of safeguarding the rights of people with a disability by affording them active roles in decision-making processes. A National Advocacy Voice for young people with a disability would engage in systemic advocacy to inform federal government policy relevant to their rights, needs and interests. The National Youth Disability Council would also afford young people with a disability direct involvement in higher decision- making processes that affect their lives, through active membership and providing direct representation to federal government, to inform law reform and policy development.

The National Disability Strategy 2010-2020 policy area Rights protection, justice and legislation also emphasises

2. Commonwealth of Australia (2011). 2010-2020 National Disability Strategy. Canberra: Author. 22 23 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

The Absence of a Youth Voice in the Disability Advocacy Landscape Within the context of international law and Australian Commonwealth policies recognising the right to direct participation in political and public life, there needs to be established mechanisms through which young people with disability. For example, People with Disability Australia are a disability can be directly involved and represented in a national peak advocacy organisation that advocates for Australian government decision-making processes. However, people with disability of all ages, with no particular focus on there is no existing national advocacy body that specifically young people with a disability. addresses the needs of young people with a disability aged 12 Federally funded organisations, such as Disability Advocacy to 25 years. Network Australia (DANA) and Australian Federation of YDAS, as a Victorian advocacy service, has carried out some Disability Organisations (AFDO), strengthen and support national advocacy work for young people with a disability with disability advocacy organisations across Australia and the assistance of project grants, however is not funded to do represent the voices of constituent organisations to the this important work beyond Victoria. Similarly, the Australian Federal Government. This is a critical role in informing public Youth Affairs Coalition (AYAC) has carried out once-off projects policy and strengthening existing disability advocacy bodies, specific to young people with a disability in their capacity as however these organisations have a broad focus on disability the national peak body for young people and the youth sector, advocacy. They have limited capacity to focus on the specific however they are funded to advocate for young people generally needs of young people with a disability, particularly in the rather than young people with a disability specifically. absence of an existing membership body that represents them or specific mechanisms within these organisations to Existing national disability advocacy bodies are not specific consult with young people with disability. to this age group and do not adequately involve young people with a disability. Children with a Disability Australia represents children and their parents Generalist disability advocacy cannot adequately represent young people with a disability Children with Disability Australia (CDA) is a national peak advocacy organisation that has been funded as the peak Many of the existing national peak advocacy organisations national voice for children and young people with a disability focus on people with a disability of all ages, with limited scope between the ages of 0 to 25 years and their families. However, or expertise to involve and represent young people with a

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CDA is not equivalent to a National Advocacy Voice for young people with a disability, for the following two primary reasons:

(1) CDA focuses their advocacy and core business on children with a disability aged 0 to 18 years. Young people with a disability are not children and they have different advocacy needs and priorities.

(2) CDA is a parent-led organisation and this structure limits the extent to which young people with a disability can be directly involved and heard within their organisation. with a disability. For example, the 2011/2012 Children with a Advocacy priorities differ between children and young people Disability Australia Annual Report identifies as a key advocacy with a disability area inclusive play spaces and early intervention services.3 CDA is expected to represent children and young people However there is no mention of many of the core advocacy with a disability aged 0 to 25 years. However, this extremely needs of young people with a disability, such as employment broad age range is problematic. The needs of a six-month- or inclusive recreation suitable for youth. old with a disability are vastly different to those of a 25-year- CDA is governed by parents old. The advocacy priorities of children with a disability focus on issues in the early stages of life and development, such as CDA was founded as the Australian Association of Families early intervention, early education and family-centered su of Children with a Disability to act as a voice for parents and pport services. By contrast, young people with a disability have family members of children with a disability. Despite its name advocacy priorities associated with successful transitions into change, CDA remains an organisation that is governed and young adulthood, eg. higher education and training, meaningful directed exclusively by parents of children with a disability. At employment and gaining independence from their family. Gaining the time of writing, all members of the CDA Board of Directors independence encompasses many aspects, including having are parents who have children with a disability. No Board adequate support to move out of their family home, engaging member is a young person and none describe themselves as in a variety of recreational activities that young people enjoy, as having a disability themselves.4 well as pursuing friendships and sexual relationships.

CDA focuses on issues facing children

Given that many of the advocacy priorities between children and young people with a disability differ, it is difficult for one advocacy entity to focus on these vastly different needs. Consequently, much of the core business of CDA focuses on the 3. Children with Disability Australia (2012). Annual Report 2012. Victoria: Author. needs of children with a disability rather than young people [accessed from www.cda.org.au on 12/213] 4. Children with Disability Australia (2013). Board of Directors, www.cda.org.au/ boardofdirectors [accessed on 14/2/13] 26 27 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

Conclusions and “I think the main reason to have a national voice is because young people with disabilities… recommendations are often over–looked when it comes to making It has been demonstrated that there is a need for a decisions about what they want and need, National Advocacy Voice for young people with a disability when they are perfectly capable of doing that represents their rights, interests and views exclusively and enables them to be directly involved and heard. Young so. It is instead left up to parents, carers and people with disabilities’ perspectives on national policy issues professionals without disabilities, and young are needed to ensure that Government decisions reflect the people who actually have the disability must significant needs of this group. This is particularly important in areas such as housing and support, employment and rely on these people guessing what is right. tertiary education, all of which fall under national jurisdiction. We are the experts in this, and should be This National Advocacy Voice needs to be separate and independent from the voice of parents. treated as such.” Tess, 20, VIC

It is recommended that: yythe Federal Government invest in the establishment and from across the country of young people with a range of operation of the National Youth Disability Council (NYDC). disabilities and from diverse backgrounds. yythe NYDC be located within the Youth Disability Advocacy The NYDC would empower young people with a disability to Service who are assigned project management have a voice and be heard directly by the Australian Government responsibilities in partnership with the Australian Youth and community, independent from the voices of their parents. Affairs Coalition. Investing in the NYDC would assist Australia to comply with the Convention on the Rights of Persons with Disabilities, the The National Youth Disability Council, would be made up UN Convention on the Rights of the Child as well as fulfilling exclusively of young people with a disability aged between 12 priorities of the National Disability Strategy. Finally, investing and 25 years to represent their interests and raise the issues in the NYDC will develop a much needed pathway for emerging that are important to them. It would include representation leaders in the youth and disability sectors.

