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FAMILY VOICES agazine m

August 2010 2010 AUSTRALIAN FEDERAL ELECTION THE DISABILITY VOTE COUNTS

Number the Boxes

EQUAL OPPORTUNITIES, REAL RECOGNITION OF RIGHTS AND TRUE SOCIAL INCLUSION FOR CHILDREN AND YOUNG PEOPLE WITH DISABILITY

For your vote to be effective for children and young people with disabilit y please consider carefully EVERY candidates’ relevant policies and views. CDA PRINT POST APPROVED 353280/00006

MAKE YOUR

VOTE COUNT P8 CDA LAUNCH P19 DISABILITY POLICIES P15

CHILDREN WITH DISABILITY AUSTRALIA (CDA) BOARD AND STAFF Melinda Ewin (QLD) Chair Heike Fabig (NSW) Secretary Cheryl Pattrick (ACT) Treasurer Cale Dalton (SA) Liz Kelly (VIC) Bruce Young-Smith (NT) Stephanie Gotlib Executive Officer Jane Appleton Administration Manager Naomi Anderson Volunteer

CDA MEMBERSHIP IS FREE FOR FAMILIES! Service providers, organisations and other interested persons are welcome to join and enjoy the benefits of CDA associate membership for an annual fee of $55 (GST Inc). For more information visit www.cda.org.au or phone 03 9815 1094 or 1800 222 660. Children with Disability Australia Suite 2, 98 Morang Road, Hawthorn VIC 3122 Phone 1800 222 660 or (03) 9815 1094 Fax 03 9818 1999 Email info@cda.org.au Web www.cda.org.au Family Voices magazine is published by Children with Disability Australia. The opinions expressed in Family Voices are not necessarily those of CDA staff or Board. Articles in Family Voices may be reproduced in other forums but we ask that you include written acknowledgement of the source and obtain permission beforehand. Family Voices is available in rich text format on request. Website links to more information are noted throughout the magazine but if you donâ&#x20AC;&#x2122;t have access to the Internet, contact the CDA office and we can send you a print copy.

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Children with Disability Australia (CDA) is a not for profit national organisation representing children and young people with disability aged 0â&#x20AC;&#x201C;25 years and their families. A crucial part of our role is to provide a link between the direct experiences of children and young people with disability and their families to federal government and other key stakeholders. This link is essential for the creation of a true appreciation of the experiences and challenges that make up the lives of children and young people with disability and their families. CDA believes that children and young people with disability should have the opportunity to live meaningful and fulfilling lives within safe, supportive and appropriate environments. CDA works to achieve these aims by: Educating national public policy-makers and the broader community about the needs of children and young people with disability and their families. Advocating on behalf of children and young people with disability and their families to ensure individual choices and the best possible support and services are available from government and the community. Informing families about the rights and entitlements of their child with disability to services and support. Celebrating the successes and achievements of children and young people with disability. CDA Membership includes copies of our Family Voices magazine and strengthens the united voice of children and young people with disability and their families. In coming months members will be able to access a separate section of the new CDA website which will allow greater opportunities to contribute to discussions and provide input to the work of CDA. Use the membership form on page 33 of this edition of Family Voices to join.

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WELCOME — EXECUTIVE OFFICER Welcome to the second edition of Family Voices for 2010. It is a time where much of the disability community is focused on the idea of a new disability care and support scheme, which is often referred to as a national disability insurance scheme. Many of you will be aware that the Productivity Commission in presently conducting an inquiry into the possibility of a new national disability scheme. CDA received funding through FaHCSIA to engage our membership and constituents in all stages of the Productivity Inquiry into disability care and support. This is not an easy task given that we have approximately 5000 members from all corners of Australia. For the initial stage of consultation, CDA members have been sent a questionnaire requesting feedback. I would love to have the time and resources to be able to speak to you all personally but it is not possible. I am mindful that the questionnaire format was not ideal but it seemed the most effective way of reaching you all in the short time period and with limited resources available. I have emphasised in my accompanying letter to the questionnaire that there is no requirement to respond to every question. It is a guide for your feedback and it can be completed comprehensively or you can respond only to some areas. Alternatively, it is okay to send CDA a short email with your opinions. We are all acutely aware that our present system is in crisis and now we have a once in a lifetime opportunity to contribute our ideas about how we think a new system should work. I am strongly of the belief that it is imperative the experiences and wisdom of families of children with disability need to be presented to the Productivity Commission. So, make sure I know what your views are so that the CDA submission is as informed and powerful as possible!!

Other work of CDA over the past few months has continued to focus on education. CDA continues to seek the experiences of students with disability and their families. These experiences will be the basis of an extremely powerful presentation which CDA will make to the Minister for Education and Parliamentary Secretary for Disabilities and Children’s Services later in the year. I recently attended a meeting of the OECD (Organisation for Economic Co-operation and Development) whilst they were in Sydney. The OECD is conducting an independent review, Australia is participating in the OECD Review of Evaluation and Assessment Frameworks for Improving School Outcomes. This review aims to explore how evaluation and assessment systems can be used to improve the quality, equity and efficiency of school education. At the meeting CDA highlighted the breadth and depth of concerns held by many families relating to education. A background paper for this review had been prepared by the Department of Employment, Education and Workplace Relations (DEEWR). Students with disability were only a very minor focus of this background paper. Disability was referred to in one paragraph of the 91 page report. In this instance it was stated that “special provisions may be made to support individual students with special needs” when they complete NAPLAN assessments. The other reference related to the intention to include ‘disability’ as a background category/descriptor on the MySchool website. The relatively scant consideration of disability further highlighted the significant work CDA has to do to ensure that the needs of students with disability are a key and priority consideration in the Australian education system. The National Disability Strategy is due to be released in the near future. The Strategy is a whole of government 10 year policy framework which will outline targeted actions that will addresses barriers which confront people with disability.

Family Voices | August 2010

It will promote a more inclusive and universally accessible society for the benefit of the entire community. National disability peak bodies had the opportunity to comment on a draft in June. CDA participated in a consultation held in Canberra and a follow-up session in Melbourne. It was a unique opportunity to consult on a national strategy at this point of its development. CDA has committed to releasing an edition of Family Voices prior to the federal election. For really significant change to occur in the lives of children with disability, all of us must continue to strongly advocate for disability to be a priority on the political and community agenda. Family Voices features interviews with the representatives from the major political parties who are responsible for the disability portfolio. It is imperative that we have as many conversations as possible with candidates for the federal election and make it clear to them that their position on disability influences how we vote. Finally, I thank everyone for their significant support of the official launch of CDA. It was a truly memorable occasion. It was an absolute privilege to work with all the children and young people on the day. I found them inspirational.

My life has been greatly enriched by disability in a personal and professional capacity and the launch was a salient reminder to me of this. Thank you to all the families who attended including those who came from interstate. Many colleagues from other organisations also attended from interstate to support Children with Disability Australia. I also would like to acknowledge the support of Bill Shorten, who officially launched CDA, and his ongoing commitment to improving the opportunities for children and young people with disability. The significant contribution which children and young people with disability make to our community was certainly evident to all and well and truly CELEBRATED. Everyone in attendance was also extremely mindful that although the key sentiment of the day was celebration that there is a massive amount of work to be done by CDA to truly ensure that rights and equal opportunities for children and young people with disability are fully recognised in the Australian community.

STEPHANIE GOTLIB Executive Officer

CDA’S GUI DI NG PRI NCI PLES • CHILDREN THE PRIORITY That the safety and well-being of children with disability is paramount and consistent with Australia’s obligations under the international Convention on the Rights of the Child and the international Convention of the Rights of Persons with Disabilities. • RESPECT For the views and interests of children with disability and their families. • RECOGNITION For contributions made by families to ensure the safety and well-being of children with disability.

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• INCLUSION To ensure that children with all types of disability, from all cultural and religious backgrounds and from different family structures are supported by the work of CDA. • RESPONSIVENESS To ensure that full advantage is taken of strategic opportunities that arise from the political and social policy environment that benefit children with disability. • CONSOLIDATION We will continue to strengthen our grass-roots membership base of families and community.

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CDA BOARD UPDATE The CDA Board travelled from around Australia to join members and guests of CDA to celebrate our launch in May. They have held meetings in May and June. Early in July they also participated in an intense one day training session on governance which focused on the role and responsibilities of Directors of a public company. The Board is very pleased to welcome Liz Kelly as a Director. Liz was appointed by the Board as the Victorian representative following the resignation of Lisa Thomas. We thank Lisa for her valued contribution to CDA’s work.

