President
Anne-Maree Newbold - Victoria

My partner, Laurie and I have two children. Lewis aged 14 and Elliot who is eight 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 families of children with a disability - 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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Vice President
Katrina Clark - NSW

I am the mother of three children: Brianna (15), Christopher (12) and Georgia (10). Georgia has severe developmental delay, with the most likely contender being Rett Syndrome, but this has yet to be confirmed. Our family lives in Sydney and Georgia attends an excellent special needs school run by the Royal Institute for Deaf and Blind Children.

My husband and I were unaware that Georgia had any difficulties at all, but at three months of age she started to have seizures. Still oblivious to the implications of this, we took Georgia to our local GP. He admitted her for tests but gave us no clue of what might lie ahead of us. What followed was a flurry of doctors, medical jargon and therapists.

We had entered a brave new world that we never knew existed. I expected to see areas that needed improving, but what I did not expect, and am now confronting, is the need to fight so hard to maintain what is currently provided to people with disabilities.

Organisations like the AAFCD provide one of the few avenues available for families to join forces, to be heard and to effect change. I know that between us, we have many innovative and practical ideas to improve the lives of families of children with a disability. The challenge is deciding where to start!

Having been a part of the Association for Children with a Disability in New South Wales for several years, I am very excited to now be a part of the Australian Association for Children with Disability.

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Treasurer
Alan Blackwood - Victoria

My name is Alan Blackwood and I am pleased to be able to contribute to the work of AAFCD. As a parent with a child with developmental disabilities I have followed AAFCD's work with admiration over the years. Our eldest child William was born 16 weeks premature in 1993 and spent most of his first years in and out of hospital.

William has been through the eventful journey of early intervention, various therapy programs as well as integration programs at two primary schools. He's about to finish up at Southmoor Primary School in Moorabbin, having been well supported, and is enrolled at Berendale School for high school.

William has a number of developmental issues and is on the autism spectrum. He has never eaten solid food, and lives on a liquid diet from the Home Enteral Nutrition (HEN) program at the Royal Children's Hospital (RCH). He still requires assistance with many daily activities, including managing his energy levels.

William has a great love of the Internet and music, and has an encyclopaedic knowledge of all things Bob Dylan, David Bowie, Pink Floyd, Tom Waits and others of the sixties and seventies. He also is a fan of Jack Kerouac's prose, and one day wants to be 'On the Road' himself! He has a sister Georgia who is nine and a big time sportskid and socialite.

I have spent most of my working life in the disability field, having worked for the Victorian based organisations, Yooralla, Headway and the Transport Accident Commission (TAC). I now work as the public policy manager for MS (Multiple Sclerosis) Australia and this job takes me quite often to Canberra where in my spare time I am happy to help with AAFCD's lobbying and advocacy work.

My partner Veronica also works in the disability sector, in recreation. I hope to be able to use my experience to good use on the AAFCD Board to promote the issues we face as families in the world of government policy and achieve some positive changes.

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Cheryl Pattrick - ACT

My name is Cheryl Pattrick. My husband Steven and I have 3 sons, Ben (16), Matthew (15) and Luke (12). When Ben was 6 months old, we were told that he had cerebral palsy, something I knew next to nothing about. It was to take me on a totally new learning curve in my life. On Ben’s 10th birthday, he became the proud owner of an electric wheelchair, which has made a huge difference to his life and independence.

I have been involved with various groups and organisations over the years: Friends of the Brain Injured, Child Health and Development Service, Client Consultative Group, Advocacy Action ACT and the Cerebral Palsy Support Group. I have also been involved with several reviews over the years: Special Education, Therapy Services in Schools, Needs Assessment Tool and most of these issues are ongoing.

The vision of my son's future and the future of all, I am sure, will keep me involved in similar activities in the years to come.

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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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