Retinal Prosthesis For People Who Are Vision Impaired

Professor Anthony Burkitt, Chair of Bio Signals and Bio-Systems, Department of Electrical & Electronic Engineering, University of Melbourne

A visual prosthesis (Bionic Eye) consists of an array of electrodes surgically implanted on or near the retina to stimulate retinal cells, thus acting as a substitute for the photoreceptors that no longer function effectively. The visual image is captured by a miniature video camera attached to glasses. The image is processed in this external component and the signal is transmitted wirelessly to the implant. The visual scene is transformed into a code consisting of precisely controlled electrical pulses on each electrode. The resulting perception is typically of “phosphenes” – large isolated spots of light at particular places in the visual field. The power required to stimulate the retinal ganglion cells is transmitted inductively. The materials must be biocompatible in order to avoid adverse tissue reaction and the stimulation regime must be safe and efficacious. Retinal prostheses are only viable if the visual pathway from the retina to the brain is intact and functional, as is the case for the most common forms of blindness, including age-related macular degeneration and retinitis pigmentosa. It is anticipated that the first generation of devices will provide wide-view ambulatory vision for patients who suffer issues with light perception and mobility. Future generations of device are aimed at providing high-acuity functioning central vision, image perception that enables increased patient independence.

 

Impact Of New Technology On Options For Hearing Remediation

Professor Robert Cowan, Chief Executive Officer/Principal Research Fellow, the HEARing CRC University of Melbourne

Paper will discuss how new technologies have impacted on designs in acoustic and implantable hearing devices, and how this in turn has widened range of options available for children, adults and the elderly with congenital, acquired and progressive hearing loss.  In particular, the focus will be on implantable devices,  but there will be much overlap with acoustic hearing prosthetics.

 

Unseen And Unheard – A Study Into The Number Of People Who Are Deafblind In Western Australia

Debbie Karasinski, CEO, Senses Foundation, WA

In 2007, Senses Foundation commissioned a study to identify the number, location, age and level of disability of people who are deafblind throughout Western Australia. The findings revealed numbers which place in dispute the estimated incidence of deafblindness in developed countries, such as Australia, which is 20 per 100,000.

 

The findings are described along with the implications for service delivery and for incidence predictions in the developed world.

 

Humanware – Providing Greater Human Freedom And Independence For People Who Are Deafblind

Ramona Mandy, Senior Blindness Products Consultant, HumanWare

This presentation will introduce the DeafBlind Communicator, (DBC), which is an exciting new product that allows deafblind people who read braille to communicate directly with people who do not know sign language or braille. Features of the DBC will be outlined and some functionality will be demonstrated during the presentation.

 

The DBC is a tool for face-to-face communication, making TTY calls, sending text messages, and instant messaging online, plus much more.

 

The benefits of the DBC for deafblind people as well as the sighted, hearing people with whom they wish to communicate will be discussed.

 

Introducing Communication Guides To Deafblind Services In Western Australia

Angela Wills, Deafblind Consultant, Senses Foundation, WA

The presentation will provide an overview of research undertaken of services that are being provided in other countries drawing on best practice principles. The presentation will compare the activities undertaken with clients by staff in similar roles to that of the Communication Guide,

exploring the current level of training available to support staff taking on these roles.   Senses Foundation is developing a training package to ensure people who are deafblind are being supported in the community by skilled staff in addition to supporting the professional development needs of the Communication Guides.

 

Has Life Improved For Deafblind People Over The Past 20 Years? Where To From Here, Or Is It Still The Too Hard Basket?

Janne Bidenko, Public Officer/Volunteer Coordinator, Deafblind Association NSW

Where we have come from and where we should be going. Why has there not been more achieved in this time, in all areas, such as communication, education, transition from school, training, employment, support, accommodationand aging?

 

Ecommunication – New Ideas And Solutions For Low Vision And Braille Accessibility At Ablelink

Claire Tellefson, Project Coordinator ablelink, Able Australia

Ablelink is a drop –in centre for adults with deafblindness and provides training and access to the internet.  This small vibrant centre is constantly exploring new technologies to facilitate ecommunication and explore new directions in the quest to find affordable solutions for accessibility.