CDA’s annual general meeting will be held later in the year. In accordance with the CDA constitution, the positions of Directors which will be open for election are Melinda Ewin (Queensland), Cale Dalton (South Australia) and Liz Kelly (Victoria). Details of the annual general meeting will be forwarded to members. Copies of the CDA constitution can be obtained by contacting the office on 03 9815 1094 or 1800 22 660 (toll free number for regional and interstate callers) or a request can be made by email at info@cda.org.au

Left–Right: Cale Dalton, Lisa Thomas, Heike Fabig, Stephanie Gotlib, Melinda Ewin, Jane Appleton, Cheryl Pattrick and Bruce Young-Smith.

Family Voices | August 2010

FAMILY VOICES — YOUR RESPONSE IMPRESSED PARENT ‘I am a parent of a child with a disability. I have just received your magazine in its new format with the new name, and wanted to pass on my congratulations to you. The new name of the organisation is fabulous and much easier to say! Also, the new magazine format is much easier to read and extremely professional. I have always found your publication to be very helpful and commend you on the fact that you are at the forefront of changing things for the better for people with disabilities. I take great interest in the latest information you have been providing regarding a national disability insurance scheme (NDIS). I will write my family’s story for the ‘Your Story’ category one day! y!

Thank you, well done. I am very impressed.’

‘The new magazine at tractive. looks great! It’s very crease the Hopefully that will in others readership and help ent.’ realise our predicam

‘I LIKE YOUR NEW NAME, LOGO AND NEW LOOK MAGAZINE. CONGRATULATIONS!’

Send your comments and feedback on Family Voices to: Children with Disability Australia. Sutie 2/98 Morang Road, Hawthorn Vic 3122 or email info@cda.org.au

www.cda.org.au

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STADIUMBATTLE NEW MEMBER ‘Recently I saw your magazine at a carers’ support meeting and I would like to become a member of CDA.’

‘Our son is a Melbourne Storm supporter. He loves the rugby and our family also enjoy the game. In the old stadium at Olympic Park, we encountered the problem of there being no appropriate place to attend to my son’s toileting needs. Knowing they were building the new stadium, I contacted the management and spoke at length to them about the need to have toilets for people with disability and the need for several of the toilets to include accessible change places. They have been very supportive. Their toilets are indeed big enough to have change tables installed so that I and others will not have to place anyone on the floor. The management at AAMI Park have contacted me on several occasions for information and are now speaking to the Independent Living Centre to source the correct type of change tables for their toilets.

‘THE MAG LOOKS GREAT!’

‘LOVE THE FORMAT OF THE NEW MAG. LOOKING FORWARD TO SENDING IN A STORY.’

I can’t guarantee how many of the toilets will be fitted with tables, but it is a start. Going to watch the rugby and soccer at the stadium in the future will be easier and more dignified for people with disability. I may manage to get hoists installed if the government don’t make it mandatory first. I just wanted to let the mum from last issue know that she is not alone in her fight. There is now a sporting venue with appropriate facilities. I am constantly facing the same battles on behalf of my son. I too want the government to change the standard of toilets for people with disability to include personal care suites in all public buildings, shopping centres and other venues. People with disability deserve to be able to access the community with dignity and respect. It is a big battle that i’m willing to fight.

LATEST UPDATE AAMI Park in Melbourne have now installed an adult sized wall mounted hydraulic high/low change table in the largest toilet for people with disability. It is located on level one at aisle 37. There is only one at the stadium as the other toilets were not quite large enough. One is better than none. I am glad that they considered this need of people with disability following my discussions with them. It was also great that they emailed when it was completed and informed of its location.’

Family Voices | August 2010

MAKE YOUR VOTE COUNT TH E FEDERAL ELECTION A federal election is an important opportunity for strong advocacy to occur for children and young people with disability. Disability is not a high priority on the political agenda. This needs to change. One in five people have disability in Australia. It is estimated that one in eight people in Australia are carers of someone who needs assistance due to disability or health. People with disability, their families and carers make up a very significant part of the voting community. It is time the power of the disability vote was recognised. It is imperative that very strong voices are heard which state clearly that disability is a key issue affecting the Australian community and that related actions, attitudes and policies of political candidates inform very strongly our voting behaviour. So now is the time. Speak with the candidates in your electorate and share your child and family’s experiences of disability and demand to know what actions they individually and their party are undertaking to address relevant issues. It is also the time to take action in other parts of the community to have discussions about the lived experience of disability and the challenges currently faced by many children and young people with disability. Talk to your friends, neighbours, write to the paper or contact radio and television stations. The community needs to know why disability should be part of policy discussions. Let’s do our bit to ensure that kids with disability have a bigger voice in this election. CDA spoke with representatives of each of the major political parties who are responsible for the disability portfolio. Please note: Answers are displayed alphabetically by party.

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SENATOR RACHEL SIEWERT THE AUSTRALIAN GREENS Spokesperson on Disabilities

BILL SHORTEN AUSTRALIAN LABOR PARTY (ALP) Parliamentary Secretary for Disabilities and Children’ Services

SENATOR MITCH FIFIELD LIBERAL PARTY OF AUSTRALIA Shadow Parliamentary Secretary for Disabilties, Carers and the Voluntary Sector

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What have you learnt about the issues facing children and young people with disability and their families?

What do you find inspiring about children and young people with disability?

SENATOR RACHEL SIEWERT (The Australian Greens)

In WA we have a scheme where a family of a child with a disability adopts a politician and I was adopted by a family that lives very close to me. This experience has given me a unique opportunity to experience the problems and issues facing children and young people living with a disability. From trying to access support, funding, care, education, transport, accessibility, future employment options, whole of life planning, and dealing with the system. I think this scheme should be expanded to all states and territories and I would strongly encourage all politicans to become involved in such a scheme.

I think children and young peoples’ courage and determination is inspiring, their pleasure and joy in achievement should be a lesson to us all.

BILL SHORTEN (Australian Labor Party — ALP) Before I took this job, I thought I knew my country. But I had no idea of the number of people with disability who are living, basically, as second-class citizens because the way our society has been set up excludes them. I was not aware of the huge struggles faced by parents who just want their kids to have a good education and some opportunities. SENATOR MITCH FIFIELD (Liberal Party of Australia) When I took on the disability portfolio sixteen months ago I had been operating on the assumption that because Australia is a wealthy, advanced Western economy, people who have a disability get the support they need. I think this is the shared assumption of most Australians. But it’s not true. It’s a reasonable assumption to make from the point of view of a taxpayer. You pay your taxes and you assume government does its job. The true reality is only really appreciated if you or a family member has a disability or your profession gives you that exposure. Only then do you realise that our system is broken.

BILL SHORTEN (Australian Labor Party — ALP) The fact that they are all unique individuals. You need to recognise that they have good days and bad days like all kids, but I think that the courage that they show in coping with their conditions is something we can all learn from. SENATOR MITCH FIFIELD (Liberal Party of Australia) In my view the most inspiring thing about children and young people with disability is their enormous courage and optimism for the future. It’s impossible not to be motivated when you see young people with such zest for life and determination to overcome the challenges they face.

What do you think should be done to achieve greater community awareness and true social inclusion of children and young people with disability in our community? SENATOR RACHEL SIEWERT (The Australian Greens) I believe that removing structural barriers to equality of access to education, training, employment and community facilities would help significantly, as would improving funding for disability advocacy services and community education programs. BILL SHORTEN (Australian Labor Party — ALP) I think it has to start in schools. If kids go to a school where some students have a disability, it teaches them attitudes that they’ll take through life. But we need to make sure that people with disability are included in every part of life, public places, TV shows, politics, you name it.

Family Voices | August 2010

SENATOR MITCH FIFIELD (Liberal Party of Australia)

BILL SHORTEN (Australian Labor Party — ALP)

We need to change the community perception from looking at what a person can’t do to looking at what a person can. Initiatives such as Scope’s “See the Person” programs which encourages school students to appreciate what people with disabilities can achieve is a great way to improve community perceptions.

Not good. There are a lot of good people working hard, and we’ve done some good work as a Government. But the system is too crisis-driven to serve the people it is there to help.

We also need to do a better job of giving children with disability the educational opportunities they deserve. In particular, we need to address issues of accessibility and support in schools so that parents of children with disability have real choice when it comes to selecting a school for their child.

SENATOR MITCH FIFIELD (Liberal Party of Australia) Australia’s crisis driven and welfare-based system is leaving too many people behind. It is a patchwork system that is failing to provide students with the level of support they need, leaving them to fall through the gaps. Teachers are struggling to meet the needs of students with disabilities because of a lack of resources or relevant skills. There are too many stories about teachers who are overwhelmed and students who are not receiving adequate support.

Despite Australia being a signatory to the Convention on the Rights of Persons with Disabilities there are still many areas in which children and young people with disability are denied their rights. What do you think should be done to address this? SENATOR RACHEL SIEWERT (The Australian Greens)

How would you describe the current disability service system for children and young people with disability?

