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Launch at Luna Park - 13.09.2002

Speech by Hilary Johnson - Manager, CRC
Speech by Maree Ireland

Speech by Hilary Johnson - Manager

Thankyou for coming today. Thankyou in particular to the Minister for Community Services the honourable Bronwyn Pike for making time to be here to launch this important initiative.

Many of you stood outside on the pavement this morning wondering quite what was going to happen. Did you feel a little apprehensive , checking your watch and waiting? For many people that is what the world is like all the time ,confusing ,a little disconcerting with inaccessible information about their environment.

What would it have been like if you were unable to speak - or worse still not understand other people. Would you have been so accommodating and understanding in that situation? In order you didn't get too bored and tired of standing and waiting we provided some entertainers who used facial expression and body movement, mime and gesture to communicate to you a message.

Eventually you were given information and directions in speech. You have experienced a number of different forms of communication.
The minister by her actions ungagged the Luna park mouth to symbolise the opening of the Communication Resource Centre .In doing so she also opened many new possibilities for communication for the 1 in 500 Victorians with complex communication needs

What does having a complex communication need mean? It means having little or no functional speech or where your speech is very hard to understand which is not due primarily to a hearing loss. This term CCN originated in Victoria and has now been adopted by ISAAC the International Society for Augmentative and Alternative Communication to replace the more negative term of severe communication impairment. Once again Australia, and in particular Victoria, can claim to have led the way in reframing our thinking about citizens with disabilities. The Communication Resource Centre is yet another example of Victoria leading the way .

The Communication Resource Centre is one component of a new service model for people with complex communication needs . It is the hub- in a hub and spoke model which many of you will have heard about through the community forums conducted by the Dept of Human Services . This model is not about reinventing the wheel but about building on existing strengths- about developing a sustainable statewide approach to providing local services using a community development process.

Let me talk a little about the hub- the Communication Resource Centre The centre is staffed with people with expert knowledge in ccn and currently includes speech pathologists previously the staff of SCIOP ( severe communication impairment outreach projects ) plus a community development worker with ccn, a researcher, an OT, the Gastrostomy Information Support Service , Makaton Victoria and the Communication Aids Resource Materials service. In addition the centre provides a mentoring studentship service for two speech pathologists and one direct support worker

GET them all to stand up!! Look for someone with gold stars!!

The Communication Resource Centre commenced on July 1st and is funded for 4 years. Our aims are encompassed in our mission statement "to work for people with complex communication needs to create inclusive communities". How will we do this? One of the ways is by developing networks of people who are committed to inclusive services and information. Another is exploring person centred approaches to develop the dreams and aspirations of people who may be unable to speak but still have plenty to communicate. We will be looking for services which are interested in developing community communication strategies , assisting with eating and drinking difficulties and providing services for people who dribble- often an additional embarrassing difficulty.

The Communication Resource Centre will also provide training, mentoring, consultancy, product development, and research. We don't have all the answers yet. But we do know a lot of the questions that need to be asked. If you are a person with ccn have you ever wished that the shopkeeper would address you and not the person with you? What is the most effective way to educate the general public?

We also want to develop practical ways of providing accessible information throughout the community. For those of us with aging sight all we need is larger print or nice clear pictures. Have you ever puzzled over symbols in your community which supposedly explain what services are available ? One of the challenges is to develop two or three dimensional symbols which are culturally sensitive and which do not rely on print.

A major objective of the Communication Resource Centre is to support the development of and enhance existing communication services and resources around the state. These services are the spokes referred to in the hub and spoke model. Some will have a geographic focus while others will focus on particular areas of expertise. There are already some existing expert spokes such as Comtec for communication technology and Bethlehem hospital for their work with people with progressive neurological disabilities. Over the next eighteen months spokes will be set up throughout Victoria to enhance the lives of people with ccn within their local communities. Once this process is complete we expect there be a rich and accessible network of services and support for people with ccn throughout Victoria.

I would like to congratulate the Bracks government for its recognition of and commitment to the needs and rights of people with complex communication needs through the Speech therapy Initiative

You might be asking yourself why we chose Luna park as the venue for the launch of this service. The first and most obvious reason is that Luna park is the biggest mouth in Melbourne and it provided a very graphic way for us to symbolise the way in which the inability to speak is a major barrier to participation in ordinary community life. But Luna park is also a place of fun and celebration. We think the establishment of the Communication resource centre is something very much to be celebrated.
We do apologise if we have misled some of you who were looking forward to free rides. We hope the improved services you receive over the next few years will compensate .

For further information on how to contact us and our toll free number
please take one of our information leaflets available on the table at the back. I urge you all to contact us and share with us your hopes, concerns and dreams and ideas. We at the Communication Resource Centre will be happy to discuss with you ways to turn concerns into new practices, turn hopes into actions and dreams into reality.

Thankyou.

L-R Vici Funnell (Scope CEO), The Hon Bronwyn Pike MP (Minister for Community Services and Housing), Maree Ireland (front - solicitor and first person with complex communication needs admitted to Victorian Supreme Court), Peter Smith (Channel Nine celebrity MC), Hilary Johnson (Manager, Communication Resource Centre).

Speech by Maree Ireland - Solicitor and first person with complex communication needs admitted to Victorian Supreme Court

Thank you Minister Pike, Scope, Guests and fellow and future users of augmentative communication.

