Family Voices - April 2010

FAMILY VOICES agazine m

April 2010

YOUR STORY CELEBRATING SAM P6

EDUCATION

YOUR EXPERIENCE? P18 OUR CHILDREN’S VOICE P24 PRINT POST APPROVED 353280/00006

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

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 (CDA) is a not for profit national organisation representing children and young people with disability aged 0–25 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.

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

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.

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.

Celebrating the successes and achievements of children and young people with disability.

Website links to more information are noted throughout the magazine but if you don’t have access to the Internet, contact the CDA office and we can send you a print copy.

Cover photo: Molly and Sam. See story on page 6

2

www.cda.org.au

Informing families about the rights and entitlements of their child with disability to services and support.

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 27 of this edition of Family Voices to join.

A big ger voice for kids

WELCOME — EXECUTIVE OFFICER Since the last edition of Family Voices it has been a time of great change and growth for our organisation.

After ten years of being auspiced by the Victorian Association for Children with a Disability, we have acquired independent status as a not for profit company lilimited by guarantee. The organisation i db has undergone a name change from AAFCD (Australian Association for Families of Children with a Disability) to Children with Disability Australia. We also have a new look with an updated logo and tagline, ‘A bigger voice for kids’.

I was appointed Executive Officer in October 2009. Directly prior to this I worked for twelve months as the Policy and Membership Coordinator for AAFCD. I have personal experience of disability as a parent and sibling and have worked for twenty years in a variety of roles in the area of disability. My background is in social work and I am currently completing my Masters in Public Policy at Melbourne University.

Elizabeth McGarry, our previous Executive Officer, made an integral and invaluable contribution to the establishment of Children with Disability Australia (CDA) as a national peak body. All at CDA are extremely appreciative of her work.

Elizabeth will now concentrate her energy on the Victorian Association for Children with a Disability.

We are extremely passionate about providing a bigger voice for children and young people aged 0–25 with disability in the Australian community. CDA has continued to provide strong advocacy in many areas including harmonisation of the disability parking scheme, education, national disability insurance scheme and vehicle modification. Full details of our advocacy work are included in this edition of Family Voices.

We are currently re-developing our website to ensure greater and more effective means of

communication with our members. In the coming months the new website will be fully operational and we will commence e-bulletins to keep members up to date about relevant issues.

Family input about your experiences of having a child with disability is central to our work. We are aware that many of our members do not have internet access so please phone or write to us about your experiences of having a child with disability.

Finally Bill Shorten, Parliamentary Secretary for Disability and Children’s Services, will officially launch Children with Disability Australia on 18 May in Melbourne. The launch will provide us with an opportunity to reflect on the ten year journey which has preceded the official establishment of Children with Disability Australia. It will also allow us a fantastic opportunity to celebrate the significant and amazing contribution to the community made by children and young people with disability. In line with this sentiment the launch has been organised so that children and young people with disability have a strong involvement and presence. Key contributions will be made through entertainment, ushering, hosting and attendance. The plan is to make it a truly memorable event.

I would also encourage all children and families to talk to Mr Shorten and other key decision makers who will attend the launch and share your experiences of having a child with disability. Our experiences are very powerful. Some days it is hard not to feel overwhelmed by the significant injustice which children with disability often face. I am frequently made aware of horrendous stories of discrimination, lack of opportunity, abuse and low expectations. I am convinced and determined that as a united voice we can achieve real improvements for our kids.

STEPHANIE GOTLIB Executive Officer

Family Voices | April 2010

3

MESSAGE FROM TH E CHAI R Welcome to the first Family Voices for 2010 under our new name. Since you received the last Family Voices, much activity has centred around bringing the Australian Association for Families of Children with a Disability to incorporation and developing it into the commonwealth-funded organisation.

Children with Disability Australia is unique. We are the only national peak body in Australia dedicated to children with disability. Our purpose is to improve the experiences of all children and young people with disability across Australia by:

• Engaging with families — gathering your stories • Researching the facts — gathering the data • Using family stories and the facts to advocate and inform people of power in government of the issues that need to be addressed to promote better lives for children with disability.

Thank you for your support of Children with Disability Australia. Join with us to make the voice for children with disability even bigger.

Spread the word! Tell other families about Children with Disability Australia! Send us your story, let us know what is happening for you and your family. Together we have the power.

Together we can make a difference!

MELINDA EWIN Chair

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.

4

www.cda.org.au

• 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.

A big ger voice for kids

WELCOME — CDA BOARD Over our ten year history, we have been fortunate to have had many dedicated workers and Board members who have kept our work alive.

There are too many names to mention, however particular thanks must be made to Barbara Alexander (AO) who was instrumental in forming AAFCD, a National Voice for Children with a Disability and their families, and Helen Johnson, former staff member, volunteer and passionate advocate for families. A number of our current Board members have been working with the organisation since its inception, namely Cale Dalton, Cheryl Pattrick and Bruce Young-Smith.

We also must thank the past and present Committee of Management and staff of the Victorian Association for Children with a Disability, who have provided ongoing and invaluable support.

We thank Katrina Clark (NSW) and Di Fuglsang (TAS), past Board members. For inspiring advocacy work and leadership we thank Michael Gourlay (VIC), previous CEO. For her dedication and talents to numerous to list, we sincerely thank Fiona Gullifer, past editor of Family Voices and its pre cursor, National NoticeBoard.

The inaugural Board of CDA was appointed at the first meeting after our incorporation, in November 2009.

CDA’s Annual General Meeting (AGM) will be held later this year. At least six weeks prior to this meeting our members will be notified, advising of the meeting and calling for nominations for Board members.

Please contact our Executive Officer, Stephanie Gotlib, if you would like further information.

Back L–R: Cheryl Pattrick (ACT — Treasurer), Bruce Young-Smith (NT), Melinda Ewin (QLD — Chair), Cale Dalton (SA), Anne-Maree Newbold (former VIC Representative) Front L–R: Elizabeth McGarry (former CEO), Stephanie Gotlib (EO), Heike Fabig (NSW — Secretary)

Family Voices | April 2010

5

YOUR STORY CELEBRATI NG SAM It starts with boy meets girl, one thing leads to another and shortly after they are married. Three years later Mum and Dad are blessed with a perfect baby daughter and fall head over heels, madly and deeply in love again. This time it is even better and their renewed love is called Molly Rose.