There needs to be a review of Australia’s performance against our obligations under the Convention to identify where we are underperforming and not meeting our obligations. An action plan must then be developed with clear timelines to improve our performance to meet all our obligations that ensures Australia does not deny children and young people their rights.

SENATOR RACHEL SIEWERT (The Australian Greens)

BILL SHORTEN (Australian Labor Party — ALP)

The current model for providing services is inadequate and under funded. It does not deliver personalised, flexible services and seems to be crisis driven, rather a planned whole of life approach to service delivery. The system gets even worse when a child turns 18 and no longer has access to educational support as a ‘child’.

I think all governments need to work to make sure that the rights of people with disability are not just theoretical but real, and that can be a difficult job. I think that advocacy agencies, which the Government supports with funding, also play a big role.

www.cda.org.au

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SENATOR MITCH FIFIELD (Liberal Party of Australia) There is a lack of awareness about these rights throughout the community. Many people with disabilities are unaware or unsure about the rights provided to them under the Convention. We must continue to educate the community on these rights. It is also important to educate people with disabilities to seek support when they feel their rights have been violated. Too often, a person may feel helpless in certain situations. There is help and support available, but we need to ensure people know where to find that help.

Theoretically, every child has the right to go their local school, yet the reality for many students with disability is very different. What will your party do to ensure that parents of children with disability have real choices about where their child goes to school?

SENATOR RACHEL SIEWERT (The Australian Greens) The Greens believe that universal access to high quality education is fundamental to Australia’s prosperity, environmental sustainability, well being and social fulfilment. We are concerned that many parents of a child with a disability have limited choice about a school for their child, and that many local schools are not set up to embrace and support children with a disability and include them in the school community We believe to improve choice we need to increase specialist teachers and support services for students and pre-school children with special needs, including those with a disability or a learning difficulty and increase funding for training and professional development for educators in all sectors of the education system. BILL SHORTEN (Australian Labor Party — ALP) You’re right this is a difficult area, and although schools are a lot more inclusive, and there are a lot more options than a generation ago, it’s still not perfect. The Gillard Government is

QUESTIONS FOR YOUR

LOCAL CANDIDATES You may wish to approach your local parliamentary candidates and ask them what they are going to do to improve the lives of children with disability and their families. These questions will give some ideas of issues you may wish them to consider.

What is your understanding of the issues facing children and young people with disability and their families?

What do you find inspiring about children and young people with disability?

What do you think should be done to achieve greater community awareness and true social inclusion of children and young people with disability in our community?

How would you describe the current disability service system for children and young people with disability?

Despite Australia being a signatory to the Convention of the Rights of Persons with Disabilities there are still many areas in which children and young people with disability are denied their rights. What do you think should be done to address this?

Family Voices | August 2010

When was the last time you spent over an hour with a child or young person with a disability?

What are your views on the need for a disability care and support scheme?

Q10

What will your political party do to assist children and young people with disability if they were successful in winning the next federal election?

www.cda.org.au

undertaking a review of how we fund schools, not just in terms of disability, but overall. I hope this will come up with a model that better recognises the needs of students with disability. SENATOR MITCH FIFIELD (Liberal Party of Australia) It is important to support initiatives to provide and improve accessibility and support for children with disability in schools. We donâ&#x20AC;&#x2122;t want to see children turned away from a school on the basis of accessibility. There is also the issue of the inequality of the level of support given to students with disability at independent schools compared with government schools. We must ensure that adequate support is provided to schools and parents to ensure all children are given the best possible education.

There are significant systemic and community barriers in the Australian community which mean many children and young people are denied the right to an ordinary life. What do you see as the key areas that need to be addressed to ensure children and young people with disability have the same opportunities as other children in the future? SENATOR RACHEL SIEWERT (The Australian Greens) The Greens believe that all Australian children should have equal access to quality education and healthcare, a decent standard of living, and life opportunities to reach their full potential. We believe that access to community services that address the needs and aspirations of excluded groups like children with a disability are fundamental to delivering on the promise of social inclusion and building a fairer, smarter, cleaner and Greener future. We remain concerned that many of the occupations that previously gave people with a mild physical or intellectual disability meaningful work have been wound up, but remain hopeful that new developments in social enterprises may deliver positive outcomes.

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The Greens believe that a commitment to social inclusion must cut across all areas of government policy and must be grounded in the meaningful participation of those affected in the decisions which impact upon their lives. We are extremely disappointed by the yawning gap between the rhetoric and the reality of social inclusion.

SENATOR MITCH FIFIELD (Liberal Party of Australia) What I keep hearing from parents of children with disability is that their children need more support when they reach school age. A brighter future for these children means the chance to participate as fully as they can in wider society. That means providing them with every opportunity to succeed in their education. One aspect of achieving this is maximising choice. Every parent and their child should have the opportunity to make their own educational choices and not be restricted by physical or other constraints. That means equipping more schools with the facilities and teaching expertise needed to properly support children with disability. It is also important that young children receive the early intervention they need. Often, this can make a dramatic difference to what a child is ultimately able to achieve.

When was the last time you spent over an hour with a child or young person with a disability? SENATOR RACHEL SIEWERT (The Australian Greens) Last month. BILL SHORTEN (Australian Labor Party — ALP) That’s a good question. I’ve spent plenty of time with groups, at some of the special schools I visit, such as the Western Autistic School in Melbourne. BILL SHORTEN (Australian Labor Party — ALP)

SENATOR MITCH FIFIELD (Liberal Party of Australia)

Education is important, and eventually so is work. To have a job is the key to being included in society and I think we need to spend more time thinking about how people with disability can be properly employed. As out society ages we’ll need all the workers we can get, so things that get people with disability into jobs really benefit us all in the long run.

It was great to be at the launch of Children with Disability Australia in May. A few nights ago I had the privilege to launch an art exhibition by young artists with disability in Melbourne who I periodically catch up with.

Family Voices | August 2010

What are your views on the need for a disability care and support scheme?

SENATOR RACHEL SIEWERT (The Australian Greens) I understand there that is an urgent need for transformative and sweeping changes to the way services are delivered and believe that a better approach is needed. I support the principles of the proposal for a National Disability Insurance Scheme. Such a Scheme provides an excellent framework to provide better care and support to those living with a disability and their carers. There is a more detailed policy paper on this issue on my website.

SENATOR MITCH FIFIELD (Liberal Party of Australia) Australians with a disability should be supported properly regardless of how they acquired their disability. The current tangle of schemes that capture some people but not others is inadequate to say the least. The concept of a national scheme that moves to a support system based on need rather than one based on rationing, location and the circumstances through which disability was acquired is worthy of serious and thorough examination. The Coalition supports the referral of the concept of a National Disability Insurance Scheme to the Productivity Commission for inquiry and we will take the recommendations seriously when they are released in the middle of next year.

What will your political party do to assist children and young people with disability if they were successful in winning the next federal election? SENATOR RACHEL SIEWERT (The Australian Greens) The Greens will continue to campaign for change in a variety of areas. In particular we look forward to the release of the Productivity Commission’s report on its inquiry into the proposal for a National Disability Insurance Scheme and will be there after the election keeping pressure on the Government to take the necessary action on the report and recommendations of the inquiry. We think such a scheme has to be a priority for action. BILL SHORTEN (Australian Labor Party — ALP) BILL SHORTEN (Australian Labor Party — ALP) I think that a care and support scheme, some kind of insurance scheme is the best way to deliver better services, and early intervention for people with disability. The demands on the current system are set to grow hugely as our population ages. The Productivity Commission is investigating this at the moment, and I think they recognise that the current system needs to change.

www.cda.org.au

You’ll have to watch this space. There will be things announced during the election campaign. SENATOR MITCH FIFIELD (Liberal Party of Australia) Throughout the election campaign we will be progressively announcing policies outlining our commitments for Australia’s future. These policies will cover a number of issues of relevance to children and young people with a disability.

