Anne-Maree Newbold - VIC

My partner, Laurie and I have two children. Lewis aged 16 and Elliot who is 10 years old. Lewis was born with cerebral palsy and has severe and multiple disabilities. The first two years were a blur of shock, denial, disbelief and grief. The emotional impact lessens over time but never resolves completely.

My search for services and adequate support for Lewis in his childcare centre brought me into contact with the Association for Children with a Disability in Victoria. Even now, years later, we still find ourselves battling to get the services and equipment he needs. We often find ourselves frustrated by bureaucratic rules that constrain the extent to which services and programs can be flexible to meet our family's needs.

I have worked as a social worker for 20 years, predominantly in the Mental Health area and more recently in education and training. I am very interested in service delivery systems and am keen to assist AAFCD in lobbying the Federal Government to develop a better resourced and more coordinated service system for children with a disability and their families - one that is driven by family needs, not bureaucratic rules, with decent levels of resources provided through the Commonwealth State Territory Disability Agreement (the CSTDA).

We live in the Western region of Melbourne and I am an active participant on various local committees. Needless to say, I am a passionate advocate for better services in our local area.

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Heike Fabig - NSW, Secretary

We have three children, two of which have an early onset, non-degenerative and as yet un-identified form of autosomal recessive hereditary spastic paraplegia (HSP). We are baffled, as are the doctors.
Their disability presents as Cerebral Palsy (CP) and is classified as such until further notice.

We live in rural New South Wales and a few years ago I started up an email support group for families of children with CP. You can read about our family adventures on my blog at www.rollercoasterparenting.blogspot.com

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Cale Dalton - SA

My wife Dorothy and myself care for our son Neil who is the eldest of our two children with Neil being 27 years old and having cerebral palsy. Consequently I have been involved with various support and advocacy groups and service organisations in disability and related areas and have a good understanding of the many issues that impact upon children, adults and families who live with disability.

I was Chair of Family Advocacy, Vice Chair of Novita Children’s Services and President of Carers SA. My involvement with the latter group included a key role in developing the Western Carer Support Project in Adelaide. My committee work included the Ministerial Advisory Committee: Students with Disabilities and the Bridging Pathways State Implementation Committee for Vocational Education and Training. I received the Centenary Medal for service to the community through support groups in disability, caring and education.

I was involved with early efforts for AAFCD to develop a national voice for families and together with Mary-Ann Murphy provided South Australian representation on the national AAFCD committee.

More recently I assisted with the incorporation of the Association for Children with Disability (SA) Inc., a South Australian volunteer parent group whose aim was to provide information, support and systemic advocacy to families that have children of any age with any type of disability. This group later evolved into Compass SA Inc. and provided support to the Dignity for Disabled campaign that achieved government and community recognition of disability issues.

My philosophy has always been about achieving ‘grass roots’ representation for people with disabilities and their families, to give them a greater say about their issues and a greater say in decisions that impact upon them.

In my view, neither the needs of children and adults with disabilities or the informal supports provided by their families are adequately acknowledged by the general community or by government.

I also note that the fragmentation of support groups works against the interests of individuals with disabilities and their families and that friction can arise between carers and people with disabilities due to limited resources.

In the longer term I believe that AAFCD can develop a strong national voice that will go a long way towards solving such issues and hence improve the lives of children with disabilities and their families

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Cheryl Pattrick - ACT, Treasurer

My husband Steven and I operate an Electrical Contracting Business in the ACT, which we started in 1989. We have three sons, Ben (22), Matthew (20) and Luke (18).

When Ben was six months old we were told that he had cerebral palsy, something we knew next to nothing about. Ben’s birth has taken my husband and I on a totally new learning curve and changed the direction of our lives.

Ben has a great personality which really helps him to engage with people and the community. Ben uses an electric wheel chair for his mobility and independence and requires support with most of his daily living needs.

Ben finished his education at Lake Tuggeranong College in 2005. Ben and I are currently working with The Canberra Hospital to create an employment opportunity based on Ben’s abilities.

Over the past 20 years I have attended many workshops and forums on Social Role Valorisation, education, respite, accommodation, post school options, services, service delivery and planning positive futures for children with a disability.

Social Role Valorisation awareness training has had a strong influence on my life and given me a clearer understanding of the effects community perceptions and cultural attitudes have on the lives of people who have a disability, their families and carers.

I have just completed a two-year term as Deputy Chair on the ACT Minister for Disability’s Advisory Council. Over the past 12 years I have been a board member for a Community Advocacy Organisation that works with systemic and individual issues on behalf of people who have a disability in the ACT.

I am currently a member of BLITS - ACT Business Leaders, Innovative Thoughts and Solutions, BLITS promotes initiatives that value and engage people with disabilities as customers, suppliers, employees and employers in business, the arts and sport.

I am also a member, along with two other families, of a Family Governed Group called ‘Getting a Life’. The Family Governed Group is an opportunity for the 3 families to work together to create a life that we all aspire to for our sons.

To have a national voice that represents children with disabilities and their families is a great opportunity to work together to improve lives and create a good future for everyone.

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Bruce Young-Smith - NT

Our daughter, Wendy, has cerebral palsy spastic quadriplegia. I never cease to be amazed by the courage of children with a disability to undertake the simple things most of us take for granted. As a rugby (both union and league) player/coach and martial arts instructor of many years I believe that I am qualified to talk on this.

The sort of strength of character and frustration I talk about may be explained by the following experience. I was following 5-year-old Wendy as she cruised hand over hand using her reduced grip around the edges of our small pool when a passing Harley Davidson out on the street decided to change down a cog or two and blast off. The resultant explosion of sound triggered Wendy's still strong infantile fright mechanism, which caused her to lose her tenuous grip on the edge of the pool and under the water she went. I was on the scene within a second but had to spend the next 25 minutes comforting her as she screamed with rage at herself for letting go of the pool edge. She still insists on being allowed to cruise the edge of the pool alone.

As my wife Buareon is Thai, and has only a reasonable command of English, I found that I needed to be at Wendy's examinations to help explain her history to doctors as well as to explain what they were saying to Buareon.

The equity I expected and took for granted on the footy field and in the sparring ring is still only a distant wish for those with a disability. I have resolved not to accept this and I continue to do what I can to try and set the scales right.

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Melinda Ewin - QLD, Chairperson

I studied at university when my children were little with the ambition of learning how to advocate for human rights and greater social equity for people in developing countries. When my son Angus was diagnosed with autism at the age of six, my eyes were opened through personal experience of disability that people with disability in Australia are living in similar conditions to people in the developing world.

Angus is now 16. In the time since his diagnosis he has grown into a wonderful, very tall, young man. Together with his brother Declan (who is a year younger but slightly taller) we have been advocating for a better life for Angus and people with a disability generally.

We have had many setbacks but also some significant triumphs. Each triumph has reinforced the need for families to advocate relentlessly for what they want in their children’s lives. It has also reinforced the need for a strong federal representation at a systemic level that AAFCD can provide on behalf of children with a disability and their families.

We indeed are living in exciting times for people with a disability. We now have the United Nations Convention on the Rights of Persons with Disability. We also have a willingness of government to hear and act on the voice of families. I am truly appreciative of being part of the Steering Committee of AAFCD at this historic time. I wish you all the best with your advocacy efforts on behalf of your children.

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