Keen to complete a picture perfect, blissfully happy family, a new baby arrives less than two years later. Arrives? To be honest it is more of an explosion. Sam arrives on the back seat of the car on the way to the hospital. The second I see Sam I know he has Down syndrome. He is also blue so we cause a bit of a stir. Sam is also diagnosed with Duodenal Atresias.

There is disbelief and a detached feeling of watching a film with stunned shock. Our perfect picture is smashed into a hundred pieces. It feels as though our family can never be happy again.

We are told Sam must be airlifted to Westmead Children’s Hospital immediately. Having quite ruined my dress in the car, I check myself out of the hospital and flounce out in my dressing gown into the helicopter where the turbulence doubles the time to get to Sydney. No gin and tonics or peanuts on this trip. The turbulence continues for the next twelve months.

Two days later Sam has his first operation. It is discovered Sam has Hirschsprung’s disease which means he does not have enough nerve endings in his bowel. At ten days old Sam undergoes his next operation. It is day twelve and my mother-in-law passes away peacefully after a battle with leukemia. I cannot decide whether my life is a very badly written film or an unbelievable soap opera.

6

www.cda.org.au

After three weeks in the intensive care unit with tubes, operations, monitors and blood transfusions, the arrival of my sister from the United Kingdom and a funeral, Sam has his first breastfeed and we are able to plan our departure from the safety of the hospital.

Three days later we have my sister’s wedding on the beach. A birth, death and marriage in about three weeks! Did I mention we squeezed in Christmas and New Year in that first month too?!

Our new life is now a daily reality. I feel like our life has turned to mush and I don’t like it.

At some level, I feel resentment that our baby has disturbed our happiness but of course I cannot tell anyone. I cannot admit that I feel like I don’t love my child. No mother should be feeling this way. With the benefit of hindsight I will learn that my feelings reflect a heavy mixture of grief, depression and guilt.

A visiting mid-wife tells me that “most people terminate babies with Down syndrome — we don’t really see them any more”.

At about four months Sam’s smile starts to work its charm and makes it easier to adjust to the routine of feeding every two hours. Previously, I viewed my role as merely the provision of shelter and safety from prevention of harm. It was dawning on me that, like any Mum, my role will involve much more.

The feeling of falling in love is shattered when Sam is six months. Sam loses his smile and

A big ger voice for kids

infantile seizures literally seize his personality away from us. We are told each seizure is causing brain injury and since he is having up to 200 a day, our world seems to be completely ripped apart again.

We are told by some professionals that Sam is unlikely to walk, talk or even know his name.

His glue ear is so bad he can only sleep sitting up in his car seat and the two hourly breast feeds continue to his first birthday. On top of this we have to dilate his bowel three to four times a day despite his screams of protest. Life isn’t much fun.

After numerous tests and false hopes Sam is blasted with medication and at around fourteen months is free of seizures.

Life begins to look sunnier and the love story with Sam begins.

Sam is now fifteen months old and can sit for two minutes unaided. It feels like he has won an Olympic gold medal. We are so proud. We are giving photos to everyone and we are boasting to complete strangers!

At nineteen months, Sam is waving goodbye and occasionally standing independently. He even climbs the bottom stair.

Our gorgeous boy is now two and a half years old and we travel to the United Kingdom for my mother’s funeral. We have been here for four days and Sam has just taken his first steps — on the day of the funeral.

At three years, he starts swimming, and is floating by himself a year later.

Sam starts kindergarten, tap and jazz at five years old.

Soccer is a great sport to take up when you’re six.

What else can you do when you’re eight years old but take up another sport, cricket.

Sam is now ten years old and continues to thrive and take up every opportunity. The most recent being cross-country running and surfing. He has just completed his first mini-man triathlon without any help in the swim and without training wheels.

He didn’t win but with the entire crowd cheering and screaming, it was ‘a moment’.

He continues mainstream school in year five with his wonderful inclusion support worker. There are some trials and tribulations at school but overall he is going much better than we had expected.

Family Voices | April 2010

7

He looks forward to school every morning. He struggles with his writing but especially loves reading and using the computer.

He is full of confidence and loves to perform — singing (badly mind you!), dancing, and acting.

One child recently, with great authority, said that “Sam has Dance syndrome” We’re so lucky to have come through the hardest part and can celebrate all of Sam’s achievements.

He is so enthusiastic about life, which is infectious.

And so our wonderful, handsome, affectionate, noisy, sometimes annoying son, whom we worried about for many years, has just broken the school record for multi-disability fifty metre freestyle. He has been to a regional meet — another ‘moment’ — and is now on his way to Homebush in Sydney for the state carnival. We’re predicting ‘another moment’!

The last 11 years have been a roller coaster of laughter, tears and all of the above.

It certainly hasn’t been your traditional fairytale but we are truly and utterly enjoying our love story and, for now, we are enjoying our happy ever after.

DEBRA JEFFERIS NSW

Are we in love? YES — hopelessly! Are we proud?

If you can be too proud, we are guilty.

If you have a story to share on our website or in the next edition of Family Voices, we’d love to hear from you. Send your story to CDA, Suite 2, 98 Morang Road, Hawthorn VIC 3122 or email info@cda.org.au

8

www.cda.org.au

A big ger voice for kids

I NVITATION — CELEBRATION We are aware that our members live in all State and Territories of Australia and many have significant family commitments; however we extend a warm invitation to you all to attend the launch of Children with Disability Australia.

L a r unch u O e t a r b e l e C We request the pleasure of your company When 10.30am, Tuesday 18 May 2010 Where Yarra Room, Melbourne Town Hall, Corner of Swanston and Collins Street Performance The Wild Divas Guest Speaker The Honourable Bill Shorten, Parliamentary Secretary for Disabilities and Children’s Services, will officially launch the organisation.