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D I S A B I L I T Y PO L I C I E S

AT TIME OF WRITI NG FAMI LY VOICES THE AUSTRALIAN GREENS The Australian Greens have announced their commitment to transformative change in disability support services and support the principles underpinning of the proposal for a National Disability Insurance Scheme. The Greens will work with Australia’s next government to ensure the rights of people living with a disability are upheld, and that personalised support services are made readily available. For futher information contact: Rachel Siewert 1/151 Brisbane St, Northbridge WA 6000 Phone: 08 9228 3277 or 1300 881 218 Email: senator.siewert@aph.gov.au

AUSTRALIAN LABOR PARTY The following new initiatives have been announced: › Accessible communities — infrastructure grants of up to $100,000 to local councils to make buildings and

public spaces, such as playgrounds, swimming pools, public toilets, and town halls, more accessible for people with disability. These grants will be offered competitively and be based on a matched contribution from local governments, with the Gillard Labor Government providing total funding of $5 million. › An additional $1 million will be provided for digital playback devices and improved access to digital content in public libraries around the country to increase the accessibility of print material, such as books and newspapers, for people with vision and physical impairments and learning disabilities that have difficulty reading traditional printed materials. › Leaders for Tomorrow — a new national program to help people with disability to become leaders in business, the community and government through mentoring and leadership development. The new $3 million program will provide 12-month intensive leadership support for up to 200 people with disability, including matching them to a mentor in their field of interest. › ‘Attitudes’ website — a new disability website will be created in partnership with the ABC to raise awareness of people with disability and disability issues. It will be developed and edited by people with a disability and provide them with a national voice. The Gillard Labor Government will provide $500,000 to establish the website. › A better start in life for children with disability — Children under 6 years old diagnosed with sight and hearing impairments, cerebral palsy, Down syndrome or Fragile X will be eligible to receive up to $12,000 fore early intervention services.

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Family Voices | August 2010

DISABI LITY POLICI ES (CONT...) › A Medicare rebate for the development of a treatment and management program will be available for children under the age of 13 and for up to 20 allied health treatment services per child in total. › National Disability Strategy — The draft strategy was released. This is a 10-year national plan to improve the lives of people with disability, promote participation and create a more inclusive society. › Supported Accommodation — Capital grants will be provided to community organisations to construct up to 150 new supported accommodation or respite places Further initiatives will be announced throughout the campaign. For futher information contact: Bill Shorten Suite 1A, 12 Hall Street, VIC 3039 PO Box 214, Moonee Ponds VIC 3039 Phone: 03 9326 1300 Email: bill.shorten.mp@aph.gov.au

LIBERAL PARTY OF AUSTRALIA Yet to release main disabilities and carers policy, but we will be announcing it between now and election day. › Education Tax Rebate. This will allow families to claim education expenses associated with special education for children with disabilities. The amount of the proposed rebate is $500 per year per child in primary school and $1000 per year for secondary school students. › Education Card. This scheme commits to securing a national agreement on definitions of disability with the aim being of making funding nationally consistent for students with disability. This card will provide students with portable funding of up to $20,000. The funding will follow the student and be paid directly to educational institutions. The scheme will initially be available to students with significant level of disability and be expanded over time to other students with disability. For further information contact: Senator Mitch Fifield 42 Florence Street, Mentone VIC 3194 Phone: 03 9584 2455

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A big ger voice for kids

CDAâ&#x20AC;&#x2122;S RESPONSE Recent days have seen children with disability receive long awaited attention on our national political agenda. It has been a long hard road to achieve recognition of the experiences of children with disability and their families. Never before have we seen disability announcements in week 2 of a campaign. Historically children with disability have been seen as a cost and burden to society. Traditionally they have been seen as objects of pity that need help and charity. As a consequence the society has typically held low expectations for achievement, participation and contribution of children with disability to our community. The introduction and ratification of the Convention of the Rights of Persons with Disabilities, of which Australia is a signatory, has changed the way that policy is made in this area. Australia now must seriously tackle the environmental barriers which affect full and equal participation in society. Consequently, the language being used by politicians is changing. Language now used around disability is now characterised by concepts of rights, social inclusion, access and participation. The leaders of the two major political parties have spoken about the rights of children with disability through major policy announcements

this week. Both have acknowledged the need to ensure targeted assistance is more accessible to ensure children with disability have greater opportunities to access and achieve in life, be it early intervention or school support.

Education is one of the most significant concerns affecting children with disability and their families. Julia Gillard announced increased availability of early intervention to children aged under 6 with disability and the availability of a range of Medicare funded treatment and diagnosis services for older children. The need and value of early intervention is well recognised within our community however much discussion this week focussed on how the government would fund such an initiative. This is an important consideration but somehow these vital services were being put in the light of an optional extra rather than an essential and imperative service for children with disability. Many families endure inordinate waits for these services and extensive financial burden.

Some children simply miss out. It is clearly unacceptable for the community to tolerate delays in other circumstances yet where disability is concerned it has somehow evolved that the status quo is that children with disability are lucky to receive adequate levels of service and support. The amount of advocacy to increase early intervention services has been immense. Community groups, families, people with disability and indeed Bill Shorten have been instrumental in lifting awareness of disability within the government and wider community. The result is arguably a small gain. A significant group of children with specific diagnosis of sight and hearing impairment, Fragile X, Down syndrome and cerebral palsy will now have greater access to early intervention. There are undeniably many other children who have been diagnosed with a different type of disability, or who do not yet have a definitive diagnosis, who it is imperative receive timely and adequate early intervention. The â&#x20AC;&#x2DC;Education Cardâ&#x20AC;&#x2122; announced by Tony Abbott is an important initiative in that it attempts to address a significant disparity confronting children with disability and their families. Education is one of the most significant

Family Voices | August 2010

concerns affecting children with disability and their families. The issue around choice of school and the availability of funding for support for students with disability is important. Presently there are significant discrepancies between States and Territories regarding funding available for students with disability. Currently, the levels of funding available if a student with disability attends a private school are minimal. The option of ‘choice’ of school is therefore very different where children with disability are concerned. Many families have sought this portability and choice. Increasing the quantum of funding to school support is also very welcome but there cannot be another island program competing with State and Territory programs or introducing additional complexity with different funding levels. The proposed amount of up to $20,000 would not adequately cover the educational support and inclusion costs for many students with disability. Some States, in fact have higher levels of funding. It is imperative therefore to clarify how the proposed ‘Educational Card’ will sit with existing funding programs for students with disability Harmonising definitions of disability is something that will bring consistency to disability education but is not the highest

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priority. More serious reform in the education system is needed to ensure improved educational outcomes. Students with disabilities currently fare 30% worse than other students at school, so it’s clear we need more than top-up programs or definitional changes to make inroads that are needed.

to be implemented which must include at a minimum resource expansion across the board for education and support, benchmarking good teacher training and practice, funding dedicated teacher and aide training, improved measurement of student social and educational outcomes, the creation of clear pathways from early intervention to school and then later to adult life and greater accountability mechanisms. The announcement by the Government of the National Disability Strategy is the one that has the best chance of addressing this long list of reforms. It is a roadmap for action that involves the States and Territories and the education sector. This announcement was largely missed by the media because it didn’t come with a price tag, but its 10-year ambition is profound.

As experts will attest outright school performance is not the only important thing about school life. Sadly many families of children with disabilities report their children are subjected to limited opportunities, low expectations, exclusion, bullying, discrimination, assault and violation of human rights while at school. It is hoped that further polices will be released throughout the campaign which address many of the other very significant issues regarding education and students with disability. A clear educational strategy needs

So after a week, do I jump for joy because disability rates? Well maybe a small skip. I am realistic that I too have a lifetime of advocacy to ensure children with disability have a regular place on the political agenda.

STEPHANIE GOTLIB Executive Officer

A big ger voice for kids

CDA L AUNCH Children, families, policy makers, politicians, young people, advocates, policy makers, bureaucrats, service providers and supporters all gathered at Melbourne Town Hall on 18 May to celebrate the launch of Children with Disability Australia. Our guests were greeted by students from Ascot Vale Special School. Name tags were efficiently given by Mathew, Josh, Lincoln and Oliver. Anna and Conor greeted Bill Shorten with a level of enthusiasm which would be difficult to match. The official launch program was then professionally and seamlessly overseen by our two exceptionally capable masters of ceremonies, Ariane and Danny. They both also gave inspiring speeches.

Finally, the Wild Divas engaged everyone with their enthusiasm and energy when they skilfully entertained the crowd with their uplifting musical performance.

THANK YOU EVERYONE.

L A U N C H S P E EC H E S guests including Bill Shorten, Parliamentary Secretary for Disabilities and Children’s Services.

ARIANE Good morning everyone. I would like to extend a warm welcome to children, families, supporters of Children with Disability Australia and official

Children with Disability Australia started 10 years ago when a group of parents were very concerned about the limited opportunities available for children with disability. There was no national voice for kids – no way of saying to the government and others what kids and their families were experiencing. There was no link between the real experiences of disability and policy. Since then it has been a long road – in

fact a 10 year journey – where lots of parents have worked extremely hard and we are here to celebrate today the official launch of the national peak body – Children with Disability Australia. Children with Disability Australia is extremely passionate about providing a bigger voice for kids with disability and their families in the Australian community. Children with Disability Australia believes that all children should have opportunities to live meaningful and fulfilling lives within safe, supportive and appropriate environments.