 

At ablelink, the deafblind community is able to explore accessibility aides available on a range of computer based operating systems and hand held mobile devices to learn about web based communication and telecommunication.  In having “hands on” access to a range of equipment, they are able to find their own access solutions, enabling them to “keep up” with new technologies and make informed choices about what they purchase. 

 

Through this ecommunication technology, the deafblind community has been able to learn from each other and reach out to the wider community using e-photos, e-video, e-text and e-Auslan.   This growing confidence with ecommunication has facilitated stronger bonds with family, carers, friends and has enabled adults with deafblindness to participate in the wider community in ways, not previously possible, due to their isolation.

 

The H.O.P (Hanging Out Program): Interaction For Adults At Risk Of Isolation

Sheridan Forster, phD Candidate, Centre for Developmental Disability Health Victoria

There are many people in our adult residential and day services who are at risk of isolation because of their difficulties in communication. People may be unable to initiate interactions with others, and rely on other people to approach them for company. Their own style of communication may be very different from other people: sounds, movements, eye gaze, all things that may be difficult to understand.

The H.O.P. (Hanging Out Program) was designed for those people who were at risk of not having meaningful engagements with other people. The H.O.P., though being inspired greatly by the theory and practice of Intensive Interaction, differed from I.I. in that staff did not require special training and different reflective practices were utilised. It required a commitment that a staff member would spend ten minutes with a person each day and give them 100 % attention, and then write down what they did.

In H.O.P. the things that people do together are not prescribed. They may sing, play, chat, do massage, or just watch the world go by. The support worker needs to pay total attention to the person; watching their reactions, noting things that worked and didn’t work.

The H.O.P. has had a large impact on First Base West, an adult day service in Melbourne. It has enabled staff to finely tune their knowledge of people with multiple disabilities. Staff have shared this knowledge with their colleagues. Most importantly, staff have modelled to other service users how to spend time with their peers with more severe disabilities. This intimate knowledge proves invaluable to real person centred planning, that starts with a strong knowledge of the person.

 

People With Ushers: Different Journeys And Perspectives

Carla Anderson, Deafblind Services Manager, Able Australia

A DVD showing various people with Ushers Syndrome sharing their lives and experiences followed by a discussion with the audience.  Each person in the DVD will share perspectives on how their lives have been affected by the genetic condition, how they have managed life's challenges and how they are interacting in the wider community.

 

Issues such as self esteem, acceptance of Ushers, autonomy, isolation, loss of control, friendships and boundaries of professional workers will be covered throughout the presentation.

 

Tech Heads: Introducing Technology To Young Children Who Are Deafblind

Fiona Kemp, (Occupational Therapist) & Melanie Robartson (Speech Pathologist), Senses Foundation, WA

Often the families and people who work with children who are deafblind are so overwhelmed by the complexity of the child's sensory, medical and physical needs that they can feel at a loss as to what they can do with the child. While there are many tried and tested methods that people can employ, they may overlook the technologies now available to help enrich the child’s lives. Technologies can afford children with deafblindness the opportunities to experience, initiate and participate in the world around them. Both low and high tech assistive technologies are available for these children and can contribute to:

•           Providing an environment that supports their abilities and needs

•           Developing core learning skills such as cause and effect

•           Individualised communication systems

•           Supporting their sensory loss

 

Vision Impairment And Sign Language

Annette Clarke, Senior Speech Pathologist, Royal Institute for Deafblind Children, VisionEd, NSW

The presentation will provide an overview of two related projects undertaken at RIDBC focusing on the impact of vision impairment on the visibility of sign language. The first project is a quantitative research study of 31 subjects which investigated the impact of moderate and severe vision impairment on the visibility of key aspects of sign language, specifically sign hand shape and sign hand movement. Key findings from the study and their implications will be discussed. The second related project is a booklet of vision simulations which provides practical information on the impact of reduced visual acuity, lighting, contrast, and clutter on the visibility of signs. Practical ideas for the implementation and use of sign language with individuals with reduced visual acuity will be discussed.