RSVP to Jane by 10 May on (03) 9815 1094, 1800 222 660 or janea@cda.org.au Light refreshments will be served

Public Transport 2 blocks north of Flinders Street Station Tram stop 11 on Swanston Street Look on jp.metlinkmelbourne.com.au to plan your journey

Parking (Hourly Rate) City Square 202 – 208 Flinders Lane (near Swanston Street corner) Venue accessible Please advise if you need access to Auslan interpreter

Family Voices | April 2010

9

ADVOCACY Advocacy continues to be a major component of the work of Children with Disability Australia. We aim to achieve better outcomes for children with disability and their families. Systemic advocacy is about influencing and changing a ‘system’ such as legislation, government policy and community attitudes. community access for people with disability.

Many children with disability have significant behavioural issues which significantly impacts their ability to access the community. The availability of a parking space close to the entrance of a destination can often reduce the challenges faced by people with disability and their families when accessing the community.

The Commonwealth Government sought input from the community regarding the proposed new national disability parking scheme. Feedback was specifically required regarding the proposed eligibility criteria, minimum standards for parking permit concessions and permit design.

CDA also requested that the eligibility criteria should incorporate the needs of families. In some instances a child with disability in isolation may not be deemed eligible for a disability parking permit. However when the additional needs of the child with disability are coupled with the needs of the entire family it can create a situation where it is impossible or extremely difficult to access the community.

CDA provided a written submission and also attended a forum for stakeholders in Canberra to further discuss the proposed initiative.

Additionally, CDA noted that there are simply not enough parking places allocated for people with disability.

In summary, CDA informed that the proposed eligibility criteria did not accurately capture the needs of all children with disability who require a disability parking permit.

Finally, CDA stated that the differing needs of people with disability in regard to disability parking and community access should be reflected in the allocation of spaces. Some people with physical disability require immediate proximity to entrances and larger spaces to accommodate their needs whereas others need parking that is in close proximity, not immediate to entrances, and have no requirement for larger spaces.

HARMONISATION OF DISABILITY PARKING

The focus appeared to be on the aids or assistance required for mobility as a means of defining the need for a permit. CDA asserted that the needs of the person with disability should be the primary focus when establishing the criteria.

CDA stated that the eligibility criteria needed to be extended to include people with disability who can walk independently and require more time and effort to do so.

It was also asked that consideration be given to other factors which can affect mobility or

10

www.cda.org.au

A full copy of this submission is available through CDA. For a copy of the consultation report go to www.fahcsia.gov.au/sa/disability/progserv/ people/disability_parking_scheme/summary_ report/Pages/default.aspx

A big ger voice for kids

EDUCATION Education continues to be a significant area of concern for children with disability and their families. At present the work of CDA is focussing on raising real awareness regarding the depth and breadth of issues many children and families face in relation to education. This can be seen in CDA’s direct representations to government and the initiative ‘experiences of education’ in which CDA will ‘tell it like it is’ by presenting your stories to relevant ministers later this year.

CDA also provided a submission regarding the Consultation Regulation Impact Statement for Early Childhood Education and Care Quality Reforms, and the Indigenous Education Action Plan. We will also provide feedback regarding the proposed National Curriculum in coming months.

Direct representation to the Australian Government has occurred regarding education through participation in Community Cabinet, a one-to-one meeting with Bill Shorten, Parliamentary Secretary for Disabilities and Children’s Services and the office of Minister Kate Ellis, Minister for Early Childhood Education, Child Care and Youth.

CRYING OUT FOR A SYSTEM What about accountability for students with disabilities? The NAPLAN test results are not an appropriate measure of achievement for many students with a disability. Many families of such students would welcome a system such as My School if it could provide accurate information on how schools were meeting the academic, functional and social inclusion needs of their children.

Many families are concerned about low expectations, limited options for academic achievement and under resourcing. It is extremely difficult for families to gain independent information about how well schools are meeting the educational needs of their child with disability.

Stephanie Gotlib, Australian Association for Families of Children with Disability, Hawthorn The Age (Melbourne) 1/2/10

Family Voices | April 2010

11

FEDERAL ELECTION Our next edition of Family Voices, planned for August 2010, will provide detailed information from key political figures regarding relevant issues for children and families with disability in this election year. In the interim, families are strongly encouraged to make an appointment with their local member of parliament. It may be useful to share your experience of disability and ask what their role will be in raising community awareness of disability and improving the service system in the future.

INTERNATIONAL RESEARCH Children with Disability Australia (under our previous name of AAFCD) participated in the international research titled Children and the International Landscape of Disabilities (Project CHILD) late last year. This study was a research project to learn more about various cultural and national policies and responses to families of children with disability. In total 102 people, who represented 57 different countries, were interviewed. The report will be available in coming months.

OTHER ADVOCACY FORUMS CDA continues to be a member of the National Disability Services (NDS) National Committee on Children, Young People and their families. CDA is also on the PlayConnect advisory panel.

Our executive officer, Stephanie Gotlib, has recently been appointed as a member of Playgroup Australia national board. Whilst this representation is in an individual capacity, it will provide the opportunity to share knowledge and expertise of children and families with disability in this forum.

Copies of all CDA submissions will be available on our new website. Please note that our website is currently being re-developed. At present copies can be obtained by contacting our office by phone (03) 9815 1094 (administration) or 1800 222 660 (members).

CDA can add strength to your voice when you tell us about what is important to you. Send an email to admin@cda.org.au or phone 1800 222 660

12

www.cda.org.au

A big ger voice for kids

NATIONAL DISABILITY INSURANCE SCHEME

IT’S ABOUT YOUR ENTITLEMENTS! The Productivity Commission is currently conducting an inquiry into a National Long Term Care and Support Scheme for people with a disability and their families. The inquiry is about examining the feasibility of a care model such as the National Disability Insurance Scheme. It is vital that the Commission hears directly about the experiences of children with disability and their families. Please register your interest at www.pc.gov.au/projects/inquiry/disability-support or phone on 1800 020 083.