This is a very exciting event. The launching of a new Communication Centre to meet the needs of people with complex communication needs. Let me also take this opportunity to thank the government for providing the funding for this innovative service model that will assist people with complex communication need to find more efficient and effective ways of communicating.

But hey, let's not get too carried away. In 1981, the International Year of Disabled Persons, people with disabilities were given a whole year to have their VOICES heard and yet, here we are in 2002, when only now something is being done to recognise the needs and undoubtedly, the full abilities and potential of people with complex communication needs. We still have a lot of catching up to do.

Just so we don't miss this weekend, I am going to ask someone to read out most of my speech.

In my life the two most important things, apart from my family, that assisted me in realising my potential and achievements were:
1. Finding the right and most effective way of communicating, and,
2. Having committed and trained attendant carers to assist me.
Let me talk about these two things separately.

I first started communicating by spelling words in the air to my parents and close friends. I was fortunate to have a mum who was interested and persisted in teaching me to spell at an early age. However, this was a very limited way of communicating ie. mainly with family and friends. At school, I progressed to communication boards which meant I could talk to people who were willing to wait until I spelt out what I wanted to say.

When I left school, I was told my only option would be to work in sheltered workshops. I believe that maybe if I had had a more effective way of communication I could have resisted. But one positive outcome of being in a workshop was I was introduced to a Canon Communicator, which is like a mini-typewriter with typed messages on strips of paper. . Once again this opened my ability to communicate with people who didn't know me because I could hand them strips of paper with messages on them. This worked well with people who had seen me type out the message. to them. However, sometimes I'd have a pre-typed message to hand people to save time. Often they would think I was being environmentally friendly by giving them paper to throw away - NOT GOOD! So then I'd then type out another message and would be accused of creating rubbish - I had to really insist they'd read it.

So when I decided to start at Melbourne University for a Arts Degree , and then was accepted into Law School, I was a bit anxious how I would be accepted especially around communication. But I made a few close friends who accepted my Canon Communicator. I think part of the reason was we could hold written conversation in lectures. One drawback with the Canon Communicator is if you forget to dispose of all the strips of paper. In my first year of Law, it was my partners final year, and he'd often go to a café where I'd been and see all these strips of paper. Not good for confidentiality - I soon learnt to dispose of all my conversations.

However it was not all easy and rosy. Many students totally ignored and perhaps resented me being there. I'll never forget one incident. Part of the course was to participate in a moot court, which was like a mock court but requiring all the verbal and written submissions of a real court. Of course I was unable to do the verbal submissions but I'd arrange with my tutor that I'd type out my verbal submission and a friend could read it out for me. Students from the Law Society objected to this, as it would give me an unfair advantage! I didn't have to do the verbal submission.

My biggest breakthrough was when I was able to trial the device I now use, the Lightwriter Dectalk. This happened while I was doing my practical Training Course at Leo Cussens Institute. I had been there 3 months; settled in with a few friends and classes using my Canon, when I read about this new device. I made arrangements to trial it. I was allowed to trial it for 1 month and I can't describe what a difference it made to peoples'; reaction to me. There were about 200 students doing this course and students who had totally ignored me started talking to me; lecturers started expected me to answer questions in classes which wasn't so great for me but still.

The point of my story is that with this new service- hopefully there will be two outcomes. One will be that people with complex needs will be able to use a range of communication strategies early in life and be more accepted into the community. Secondly thes service will be able to teach and promote information about augmented communication to the general public to assist us to be more accepted. For example, I was recently admitted to the Supreme Court of Victoria as a Solicitor / Barrister. This entails a ceremony before three Judges basically of 200 students swearing by almighty god to uphold the law. Each student ha to say this individually. I think I was about 20th in line and when I blurted out I swear by almighty god to do so on my machine I think I woke up the three judges and a few audience members all trying to see where this robotic voice was coming from. I think they'd thought they'd been invaded. But my point is even the people with so called elite education are just plain ignorant about communication methods other than spoken English. The second thing, that assisted me to live in the community and reach my achievements, is the provision of attendant care. I won't go in to too much detail but I have had attendant care now for eight years...`This has enabled me to live in a rented house both in a shared situation and now by myself.

At present, there are many workforce issues, which hinder the provision of attendant care. These issues need to be sorted out quickly because it effects how people with complex communication and health care needs are treatesd. Often attendants arrive at my house unaware of my communication needs and this eats into the time I have available for the assistance I require. A quick story, .which happened while I was sharing. A Home carer arrived. My friend and I introduced each other - I said a few words about studying law then started to read the paper, I heard the carer say to my friend, can she read/? She had assumed because I did not actually speak, I was not intelligent and had totallty missed what I had verbalised on my machine.

As well as improving working conditions and pay of these workers, training is needed in different methods of communication so when they arrive at a person's place, they are not stunned and can be instantly receptive of how a person communicates. What would be really wonderful is if all attendants were trained into being good communication partners before we have to work with them.

As I said before, people with complex communication needs still have a lot of ground to make up before we are fully accepted by the community. This new service will provide information, training, and support to therapists, service providers and the general public. It is important that a range of communication methods are recognised as valid and people with little or no speech are treated with dignity and respect in every walk of life, every community, and wherever we may chose to go. Thank you.

Contacting the Communication Resource Centre:

830 Whitehorse Road
Box Hill 3128
Ph: (03) 9843 2000 or (for callers outside Melbourne) 1800 888 824
Fax: (03) 9843 2033
Email: crc@scopevic.org.au