Becoming Independent Webinar
Young people with CHARGE syndrome, on an excursion in Melbourne, 2018.
The full transcript of this webinar is available as a downloadable PDF.
Resources mentioned during the webinar
Training on CHARGE Syndrome
Understanding CHARGE Syndrome is a free online course on CHARGE syndrome delivered by world experts on the syndrome. Sign up and complete the course at your own pace. This course was created by us, The CHARGE Syndrome Association of Australasia.
Orientation & mobility specialists
These specialists help people with strategies to move safely, confidently and independently from one place to another. Watch this two minute video explanation about orientation and mobility specialists on you tube.
Service providers
Blind/Low Vision NZ (formerly The Blind Foundation)
Communication Guides
These support workers act as the eyes and ears of the person, providing the information they are missing due to their deafblindness. Watch this three minute video explanation about communication guides on you tube.
Service providers
Blind/Low Vision NZ (formerly The Blind Foundation)
Occupational Therapists (OTs)
OT’s help people to do everything they want to do in their daily lives, but can not, due to injury, illness or disability. Watch this one minute video explanation about occupational therapists on you tube.
Service providers
Additional contacts in New Zealand:
Starship Children’s Hospital can give you a referral. Email Starship.Community@adhb.govt.nz.
Contact your GP or Paediatrician
Deafblind Consultant
A deafblind consultant can help the person to assess their needs at home, school, at work and in the community. The areas of need typically focus around communication, mobility and assistive technology. Watch this 3.45 minute video on Deafblind consultants, on youtube.
Service providers
Ask a Deafblind consultant service from Deafblind Information Australia
Help with technology
Word of Mouth Technology is the leading supplier of assistive devices for deaf and hearing impaired people in Australia.
Deafquip NZ have technology products for deaf, hard of hearing and deafblind individuals.
Presenters
Dr Meredith Prain, Deafblind Consultant
Dr Meredith Prain is a Certified Practising Speech Pathologist, researcher and consultant with over 20-years’ experience working together with people with deafblindness to improve interactions, awareness and services. Meredith has a strong commitment to contributing to the evidence-base of best practice in working with people with deafblindness, and to sharing information about best-practice widely. She recognises and values the importance of working developmentally with individuals and their social networks in order to achieve the best and most sustainable outcomes.
Linni Oliver, Communication Guide
Communication Guide with Senses Australia since 2010 after undertaking specialised competency based training in Deafblind issues, sighted guide and Deafblind communication as part of the Communication Guide Pilot Project. I found the role so rewarding that when the Pilot Project ended I continued working specifically with this unique disability. The Deafblind clients I support are my greatest teachers. Through them I am constantly learning about the barriers they face every day and how I can best support them. This experiential learning, along with the training I received, is what makes me the best Communication Guide I can be. I feel so privileged to be doing a job I love so much.
Emily McDonald, Occupational Therapist
An Occupational Therapist and Deafblind Consultant at Senses Australia. Currently completing the Master of Disability Studies (Sensory Disability) at Macquarie University/RIDBC. I work with individuals with Deafblindness across the lifespan, and I am passionate about supporting individuals with Deafblindness, including CHARGE syndrome, to live full, happy, independent lives.
Sarah Dalton
Sarah is a 23 year old woman from New Zealand. She is an accomplished horse rider having competed in the NZ Nationals competition. Sarah has volunteered with Special Olympics NZ and in 2019 she completed her leadership training and became a Global Messenger/Ambassador. Sarah is an advocate with CHARGE syndrome and her story was featured on Attitude NZ, a local television company which promotes engaging stories of people who live with a disability. Sarah has a strong opinion on being independent: ‘It’s the most overused word, right up there with ‘normal’. To me, independence means knowing I can do something myself, but if I want help, it is ok to ask.’