Many parents of children with disability are ‘Mad as Hell’ because they know their kids are being denied basic entitlements, or as we colloquially refer to it in this country a fair go. The typical plight of families of children with disability is that they fight for basic rights and services from the moment their child is born and throughout their life. The fight is for entitlements to services but also for opportunities that others often take for granted.

Participating in everyday social events, going to school with kids in your street, involvement in a local club, considering different post-school choices or moving out of home are events which are typically part of growing up. The journey for many children with disability is very different.

Children with disability are subjected to a culture of low expectations where they are too often confronted with discrimination, abuse and violation of their rights. The under resourced service system is a complex maze. Presently many children with disability are not able to obtain the type and level of services they need. This translates to a life experience in which basic entitlements, and what many would consider rights of passage, in Australian life are not a reality. The introduction of a National Disability Insurance Scheme is an integral component of the reform needed in this country to address this national crisis. These inspiring mothers are demanding action.

MAD AS HELL KATRINA CLARK

It started with two mums working on their laptops, late into the night, at their kitchen tables.

It resulted in the largest national grassroots, webbased campaign for disability reform Australia has yet seen.

Two mothers, each with a child with disability, have called on every single Australian who wants to see fundamental, transformational change to the nation’s dysfunctional disabilty sector to mobilise, unite, and pledge to vote in future federal and state elections only for political parties that commit to the introduction of a National

Disability Insurance Scheme (NDIS) and selfdirected funding.

One of the mothers, communications consultant Fiona Porter lives in Brisbane with her fourteen year-old son Sandy; the other, journalist Sue O’Reilly, lives in Sydney with twenty year-old son, Shane. Both boys have cerebral palsy.

In March this year, Sue and Fiona gathered some like-minded parents and friends together to formulate a strategy for harnessing the power of everyday Australians to impress upon both sides of Government the imperative of implementing a solution to the current crisis in the disability service system. What they came up with was an innovative, web-based political lobbying

Family Voices | April 2010

13

campaign called “Mad as Hell”, with the slogan “We’re NOT going to take it anymore — and there are millions of us”.

Far more powerful than a traditional petition, the campaign asks members of the public to pledge, via the Mad as Hell website, that they will vote in the next elections only for a political party or parties that support a National Disability Insurance Scheme — a no-fault insurance scheme designed to fund the essential services and supports needed by people living with disability, with a commitment that the funding allocated to the person with disability be under their own control and/or the control of their families (self directed funding). The postcodes of each person who makes a pledge will be matched to Federal and State electorates, and candidates standing for election in these seats will be notified of the number of pledges received — with particular attention paid to marginal electorates.

With the aid of the internet and emails, the Mad as Hell campaign aims to harness the voting power of people from around Australia who understand the need for fundamental reform of Australia’s broken disability system. Strength in numbers influences policies, regardless of which party is in power. This is what sets this campaign apart.

whichever party is elected at the forthcoming federal elections, to commit to implementing the Productivity Commission’s recommendations in a comprehensive and timely manner. The introduction of a national, uniform, no-fault NDIS, underpinned by the two principles of entitlement to service provision and far greater consumer choice and control over how funds are spent, would transform Australia’s broken disability support system and finally give real hope and control to millions of Australians affected by disability.

The Mad as Hell campaign is directly relevant to: • One million Australians with permanent disabilities • Over 500,000 family members who are primary, full-time carers, plus extended family members, including sons, daughters, brothers, sisters, aunts, uncles and grandparents • Tens of thousands of health professionals, teachers, therapists and disability workers who witness each day the devastating impact of Australia’s dysfunctional, crisis-driven support system on people with disability and their families • Thousands of Australians working for the disability service organisations that now overwhelmingly support the introduction of an NDIS

“We’re NOT going to take it anymore — and there are millions of us”.

• Every Australian now and in the future — because disability, whether arising from accidental injury, chronic illness or from birth, can happen to anyone, at any time.

The concept of an NDIS was first tabled at the federal government’s 2020 Summit in 2008, and design details are currently being considered by the Productivity Commission, which is due to report back to the federal government by July 2011. Self-directed funding has been successfully implemented overseas and is currently being trialed in limited areas of Australia. The Mad as Hell campaign aims to push

Full details of this campaign are available at the campaign website australiansmadashell.com.au Have a look at the website — and take the Pledge. And don’t be afraid to tell your friends and family about this campaign.

It’s amazing how many people are affected by disability.

14

www.cda.org.au

A big ger voice for kids

COMMUN ITY CABI N ET An imperative part of the work of Children with Disability Australia is to raise awareness of issues confronting children and young people with disability and their families. It is not possible to achieve effective policy and practice for our children unless our government and the general community are informed of our real experiences. With that in mind, we travelled to Ballarat in February to participate in Community Cabinet. CDA raised the issue of education and disability. Brendan, and his mother Di, raised the issue of accessible amenities.

WHAT IS COMMUNITY CABINET? Cabinet is comprised of a group of senior ministers responsible for the government’s major policy decisions.

Community Cabinet is an initiative where the cabinet travels to community locations around the country. Community Cabinet meetings give people the opportunity to bring their concerns directly to Government. The event includes a public forum in which the Prime Minister addresses attendees. Cabinet then respond to questions from the audience.

Ministers are available for a limited number of pre-arranged one-on-one meetings with individuals or groups. Each meeting is limited to 10 minutes.

DON’T TAKE ANYTHING FOR GRANTED A summary of Brendan and Di’s submission to Bill Shorten, the Parliamentary Secretary for Disabilities and Children’s Services.

Our aim is to raise awareness of the needs of people like Brendan, with severe disability, whose full and busy lives are compromised by the lack of suitable accessible sanitary amenities in the community. All other people can utilise toilets twenty-four hours a day. We ask that you assist us to lead the change to build a truly accessible Australia. In our opinion, none of the current enquiries or reports into accessible facilities have made any adequate recommendations regarding

the needs of Brendan and others with similar personal care needs.

Brendan, and countless others like him, require accessible changing places fitted out with a ceiling hoist and a height adjustable change table.