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The following Appendices in this proposal further demonstrate the need for a National Advocacy Voice that Appendix A: what young people with directly represents young people with a disability. Appendix A describes what young people with disabilities want from a disabilities want from a national voice National Advocacy Voice. Appendix B provides an evidence review of the specific advocacy issues facing young people A voice of our own and to be heard with disabilities in Australia. The final Appendix (C) includes AYAC and the AHRC found within their widespread sample a sample of letters of support from a range of organisations, of young people with a disability across Australia, that ‘Having demonstrating the widespread support for a National Advocacy my own voice and opinions heard’ ranked in the top five issues Voice for young people with disabilities. that young people with a disability saw as most important in their lives. Over half of the young people with a disability who took part in this research reported that they had limited or no opportunities to share their views and opinions and as many as 71 percent said that they would like more opportunities to have their voices heard.5 This overwhelmingly demonstrates that young people with a disability want opportunities to voice their views, opinions and ideas in a way that is meaningful to their lives and communities, as would be the core objective of a National Advocacy Voice for young people with a disability.

Drawing on the research conducted directly with young people with disabilities, this section describes what they want from a National Advocacy Voice.

Systemic advocacy to government

Young people with a disability overwhelmingly wanted their rights, interests and views to be represented directly to the Australian Commonwealth Government. They view advocacy as including informing law and policy reforms, eg. NDIS, that would adequately meet their needs across all areas of their lives and promote positive social change more broadly.

“We would get a say in how policies are formed, and how our services are provided to us.” (Suzie, 22 years old, WA)

“Young people should have a chance to be listened to and understood by bureaucrats as someone who experiences living with a disability and the boundaries that Australian society sets…” (Siobhan, 19 years old, New South Wales)

5. Australian Youth Affairs Coalition (in press). In Your Own Words: The Voice & Opinions of Young People with Disability. Surry Hills, New South Wales: Author. 30 31 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

“They could be involved in sharing their opinion directly on Age appropriate advocacy issues concerning them such as the NDIS.” (Sadaya, 23 years old, WA) Young people with a disability express a critical need for a National Advocacy Voice that focuses specifically on the “To speak directly to government and disability ministers.” needs of their age group as they transition into adulthood, (Delaney, 18 years old, WA) eg. education, employment, the NDIS and entertainment. They feel that existing advocacy tended to focus on people “To [tell] the government [of] the needs young people with with a disability much younger or older than them and speak a disability may have and to dispel any misconceptions.” of feeling overlooked or unwelcome within general disability (Angela, 20 years old, NSW) advocacy arena.

“I believe we do face challenges but if we as young people “It is at this time we are trusted into the adult world of disability with a disability can come up with the solutions, I think the which is often not appropriate for us as it is generally pointed Australian Government may take us more seriously.” (Marita*, at a group much older. A national voice for young people with 24 years old, State of residence unknown) a disability would mean that we could try and put forward Raising community awareness some ideas which could work for us in this transitional period in life.” (Megan, 23 years old, NSW) Young people with a disability also want to raise awareness of their rights and contributions within the broader Australian “Express the views of young people with a disability…In community. They want to educate their peers and the broader providing our experiences it may pave a way in showing that community that young people with a disability have similar young people with a disability can achieve all the goals that goals and interests to many other young people. young people without a disability but this may be done in a different way.” (Kylie*, 24 years old, Residence state unknown) “I want to be involved in the planning and building of policies and communities and education.” (Sisaleo, age unknown, SA) “Young people as a distinct group — not children, not adults, therefore has unique needs/desires, e.g. sexuality, education. “I want to bring awareness of disability to people who do not Young people are good advocates because they are creative.” understand.” (Anna*, 19 years old, NSW) (Jess, 24 years old, Vic)

“People might understand better and see that we have gifts “I want to see a national voice for young people with a disability and talents too.” (Josiah, 14 years old, Vic) because it is important! We are a minority that not many people listen to very often, usually assuming that we know “A national voice for young people with a disability is nothing and that everybody else knows what is best for us paramount in making sure that young people are heard, because they have more life experience! They don’t! We are valued, respected in society.” (Melanie, 25 years old, NSW) missing out on important opportunities and experiences in “The majority of the general public assume we cannot do life (fun stuff, work, education) because there isn’t someone anything, we are us, not our disability! We know what we can there telling the politicians and the rest of the country what and can’t do, we know our limits.” (Courtney, 20, Vic) we want.” (Courtney, 20 years old, Vic)

“I want to help improve our way of life. To show others we are “In most disability or health systems, you are treated as either really no different to them.” (Brad, age unknown, QLD) a child, with no say, or an adult, with full independence. The day I turned 16 I did not suddenly know all the answers to my “Get us a voice in education and the workforce.” (Daniel*, life.” (Thabi, 19 years old, Vic) age unknown, NSW) 32 33 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

“It would give us a voice which in turn would mean greater well as helping an individual feel supported on a peer level.” awareness for disabled youth who want similar things to non (Melanie, 25 years old, NSW) disabled youth.” (Conor, age unknown, WA) “A voice to government. On my own my voice gets shouted “We need to help promote more venues appropriate to young down.” (Delaney, 18 years old, WA) people with a disability for entertainment.” (Erin, 20 years old, Vic) “Young people coming together to share their stories and Direct involvement network.” (Nathan, 21 years old, NSW)

Young people with a disability want to have their own voice “An opportunity to have our voices heard and to network and be heard directly about issues that most affected them, with one another. It would also prepare and enable the next rather than their parents and other people speaking on their generation of people with disabilities to advocate for the rights behalf without due consultation with them. of people with disabilities.” (Katrina*, 21 years old, NSW)

“An appropriate advocate for young people is someone who Young people with a disability envisage that their National can fight for you that is not your parent. This is important Advocacy Voice would be comprised exclusively of young because young people are not children, and our parents people with a disability. They also wanted young people with should not be fighting our battles for us. But we are also not a disability to be involved on a wider scale through active ready to use adult based advocacy because we are not membership, networking events (eg. conferences), advocacy as confident, and young people need different things than campaigns and online social networks. adults.” (Thabi, 19 years old, Vic) “Have either a Board or a Steering Committee that is “I’d like to see more people with disabilities involved as they comprised exclusively of young people with a disability.” know what they’re talking about and it’ll be coming from (Luke, 22 years old, Vic) their views.” (Martin, 21 years old, WA) “I believe a board of directors for each section which would “A National Voice for people with disabilities would ensure that closely be in touch with the local community and other youth with disabilities would be given the opportunity to have authorities (government) would help ensure the continuum of a say and raise concerns, opinions about issues that directly this voice.” (Sadaya, 23 years old, WA) affect them…Currently they do not have this opportunity as they are either not consulted, or do not have an easily “Ideally there would be proper events we could attend to accessible portal.” (Sadaya, 23 years old, WA) get together like the very first National Youth Disability Conference which was such as success recently. This was the Empowerment first time I’d had a chance to interact with other young people with significant disabilities and it made me feel less alone The idea of their own National Advocacy Voice gives young and even more empowered by what we could do together.” people with a disability a strong sense of empowerment. They (Megan, 23 years old, NSW) view it as an ideal means to join together to share ideas and experiences and collaboratively devise solutions that would “Having youth involved in online discussions on what the have widespread impact. NYDAS [National Youth Disability Advocacy Service] needs to fight.” (Michael, 25 years old, QLD) “I believe that having a national voice will give PWD [people with a disability] strength in numbers which will “Maybe a Facebook page?” (Courtney, 20 years old, Vic) make it easier for things to be achieved and changed as