Family Voices | August 2010

I am excited to be a part of the Children with Disability Australia launch today because they focus on helping advocate for young people with disabilities. In my opinion as Australians we need to have more organizations like CDA to help us communicate with the Government to improve on what we can achieve as a country at a federal level, then we as people with disabilities can focus on the positives of our circumstances rather than the negatives and the set backs, which will make the general public more aware of what we go through on a daily basis.

launches don’t understand that disability affects all different people around the world — it’s about trying hard and working together so everyone can achieve their goals and ambitions. Everyone deserves a fair chance — everywhere in the world. Children with Disability Australia, or as I think it should have been called, Children with SUPER Abilities Australia, is about making sure all kids in Australia have a fair go. It is great to be part of that!

STEPHANIE GOTLIB DANNY I am here today because I want to get my message out to the people here. It’s not a ‘dis’ ability but a SUPER ability. Having a SUPER ability gives you assets — like for me — it’s having a pretty smart brain and SUPER amounts of knowledge in some areas. Having a SUPER ability also has its disadvantages. People that aren’t attending these

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Executive Officer Children With Disability Australia I am very lucky today as I have the wonderful task of acknowledging the fantastic contribution of the team who have contributed to today’s launch. Many of you would have been greeted by Anna, Conor, Daniel, Emily, Geordie, Sarah, Matthew and Josh. I want to thank these young people for doing such a fantastic job

and making such a wonderful contribution to the launch of Children with Disability Australia. You will of course soon be treated to an inspirational performance by the Wild Divas who Ariane will formally introduce to you shortly. As some of you may be aware, the operational team at Children with Disability Australia is quite small. The other half of the on the ground team is Jane Appleton. I personally wanted to thank you Jane — for your contribution above and beyond to assist with making the launch possible and also to the broader work of CDA. Last but not least, the other two absolutely amazing people who have made today truly memorable are our masters of ceremonies, Danny and Ariane. Not only are they doing an outstanding job with presenting but they have also been working very hard over the last couple months in preparing for the launch. They have assisted with planning the launch and have written their own speeches and introductions. I have personally found them extremely inspirational and I’m sure they have had the same effect on you this morning. In the discussions I had with Danny and Ariane about the launch they were very keen that the focus of the launch is on celebration and that today be a strong expression of the truly remarkable contribution

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children and young people with disability make to the Australian community. They were adamant about this despite their own personal experiences in which they have faced significant systemic barriers and inappropriate community attitudes throughout their short lives.

long, exhausting, exasperating fight for basic rights and entitlements, services, opportunities and real equal right for children and young people with disability. Put very simply, it shouldn’t be so hard – we shouldn’t have to demand that children and young people with disability be considered, included and have the same opportunities in life as their peers without disability. CDA recognises the central, inspirational and invaluable role families have in placing their children’s experiences on the Australian agenda. They are the reason we are here today.

I admit, suggesting that they may want to inform or advise our guests about some of their experiences. All of us who are familiar with the world of disability services and policy know that we need to make the most of every opportunity. I was however quickly reminded ‘it is a celebration not a protest’. That being said, I am only going to touch briefly on some of the other key reasons we are here, which to be honest aren’t so positive. I am very mindful of the journey many of the children and young people with disability and their families experience. For too many families, it is a

In our recent issue of Family Voices we raise attention regarding the right to access a toilet with dignity and what CDA consider to be some key issues of concern regarding education and students with disability. These are just two examples which highlight the very significant work which CDA has to do in the future. CDA is determined to change the political and community landscape to ensure children and young people with disability have a bigger voice and also have access to real and equal opportunities in all areas of their lives. Thank you.

BILL SHORTEN Parliamentary Secretary for Disabilities And Children’s Services No parent chooses to have a child with impairment. These children are not loved any less, the DNA-hardwired power of parenthood is too strong for that. But nevertheless, finding out that your child has a disability is always a shock. I’m told it is an emotion like grief, for the loss of the child that you dreamt of. Too often that shock is followed by isolation and anger, an anger at the lack of understanding in the community for your situation. Anger at the stares, or the unfeeling remarks, or the fact that the supposed experts, the doctors and teachers actually understand less than you do. Anger at the fight to get a fair go at school, and being made to feel like a troublemaker simply for demanding your child gets the same opportunities as everyone else. The Federal Government has provided CDA with seed

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funding over the last four years to help it grow to the point it is at today. To help your advocacy, your role in educating the community and celebrating what children with disability can achieve. I am delighted to announce that in the next financial year you will receive $162,000 to fund your work. I’m a former union man. I’m a believer in advocacy. I’m a believer that parents of children with disability are the ones who are best placed to understand their children’s needs. You believe that too, otherwise you wouldn’t be here. But while your involvement in this movement may be due to your own experiences, you must have quickly realised that you are not alone. That your experiences are shared by the 1.2 million severely or profoundly disabled people in this country, and the 500,000 people who are their full time carers. You are not just parents. You are also civil rights advocates. You are civil rights advocates because you are giving voice to citizens who are, literally, not heard. To children, who lack the power to fight for themselves. I want to do is take this opportunity to brief you on what I’ve seen since becoming Parliamentary Secretary for Disabilities and Children’s Services two years ago. Before I was elected I spent 14 years in the union movement ant let me tell you something. I thought I

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knew my country. I didn’t. The past two years have opened my eyes. What I’ve seen is that — hidden in plain sight — are more than one million Australians who are exiles in their own country. It’s shameful. Australians with a disability spend much of their time and energy battling systems that have been set up without their needs in mind. People end up beaten and exhausted and isolated. The same applies to disability organisations. They don’t have enough time. They don’t have enough money. And they are overwhelmed by wave after wave of human need — with our ageing population set to turn those waves into tsunamis. It’s apparent to me that we cannot continue putting blood, sweat and tears into systems that are inadequate today and will be overwhelmed tomorrow. We need to find a way to stop surviving and start thriving. I’m talking about uniting behind reforms that are achievable and will make a difference. I’m talking about a National Disability Insurance Scheme. The National Disability Insurance Scheme is currently being considered by the Productivity Commission. Many people

believe the National Disability Insurance Scheme is our best chance to deliver a lasting change that gives Australians with a disability equality, selfdetermination and entitlement. The chance to set up a system that delivers care when it is required, not through rations that run out at the end of the financial year. That offers help to parents when their child’s disability is diagnosed, not after they have spent two years on a waiting list watching their child’s condition worsen. That gives certainty to ageing carers.

But — as I said to the Disability Summit a few weeks ago — if that is the case and the National Disability Insurance Scheme is the answer Then, now is the time for those of us who think so to say so — and campaign for it. I’m not saying that to abrogate the Government’s responsibilities. We must take the lead, but I do not believe Government can provide the whole solution. We can get further faster if we educate and enlist the support of the general

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public and business community. We cannot afford to take progress for granted, though. Australia considered a National Disability Insurance Scheme once before – during the Whitlam Government. That opportunity was lost with the Dismissal — but has now been rediscovered. Thirtyfive years down the track, the Productivity Commission is now investigating how such a scheme could be implemented. It’s taken two years of hard work to get to this point. The Shut Out Report, the Way Forward Report from the Disability Investment Group, detailed the need for transformational change. Likewise, the impact the ageing of our population is beginning to be understood. There is greater awareness and greater understanding — and this awareness and understanding has created a great opportunity.

We are on the verge of a transformational change in the way we deal with disability. We are that close. But a strong and united, ebullient, strategic campaign is required to make it a reality. The details of the Scheme are yet to be worked out. There will be complexities, arguments about scope and definition and how best to structure it, and how best to administer it. But we must not be diverted or delayed from our goal. Our goal is transformational change: The kind of change that will put Australians with a disability on a secure footing, and deliver gains that cannot be wound back. Some people say this is a once-in-a-generation opportunity for social and economic reform. I don’t. We can’t afford to think the chance to implement a National Disability Insurance Scheme will come around again in a generation if we miss this chance. I do not believe people

know what an NDIS means. Not yet. I do not believe people fully grasp the immediate gain for each and every person in this nation. Not yet. The challenge is to ensure people know enough about the magnitude of the issue to support the solution that the National Disability Insurance Scheme offers. To do so requires making the general public understand that what is happening to people with a disability could happen to them. The point also needs to be made that an NDIS will deliver huge benefits for people with disability and should not, in the long-term, lead to an increase in taxes or government budgets. What I’m talking about is starting a national conversation about disability — and turning that conversation into a national movement for change. It can and must be done. The task is ours to complete. Progress must not be taken for granted.