It is not possible for Brendan to have his personal

Family Voices | April 2010

15

care needs met adequately through the present toilet amenities available in our community. The lack of appropriate changing places has been an issue since he could no longer access parent/ child change rooms. The standard toilet for people with disability is simply a larger room with a toilet pan in the corner and some grab rails.

We are grateful for the small number of toilets for people with disability which do have accessible changing places but unfortunately only two of these in suburban Melbourne are open outside the hours of 9.00am to 5.00pm. Only one has twenty four hour access and the availability of these toilets is ad hoc and not widely known.

Care is often undertaken in the family context.

All families should enjoy equal access to their community, secure in the knowledge that they can access toilet facilities. Activities outside the home, taken for granted by most, should be available to everyone. At present Brendan cannot visit a library; go to a swimming pool; access the neighborhood house or attend hospital appointments, if he wants to go to the toilet with dignity. Consequently, many carers and families have restricted recreational and social opportunities due to the lack of suitable amenities.

16

www.cda.org.au

EXPERIENCES • A fourteen year old boy, with a PEG (stomach tube for nutrition), has to be changed on the floor of a toilet. This child has a colostomy and is incontinent of urine. This young man always explores his environment with his hands which he usually places in his mouth. He requires hospitalisation if he contracts gastroenteritis from the bacteria commonly found on the floors in toilets. • A tall twelve year old child who has a PEG cannot leave his home for periods of more than one or two hours when reliant on care by his mother. She has injured her back lifting him and can no longer utilise even the floor of an available toilet. • A young person with multiple disabilities, which necessitates the use of a wheelchair, visits his father at his work. This young man cannot weight bear and experiences dislocations of shoulders and other limbs if not supported appropriately. He presently is lifted out of his wheelchair and placed on the floor of a toilet cubicle, by both parents, so his personal care needs can be met. This is the usual experience for this family if he needs to access a toilet when not at home.

A big ger voice for kids

• Brendan regularly attends events at major sporting and entertainment venues in Melbourne. None of these sites have a toilet facility which meet his needs.

industry organisations, be further developed to include specifications for universally accessible toilets with changing places so that a uniform minimum approach is mandatory.

• Extensive work has already progressed in the United Kingdom’s Changing Rooms. These standards could be adopted in Australia.

SUMMARY Currently toilets for people with disability do not meet our needs or the needs of tens of thousands of other Australians who require the use of either a height adjustable change table, hoist or both.

RECOMMENDATIONS • Greater availability of toilets which have accessible changing places. This needs to be undertaken in a standardised way. We need mandatory requirements for local governments to have a minimum set number of toilets with accessible changing places. These toilets need to be open twenty four hours a day.

• Toilets with changing facilities must also be available at major community facilities. Venues such as airports, major sport and recreation arenas, hospitals, shopping centres, leisure facilities, large city precincts and neighborhood houses. It is vital that amenities are strategically geographically located around the country to ensure travellers are accommodated appropriately.

• The allocation of funding for these facilities should include a ‘private public partnership’ approach which unites the government, building industry, investors and participants from our community.

• We believe a new, or additional, building standard should be introduced.

• The Build for Life site prepared by the Victorian Building Commission in collaboration with leading government agencies and building

Brendan, and other young people with similar care needs, should be able to go out without being placed in embarrassing situations in relation to their personal care needs.

Imagine if you closed all the toilets at any major venue and told people at an event there were no toilets available. It would most probably result in the event being postponed or a riot.

People with disability feel disadvantaged, frustrated and at times humiliated by the present situation. The right to go to the toilet with dignity should be something taken for granted by ALL Australians.

OUTCOME Mr Shorten expressed his concern regarding the level of accessibility for public amenities and stated that he would provide a written response to Brendan and Di’s submission. Updates of the progression of this issue will appear in the next Family Voices.

MORE INFORMATION RELEVANT TO THIS ARTICLE CAN BE FOUND: www.buildforlife.com.au www.changing-places.org www.toiletmap.gov.au

Family Voices | April 2010

17

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.

18

www.cda.org.au

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

EDUCATION COPY OF CDA’S COMMUNITY CABINET SUBMISSION TO JULIA GILLARD, MINISTER FOR EDUCATION AND SOCIAL INCLUSION Education is one of the most significant issues of concern for children with disability and their families. Many families of children with disability report that, through their educational experiences, their children are subjected to: limited opportunities; low expectations; exclusion; bullying; discrimination; assault; and violation of human rights.

The present system is not adequately meeting the educational needs of many children with disability.

CDA is a national community organisation that assists and provides advocacy for children with disability and their families. It has approximately 5000 members.

CDA is in the process of collating its members’ stories in regards to their children’s experiences of education. Our plan is to provide them to the Minister for Education and Social Inclusion and Parliamentary Secretary for Disabilities and Children’s Services later in the year. These stories will further demonstrate the profound and diverse issues impacting on children with disability and their families in relation to education.

MAIN ISSUES DISCREPANCY BETWEEN POLICY AND PRACTICE The United Nations Convention of the Rights of Persons with Disability and the Rights of the Child, clearly state the rights of the child with disability to receive a quality, free and inclusive education.

Despite Australia being a Party to these and other relevant Conventions, and the existence of State and Commonwealth discrimination legislation, at best families of children with disability believe that their children have limited opportunities to be enriched and extended through education. There is a belief that the present system is awash with low expectations and standards for students. At worst, parents are concerned about treatment that could arguably breach the Convention Against Torture. Reports of children being locked in ‘time out’ rooms come uncomfortably close to false imprisonment. Reports of physical restraint and manhandling approach assault, and do not seem to be supported by departmental policy.

Too often it is assumed that students won’t be able to learn certain skills, academic and functional, because of their disability. Individual educational programs are often based on this assumption.

Family Voices | April 2010

19

This prevalent attitude coupled with the other issues of concern mean that too frequently students with disability are denied the right to a quality education.

Parents often liken their children going to school to a ‘babysitting service’, especially when their children attend special schools.