34 35 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

“By a combination of social media, physical meetings and forums.” (Melanie, 25 years old, NSW) Appendix B: Advocacy Issues Facing “This would be a combination of things. Including, individual Young People With Disabilities advocacy, sharing information, peer support, online chat, etc. Maybe seminars and training.” (Thabi, 19 years old, Vic) “Young people should be able to discuss their treatment in the workplace, education and respite or nursing homes. Geographic and disability representation Where each individual is treated with respect, dignity and offered equal employment and educational opportunities.” Young people with a disability want their National Advocacy (Siobhan, 19, NSW) Voice to represent their diversity. They want representation of a range of disabilities, including disabilities that are not visible “Young people are not children…we are also not ready to and sometimes overlooked in traditional disability services. use adult based advocacy because we are not as confident, They also want geographic representation from all states and and young people need different things than adults…We are territories across Australia, including rural and regional areas. just starting out with independence, and need someone They saw this as a particular unmet need given that the only who understands all the things we are not sure about.” systemic advocacy service for young people with a disability (Thabi, 19, VIC) in Australia is YDAS, which is specific to Victoria. At the first National Australian Youth Disability Conference “It is important that young people with a range of disabilities in 2012, young people with a disability discussed the most be represented on this Board / Committee (eg. young people important advocacy issues for them. These issues were with physical, sensory, intellectual, learning and mental health identified from the National Youth Round Table which took disabilities).” (Luke, 22 years old, Vic) place in 2008 and through the individual and systemic advocacy work undertaken by YDAS. They were: “I imagine that a national voice would have working groups in each state who then can join together to make national 1. Housing and support through a National Disability change on big issues.” (Melanie, 25 years old, NSW) Insurance Scheme (NDIS)

“I think there should be a group for each state, that together 2. Education make up the national group. I think having a group in each state is important because every single state is different, 3. Employment each state has different legislations and laws that impact This proposal outlines these three advocacy areas in turn. on each of us differently … It would also mean the each and These issues are not exclusive to this group but rather provide every person interested in having a say within the groups, background on some of the advocacy needs of young people would be able to, no matter where they live within the states.” with a disability. (Courtney, 20 years old, Vic)

“Working towards social acceptance of all disabilities, visible Housing and support through a National Disability and invisible, intellectual, physical or cognitive, including Insurance Scheme mental illnesses.” (Siobhan, 19 years old, NSW) Young people want the National Disability Insurance Scheme (NDIS) to provide support for people with a disability across their lifespan that is timely, ongoing and tailored to their individual needs. For young people, the NDIS should address the discontinuity of services which they currently confront as 36 37 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

they transition from child-focused to adult-focused service Landlords of residential houses typically do not permit these, systems. This differs from the needs of children with a disability, nor are they required to by the Disability Discrimination Act who are typically seeking support services within their family unit. 1992, which allows tenants with a disability to make minor and reversible changes to their rental houses.7 Therefore, Young people with a disability across Australia identified although some state governments offer home renovation 6 ‘being independent’ as their ‘most important issue’. There grant programs to people with disability these do not assist is a desperate need for appropriate and timely services that young people with a disability8,9 seeking to access the private would enable young people with a disability to make age- rental market, home ownership is required to benefit from appropriate transitions in the same way that other young these programs. Australians can do with relative ease, for example moving out of their family home. Such services include accessible housing, Community Residential Units constitute one accessible specialised equipment and adequate and flexible attendant housing option for young people with high support needs. support services. They are physically accessible and provide attendant care support. However, this is not the preferred option for many Accessible Housing young people. There can be significant waiting periods for 10 For many young people, including those with a disability, moving into or between CRUs. Further, young people with gaining independence in young adulthood includes moving a disability living in CRUs have little to no choice about the out of their family home. While many young people without a people with whom they live. There is no option to move in disability are able to do so with relative ease, across Australia, with friends or a partner, as many young people without a there are limited housing options available for young people disability often chose to do. This is counter to Article 19 of the who have physical access requirements. UN Convention of the Rights of Persons with Disability outlines the right for people choose their place of residence and with Private rental properties are generally the most financially whom they live on an equal basis with others.11 viable for young people compared to home ownership, given that many are students with a limited income or in the early There is a small proportion of public housing that caters to stages of establishing their careers. This is especially true for medium to high access needs. However waiting periods can 12 young people with a disability who experience multiple levels exceed ten years, which is not at all a viable option for young of disadvantage in employment, as discussed in detail later in people looking to move out of their family home during their this proposal. young adulthood. Some states have increased investment into

Although the private rental market is among the most 7. Disability Discrimination Act 1992 (Cth) s (25)(2)(d) affordable housing options for young people with a disability, 8. New South Wales Department of Family and Community Services (2012). it is often not accessible to young people with medium to high NSW Service type guidelines for home and community care (HACC) – home modification 2012, Version 2.0. New South Wales: Author. [Accessed from www. physical access needs. Access needs may include stepless adhc.nsw.gov.au on 22/1/13] showers, lower benchtop heights, wide doorways and bigger 9. Victorian Government Department of Human Services (2011). Summary of rooms to accommodate wheelchairs and single story houses Housing Assistance Programs 2009–10. Melbourne: Author. [Accessed from www.dhs.vic.gov.au on 22/1/13] or elevators. Many existing private rental properties do not 10. Australian Productivity Commission (2011). Disability care and support: meet these kinds of access needs. Major renovations to existing Draft report – overview and recommendations. Melbourne: Commonwealth of houses are often needed to make them fully accessible. Australia. 11. United Nations General Assembly, Convention on the Rights of Persons with Disabilities : resolution / adopted by the General Assembly, 24 January 2007, A/ RES/61/106, [19]. 6. Australian Youth Affairs Coalition (in press). In Our Own Words: The Voice & 12. Australian Institute of Health and Welfare (2012). Housing assistance in Opinions of Young People with Disability. Surry Hills, New South Wales: Author. Australia, cat no. HOU 266. Canberra: Commonwealth of Australia. 38 39 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