 

Teaching Sign Langauge To A Child Who Has Recently Become Deafblind

Tricia d’Apice, Senior Consultant Vision, Royal Institute for Deafblind Children, Teleschool, NSW

This is the story of a young 9 year old girl who recently became Deafblind, will be told. There will be discussion and demonstration of some of the communication resources used demonstrating some of the resources used.

 

Communication options for this young girl have been diminishing since her undiagnosed condition has been taking its course. Her vision and hearing are close to gone, she also has a peripheral neuropathy that is affecting the sensation in both her hands and feet, which is also degenerative.

 

She currently communicates through Braille with an attached QWERTY keyboard. Family and friends type in the conversation, she responds by Brailling back. The receiver either hears the reply or sees it on a text display. As the sensation in her fingers decreases, this option will not be possible.

 

Many forms of input were considered for her future, however she was previously a reluctant signer, relying only on her vision, not allowing many signs to involve touch. The process of moving towards Sign Language has to be slow, respecting her emotional level as she adjusts to her losses. Also coming to terms with the fact that some people may be touching her. A difficult acceptance for a young girl who is fiercely independent.

 

Communication Guides Are Finally IN Australia – Interim Results Of A Pilot Running In Western Australia

Matthew Wittroff,, Manager Therapy & Specialist Services, Senses Foundation, WA

International programs have demonstrated that specialised intervention, even at limited levels each week, can reduce isolation, increase independence and reduce the likelihood of premature admission to institutional care.  In a number of countries outside Australia, people who have a  dual sensory loss are entitled to an assessed level of support to maintain their independence, opportunity for socialisation and community involvement.  In some countries this is enshrined in legislation. In Denmark these support workers are called Contact Persons, in the United Kingdom they are Communicator Guides and in Canada they are Interveners.  These people are specifically trained to be aware of the issues related to dual sensory loss and to work with the person to be the link between them and the community, thus minimising isolation, and teaching the skills required for ongoing independence.

Service providers in Australia do not currently provide this specialised support to people with a combined vision and hearing impairment. Senses Foundation, in collaboration with Curtin University, is exploring a model which has proven to be very effective internationally.  This project is an Australian first and aims to provide research data on the effectiveness of such a program.  Senses Foundation has received funding from the Disability Services Commission and the Ian Potter Foundation to conduct this pilot project.

 

Using Electronic Braille For Work, Recreation And Communication

Daniel Keogh, Blindness Sales/Technical Support, Quantum Technology, VIC

Communication has always been an issue for people who are deaf/blind. This is especially true for those who are totally blind and rely on tactile communication only. There are solutions however. The development of truly portable computers and Braille displays has opened up a whole new world for these people. Quantum Technology will be providing some hands-on demonstrations of just some of the solutions available to Braille users. These include laptops with screen readers using Braille output, the PAC Mate PDA with Braille output and input and Face To Face communication tool for Deaf Blind people.

 

Creating A Web-Based Deafblind Manual For Parents, Teachers & Health Professionals

Dr George Williams, Paediatrician

Making sense and accessing of the miriad of conditions that cause deafblindness.

 

One Size Does Not Fit All! Building Flexability Into The Western Australian Service System

Dr Ron Chalmers, Director General, Disability Services Commission WA

One of the most challenging tasks facing a government disability service organisation is to ensure that services are flexible and responsive enough to meet the specific needs and requirements of the individuals accessing their services.  This is particularly the case when the overall demand for services exceeds the available resources.

 

The safest way to proceed is to offer a standard suite of programs and services that roughly approximate the requirements of people with disabilities and their families/carers.  Eligible service recipients can avail themselves of this standard offering and try and make the services fit their specific needs.  This approach also has the appearance of being equitable and fair - everyone is treated the same way!

 

We all know, however, that needs, goals, dreams and aspirations vary enormously from one person to the next.  Individuals seek different things from the service system, and this is where policy makers and service providers need to depart from their comfort zone.

 

A better, more contemporary, approach is to develop policies and services that are flexible enough to meet the specific needs of the individual, while also allowing for adjustments to be made into the future to accommodate changing needs.

 

In recent times decisive action has been taken in WA to stretch the boundaries of policies, programs and services to build in greater flexibility, thereby offering more tailored supports for people with disabilities and their families/carers.