Many families report the ongoing battle to have their children’s educational rights and needs recognised. Families are often faced with having to continually advocate for their children’s rights to access schools, funding, resources and opportunities. It is a time consuming and exhausting process, often resulting in parental mental health issues, and deteriorating relationships between parents and schools.

some situations thereby forfeiting recognition of their children’s educational rights. Or alternatively, increasing numbers of families are successfully pursuing legal action to have the educational needs of their children recognized and met.

Pursuing legal action is an exhaustive process — financially and emotionally — and often by the time legal proceedings have been heard, years of opportunity have elapsed. It is of great concern that state and territory governments continue to settle legal cases without addressing the systemic issues they raise. This was highlighted last year when the New South Wales Principals’ Association threatened to sue the Department of Education in relation to funding for students with disabilities.

It is a typical experience to have concerns ignored or not addressed due to lack of understanding, funding and a systemic lack of will to work towards providing maximum educational opportunities for students with disability and at times treating students with dignity. Parents often raise concerns with teachers, principals, regions, state departments and local members of parliament to no avail.

For example, an 8-year-old boy (fully continent) was utilising bus transport provided by government to travel to and from a disability specific school. The average travel time from home to school was two hours each way for a ten kilometre trip. If the boy needed to go to the toilet during the trip he was unable to use toilet facilities. The policy covering such situations consisted of the provision of an absorbent towel in the event that the child had a toilet accident because he could not wait any longer. This concern was taken to the Premier over two years ago. No changes, to our knowledge, have been implemented to address this cruel and degrading situation.

As a consequence, families are often forced to prioritise their issues of concern and acquiesce in

20 www.cda.org.au

A big ger voice for kids

DISCRIMINATION Children with disability frequently experience discrimination in the educational arena.

in these areas held within the departments of education, in addition to the lack of resources to put them into place.

Families are often directly told that their child is unable to attend a school because of the child’s disability or they are left with a feeling that their child would be such an inordinate burden on a particular school that they seek other options.

Another common occurrence is that funding only allows a student to attend part-time. This is the clearest example of discrimination against students with disabilities.

The reality for many students with disability is that they cannot go to their local school because the school cannot meet their needs or they don’t want them. Parents often feel they have no option but to send their child to a specialist disability school.

It needs to be recognised that the difficulty of obtaining adequate funding to support children with disability plays a big part in this scenario.

Many children experience discrimination on a daily basis because there is a lack of understanding, knowledge and expertise regarding the impact of disability. Many educational programs and routines are therefore not adapted to ‘accommodate disability and the individual learning styles of children with disability’. As a result children with disability are excluded. So for example, curriculum is not modified or, interpreters are not available so children with disability may be physically present but cannot participate in the educational program being offered.

In addition, many behaviours demonstrated by children with disability are often viewed as disciplinary issues rather than taking into account a child’s disability. As a consequence challenging behaviour is often interpreted and dealt with inappropriately. This often results in an exacerbation of challenging behaviors and leads to children being suspended or expelled. There seems to be a lack of knowledge of best practice

For example, a very distressed mother rang CDA seeking assistance. The mother was from a non English speaking background. Her child had Asperger’s syndrome. On a day at school where there was a casual relief teacher her child was not allowed to divert from the normal educational program in a math’s session. The relief teacher perceived this behaviour as a behavioral problem. She chastised the student in front of the entire class. A number of students also made comments about the situation. The student quickly became overwhelmed and threw her shoe at another student. The student with disability was then kept in for detention.

The student was extremely distressed when she went home. The mother calmed the student down

Family Voices | April 2010

21

with the promise she would attend the school the following morning to resolve the situation.

The child became increasingly distressed and overwhelmed by the situation. The following morning the mother discovered her daughter had a knife in her school bag because she was planning to deal with the students who had been continually taunting her regarding getting in trouble. The daughter then revealed plans to commit suicide.

At the time of the mother’s call she had just returned from the local emergency department after seeking assistance. She had been told to take her daughter home.

Hundreds, if not thousands, of other minor but constant acts of discrimination are often mentioned by families. For example a student being unable to attend school because their inclusion support worker is unwell.

RESOURCES/FUNDING CDA receives constant feedback from families and educational providers that there is simply not enough funding available to ensure that the diverse needs of children with disability are met. This in practice means that children cannot access education, as there are insufficient resources for inclusion support, general resources, equipment, assistive technology and specialised equipment for communication.

Many students with disability are ineligible for funding under individual State or Territory funding programs for students with disability despite having additional support needs. Students with Asperger’s syndrome often have this experience.

There is concern by many parents that funding obtained to support children with disability in public schools cannot be obtained at the same level if they send their child to a private school.

ACCOUNTABILITY There is limited accountability under the education system for children with disability.

Many students have individual educational plans but these contain goals that are established, implemented and evaluated by schools. There is a prevailing concern that there is limited or no objective input into this process.

There are also concerns regarding the position of students with disability within the MySchool system. The Naplan assessment is not an appropriate measure of educational progress for many students with disability so it is unclear of the value and relevance of this accountability system for that cohort of students.

The other concern is that schools are inappropriately gaining exemptions for students with disability because of a concern that they will negatively affect total school performance.

22 www.cda.org.au

A big ger voice for kids

STAFF QUALIFICATIONS/ONGOING TRAINING There are no national compulsory standards for qualifications for teachers or inclusion support staff working with students with disability. Many educational providers have no formal training in disability which is extremely problematic.

Inclusion support workers also are notoriously low paid despite their positions often being very demanding and requiring a high skill level. There is typically difficulty obtaining inclusion support workers and there is often a high turnover of staff.

THE WAY FORWARD: We need national leadership to: 1. ACT. It should be noted by the Commonwealth Government, that due to the long-standing nature of these difficulties and subsequent failure by government to address this situation many families are looking at seeking redress under the relevant international conventions. In these instances, it is the Commonwealth who is responsible under these conventions to ensure that Australia meet its obligations. This is the least preferred outcome.

OUTCOME The Department of Education Employment and Workplace Relations (DEEWR) contacted CDA by phone in the week following community cabinet to discuss issues raised.