accessible units that are centrally located and affordable, The alternative to paying for specialised equipment however substantially more housing of this kind is needed to outright is to access a subsidy through state government meet this unmet need and young people with a disability are funded aides and equipment programs. These programs often still limited if they wish to live with their partner or friends. have extended waiting lists. For example, the median waiting period for funding for assistive equipment in Victoria has Adaptive/specialised Equipment been recorded at seven to eight months.16 In reality, waiting “My family have had to access two different buckets of periods are longer, particularly if modifications are needed, funding to be able to afford the chair I need and will have given that these programs require quotes to be sought before to cover a significant gap in funding. I am still waiting for the an application is lodged. new chair and am in more pain now because the current There is not an option for young people or their families 13 chair is no good.” to purchase their necessary equipment to later receive a Some young people with disabilities require adaptive reimbursement for the subsidised cost. For example, the and mobility equipment, much of which is essential for their Government funded state-wide equipment program in Victoria day-to-day life, eg. wheelchairs and hoists to get out of has a policy that they do not provide reimbursement for any 17 bed or use the toilet. Research affirms that use of assistive equipment that has already been purchased and young equipment for people who require it dramatically increases people with a disability have reported similar policies in other 18 their participation across all domains of their lives, including states across Australia. Even after waiting long periods for personal care, social life, employment, education, recreation necessary equipment, government funding does not cover the 19 and leisure and political participation.14 full costs of assistive equipment. This leaves young people with a disability to bear remaining costs, which can be a Despite it being a necessity for many young people with significant cost burden, given that have limited incomes. a disability, specialised equipment is extremely difficult for young people with a disability to obtain when they need it. Attendant Support It is often too expensive for many young people to purchase Many young people with a disability require attendant outright. For example, according to research conducted by support services to assist with the tasks of daily living, such Deakin University in 2010, the average cost of a standard as getting dressed, having a shower, going to the toilet and 15 electric power wheelchair is $6,739. For a young person who preparing and eating meals. These are basic human rights receives a Disability Support Pension as their sole source of for all Australians, yet for young people with a disability, these income, this is equivalent to approximately nineteen weeks of rights are not adequately addressed by the service system. their gross income. This price does not consider the additional cost of wheelchair and scooter modifications that many young Successful transitions from childhood to young adulthood people with a disability require. often entail gaining independence from parents. However,

16. Wilson, E., Wong, J., & Goodridge, J. (2006). Too little too late: Wait times and cost burden for people with a disability in seeking equipment funding in 13. Youth Disability Advocacy Service (2011). Submission into the productivity Victoria. Melbourne: Scope (Vic). commission inquiry into a life-time disability care and support scheme. 17. Ballarat Health Services (2010). State-wide Equipment Program: Customer Melbourne, Australia: Author. Frequently Asked Questions. [www.swep.bhs.org.au, accessed on 19/2/2013]. 14. Laytan, N., Wilson, E., Colgan, S., Moodie, M. & Carter, R. (2010). The 18. Youth Disability Advocacy Service (2008). National Disability Strategy Youth Equipping Inclusion Studies: Assistive Technology Use and Outcomes in Roundtable Report. Melbourne: Author. Victoria. Melbourne: School of Health and Social Development and Deakin 19. Youth Disability Advocacy Service (2011). Submission into the productivity Health Economics, Deakin University. commission inquiry into a life-time disability care and support scheme. 15. ibid Melbourne, Australia: Author. 40 41 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

insufficient paid attendant support available to young people other interests. However, current attendant support services with a disability often results in unsustainable reliance on that are available do not allow for this. Young people with a informal support from family.20 In 2009, the Australian Bureau disability also highlighted this issue in consultations for the of Statistics found that 56.4 percent of parents who provided YDAS submission.23 They explained that insufficient attendant unpaid care to their son or daughter aged 15 years and support services compromised their freedom, social over did so either because alternative care was too costly opportunities and quality of life. or there were no other care options available. A further 44.3 percent of parents provided care because the alternative “I pay for attendant support for an outing once a fortnight or care arrangements that were available did not adequately so. This is at a cost of $100–$200, just for an evening out. If I meet the needs of the person with a disability who required was living on my own and surviving on the Disability Support attendant support.21 Pension I would not be able to afford this, I would need to prioritise basic living costs like food and rent.”24 In 2011, YDAS sought input from young people with a range of disabilities in the process of writing their submission into “Sometimes you don’t have enough hours. Sometimes you the Inquiry into a Life-time Disability Care and Support want to be able to go out with friends and you can’t because 25 Scheme conducted by the Productivity Commission.22 Within you have already used up your allotted hours.” this submission, young people with a disability spoke about insufficient attendant support services creating unhealthy Education dynamics within their families. Education provides young people with a foundation for meaningful employment and establishing their career. School, “There is annoyance there – that I have to rely on (my parents) university and TAFEs can also be an avenue for young people so much. I’m 25 now and I should have an adult relationship with to socialise with their peers, gain a sense of community and my parents, but I don’t, it feels like a patient/carer relationship participate in extracurricular and civic activities. – not what other 25 year olds have! I call on my parents (now) but I won’t be able to do that for the rest of my life because For young people with a disability, education can inform they won’t be able to do it for the rest of my life and I won’t them of their rights and equip them with the skills to negotiate want them to. I wouldn’t want to sit in my own apartment that supports for themselves as they work toward their goals. There I am sharing with someone and call my parents and say hey have been some improvements in education for young people mum, can you come and get me out of bed because I haven’t with a disability over the past two decades, for example many got a carer today. I have a fight with one of my parents and then have the option of attending a mainstream school setting. five minutes later I have to ask them to help me have lunch.” However, many barriers to equitable education remain, both Jess, 25, Vic within secondary and tertiary education.

Young people with a disability need flexible support that Lower Secondary School Completion Rates accommodates their own school, TAFE, university and work schedules, as well as being able move out of their family In Australia, young people with a disability have much home, go out with friends and partners and pursue their lower secondary school completion rates compared to their peers without a disability. Only 74 percent of 20- to 24-year-