 

Guided by the principles of personalisation and co-production, the WA Disability Services Commission is attempting to shift the power balance towards end service users so that they have greater control, decision making and choice in the services and supports they receive.

 

Twelve Important Lessons From An Australian Accommodation Support System For Deafblind Adults

Trish Wetton, CEO, The Forsight Foundation For The Deafblind, NSW & Dr Mike Steer AM, Senior Lecturer, Royal Institute For Deafblind Children

The Forsight Foundation located at North Rocks in suburban Sydney was founded 30 years ago by parents of children who were deafblind to provide quality accommodation support services and facilitate training and employment for adults who were both deaf and blind with additional disabilities; and to enhance and enrich their lives. In 2009, Forsight manages eight independent group homes, with 59 full-time, part-time and casual staff providing support to 32 adults with sensory and additional disabilities. In its 30 years of successful operation, Forsight Management and Staff have learned a number of things that are highly important to agency and client success.

 

BAC to the Basics – Behaviour As Communication

Sharron Barrey Grassick, Deafblind Education Team Leader, WAIDE, WA

Acknowledging behaviour as communication is one of the most fundamental and vital links to effective early interactions and beginning to develop meaningful communication with infants and children who are deafblind.  Some behaviours can be very subtle; others considered ‘challenging’.  Regardless of magnitude, it is up to us, as parents and educators, to recognise, negotiate meanings and respond to behaviour as communication.

 

Too often, educators and other professionals new to the field and unfamiliar with children or adults with deafblindness will seek ‘standardised methods of deafblind communication’.  Due to the highly unique nature of each and every individual who is deafblind, there cannot possibly be any one ‘standardised’ method of communication for people who are deafblind.  Varying degrees of hearing and vision loss, as well as widely differing abilities and disabilities will affect and determine each person’s optimal communication mode.  One size does not fit all!

 

There are, in fact many different ways of communicating, depending upon the individual;  just as individuals with deafblindness are unique, so are their preferred means of communication.

 

Those with expertise in the field (J. van Dijk, T. Hartshorne, I. Rodbroe, etc.) advocate recognising and responding to behaviour as communication as an integral strategy in developing effective interactions as well as in reducing stress.

 

Strategies covered will address the following:

•           Responding to behaviour by negotiating possible meanings

•           Redirecting behaviours to more socially acceptable communicative behaviours

•           Offering and inviting communication, rather than directing and manipulating

•           Hand under Hand

•           Waiting….

 

Congenital Deafblindness In Europe/Interacting With Adults With Congenital Deafblindness

Meredith Prain, Speech Pathologist, Able Australia

This presentation will report the key findings from an Ethel Themby Study Tour conducted in September / October 2009. The focus of the study tour is on services for adults with congenital deafblindness. At the time of writing the study tour has not been completed however the author plans to attend residential and day services for adults with deafblindness in Switzerland, Italy, The Netherlands, Scotland and England. The tour will also include attendance at the 7th Deafblind International European Conference and Pre Conference workshop on communication for people with congenital deafblindness.

 

This presentation will address differences between services in Europe and those in Austrlia and will report on key initiatives and innovations being undertaken in Europe .

 

Interacting with adults with congenital deafblindness who do not use formal communication methods such as speech or sign poses challenges for the staff who support them.

 

The paper will present the initial findings from a study investigating interactions between adults with congenital deafblindness and the staff who support them. It will raise issues which require addressing and potential strategies for addressingt hese issues.

 

A “Visible” Woman: Learning With A University Student Who Is Deafblind

Dr. Kate Chanock, Director, Humanities Academic Skills Unit, La Trobe University, VIC

We will talk first about the practical challenges Michelle faces in studying without sight or hearing, and the strategies we have developed together to meet those challenges. These include regular meetings to clarify assignments and draw out Michelle’s ideas; records of our discussions for Michelle to build on; and techniques for responding to Michelle’s drafts of written work in ways that are accessible and useful to her. At the same time, Michelle is educating the university community about disability, and we will talk about this too. Michelle has used her studies to construct an understanding of how the personal and structural challenges of disability relate to other kinds of exclusion by which, as Ralph Ellison showed in Invisible Man, people can be rendered invisible. By sharing her learning with her lecturers, support staff, and peers, Michelle has made disability more visible to all of us.