L AUNCH THAN KYOUS The launch would not have been possible without the support and commitment of the following people and organisations Ascot Vale Special School, Juliette Borenstein, Devon Brown & Family, Megan Brown, Sophie Carasso, Janice Chan, Katrina Clark, City of Melbourne Community Grants program, Emerald Cooney, Cale Dalton & family, Clifton Hill Primary School, Degani Clifton Hill, The Dickson family, Melinda Ewin & family, Heike Fabig & family, FaHCSIA, Tom Fauvette, Victoria Garner, Fiona Gullifer, Darrell Harding, Phil Heuzenroeder, Lincoln Holt, Helen Johnson, Lauren Konyn, Denise Leembruggen, Diane McCarthy, Elizabeth McGarry, Melbourne Town Hall, Jenny Newstead, Cheryl Pattrick & family, Janine Scott, Lisa Thomas & family, Louise Walters,Sue Wilkinson, Mara Wookey and Bruce Young-Smith & family.

Family Voices | August 2010

EDUCATION — YOUR EXPERI ENCE?

As part of our ongoing commitment to raise awareness of the experience of children and young people with disability, Children with Disability Australia, will be presenting stories detailing our children’s experiences of education to the Minister for Education and Social Inclusion and the Parliamentary Secretary for Disability and Children’s Services later this year. The aim of this project is to inform the government of the profound and diverse nature of issues impacting on children with disability and their families in relation to education. We invite you to write about your experience of education — the good, the bad and/ or the indifferent. Contributions are sought from family members. Kids are welcome to contribute if parental consent is provided. It may be a powerful paragraph or it may be a lengthier contribution. We request that feedback is no longer than two pages.

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CDA is continuing our tradition of “telling it like it is” and believe these stories will present an extremely powerful message. Potential contributors are welcome to contact CDA via email or phone if they would like to discuss their experience or need further information. Finally, if people prefer that their identity is withheld from their contribution that request will be respected.

CONTACT: STEPHANIE GOTLIB Executive Officer Phone (03) 9815 1094 or 1800 222 660 Email stephanieg@cda.org.au Postal Address Suite 2, 98 Morang Road, Hawthorn 3122

A big ger voice for kids

YOUR STORY N EVER UN DERESTIMATE JOSH Josh is 15 years old. He is 195 cm tall (6ft 4) and takes a size 14 shoe. He is an extremely determined young man. ‘My name is Josh not Joshua’ is his war cry. Josh was born with no known developmental issues. At 18 months old he began showing signs of poor muscle tone, lack of eye contact, delayed speech development and was not an overly happy child. By the time he began school, his concentration was extremely limited and his reading and receptive abilities were well below average. Josh experienced intense teasing and fighting and he was unable to form close peer friendships with others. As parents, Bob and I have had to fight hard and strong, to advocate for Josh, as he moved through his early years of school. We were his voice. The school system was difficult. Numerous times we were told that Josh needed strict rules and discipline. Josh most of the time was unable to understand or comprehend why he was on detention for a week or two. After five minutes of the incident occurring he would usually forget what he had done. The school learnt through us how to better support Josh. We had some setbacks. Eventually however, we all ended up on the same page, working together for Josh. The local school counsellor was another matter we had to deal with during the early years. She had different expectations for Josh than we did as parents. She was of the view that Josh’s ability to work as an adult would be suited to delivering pamphlets in letter boxes. WHAT?? This was said to us when Josh was just 7 years old. Her predictions regarding Josh’s future

made us extremely angry. As parents, we were absolutely determined that Josh would have every opportunity to reach his full potential. Moving into the special unit at high school was the start of a whole new world. There were more children in the school and the other students and teachers were not familiar with his aggression, outbursts and support he required. Our meetings started all over again. We decided to introduce something into Josh’s life which would allow him the opportunity for physical achievement. He was always an average swimmer. Like his older brother, he always enjoyed the water. Both the boys started swimming lessons and soon moved up into junior and senior squad development swimming. They competed in local and school swimming carnivals. Josh has continued to excel at swimming. This year he represented not only his school but NSW in the National Swimming Schools Championships held in Brisbane this year. Josh won two gold, three silver and two bronze medals in the multi-class events. Josh is often featured in the local paper because of his swimming achievements. Two months ago, Josh joined the Special Olympics group. Now at the age of 15, Josh has a number of personal challenges that he wants to achieve. He wants to drive a car like his brother, to have three jobs so he can buy his grandmother a puppy AND swim at the Special Olympics for Australia. Swimming has been the best thing in Josh’s life. He has had remarkable achievements and excelled at something many others are unable to. Josh’s personal determination, constant and strong support by his family and friends and a refusal by all to accept low expectations imposed on them have ensured that Josh can continue to say loud and clear ‘I’M JOSH NOT JOSHUA’.

Lorraine Alford — NSW

Family Voices | August 2010

TH E FI RST PEOPLES DISABI LITY N ETWORK (AUSTRALIA) DAMIAN GRIFFIS

By any measure Aboriginal and Torres Strait Islander people with disability are amongst the most disadvantaged members of the Australian community. They often face multiple barriers to their meaningful participation in their own communities as well as the wider community. Double disadvantage is faced due to discrimination on the basis of their Aboriginality as well as their disability. For Aboriginal and Torres Strait Islander children with disability the discrimination they face can be particularly acute.

substance abuse and the breakdown of traditional community structures in some areas. Aboriginal people with disability are significantly overrepresented on a population group basis among homeless people, in the criminal and juvenile justice systems, and in the care and protection system (both as parents and children).

The prevalence of disability amongst Aboriginal and Torres Islanders is significantly higher than of the general population. Until recently the prevalence of disability in Aboriginal and Torres Strait Islander communities has been only anecdotally reported. However a recent report by the Commonwealth Steering Committee for the Review of Government Service Provision made the following conclusions:

By any measure Aboriginal and Torres Strait Islander people with disability are amongst the most disadvantaged members of the Australian community.

EXECUTIVE OFFICER THE FIRST PEOPLES DISABILITY NETWORK (AUSTRALIA)

The proportion of the indigenous population 15 years and over, reporting a disability or longterm health condition was 37 percent (102 900 people). The proportions were similar in remote and non-remote areas. This measure of disability does not specifically include people with a psychological disability. The high prevalence of disability, approximately twice that of the non-indigenous population, occurs in Aboriginal and Torres Strait Islander communities for a range of social reasons. These include poor health care, poor nutrition, exposure to violence, psychological trauma (e.g. arising from removal from family and community),

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Historically much of the focus on Aboriginal people with disability has been from a health perspective. Whilst this is essential, particularly regarding primary health interventions, it has come at the cost of failing to recognise the social aspects of Aboriginal disability. This has meant that the barriers that produce discrimination against Aboriginal people with disability remain firmly entrenched and the general well-being of Aboriginal people with disability has not improved in any meaningful way. Furthermore the impact of colonisation and the resultant dispossession of land and displacement from places of cultural significance have had an

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impact on the lives of many Aboriginal people with disability which is difficult to measure. All of these factors contribute to the fact that disability rights from an Aboriginal and Torres Strait Islander perspective is an emerging social movement. In many ways this social movement is starting from a baseline position. Aboriginal and Torres Strait Islander people with disability are at the periphery of all aspects of the disability sector.

The proportion of the indigenous population 15 years and over, reporting a disability or long-term health condition was 37 percent. A fundamental way to promote and protect the human rights of Aboriginal and Torres Strait Islander people with disability is by empowering Aboriginal and Torres Strait Islander people with disabilities themselves, so that they can not only effectively self-advocate but importantly share their experiences with other Aboriginal and Torres Strait Islander people with disabilities particularly with regards negotiating an often complex and unfamiliar service system. To this end a new national peak organisation representing Aboriginal and Torres Strait Islander people with disability, their families and carers has been established. It is known as the First Peoples Disability Network (Australia). It is intended that the new national peak will be formally launched at the end of 2010. Also there are existing and emerging networks of Aboriginal and Torres Strait Islander people with disability in NSW, Victoria, South Australia and Queensland with other states and territories coming online in the next few years. With regard to Aboriginal and Torres Strait Islander children with disability the degree of unmet need is vast and difficult to accurately quantify. This can often be because parents and carers and other family members are reluctant

to seek help and support because they fear that there child may be taken away and they fear the consequences of being judged as bad parents. Consistently, community elders, parents and carers raise concerns about a range of barriers facing Aboriginal and Torres Strait Islander children with disability. Several community elders frame their concerns in the following terms: while they are unable to make any meaningful difference to their own situations, they express a strong desire to see change happen now so the next generation can have their needs met. Aboriginal children with disability continue to be over-represented in the out-of-home care environment. There are a range of reasons as to why this continues to occur; these include: › Aboriginal parents/carers feel reluctance to ask for help due as outlined earlier. › Lack of awareness of what supports may be available. › Where services do exist they are often not culturally accessible. › Parents/carers seek help or are identified as needing assistance only when their situation has reached crisis point, at which time it is likely that the child/ren will be removed. › Lack of sufficient resources to be able to provide a reasonable level of care for their child with disability. For example access to basic aids and appliances, medical supports, regular medications or other medical supplies. › Traditional family and community structures are seriously fractured, with the result that traditional ways in which support could be accessed are no longer viable in some communities. › Some incidences of stigma toward Aboriginal parents of Aboriginal children with disability sometimes referred to as being a consequence of ‘married wrong way’.