20. ibid 21. Australian Bureau of Statistics. (2009). Disability, Aging and Carers Australia. 23. Youth Disability Advocacy Service (2011). Submission into the productivity Canberra, Australia: Author commission inquiry into a life-time disability care and support scheme. 22. Youth Disability Advocacy Service (2011). Submission into the productivity Melbourne, Australia: Author. commission inquiry into a life-time disability care and support scheme. 24. ibid Melbourne, Australia: Author. 25. ibid 42 43 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

old Australians with a disability or long-term health condition Discrimination Within Education attained Year 12 or a Certificate II or above, compared with 87 percent of their same age peers without a disability.26 Rates The Gonski Report highlighted that current funding of completion for compulsory education are even less among structures were vastly inadequate to sufficiently address the 33 young people with a severe disability in Australia. Only half needs of students with a disability in Australian schools. The of students with severe disability progress beyond Year 10 at report outlined the need for disability funding to align with school, compared with 80 percent of the general population.27 antidiscrimination legislation, in terms of all young people with a disability being eligible for support when they need it and Lower Tertiary Participation for the level of support to sufficiently address their support needs at school. Young people with a disability in Australia also experience lower educational attainment after secondary school. Australian schools are required by law to make reasonable For example, fifteen percent of people with a disability in adjustments for all students with a disability who have Australia have completed a bachelor degree or higher tertiary additional educational needs. This requirement is set out in qualification, compared to twenty-four percent of Australians the Disability Discrimination Act 1992 and the accompanying without a disability.28 Disability Standards for Education introduced in 2005. However, across the states and territories in Australia, secondary school Young people with a disability also have lower completion students with a disability are only eligible for individual rates for vocation-based training programs. For example, one funding for support at school if their disability falls within a Australian study found that students with a disability are under- limited number of disability categories. For example, only represented in apprenticeships or traineeships throughout one of all eight states and territories in Australia recognised 29 the seven years following completion of Year 10. This pattern learning disabilities under their funding criteria for students exists despite evidence that young Australians with a disability with a disability, with the exception of narrow categories who complete these vocation-based education programs of ‘developmental delay’ and ‘language disorders’ in some 30, 31 have higher rates of employment after completing school. selected states.34, 35, 36, 37, 38, 39, 40, 41 Three states did not recognise “One of the main issues facing youth with a learning disability young people with a mental illness as eligible for disability 42, 43, 44 today is that they are seriously disadvantaged by the lack support funding at school. of resources they receive during compulsory education. 32. Youth Disability Advocacy Service (2008). National Disability Strategy Youth This places students significantly behind other able-bodied Roundtable Report. Melbourne: Author. students if they want to reach tertiary education.”32 33. Gonski, D., Boston, K., Greiner, K., Lawrence, C., Scales, B. & Tannock, P. (2011). Review of Funding for Schooling – Final Report. Canberra: Department of 26. Australian Government (2012). Social Inclusion in Australia: How Australia is Education, Employment and Workplace Relations. Faring. Canberra: Australian Social Inclusion Board. 34. Victorian Department of Education and Early Childhood Development 27. Australian Bureau of Statistics (2009). Disability, Ageing and Carers, (2013). Program for students with a disability guidelines. Melbourne: Author. Australia, Basic CURF, Cat. no. 4430.0.30.002, Commonwealth of Australia, [accessed from www.dhs.vic.gov.au on 24/1/13] Canberra. 35. New South Wales Department of Education and Training (2013). Disability 28. Australian Bureau of Statistics (2009). Disability, Ageing and Carers, Criteria Factsheet. Sydney: Author. [www.schoolds.nsw.edu.au accessed on Australia, Basic CURF, Cat. no. 4430.0, Commonwealth of Australia, Canberra. 24/1/13] 29. Lamb, S. & McKenzie, P. (2001). Patterns of Success and Failure in the 36. Queensland Department of Education, Training and Employment (2005). Transition from School to Work in Australia (Report No. 18). Australian Council 2005-2012 Department Disability Definitions Factsheet. Brisbane: Author. [www. for Educational Research, Melbourne. education.qld.gov.au accessed on 31/1/13] 30. Bowman, K. (2004). Equity in vocational education and training: Research 37. Department of Education Tasmania (2013). Register of Students with Severe readings. Adelaide: National Centre for Vocational Education Research. Disabilities. Tasmania: Author. [www.education.tas.gov.au accessed on 31/1/13] 31. Clark, C. (2007). Connecting the dots: A successful transition for deaf 38. Northern Territory Department of Education and Training (2011). Special students from vocational education and training to employment. Adelaide: Education Support Services Information Package. Darwin: Author. [www. National Centre for Vocational Education Research. education.nt.gov.au accessed on 31/1/13] 44 45 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

Inadequate Support detrimentally affects Young People Universities and TAFEs typically provide note-takers, with a Disability adaptive equipment and technologies to students with a range of disabilities. However, they do not provide attendant Young people with a disability have highlighted the support to students who require assistance with going to detrimental affects that insufficient support at secondary the toilet, having their lunch and other personal care needs school has had on them. In 2008, the Youth Disability Advocacy while they are on campus. This detrimentally affects young Service hosted a National Youth Disability Roundtable to people’s ability to attend lectures and classes and access enable young people with a range of disabilities to have input services, resources and facilities that are otherwise available into the National Disability Strategy. At this Roundtable, young to all higher education students. In turn, this interferes with people discussed experiences of falling behind in their school the academic performance of young people with a disability, work and resultant social isolation and stress arising from as well as their opportunities to participate in social activities being ineligible for disability support funding, or receiving that can be a hallmark of student life. limited funding that did not sufficiently address their support needs at secondary school. The lack of access to personal care support in higher education exemplifies the discontinuity in service provision Narrow disability funding categories can intensify barriers for young people with a disability. At secondary schools, to education for young people with a disability who experience eligible students with a disability have one support worker multiple levels of disadvantage. For example, Indigenous for assistance with both learning activities and personal care young people are 30 per cent more likely to require additional needs. Once young people with a disability move into the 45 learning support than their non-Indigenous peers and tertiary education system, the personal care support services teachers in Western Australia have expressed grave concerns that were available to them in prior educational settings no over the lack of funding available to meet the needs of young longer offered. Young people with a disability must instead 46 people with this disability in their schools. rely on their allotted funding from their own support packages, which detracts from the personal care that they can receive in their homes and for social and recreational activities. 39 Australia Capital Territory Department of Eduction, Youth and Family Services. Interim ACT Student Disability Criteria (2004). Canberra: Author. Employment [www.det.act.gov.au accessed on 31/1/13] 40. Department of Education Western Australia (2011). Navigating your Meaningful employment enables young people to be Choices: A guide for parents of children with special needs. Perth: Author. [www. financially independent and establish their own career. det.wa.edu.au accessed on 31/1/13] 41. South Australian Department of Education and Children’s Services. Disability Employment can also offer young people with a sense of Support Program 2007 Eligibility Criteria. South Australia: Author. [www.decd. direction and a way to contribute to the community. However, sa.gov.au accessed on 31/1/13] young Australians with a disability continue to experience 42. ibid 43. Queensland Department of Education, Training and Employment (2005). severe disadvantages in employment. 2005-2012 Department Disability Definitions Factsheet. Brisbane: Author. [www. education.qld.gov.au accessed on 31/1/13] Lower Employment Rates and Income 44. Victorian Department of Education and Early Childhood Development (2013). Program for students with a disability guidelines. Melbourne: Author. In 2009, 54 percent of all Australians identify as having a [accessed from www.dhs.vic.gov.au on 24/1/13] disability were between the working ages of 15 to 65 years. 45. Australian Bureau of Statistics & Australian Institute of Health and Welfare: However, just under half (46%) of people with a disability Community services (2008). In The health and welfare of Australia’s Aboriginal and Torres Strait Islander Peoples 2008. Canberra: Author. between the working ages of 15 to 65 years were not 46. Association of Independent Schools of Western Australia. (2011)Submission into the Education and Health Committee’s Inquiry into improving educational outcomes for Western Australians of all ages. Western Australia: Author. 46 47 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