A further commitment to liaise with CDA was made. Future contact will include discussion regarding the establishment of opportunities for students and families to provide input into reviews or new initiatives relevant to students with disability and education. Updates will be included in Family Voices regarding the progress of this communication and further collaborative work with DEEWR on these issues.

A meeting was also held with Bill Shorten, Parliamentary Secretary for Disabilities and Children’s Services, to re-iterate the issues raised in CDA’s submission to the Minister for Education and Social Inclusion. Mr Shorten acknowledged the concerns raised and undertook to further raise issues with DEEWR.

2. Issues of concern in relation to children with disability and education need to be acknowledged. There needs to be some level of formal inquiry that systematically identifies the areas and depth of concern.

3. Request that students with disability become a specifically identified “at risk” priority in the Council of Australian Government educational agenda. Develop a plan similar to the Indigenous Education Action Plan Agenda which specifically identifies present inadequacies and sets appropriate benchmarks and goals that will allow the educational needs of children with disability to be adequately met.

Family Voices | April 2010

23

OUR CHILDREN ’S VOICE — DANNY DOES YOUR DISABILITY AFFECT HOW YOU GO AT SCHOOL? It does make me smarter for example, 12 x 12 = 144.

It makes me cooler and it makes me susceptible to bullying.

WHAT ARE THE CHALLENGES YOU FACE DUE TO YOUR DISABILITY? Keeping happy — especially when I have been bullied.

WHAT’S IT LIKE HAVING A DISABILITY? Not bad. It gets me access to some extra areas in school.

CAN YOU TELL US A BIT ABOUT YOURSELF? My name is Danny. I’m 11.5 years old. I’ve got a disability. I’m a big fan of Doctor Who and I’m hilarious.

HOW DOES YOUR DISABILITY AFFECT YOU? I’ve got a very advanced vocabulary for my age.

It makes me susceptible to emotions like anger, sadness, happiness etc.

I am exceptionally good at computer and I am a genius because of my extraordinary imagination.

I think I am really good at these things because of my ‘disability’.

DOES YOUR DISABILITY HAVE A NAME? I don’t know what it is but I’m certain I have a disability or as my brother calls it a super ability.

One of my brothers is autistic.

My general behaviours like eating — I’m a really fussy eater and I’m not good at holding cutlery properly.

IF YOU HAD THE OPPORTUNITY TO TALK TO THE AUSTRALIAN PRIME MINISTER ABOUT DISABILITY WHAT WOULD YOU SAY? The positives and negatives.

WHICH ARE? Positives — parking areas for some.

What about this National Disability Insurance Scheme tax thingo. If it happens will I have to pay tax to help myself? (that would be a negative).

Would I get a special rebate?

WHAT ADVICE HAVE YOU GOT FOR THE AUSTRALIAN COMMUNITY ABOUT KIDS WITH DISABILITY? Just think of it as ‘super’ ability and not ‘dis’ ability.

Be happy you’re not in the olden days. There were institutions for people with disabilities. They were like prisons.

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

24 www.cda.org.au

A big ger voice for kids

OUR CHILDREN ’S VOICE — OLIVER WHAT’S IT LIKE HAVING A DISABILITY? It definitely makes it harder getting around. My school provides help for me, just because it is a great school. Sometimes people stare or even shout at me, which is strange because I have perfect hearing, I’m just on wheels!

Dylan from the Australian Mens Wheelchair Basketball, Mike who is a dive master, used to compete for Australia in marathons and has his pilots license and other great people who I probably would never have met if I didn’t have a disability.

DOES YOUR DISABILITY HAVE A NAME? Yep, its quadriplegia or some people call it tetraplegia.

DOES YOUR DISABILITY AFFECT HOW YOU GO AT SCHOOL? Sort of, not so much at this stage, except I miss a fair bit of school going to hospital appointments.

WHAT ARE THE CHALLENGES YOU FACE DUE TO YOUR DISABILITY? Walking, running, basically everything you do with your legs. You just have to get over it. I just rely on my brain and just get on with it.

CAN YOU TELL US A BIT ABOUT YOURSELF? I’m 7 years old. I love sport and I mean every sport but I especially like playing cricket and baseball.

I also love scuba diving. I love being under water.

One day I hope to grow gills.

HOW DOES YOUR DISABILITY AFFECT YOU? I’d like to say it’s fine and everything but the truth is it’s a pain! I have to rely on my wheelchair or other people to get around. I’d love to walk and run! On the upside I have to think differently about things. I can do anything; I just have to put my mind to it…BRING IT ON AUSTRALIA! Meeting lots of people I admire helps too. I have met stacks of amazing people like Bryce from Murder Ball, Tina the Captain of the Australian Womens Wheelchair Basketball and the team,

IF YOU HAD THE OPPORTUNITY TO TALK TO THE AUSTRALIAN PRIME MINISTER ABOUT DISABILITY WHAT WOULD YOU SAY? Don’t make stairs! Make sure that people are aware that people who have difficulty getting around can get on things like trains and trams, buses and taxis more easily and safely. More toilets and lifts! Maybe we could have toilets with hands that could lift you on to the seat and off when you’re finished, and have seats that are small enough that my bum doesn’t fall through! If you could help us with a bit more funding so that everyone has the same opportunities.

WHAT ADVICE HAVE YOU GOT FOR THE AUSTRALIAN COMMUNITY ABOUT KIDS WITH DISABILITY? You don’t have to feel sorry for us; if we need help we’ll ask for it. I really like what Danny said, ‘think of it as ‘super’ ability’!

Family Voices | April 2010

25

MEMBERSH I P UPDATE 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.

26 www.cda.org.au

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

MEMBERSHIP BENEFITS • Full members are entitled to vote at general meeting 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 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 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

Credit Card No

Expiry date

/

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. It will not be disclosed to any other entity.

Family Voices | April 2010

27

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. We sincerely thank the following organisations for the support provided to us over the past twelve months;

Tom Fauvette, graphic designer and his team has been committed to ensuring all design projects are of the highest standard and has provided time above the scope of his original employment.

The level of commitment by Tom and Janine has been inspiring. They do not have direct experience of having children with disability and have been quick to gain an understanding of the challenges children and families face in order to assist Children with Disability Australia in its work.