 

Dual Sensory Impairment: A Practise And Policy Challenge For Age Care

Dr Julie Schneider, Post-doctoral Researcher, Menzies Centre for Health Policy, NSW

The combination of hearing and vision impairment is an increasingly frequent disability due to population aging. We will describe the Blue Mountains Eye Study, a representative population-based cohort of Australians aged 50+ years, and present findings specific to the prevalence and impacts of dual sensory impairment. We will discuss and highlight what we see as three challenges to effective services provision for this group, including: low use of rehabilitation services, reduced efficiency in services provision, and poor recognition of dual sensory impairment in health policy.

 

Rubella Susceptibility In Women Of Childbearing Age – Changing Demographics

Monica Haverkamp, Rubella Edication Nurse, Deafness Foundation, VIC & Dr Barbara Francis, Medical Virologist, National Serology Reference Laboratory

This paper describes the changing demeographics of rubella susceptibility in Australia and the activities undertaken by the Deafness Foundation Rubella Committee to address the issue.

 

Rubella susceptibility in women of childbearing age – changing Demographics

 

Congenital Rubella Syndrome (CRS) was a major cause of deafness until the introduction of a rubella vaccine in 1969. Since that time, largely due to effective vaccination strategies, the incidence of rubella and CRS has fallen dramatically in most developed countries. The burden of CRS continues to be a major problem in many developing countries with estimates by the World Health Organization indicating at least 100,000 infants are affected annually.

In Australia, a small numbers of cases of rubella and CRS continue to occur and these cases are often associated with overseas travel, or migration from countries that have less than optimal vaccination programs in place. A longitudinal study by Dr Barbara Francis under taken over a 25 year period at the Mercy Hospital for Women found that women from Africa and Asia  had a higher level of susceptibility to rubella than Australian born women. While  susceptibility to Infection declined significantly amongst  the Australian population  it continues to be a problem in women from those countries.

 Any rubella vaccination program needs to include children and women of childbearing age. Many migrants and refugees to Australia are unaware of the risks of rubella infection during pregnancy or of their individual vaccination status.    The problem needs to be addressed by more thorough screening, as well as both targeted and opportunistic vaccination combined with education.

 

Mental Health Issues In Deafblindness: Depression & Anxiety

Mary Tass, Psychologist, Deafblind Services, Able Australia

A brief outline of the study methodlology and the findings of depression and anxiety in deafblind people.  The audience will compare the rate of depression in the general population and compare it to the rates of depression in the deafblind sample. 

 

A 3 minute DVD will also be used so audience can view deafblind people expressing their experiences with depression and anxiety and coping strategies.

 

A brief outline of the rationale and plans for the Health and Welness Support Group and the results of the pilot study in preparation for the support group.

 

Building A Social Movement Of And For Aboriginal Women With Disabilities

Damian Griffis, Executive Officer, Aboriginal Disability Network, NSW

By any measure Aboriginal people with disablity are amongst the most disadvantaged Australians. They often face multiple barriers to their meaningful participation in community life.  Most Aboriginal people with disability are at the perphery of all aspects of the disabiltiy sector.  Furthermore there is a prevalance of disability in Aboriginal communities that is twice that of the non-Aboriginal community.  This presentation will discuss ways in which the unmet needs of Aboriginal people with disabiltiy are beginning to be met by the development of a social movement of and for Aboriginal people with disability.

 

Sharing Knowledge: Building Capacity In Partnerships Between Indigenous Communities, Deaf Indigenous Consultancy & Deafblind Services

Jody Saxton-Barney, (Consultant) Deaf Indigenous Community Consultancy, VIC & Merle Miller (Teacher) Mandefa Koori Unit

Collaborative approach between eduction and community awareness. how can Deafblind services engage with Indigenous communities from grassroots.