participating in the workforce,47 in contrast to 18 percent of disability will affect their ability to work and the resources people without a disability.48 The median gross income of needed to support them in the workplace. For example, people with a disability of working age was $344 per week, employers are not aware that workplace modifications, which was almost half that of people without a disability ($671 aides and equipment can be funded through the Australian per week).49 Government Employment Assistance Fund.

The age period between 18 to 25 years is an important time Young people with a disability also raised concerns about for young people to make a successful transition from education employers misusing occupational health and safety legislation into employment. Research indicates that only 46 percent of as a reason not to employ them or to mask discriminatory young people with a disability make a successful transition into processes. Prior negative experiences in employment meant stable employment within seven years of leaving secondary that young people were reluctant to disclose their disabilities school, compared to 71 percent of their same age peers without or request reasonable adjustments in their subsequent a disability.50 Eighteen percent of young people with a disability workplaces, which further impeded their prospects of do not enter employment at all in this time, compared to five sustainable employment and promotion.54 percent of their counterparts without a disability.51 Inadequate support in the workplace At the National Youth Disability Roundtable in 2008, young people with a disability identified some core barriers to employment Some young people with a disability require additional in their vocational fields of interest, such as experiences of supports within their workplaces, such as disability support discrimination and insufficient workplace support.52 workers, assistive technologies, building modifications and flexible working arrangements.55 Discrimination in Employment The Australian Government can be commended for Discrimination on the basis of disability is a significant programs such as Job Access that provides funding for such issue in workplaces across Australia. Disability discrimination services within workplaces. However, some young people with constituted the most frequent category of complaints lodged a disability have additional needs that are not met through with the Australian Human Rights Commission over the 2011- existing initiatives. For example, people with a disability can 2012 financial year, with approximately one third (31%) of these receive up to 10 hours per week of attendant support in their relating to discrimination in employment.53 workplace.56 This presents extreme difficulties for young people with a disability who require assistance with personal At the 2008 Roundtable, young people with a disability care needs for the duration that they are in their workplace. expressed that employers can be reluctant to recruit them. It essentially prohibits them from working beyond one and a Employers can over-estimate the degree to which their half days per week, when they would otherwise be able to if sufficient attendant support services were available to them. 47. Australian Bureau of Statistics. (2009). Disability, Aging and Carers Australia. This in turn severely impedes the career development for this Canberra, Australia: Author group of young people with a disability and their opportunities 48. ibid 49. ibid for a more equitable income. 50. Lamb, S., & McKenzie, P. (2001). Patterns of success and failure in the transition from school to work in Australia. Camberwell, Australia: Australian Council for Educational Research. 51. ibid 54. Youth Disability Advocacy Service (2008). National Disability Strategy Youth 52. Youth Disability Advocacy Service (2008). National Disability Strategy Youth Roundtable Report. Melbourne: Author. Roundtable Report. Melbourne: Author. 55. ibid 53. Australian Human Rights Commission (2012). Australian Human Rights 56. Job Access (2010). Work based personal assistance. Australian Government Commission Annual Report 2011-2012. Australian Human Rights Commission: Sydney. [www.jobaccess.gov.au accessed on 15/3/13] 48 49 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

Other Barriers to Employment Summary “It is impossible to live, pay medical bills and go to uni on a Young people with a disability experience multiple levels DSP and we can’t get jobs like the other students.” (Abbie, 22 of disadvantage with respect to education, employment and years old, Vic) day-to-day supports. Their issues relate to the transition into young adulthood, such as lack of sufficient support services While barriers to employment are a widespread concern needed to move out of their family home, and differ greatly for people with a disability across all ages in Australia,57 young from those confronting infants and children with a disability, people can be more susceptible to such disadvantages. Many by virtue of the differences in life periods. This highlights the young people enter the workforce through unskilled work and need for young people with a disability to have their own volunteering, which can in turn be a pathway to employment National Advocacy Voice that is separate from that of children. in their vocational field of interest. However, there are barriers to young people with a disability accessing these pathways into employment.

Many young people with a disability cannot perform the tasks required for unskilled labour. For example a young people with a motor impairment may not be able to rearrange items on supermarket shelves or assemble burgers at a fast food outlet.

There are also barriers for young people with a disability interested in gaining volunteer experience in the vocational field of interest. The Disability Discrimination Act 1992 does not require employers to make reasonable adjustments for volunteer workers, which excludes many young people with a disability who would usually require reasonable adjustments in their workplace from participating in volunteer work.58 This in turn limits their ability to demonstrate their skills to potential employers as a means of entering the labour force.

57. Australian Human Rights Commission (2012). Australian Human Rights Commission Annual Report 2011-2012. Australian Human Rights Commission: Sydney. 58. Disability Discrimination Act 1992 (Cth) 50 51 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

Appendix C: Letters of support

Disability Advocacy Network Australia People With Disabilities Australia

People with Disability Australia Incorporated Postal Address: PO Box 666 Strawberry Hills NSW 2012 Street Address: Ground Floor, 52 Pitt Street Redfern NSW 2016 Phone: 02 9370 3100 ABN 98 879 981 198 Toll Free: 1800 422 015 Fax: 02 9318 1372 TTY: 02 9318 2138 Toll Free TTY: 1800 422 016 Email: [email protected] TIS: 13 14 50 NRS: 1800 555 677 NGO in Special Consultative Status with the Economic and Social Council of the United Nations 5 March 2013

To whom it may concern:

Re: PWDA support of YDAS proposal to establish a National Advocacy Voice for young people with disability

People with Disability Australia (PWDA) strongly supports the Youth Disability Advocacy Service (YDAS) proposal for the establishment of a National Advocacy Voice for young people with disability. We believe this is an opportunity for the Australian government to foster the development of people with disability in Australia, and would reflect the aims of the National Disability Strategy.

As a cross-disability, human rights organisation which has provided information, advocacy, training and complaints handling for over 30 years, PWDA is a member- led and driven organisation passionately committed to the inclusion of people with disability in all aspects of Australian society.