Family Voices | August 2010

The First Peoples Disability Network (Australia) as the new national peak organisation representing Aboriginal and Torres Strait Islander people with disabilities, and their families and carers believes that: › Significant investment needs to be made to change perceptions that service providers, be they government or non-government, and have of Aboriginal communities. This will take a concerted outreach approach on the part of service providers and a long term approach that recognises the need to focus upon developing relationships with Aboriginal communities that are based on trust and equitable partnerships. › Recognition that Aboriginal parents/carers and Aboriginal communities in general need more resources to be able to meet the needs of Aboriginal children with disability. This includes development of more Aboriginal owned and operated services. › A focus upon early intervention programs that will address the ongoing problem of Aboriginal parents/carers only engaging with service providers once they have reached crisis point or when their situation has been compulsorily notified.

CONTACT DETAILS FOR DAMIAN GRIFFIS First Peoples Disability Network (Australia) PO Box 47, Strawberry Hills NSW 2012 Phone (02) 9319 1422 Email damiang@pwd.org.au

FOOTNOTES 1 Commonwealth Steering Committee for the Review of Government Service Provision Overcoming Indigenous Disadvantage Key Indicators 2005 Report. Page 3.6 2 Aboriginal people are 11 times more likely to be imprisoned than other Australians. Source: Overcoming Indigenous Disadvantage Key Indicators 2005; Steering Committee for the Review of Government Service Provision. There is no empirical evidence to quantify the number of Aboriginal people with disability in particular with intellectual disability and mental illness in the criminal justice system. The prevalence of intellectual disability for instance in the prison population is often contested with wide variation in percentages. However a report by the Law Reform Commission published in 1996 entitled People with an Intellectual Disability and the Criminal Justice System noted that 12-13% of the prison population were people with an intellectual disability. 3 Overcoming Indigenous Disadvantage Key Indicators 2005; Steering Committee for the Review of Government Service Provision states ‘The rate of children on care and protection orders (for a combination of all states and territories except NSW) was five times higher for indigenous children (20 per 1000 children in the population aged 0 – 17 years) than for non-indigenous children (4 per 1000 children). Pg 9.5

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A big ger voice for kids

YOUR STORY OUR STAR SHINES ON Previously I wrote a story of ‘Our Star’ who was then much younger. As a result of medical mismanagement she had severe cerebral palsy but was even then a shining star. I encouraged parents to ask questions of doctors if they had concerns and to always ask about procedures they didn’t understand. Above all, I wanted parents to believe in their children. Eight years on, what has changed? ‘Our Star’ is now fifteen. Tomorrow night she boards a plane bound for Barcelona to attend a conference for people with complex communication needs. She regularly presents to speech pathology students at university about her experiences using AAC (augmentative and alternative communication) and has talked to occupational therapy students about the joys and pitfalls of being hoisted in and out of a wheelchair. She has presented a paper at a national conference, and in two weeks will assist at a workshop about dancing with a physical disability. She attends a special school. This was a decision she was involved in making with the final choice being hers. ‘Our Star’ uses her eyes to access a PODD communication book and her communication device. She plans to be an advocacy for nonverbal people when she is older.

‘Our Star’ is part of the Queensland youth parliament this year. She has won an international award with two other teenagers about using communication devices.

people around you who believe in you and will stand by you.

She has skied, sailed, surfed, played wheelchair soccer and attended Girl Guides. She has travelled to four states in Australia and seven countries around the world. The journey has not always been easy. ‘Our Star’ has had hospitalisations for serious illness. She has had to work hard to communicate using her eyes, to learn to drive a power wheelchair, and to remain healthy enough to do all the things she enjoys. As a family we have made sacrifices, but we all sacrifice for our children, it is part of being a parent. We have had to adjust, modify dreams and reset goals.

‘Our Star’ will have to write her papers and essays for university with her eyes. She will have to communicate with peers, fellow students and lecturers. She will have to organise her life so that she is not over tired, can manage her workload and still has time to enjoy life. She will have to learn to overcome obstacles that are placed by people who never consider the needs of people who use wheelchairs or are non-verbal. Will she be able to do it? We believe so, and we will stand by her and watch her achieve the goals she has set herself. If she wants our help we will give it. ‘Our Star’ has learnt to believe in herself. She is determined and strong willed. She has become a self advocate — she has had to. A wise man once said ‘success is not a place at which one arrives but rather the spirit with which one undertakes and continues the journey’.

We have had to stand up and say ‘we believe our daughter can do this’ and then we have stood by her as she achieved her goals and dreams. The journey is not yet over. ‘Our Star’ plans to attend TAFE and university. To do this she will have to get a year twelve certificate which is not easy when you have decided to attend a special school. It is still achievable if you are committed to your goal, and you have

I have learnt many things in the last 15 years. I know I will learn more as I watch ‘Our Star’ continue to shine, but perhaps the most important is to believe in your child, have a dream for them, be their advocate and teach them to advocate for themselves.

MOTHER OF A STAR

Family Voices | August 2010

OUR CHILDREN ’S VOICE — DAVID WHAT’S IT LIKE HAVING A DISABILITY? Well, I suppose it’s hard but there’s some things I’m really smart at so I don’t really mind. I’m good at history and I’m good at gardening.

I get angry too easily. And when things don’t go the way I expected, I’m not that happy.

DOES YOUR DISABILITY HAVE A NAME? Prader-Willi Syndrome (PWS). Some people have it more servilely than others. Some people may not notice that I have PWS.

DOES YOUR DISABILITY AFFECT HOW YOU GO AT SCHOOL?

It’s hard when I come across people who are eating things that I’m not allowed to eat, especially when its someone who has the same disability.

When I was at primary school some people bullied me. Now in secondary school, it’s much better. It’s bad when people pretend to be your friend. I think it happens more to people with disability.

There are certain things I like to do, like get up at a certain time. If I can’t, then I don’t feel like myself that day.

WHAT ARE THE CHALLENGES YOU FACE DUE TO YOUR DISABILITY?

Sometimes when I’m on a social outing with other disabled people, I feel that people are looking at us and I’m not very happy about it. But I just ignore them and get on with what I’m doing.

CAN YOU TELL US A BIT ABOUT YOURSELF? I am 15 ½ and I like art, skateboarding, scootering, basketball, cricket and going to the gym. I go to Rossbourne school for people with learning difficulties. Lots of our work that we do there is based on life skills. It gives me a good education. I go to TAFE one day a week. I’m trying out one of the things that I might do for a job. I am doing plastering. I catch the train there and home again by myself. I recently got a cat. I like having a cat. She is like my best friend. Most people think that cats go off and do their own thing whereas my cat likes being around me!

HOW DOES YOUR DISABILITY AFFECT YOU? I have low muscle tone. If I found a four leaf clover, I would wish for that to be taken away and to make me taller. Then I could play in a higher division in basketball.

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I have strict rules with food. This means that I have to choose the most healthiest option. Some of the other challenges are if I’m doing a physical activity, it’s hard for me. I feel that I am going to fall down.

IF YOU HAD THE OPPORTUNITY TO TALK TO THE AUSTRALIAN PRIME MINISTER ABOUT DISABILITY WHAT WOULD YOU SAY? Don’t take away the funding or the freedom to go out. Give money for more services like respite and social outings.

WHAT ADVICE HAVE YOU GOT FOR THE AUSTRALIAN COMMUNITY ABOUT KIDS WITH DISABILITY? When I’m outside, please don’t stare. I’m just like you, I’m just an ordinary citizen. It makes me feel unwanted and that I should be inside.

Is your child interested in sharing their views in upcoming issues of Family Voices. Please phone or email CDA for further information.

A big ger voice for kids

OUR CHILDREN’S VOICE — ARIANE WHAT’S IT LIKE HAVING A DISABILITY? Having a disability is a crap experience and one that I wouldn’t wish upon any human being. It can affect you not only physically, like mine, but emotionally as well. However if I did not have cerebral palsy I would not have become an advocate for young people with disabilities. I would never have known about the Youth Disability Advocacy Service and my mum would never have founded the cerebral palsy support network.