This example of broader community willingness to join together to improve the situation for our children with disability is something which needs to be recognised and harnessed and is the basis for real social inclusion.

Janine Scott, Communications Consultant from Cause Effect Marketing assisted with the development of a new Organisational identity.

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.

28 www.cda.org.au

Our magazine is enjoyed by a readership of approximately 5,000 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

BRAI N I NJURY AUSTRALIA — FO R G I N G L I N K S

NICK RUSHWORTH — Executive Officer Brain Injury Australia Brain Injury Australia is the national peak body representing the needs of people with an acquired brain injury, their families and carers.

The disability called acquired brain injury — or ABI — refers to any injury to the brain that occurs after birth. Causes of brain injury include trauma, stroke, infection, alcohol or substance use or degenerative conditions. ABI is common. Over 500,000 Australians have an ABI, 25,000 of them are children.

Community awareness of ABI is limited when compared to understanding and knowledge of other types of disability. ABI is most commonly associated with young men, aged 20–25 years, who have acquired their injury through a motor vehicle accident or assault. This group constitutes the majority of the clientele of advocacy and support services.

Brain Injury Australia would like to forge links with organisations like Children with Disability Australia so that common interests can be shared and our advocacy efforts strengthened.

Brain Injury Australia is working in two areas of specific interest to CDA members. Presently we are preparing an issues paper on abusive head trauma or ‘shaken baby syndrome’. This is the leading cause of death and disability in children who have been abused, particularly infants. Over the last five years more than seventy children in New South Wales have been hospitalised with inflicted traumatic brain injury

The international research shows that a third of these children die as a result of their injuries. Of those who survive, two thirds will grow up with profound and permanent disabilities. Hospital admissions represent a small fraction of the children who sustain brain injuries. For every child hospitalised with inflicted traumatic brain injury, surveys suggest as many as 150 other children in the community may sustain head trauma from caregivers.

The paper will be used to inform the Council of Australian Governments’ ‘Protecting Children is Everyone’s Business: National Framework for Protecting Australia’s Children 2009–2020’.

This work will also form the basis of Brain Injury Australia’s injury prevention and awarenessraising campaigning for years to come.

I would be very keen to be contacted by people with inflicted traumatic brain injury and their families.

The second area of the work of Brain Injury Australia which is relevant to children and young people with disability and their families relates to gaining acknowledgement of brain injury as a recognised disability by Centrelink. Our particular focus is in relation to carer allowance for children.

Brain injury is presently not recognised as part of the eligibility criteria for this support payment.

Brain Injury Australia would like to hear from any parents or carers of children with an ABI who’ve had difficulty qualifying for, or maintaining, the Carer Allowance. Your experiences are a powerful means of achieving systemic change. www.bia.net.au

CONTACT DETAILS FOR NICK RUSHWORTH Brain Injury Australia PO Box 220 Marrickville NSW 2475 Phone (02) 9591 1094 1800-BRAIN1 (1800 272 461)

Family Voices | April 2010

29

N E WS I N B R I E F COMPANION CARD SCHEME A new national companion card scheme has been introduced. The Companion Card is an identification card which will allow people who require a carer to attend events without the need to purchase a separate ticket for their carer. The new scheme builds on existing State and Territory based schemes. For information about this scheme visit www.companioncard.org.au

NEW ACCESSIBILITY STANDARDS FOR GOVERNMENT INFORMATION ONLINE Government information online will soon conform to new accessibility standards, Web Content Accessibility Guidelines (WCAG) 2, which were recently endorsed. The transition strategy will form part of the National Disability Strategy which will be released later this year.

DISABILITY (ACCESS TO PREMISES — BUILDINGS) STANDARDS The Disability (Access to Premises — Buildings) Standards were announced in March. These standards set the minimum access requirements for people with disability to publicly accessible buildings. These standards were adopted following a consultation process which resulted in the report Access All Areas, which was released in June 2009. The Premises Standards will commence operation on 1 May 2011, in line with the adoption of the Building Code of Australia in each State and Territory. More information is available at www.ag.gov.au/premisesstandards

CHANGES TO THE CONTINENCE AIDS ASSISTANCE SCHEME From 1 July 2010, the Continence Aids Assistance Scheme (CAAS) will be replaced by the Continence Aids Payment Scheme. CAPS is a scheme that provides a payment to assist eligible people who have permanent and severe incontinence to meet some of the costs of their continence products. The payment will be made directly to the client’s nominated bank account.

30 www.cda.org.au

CAPS clients will be able to determine which provider they purchase their products from and the frequency of their purchases.

The CAAS will continue to be administered in the same way until 30 June 2010. During this time current clients will continue to access their subsidy for continence products ordered through the current supplier, Intouch. Further information is available at www.bladderbowel.gov.au

DIGNITY FOR DISABILITY CANDIDATE ELECTED TO SOUTH AUSTRALIA’S UPPER HOUSE Dignity for Disability’s (d4d) Kelly Vincent, aged 21 years, won an upper house seat in South Australia’s recent election. Dignity for Disability is a political party who ran an extensive campaign during the recent South Australian election with an aim of ensuring representation in parliament for people with disability. Ms Vincent is the youngest female to be elected to parliament and believed to be only the second person in Australia who uses a wheelchair to be elected.

ASSISTANCE WITH COMPUTER ACCESS ComputersFORall is a scheme which assists eligible people to own a fully refurbished computer with a range of preinstalled software.

Those in receipt of Parenting Payment, Family Tax Benefit, Disability Support Pension, Aged Pension and Carer Allowance can qualify for the scheme.

Over twelve months payments are deducted from your Centrelink fortnightly payments. You should receive your computer approximately two weeks from application; however it may take longer depending on stock and postage times.

For further information please contact: Email applications@computersforall.com.au Phone (03) 9012 8492 Web www.computersforall.com.au Written queries can be sent to Cash for Computers Pty Ltd., PO Box 244, Belgrave Vic 3160

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

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

OTHER NATIONAL PEAK BODIES 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 | April 2010

31

BACK COVER

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