We believe it essential that the voice of young people with disability in Australia be heard at a national level. Young people with disability are distinct from the interests of children and separate from the voices of parents and carers. They are a discrete group of young citizens with critical issues transitioning into young adulthood.

Additionally, we believe a National Advocacy Voice platform could significantly foster and advocate for the rights, needs and interests of young people with disability.The establishment of a national advocacy voice for and by young people with disability could in turn, cultivate significant opportunities for young leaders with disability to be nurtured leading to the strengthening of people with disability in Australia.

Yours sincerely,

Therese Sands Co-Chief Executive Officer People with Disability Australia

52 53 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

Julia Farr Foundation

54 55 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

University of Sydney

relationships outside the family. Psychological wellbeing depends on the successful resolution of various psychosocial phases of development, including identity versus Faculty of Health Sciences identity confusion during adolescence and intimacy versus isolation during young adulthood. Whilst successful resolution of one phase facilitates positive emotional and social adjustment, unsuccessful resolution has negative implications for the Dr Nikki Wedgwood Rm A151, Cumberland C42 subsequent stage. Due to their experiences of disabilism, 15-29 year old Australians Chief Investigator East Street (PO Box 170) Transition to Adulthood Study Lidcombe NSW 1825 with a long-term health condition or impairment have a far greater risk of negative Telephone: +61 2 9351 9808 mental health outcomes compared to their able-bodied peers (ABS 2005, AIHW Facsimile: +61 2 9351 9468 2005, Emerson et al. 2008). 10 May 2013 My current research based on life history interviews with 60 young Australians with The Hon Jenny Macklin MP various disabilities shows that many of the well-meaning programs designed to aid Minister for Families, Community Services and Indigenous Affairs Minister for Disability Reform young people in their transition from school to the workforce and/or society more Parliament House broadly are not meeting young people’s needs because they lack insights into their CANBERRA ACT 2600 everyday lived experiences of disabilism. Thus, it is critical to empower young people with impairments to contribute directly to the development of more effective Dear Minister Jenny Macklin intervention strategies and social policies aimed at reducing their current disproportionate risk of negative social, physical and mental health outcomes. Letter of Support for a National Voice for the establishment of the National Youth Disability Council by YDAS The transition to adulthood is ‘make or break’ time in terms of what role people will play in society—or on its margins. Without a voice, young people with As a sociologist with expertise in the field of disability and youth who is currently impairments—who comprise nearly 9% of young Australians aged 15-24 years leading a longitudinal study of the transition to adulthood of young Australians with (AIHW 2007)—will continue to be socially excluded and economically marginalized. impairments, I strongly support the establishment of the National Youth Disability Ultimately, as this sector of Australian society increases due to improved survival Council by YDAS. rates of children with impairments and chronic health conditions, so too will the social and financial implications of their higher rates of social exclusion. For instance, Young people with disabilities' experiences of growing up are often tainted by 46% of Australians on income support receive the Disability Support Pension exclusion from everyday activities and ordinary relationships due to a disablist (Australian Government 2012, 70). Thus, according to Deloitte Access Economics, assumption that there is ‘something wrong’ with them (Murray 2002). As a result, increasing workforce participation rates for people with disabilities by one-third they fare poorly on the traditional markers of adulthood—academic achievement, would not only generate $43 billion in gross domestic product over the next decade employment and independent living, as well as having significantly poorer outcomes but would also dramatically reduce welfare costs (Browne 2012). Reducing and/or in terms of interpersonal relationships and community participation (ABS 2005, preventing common preconditions of poor mental health is also paramount given that AIHW 2005). Thus, although young people with impairments have the same Australia is already spending $10.6 billion per annum on the mental health of young preoccupations, interests and desires as their able-bodied peers—school, work, people (Access Economics 2009). Thus, allowing young people with impairments to leisure, leaving home, university, family, friends, relationships and money—the fact advocate for themselves, will not only help Australia meet its obligations as a that they are faced with negotiating the transition to adulthood in the context of a form signatory on the UN Convention on the Rights of Persons with Disabilities, but also of ‘social apartheid’ (Goggin and Newell 2005), means that their needs differ from have enormous economic benefits by reducing their political, social and economic those of their able-bodied peers. Therefore they need to be able to speak/advocate for exclusion. themselves. Their voices also need to be distinct from that of their parents and carers because an important developmental task in the transition to adulthood is achieving Yours sincerely autonomy from parents and family. Emerging adults with the most frequent contact with parents, especially those still living at home, tend to have the poorest psychological adjustment (Arnett 2000: 475). Parents do not run advocacy groups for Nikki young able-bodied Australians and there is no reason why the need for such autonomy should be any different for young people with impairments. Dr Nikki Wedgwood Chief Investigator Indeed, in order to become fully-functioning, well-adjusted, socially and Transition to Adulthood Study economically included members of society, all young people need to meet not only the structural challenges of the transition from childhood to adulthood—such as finding employment—but also the developmental challenges—such as: identity consolidation; achieving independence from parents; and establishing adult

56 57 Proposal for the Establishment of the National Youth Disability Council Proposal for the Establishment of the National Youth Disability Council

Australian Federation of Disability Organisations

247 Flinders Lane Melbourne VIC 3000 Phone: 03 9662 3324 TTY: 03 9662 3374 Fax: 03 9662 3325 Email: [email protected] Web: www.afdo.org.au

4/4/2013

To Whom it May Concern, On behalf of the Australian Federation of Disability Organisations I would like to support the References request for assistance to develop a National Voice for Young People with Disability.

AFDO believes that it is vital that young people with a disability be able to organise together at the National level in order to advocate for their rights as people with disability. Anonymous (2013). Individual submissions (#02 & #04) into This is in conformity with the United Nations Convention on the Rights of Persons with the Senate inquiry into involuntary or coerced sterilisation Disabilities. of people with disabilities in Australia. Senate Standing Young people with disability need to be invested in. Not only do they have critical things to Committee on Community Affairs, Parliament of Australia say about their issues of concern but they are the future leaders of people with disability. They require resources to be able to come together, have their say about what affects their [www.aph.gov.au, accessed on 24/2/13]. lives and to advocate their concerns at the National level.

There is significant reform happening in Australia at the present time for people with disability. Association of Independent Schools of Western Australia. This includes reform in the support system, in education and employment. These reforms if (2011). Submission into the Education and Health Committee’s properly conducted will ensure that people with disability will be able to be active citizens in Australia and be less dependent on welfare. Inquiry into improving educational outcomes for Western Australians of all ages. Western Australia: Author. Young people with disability want to get a good education, they want to get meaningful jobs with meaningful pay and they want to be well supported to achieve these things as well as other aspects of their lives. But for these reforms to work effectively for young people they Australia Capital Territory Department of Eduction, Youth and must have a say in them. They must be resourced to speak at the National level. Family Services. Interim ACT Student Disability Criteria (2004). For these reasons I commend the application for assistance to you and look forward to be Canberra: Author. [www.det.act.gov.au accessed on 31/1/13] able to work with a strong and effective National organisation of young people with disability.

