UsherKids Australia Transitions Conference

Friday, 25 March 2022 9:00 AM - 4:00 PM [AEDT]

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Family Member Registration Partial Approval - $55.00

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Professional Registration Partial Approval - $95.00

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Family Intro (Usher in Focus + Transitions) Partial Approval - $110.00

REGISTRATION OPTIONS We strongly recommend attendees view the recording of the USHER IN FOCUS Webinar Series from 2020 before joining us for the Transitions Conference to assist with an overall understanding of Usher syndrome and how children with the condition can be impacted in various settings. The Family Intro registration includes both sessions at a reduced rate.

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Professional Intro (Usher in Focus + Transitions) Partial Approval - $200.00

REGISTRATION OPTIONS We strongly recommend attendees view the recording of the USHER IN FOCUS Webinar Series from 2020 before joining us for the Transitions Conference to assist with an overall understanding of Usher syndrome and how children with the condition can be impacted in various settings. The Professional Intro registration includes both sessions at a reduced rate.

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Friday, 25 March 2022 9:00 AM - 4:00 PM [AEDT]

UsherKids Australia will bring together families and a diverse range of healthcare professionals who work with children with Usher syndrome on March 25th, 2022 to exchange information and share different perspectives on some of the most important transition periods facing our children today. The program will also include an opportunity for parents to build relationships with others, as well as start an important exchange of evidence-based practices for caring and supporting children with Usher syndrome in various settings.  And as always, we will hear from those with lived experience of Usher syndrome about what aspects of transitions worked well and not so well to arm families with various strategies to improve outcomes. 

UsherKids Australia Ltd

www.usherkidsaustralia.com

UsherKids Australia is a parent-led organisation which supports and advocates for children with Usher syndrome and their families. Usher syndrome is a genetic condition, characterised by severe to profound hearing loss, deteriorating vision loss due to retinitis pigmentosa, and vestibular dysfunction (a disturbance to the body’s balance system). Usher syndrome affects 6 in 100,000 individuals and is the leading cause of deafblindness worldwide. Due to the rareness of the syndrome, many children and families with Usher syndrome do not know others with the syndrome and find it difficult to find healthcare professionals with sufficient knowledge and experience of Usher syndrome to provide optimal care. UsherKids Australia aims to tackle these issues through connecting families nationwide, providing psychosocial support, educating relevant healthcare professionals on how to provide best care for this population and supporting various research projects into Usher syndrome.

Contact the Organizer View other events

Tracey Johnston
Case Coordinator
UsherKids

Where to Now? After the Usher Diagnosis - Tracey Johnston, UsherKids Australia Tracey is the UsherKids Australia Case Coordinator as well as a Senior Teacher and Consultant with NextSense (formerly RIDBC). Her knowledge and experience working with families of children with sensory impairments spans over two decades. Tracey provides guidance to families particularly in the early years after diagnosis to reduce isolation, increase support and service provision to improve the longterm health and well-being of our families and here she will present on ways to manage some of the early challenges of receiving a diagnosis of Usher syndrome for a child.

About Tracey Johnston

Case Coordinator
UsherKids
John Lui
National Manager
Hear For You

Primary2Secondary - John Lui, Hear For You John Lui is the National Manager at Hear For You, an organisation that provides mentoring and peer support for teens and young adults who are deaf or hard of hearing in Australia. Create mentoring programs for all deaf/hard of hearing teenagers in Year 7-12 across NSW. John, who is profoundly deaf, also manages a successful tennis coaching business and represented Australia in tennis at the 2003 Deaflympics. John will present on the Primary2Secondary program facilitated by Hear For You, which helps kids who are deaf or hard of hearing to make a smooth transition from Year 6 to high school. He will cover a range of things, from making new friends to dealing with bullying and simply finding your way round, as well as discuss some of the strategies that he used to overcome barriers he has faced during his schooling and employment over the years.

About John Lui

National Manager
Hear For You
Michelle Payne
Program Manager
Association for Children with Disability

Teens and Beyond – Michelle Payne and Jenny Salgo, Association for Children with Disability Association for Children with Disability is a not-for-profit organisation supporting children with disability and their families across Victoria. For over 40 years, the organisation has provided support to empower families with knowledge, skills and confidence to achieve the best for their children. Michelle and Jenny will provide information on some financial considerations to support your child aged 13+ now and into the future, including opening a bank account for your teen; applying for their Tax File Number (TFN); Health Care Card, and changes to the various Centrelink allowances.