 

‘Super Sibs’ Sibling Support: A Program For Brothers And Sisters Of Children Who Are Deafblind

Karen Wickham (Social Worker), Senses Foundation WA

Throughout their lives, brothers and sisters of children with disabilities will share many—if not most—of the same concerns their parents will experience, as well as issues that are uniquely theirs. This presentation will discuss the development and implementation of the “Super Sibs" Sibling Support Program project established by Senses Foundation in 2006 and designed to support siblings and families of children who are deafblind.  Based on the ‘Sibshop’ Model, the program enables siblings to feel recognized and respected as individuals, whilst offering necessary support and strategies to better equip them to deal with the many challenges, joys and responsibilities faced when having a brother or sister with a unique disability. Sibling events are planned and organized to provide a wellness approach in lively, fun, day activities, offering siblings opportunities for peer support in a context that emphasises a kid’s eye-view.  Activities are adapted to suit children of all ages, including preschoolers, primary and teenage children and include both interactive/therapeutic groups and family outings.

 

Do Working Relationships Between Deafblind People & Professionals/Volunteers Have Cleared Boundaries And Behaviour Rules?

Karli Dettman, Yoga Instructor & Deaf Conusellor, Karli Yoga Counselling Service, VIC & Heather Lawson (Deafblind Consumer)

I am doing a short research to find out if yoga is also helping deaf people to achieve better general health including mentally, physically and spirituality. I am a Deaf yoga teacher and currently running deaf yoga classes so I have an interest in this area. 10 Deaf participants have enrolled 8 weeks yoga class in April this year. They practiced postures, breathing techniques, relaxation, and meditation and listened a bit of philosophical discussion.  They have been asked to rate their current general health in the following areas:  Stress, weight, mental health, cardiovascular, respiratory, musculoskeletal, gastro-intestinal and spirituality.  They also have been asked the following questions: Do you think Yoga helps you to look at life differently and do you find it beneficial in having a trained yoga teacher who uses Auslan.

 

Art From The Heart: New Ideas, Directions & Solutions

Paul Wawryluk, Manager Respite/Ableart, Able Australia

 

Able Art and initiative of Able Australia commenced in 2007 and has grown in size and populatrity since then.

 

This presentation will disucss how the program was initially extablished, how it has grown and developed over time and it's future directions.

 

Benfits and outcomes for  the adults with deafblindness who have participated in the program will be highlighted.

 

Developing Awareness About Deafblindess In A TAFE Setting

Christopher Dunn, Teacher, And Julian Herten, Coordinator Auslan & Deaf Studies Centre, Kangan Batman TAFE, VIC

Kangan Batman TAFE has been offering 11 week (one semester) course on "Understanding of deafblindness and its implications" to students who are studying the Diploma of Auslan. This is the second time that it has been offered with positive feedback from last year's students.

 

Person Centred Approches: Wishful Thinking Or Realistic Oppourtunity?

Mike House, Project Officer, Senses Foundation, WA

Mike grew up on a farm in country Western Australia. His family were heavily involved in their local community and the farm was a place of rest for people from all spectrums of society. The diversity of this environment, and the open and welcoming nature of his parents home were formative experiences for Mike.

 

Interested in people related professions from an early age, Mike left the farm in his early 20’s to study a Bachelor of Social Science majoring in Youth Work. Since then he has worked with a diverse range of people in a variety of settings. Equally at home providing consultancy and advice to managers or direct support to marginalised people, Mike is sought after for his innovative approach and commitment to generating results.

 

During the past 10 years Mike has worked in various capacities at Senses Foundation primarily focussing on the development of services and innovative approaches to change across many aspects of the organisation.

 

Open Access To Leisure And LEArning For People With Deafblindess

Emely McCord, Recreation & Volunteers Coordinator, Able Australia

This comprehensive presentation will cover a variety of topics relating to the importance of leisure, learning and socialisation for deafblind people and the need for a formalised recreation program that specifically targets the needs of deafblind people. The presentation will cover the 'who, what,  where, when' of the recreation program including who is involved in the planning, support and carry out of the activities, what the program offers, where the program is located including barriers to access for deafblind and volunteers and when to apply for funding, recruit volunteers and plan for activities. The Presentation will also look at planning for the future and evaluation of success including photos and client feedback.