Yours Sincerely, Australian Bureau of Statistics. (2009). Disability, Aging and Carers Australia. Canberra, Australia: Author

Australian Bureau of Statistics (2009). Disability, Ageing and Carers, Australia, Basic CURF, Cat. no. 4430.0.30.002, Lesley Hall CEO Commonwealth of Australia, Canberra. Australian Bureau of Statistics (2009). Disability, Ageing and 1 Carers, Australia, Basic CURF, Cat. no. 4430.0, Commonwealth of Australia, Canberra.

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Australian Bureau of Statistics & Australian Institute of Health Clark, C. (2007). Connecting the dots: A successful transition and Welfare: Community services (2008). In The health and for deaf students from vocational education and training welfare of Australia’s Aboriginal and Torres Strait Islander to employment. Adelaide: National Centre for Vocational Peoples 2008. Canberra: Author. Education Research.

Australian Bureau of Statistics. (2009). Disability, Aging and Commonwealth of Australia (2011). 2010-2020 National Carers Australia. Canberra, Australia: Author Disability Strategy. Canberra: Author. Disability Discrimination Act 1992 (Cth) Australian Government (2012). Social Inclusion in Australia: How Australia is Faring. Canberra: Australian Social Inclusion Board. Department of Education Tasmania (2013). Register of Students with Severe Disabilities. Tasmania: Author. [www.education. Australian Human Rights Commission (2012). Australian Human tas.gov.au accessed on 31/1/13] Rights Commission Annual Report 2011-2012. Australian Human Rights Commission: Sydney. Department of Education Western Australia (2011). Navigating your Choices: A guide for parents of children with special Australian Institute of Health and Welfare (2012). Housing needs. Perth: Author. [www.det.wa.edu.au accessed on 31/1/13] assistance in Australia, cat no. HOU 266. Canberra: Commonwealth of Australia. Disability Discrimination Act 1992 (Cth) s (25)(2)(d)

Australian Productivity Commission (2011). Disability care Gonski, D., Boston, K., Greiner, K., Lawrence, C., Scales, B. & and support: Draft report – overview and recommendations. Tannock, P. (2011). Review of Melbourne: Commonwealth of Australia. Funding for Schooling – Final Report. Canberra: Department Australian Youth Affairs Coalition (in press). In Our Own Words: of Education, Employment and Workplace Relations. The Voice & Opinions of Young People with Disability. Surrey Hills, New South Wales: Author. Job Access (2010). Work based personal assistance. Australian Government [www.jobaccess.gov.au accessed on 15/3/13] Ballarat Health Services (2010). State-wide Equipment Program: Customer Frequently Asked Questions. [www.swep. Lamb, S. & McKenzie, P. (2001). Patterns of Success and Failure bhs.org.au, accessed on 19/2/2013]. in the Transition from School to Work in Australia (Report No. 18). Australian Council for Educational Research, Melbourne. Bowman, K. (2004). Equity in vocational education and training: Research readings. Adelaide: National Centre for Vocational Laytan, N., Wilson, E., Colgan, S., Moodie, M. & Carter, R. (2010). Education Research. The Equipping Inclusion Studies: Assistive Technology Use and Outcomes in Victoria. Melbourne: School of Health and Social Children with Disability Australia (2012). Annual Report 2012. Development and Deakin Health Economics, Deakin University. Victoria: Author. [www.cda.org.au accessed on 12/213] New South Wales Department of Education and Training Children with Disability Australia (2013). Board of Directors, (2013). Disability Criteria Factsheet. Sydney: Author. [www. www.cda.org.au/boardofdirectors [accessed on 14/2/13]. schoolds.nsw.edu.au accessed on 24/1/13]

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New South Wales Department of Family and Community Victorian Department of Education and Early Childhood Services (2012). NSW Service type guidelines for home and Development (2013). Program for students with a disability community care (HACC) – home modification 2012, Version guidelines. Melbourne: Author. [www.dhs.vic.gov.au accessed 2.0. New South Wales: Author. [Accessed from www.adhc.nsw. on 24/1/13] gov.au on 22/1/13] Victorian Equal Opportunity and Human Rights Commission Northern Territory Department of Education and Training (2011). (2011). Desperate measures: The relinquishment of children Special Education Support Services Information Package. with disability into state care in Victoria. Victoria: Author. Darwin: Author. [www.education.nt.gov.au accessed on 31/1/13] Victorian Government Department of Human Services (2011). Queensland Department of Education, Training and Summary of Housing Assistance Programs 2009–10. Melbourne: Employment (2005). 2005-2012 Department Disability Author. [Accessed from www.dhs.vic.gov.au on 22/1/13] Definitions Factsheet. Brisbane: Author. [www.education.qld. gov.au accessed on 31/1/13] Wilson, E., Wong, J., & Goodridge, J. (2006). Too little too late: Wait times and cost burden for people with a disability in Senate Standing Committee on Community Affairs (2012). seeking equipment funding in Victoria. Melbourne: Scope (Vic). Terms of reference for the Senate inquiry into involuntary or coerced sterilisation of people with disabilities in Australia. Women With Disabilities Australia (2011). Submission to the [www.aph.gov.au, accessed on 24/2/13]. Preparation Phase of the UN Analytical Study on Violence against Women and Girls with Disabilities. Tasmania: Author. South Australian Department of Education and Children’s [www.wwda.org.au, accessed on 27/2/13]. Services. Disability Support Program 2007 Eligibility Criteria. South Australia: Author. [www.decd.sa.gov.au accessed on 31/1/13] Youth Disability Advocacy Service (2008). National Disability Strategy Youth Roundtable Report. Melbourne: Author. Swango-Wilson, A. (2008). Care giver perceptions and implications for sex education for individuals with intellectual Youth Disability Advocacy Service (2011). Submission into the and developmental disabilities. Sex and Disability, 26, 167-174. productivity commission inquiry into a life-time disability care and support scheme. Melbourne, Australia: Author. United Nations General Assembly, Convention on the Rights of Persons with Disabilities: resolution / adopted by the General Assembly, 24 January 2007, A/RES/61/106.

United Nations General Assembly, Convention on the Elimination of All Forms of Discrimination Against Women, 18 December 1979, United Nations, Treaty Series, vol. 1249, p. 13.

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