About Michelle Payne

Program Manager
Association for Children with Disability
Jenny Salgo
Program Manager
Association for Children with Disability

Teens and Beyond – Michelle Payne and Jenny Salgo, Association for Children with Disability Association for Children with Disability is a not-for-profit organisation supporting children with disability and their families across Victoria. For over 40 years, the organisation has provided support to empower families with knowledge, skills and confidence to achieve the best for their children. Michelle and Jenny will provide information on some financial considerations to support your child aged 13+ now and into the future, including opening a bank account for your teen; applying for their Tax File Number (TFN); Health Care Card, and changes to the various Centrelink allowances.

About Jenny Salgo

Program Manager
Association for Children with Disability
Jamie McCarthy
Transitions Support Coordinator
Royal Children's Hospital, Melbourne

Transition from Paediatric to Adult Healthcare - Jamie McCarthy, The Royal Children's Hospital Melbourne Jamie has worked at the Royal Children’s Hospital as a nurse for over 25 years. For the last 5 years he has been part of the Transition Support Service as a Transition Support Coordinator who assists young people with chronic medical conditions and/or disabilities and their parents and carers to transition and transfer to adult care. Jamie will present on the transition process that typically begins at about the age of 15, and how young people and parents can gain the necessary knowledge, skills and care coordination, to ensure a safe and supported move from the paediatric to adult health services. Outside of his work, Jamie plays in a band called the Rectal Tubes with other nurses from the hospital and presents on community radio shows.

About Jamie McCarthy

Transitions Support Coordinator
Royal Children's Hospital, Melbourne
Hannah Kan
Senior Engagement Officer
National Disability Insurance Agency

Pathway to Post School Life – Hannah Kan, National Disability Insurance Agency Hannah Kan from the NDIA will present information to support parents/carers of young people with a disability to build skills and pave a pathway to post school life. The presentation will provide a discussion a range of career planning and pathways tools, NDIS-funded supports and other assistance to help young people to build skills to prepare for their transition, and support them in achieving education, training, employment and other goals, post-school.

About Hannah Kan

Senior Engagement Officer
National Disability Insurance Agency

Parental Experience of School Transitions - Vicki Cox, parent of two young adults with Usher syndrome Vicki is mum to two young adult daughters with Usher Type 1 who are navigating post school options. Her oldest daughter is studying Biological Science at University and her youngest engaged initially in TAFE studies in Screen and Media and more recently with an on-line private college studying animation. Vicki has worked as a Speech Pathologist in the disability area with a focus on Early Intervention. Her family are currently living in the UK temporarily, which has added more challenges to life! Vicki will be sharing her daughters journey’s transitioning from the supportive local high school environment, including the challenges in making study and career choices, accessing tertiary education and seeking disability supports.

About Vicki Cox

Parent
Bettina Liang
Young Adult with Usher syndrome

Lived Experience of School Transitions- Bettina, young adult with Usher syndrome Bettina is a young professional who recently started her career in the tech industry as a Project Manager and Business Analyst. She has a bilateral profound hearing loss and wears two cochlear implants. She went to RIDBC's Garfield Barwick School and transitioned to Fort Street High School before studying a Bachelor of Technology and Innovation at UTS. Bettina enjoys musicals, long walks and embarking on her next creative project in her down time. Bettina will discuss how Usher syndrome has impacted her life through school, university and in social settings.

About Bettina Liang

Young Adult with Usher syndrome

09:00 AM

Welcome

09:00 AM - 09:15 AM
09:15 AM

Where to Now? After the Usher Diagnosis - Tracey Johnston, UsherKids Australia

09:15 AM - 10:00 AM
  • Tracey Johnston

    Case Coordinator

10:15 AM

Primary2Secondary - John Lui, Hear For You

10:15 AM - 11:00 AM
  • John Lui

    National Manager

11:00 AM

Morning Tea Break

11:00 AM - 11:30 AM
11:30 AM

Transition from Paediatric to Adult Healthcare - Jamie McCarthy, The Royal Children's Hospital Melbourne

11:30 AM - 12:00 PM
  • Jamie McCarthy

    Transitions Support Coordinator

12:00 PM

Pathway to Post School Life - Hannah Kan, National Disability Insurance Agency

12:00 PM - 01:15 PM
  • Hannah Kan

    Senior Engagement Officer

01:15 PM

Lunch Break

01:15 PM - 01:45 PM
01:45 PM

Teens and Beyond – Michelle Payne and Jenny Salgo, Association for Children with Disability

01:45 PM - 02:45 PM
  • +1
  • Michelle Payne

    Program Manager

02:45 PM

Parental Experience of School Transitions - Vicki Cox, parent of two young adults with Usher syndrome

02:45 PM - 03:15 PM
  • Vicki Cox

    Parent

03:15 PM

Lived Experience of School Transitions- Bettina Liang, young adult with Usher syndrome

03:15 PM - 03:45 PM
  • Bettina Liang

    Young Adult with Usher syndrome

03:45 PM

Closing Remarks

03:45 PM - 04:00 PM
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