CAN YOU TELL US A BIT ABOUT YOURSELF? I’m 17 years old, I have five siblings one of whom is my twin sister, Amorette. I am also an aunty to three nephews and two nieces. I have been in the field of youth advocacy for people with disabilities since I was 14 years old. I have been a member of the Youth Disability Advocacy Service committee since I started in this field. I have recently been appointed to the board of management for the cerebral palsy support network.

HOW DOES YOUR DISABILITY AFFECT YOU? My disability affects all four of my limbs differently, predominantly my left side.

DOES YOUR DISABILITY HAVE A NAME? Cerebral Palsy Spastic Quadriplegia

DOES YOUR DISABILITY AFFECT HOW YOU GO AT SCHOOL? Yes it does. I am a slow reader for example. I also have trouble typing and have very messy

handwriting, which only a few people can decipher. If I need to type and write something I dictate it to a scribe.

WHAT ARE THE CHALLENGES YOU FACE DUE TO YOUR DISABILITY? Access to public transport in particular trams, access to venues such as some theatres and restaurants. Another challenge I, and many other people with a disability, face on a regular basis is trying to get people to understand these challenges and increase public awareness. We also face another massive challenge on a regular basis, which is trying to get government figures to improve simple things such as transport, access to public venues and getting Bill Shorten and other members of parliament to realise the need for a national disability insurance scheme.

IF YOU HAD THE OPPORTUNITY TO TALK TO THE AUSTRALIAN PRIME MINISTER ABOUT DISABILITY WHAT WOULD YOU SAY? Basically how important it is to all people with disabilities that the government implements a national disability insurance scheme as quickly and efficiently as possible. I would also talk about the need for more accessible transport.

WHAT ADVICE HAVE YOU GOT FOR THE AUSTRALIAN COMMUNITY ABOUT KIDS WITH DISABILITY? I would tell them that they should not be afraid of us or treat us any differently to how they would treat a person without a disability. Throughout my life I have had members of the public come up to me, bend down and talk to me in a patronising way like a five year old. I have also had aides at three different schools bully me because they think they are going to get away with it and that I’m not going to do anything about it. If they thought that originally, they know now, that they were most definitely wrong.

Family Voices | August 2010

MEMBERSH I P I N FORMATION Children with Disability Australia is a national organisation representing children with disability and their families. We are a non-profit, community organisation. We work alongside families of children with disability.

Our members include an amazing range of people and families. Every new member adds strength to our efforts to advocate for improvements to services and supports for families of children with disability.

The initial drive to establish the organisation came during the late 1990s from an active group of parents involved with the Victorian based Association for Children with a Disability.

People wishing to support CDA can apply for full or associate membership. See membership application for further details.

Consultation with parents from other States and Territories indicated that there was a commitment to establish a national network that would focus on advocacy efforts to achieve better outcomes for families of children with disability from the Australian Government. At a meeting of parent representatives from all States and Territories held in Melbourne in March 2002, a decision was taken to proceed in establishing the Australian Association for Families of Children with a Disability (AAFCD) under the formal auspice of the Association for Children with a Disability. The organisation received funding through FaHCSIA in 2008 to become an independent incorporated entity supporting children with disability and their families. A decision was also made to change the organisation’s name to Children with Disability Australia. CDA will continue to provide advocacy and assistance to children with disability and their families. Children with Disability Australia remains extremely passionate about providing a bigger voice for kids with disability in the Australian community. We will persist in providing a link between the direct experiences of children with disability and their families to federal government and other key stakeholders. This link is viewed as essential for the creation of a true appreciation of the experiences and challenges that make up the lives of children with disability and their families.

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Membership is free for all families of children with disability across Australia.

MEMBERSHIP BENEFITS • Full members are entitled to vote at general meetings and can nominate for a CDA Board position. • Receive our Family Voices magazine which includes family stories and analysis of policy and advocacy issues. • Strengthen the voice of families of children with disability in the media and to government policy makers.

DONATIONS The generosity of our members and community supporters in providing donations is a key factor in the strength of our organisation. If you, or others you know, are in a position to make a donation, it will be greatly appreciated. All donations over $2 are tax deductible. Please contact Jane Appleton, Administraton Manager, if you wish to make a donation. Phone (03) 9815 1094 or 1800 222 660 Email janea@cda.org.au

A big ger voice for kids

MEMBERSH I P FORM/TAX I NVOICE ABN 42 140 529 273 All donations over $2 are tax deductible Name Address Suburb/town State

Postcode

Phone (

)

Fax (

)

Mobile

Email (Optional) Child’s name, date of birth and disability

I WISH TO APPLY FOR (PLEASE SELECT A CATEGORY) FULL MEMBERSHIP — FREE FOR FAMILIES parent/carer of a child aged under 26 years with disability sibling person with disability between the ages of 18 and 25 grandparent/foster parent

ASSOCIATE MEMBERSHIP — $55 (GST INC) PER YEAR — FULL FEE $11 (GST INC) PER YEAR — STUDENTS & UN-WAGED extended family of a child/young person with disability professional service organisation other (please specify) I would like to make a donation of $ or I want to pay by credit card d

VISA A

Payment enclosed Mastercard

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DECLARATION I hereby apply for membership of CDA. I am over 18 years. If accepted as a member I agree to be bound by the rules of CDA as per the CDA Constitution. Signature:

Date:

Send to CDA, Suite 2, 98 Morang Road, Hawthorn VIC 3122 Your personal information is collected only for the use of CDA for the purposes of disseminating support and information to our members.

Family Voices | August 2010

THAN K YOU Children with Disability Australia has Deductable Gift Recipient status from the Australian Tax Office. This means that all donations of over two dollars are tax deductible. We sincerely thank those who have provided donations. If you, or others you know, are in a position to make a donation, it will be greatly appreciated. All donations over $2 are tax deductible. The generosity of our members and community supporters in providing donations and pro bono support is a key factor in the strength of our organisation.

E M A I L A D D R E SS DO WE HAVE YOUR CURRENT EMAIL ADDRESS? CDA is currently in the process of updating our records. Could all members please contact us and inform us of your current email address. info@cda.org.au

SPONSORSH I P EXPRESSIONS OF INTEREST SOUGHT We sincerely hope all our members and friends enjoy our new look Family Voices magazine. As well as updating our magazine the Children with Disability website will also be revamped to provide more up to date information for our members in all States and Territories.

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Our magazine is enjoyed by a readership of approximately 15,000 families and disability sector organisations. We welcome those interested in sponsoring Family Voices to contact Children with Disability Australia. If you would like to advertise, please contact Jane Appleton at janea@cda.org.au

A big ger voice for kids

? At CDA we work in close cooperation with a range of other national organisations, including disability peak bodies. We encourage better working partnerships between groups and individuals working from a disability rights perspective. Family members are also encouraged to get involved with other organisations and support groups relevant to their child and family.

NATIONAL DISABILITY PEAK BODIES The Australian Federation of Disability Organisations Phone 03 9662 3324 TTY 962 3724 Web www.afdo.org.au Aboriginal Disability Network Phone 02 9319 1422 Fax 02 9319 1466 TTY 02 9318 2138 TTY Free call 1800 422 015 Email adnnsw@pwd.org.au Deaf Australia Inc Phone 07 3357 8266 TTY 07 3357 8277 Web www.deafau.org.au Blind Citizens Australia Phone 03 9654 1400 Freecall 1800 033 660 TTY 03 9639 1728 Web www.bca.org.au

OTHER NATIONAL PEAK BODIES

Brain Injury Australia Phone 02 9591 1094 Freecall 1800 272 461 Web www.braininjuryaustralia. org.au Deafness Forum of Australia Phone 02 6262 7808 TTY 02 6262 7809 Web www.deafnessforum.org.au National Council on Intellectual Disability Phone 02 6296 4400 Web www.ncid.org.au National Disability Services Phone 02 6283 3200 Web www.nds.org.au National Ethnic Disability Alliance Phone 02 9687 8933 Freecall 1800 982 182 TTY 02 9687 6325 Web www.neda.org.au

Carers Australia Phone 02 6122 9900 Web www.carersaustralia.com.au Australian Council of Social Service Phone 02 9310 6200 Web www.acoss.org.au

CDA MEMBERSHIP IS FREE FOR FAMILIES! CDA Membership includes free copies of our Family Voices magazine. Use the membership form on on page 27 of this edition of Family Voices and post it to us.

Physical Disability Australia Phone 02 6567 1500 Web www.pda.org.au Women With Disabilities Australia Phone 03 6244 8288 Web www.wwda.org.au Young People in Nursing Homes National Alliance Phone 03 9428 5677 Web www.ypinh.org.au

Family Voices | August 2010

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Suite 2, 98 Morang Road, Hawthorn VIC 3122 Phone 1800 222 660 or 03 9815 1094 Fax (03) 9818 1999 Email info@cda.org.au ABN 42 140 529 273