 

You And Me – Keeping In Touch

Richard Long, Manager, Community Services, Senses Foundation, WA

Deafblindness affects approximately 6000 people in WA aged 60 years or older.

However recognition of deafblindness in older people is often ‘missed’, being thought of a normal part of the ageing process, as opposed to an often disabling dual sensory loss.

The impact of deafblindness is significant, with communication and mobility being affected.

The You and Me Keeping in Touch project set out to increase the awareness of deafblindness in the older population and to develop a training module to offer information, advice and guidance about dual sensory loss, its causes, the impact on older people and how we can support people in their homes and community.  This presentation will run through the project its development and the some of the hurdles that were faced. It will then introduce the booklet, You and Me-Keeping in Touch and show the 15 Minute DVD that accompanies this.

 

Public Policy & Deafblindness: State Of National Service Provision

Dr Mike Steer AM, Senior Lecturer, Royal Institute for Deafblind Children, Renwick Centre, NSW

Deafblindness is a low incidence disability and many Deafblind Australians have great need for additional support in most major life areas. Little is known about them as a group and service provision generally "falls between the cracks". Their special needs are the focus of on-going attempts by the Australian Deaf-Blind Council (ADBC) to draw political attention to the probability that most still experience isolated, friendless lives, compounded by relative penury. To this end, the first National Australian Deaf-Blind Forum was held several years ago at Sydney's Royal Blind Society. Its purpose was to prepare recommendations for presentation to the National Disability Advisory Committee for inclusion in the periodic negotiations between Commonwealth, State and Territory  Governments that inform the Commonwealth-States-Territories Disability Agreement (CSTDA). This Agreement provides the national framework for provision of government support of services for Australians with disabilities. It is the mechanism by which state and territory governments plan, set policy and manage accommodation support, community support, community access and respite care services.

 

CHARGE Syndrome –Setting The Scene: Communicating With Babies & Toddlers

Rob Last, Early Childhood Educator, Vision Australia, VIC

"For children who have CHARGE syndrome there is strong evidence that diagnosis and intervention before six months of age significantly improves outcomes in communication, behaviour and learning' Jan van Dijk and Arno de Kort.

This presentation explores what communication means, the early considerations in communication wih babies and toddlers, the strategies in acquiring communication skills and exploring outcomes.

 

Challenges Concering Considerably Reduced Hearing & Mobility

Ray Joyce, Senior Guide Dog Instructor & Tutor, Guide Dogs NSW/ACT

The significant loss of hearing changes your life when you are blind but have a cochlea implant and a hearing aid.There is an immediate loss of directionality which means you don’t know which way you are facing.There is also an immediate loss of locality that is you don’t know where the person you are talking to.There is a significant loss of confidence occurring which may slowly return. You would need to sharpen up on orientation and mobility skills. You would become more reliant on a guide dog.There are inherent risks associated with travel including road all types of road crossings However, as difficult as it may seem, there are techniques which may assist a person in this situation.

Discussion of issues facing people with a significant vision impairment who have a sudden and significant drop in hearing.

 

The Not So Lucky Country: Deafblindess, Advocacy & Strategies To Enact Meaningful Change

Jessica Zammit, Victorian Advocacy & Information Officer, Blind Citizens Australia

Whilst Australia is often viewed as the 'lucky country', the participation of marginalised groups, including people who are deafblind, is less evident in the practical realities of Australian life. Furthermore, the existence of both Federal and State equal opportunity laws has not automatically translated to equal opportunities for people with a disability.

 

This presentation will provide a summary of both Federal and State equal opportunity legislation and how these tools can be used in conjunction with individual and systemic advocacy to lead to meaningful change. The presentation will specifically focus on consultation undertaken with the deafblind community about the key issues experienced (including the need for increased supports, services and funding, communication, being able to meet the rising costs of living and being able to independently use public transport amongst others), the findings of recent forums held by Blind Citizens Australia with the deafblind community and how this information is starting to inform government policy.

 

Information will also be provided about the role of Blind Citizens Australia, our development of a deafblind disability action plan to address the needs of our members with dual disabilities and the successful strategies which have been adopted by the blindness community to address discrimination and unfair treatment which can be modelled by the deafblind community.