Gold Coast Community Lifestyles

03/10/2025

Please join us for our AGM
Saturday 1st November from 9:30am
Followed by a presentation with Rodney Mills
Towards a Great Life: How SRV Has Helped Me Get There

Values in Action 2025 AGM

Notice is hereby given of Values in Action Association Inc’s Annual General Meeting

Business:

Opening and Welcome

Tabling of Proxy Forms

Apologies

Minutes of Annual General Meeting 2024

Business arising from the Minutes

President's Report

Treasurer's Report

Disclose remuneration and benefits

Election of 2025-26 Committee

Vote of thanks to outgoing committee & welcome to new

Appointment of Auditors for 2025-26

Membership fees

General Business

Guest Speaker:

Following the AGM, join us for brunch and hear Rodney Mills' presentation from the International SRV Conference.

This presentation is a celebration of the quality life Rodney is living, despite his experience of social devaluation and the impacts of his disability. Rodney will showcase the good things in his life, and illustrate how SRV tenets; valued roles, positive image and competency development have been pivotal to this. Rodney and his team (family members and workers) continually seek to identify ways to strengthen existing valued roles, and explore new valued roles for Rodney who has Autism and a severe communication impairment.

Rodney Mills is a presenter, trainer and consultant, focusing on disability, communication, health, and leadership. His presentations cover topics such as his personal journey, communication without speech, and self-advocacy. He trains supports workers, families, and professionals through person-centred approaches and Facilitated Communication Training (FCT). In addition, Rodney consults on areas such as the lived experience of autism, human rights and disability, creating sensory-friendly environments, and improving communication outcomes, tailoring his work to meet the needs of diverse groups and organisations.

No cost to attend but please register on humanitix

Event Contact:

Leisa Cooke viaainc@gmail.com OR 0478 681 030

Values in Action Association Membership

To become a member prior please see membership link: https://events.humanitix.com/values-in-action-assn-membership-2025-26

For enquiries or information about membership, please contact the ViAA Memberships Secretary, Leisa Cooke: viaainc@gmail.com

Phone: 0478 681 030 | Email: viaainc@gmail.com
Website: http://www.viaa.org.au/
ABN:16 143 460 250 ACN: 617 860 009

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On behalf of Values in Action Association Inc.
(Mitch Casey, Leisa Cooke, Ricky Esterquest, Natalie Kurth, Jen Mouritz, Danielle Mason, Lisette Schulz, and Anita Speed)
www.viaa.org.au

Values in Action is a small unfunded incorporated association in Australia (Brisbane, Queensland). It hosts SRV and SRV-related events as well as working to develop SRV application and the emergence of next generation leaders.

23/09/2025

Communication has no limits. Let’s embrace inclusivity and raise awareness for International Sign Language Day! 💙👋

20/09/2025

💔 “I kept my daughter alive for four years – and the system let her die alone.”

Aussie mum’s fight against the NDIS ends in tragedy as daughter dies in hospital with no one by her side

“She died choking on vomit — in a mask — with no one there to help her. And it didn’t have to be this way.”

❌ 3 hours of care a week.
❌ 60 medications daily.
❌ Oxygen. Ventilators. Seizures.
❌ Government cutbacks.
❌ A mother left begging for help.

🕊️ Koa Gibson, 4, was terminally ill. She lived with a rare brain disorder — Lissencephaly — along with cerebral palsy, severe epilepsy, and early onset puberty. She needed full-time, high-level care. What she got from the NDIS was three hours of nursing a week. The rest? Her mother, Aleisha, did it alone.

Then, Aleisha got sick.

And just days after Koa was placed in hospital care — she died. Alone. Choking. In a mask filled with vomit. She was just four years old.

“The NDIS knew she wouldn’t survive winter — and they did nothing.”

Aleisha begged the NDIS to release the rest of Koa’s care funds.
She had letters from over 20 doctors and specialists.
She wrote emails saying she was on the edge — even told them she wanted to die.

The response?

Nothing.

➡️ The NDIS switched Koa’s care to 3-month "funding blocks".
➡️ They ignored medical letters and re-evaluated her like a healthy toddler.
➡️ They gave no backup when her mother — the only full-time carer — got sick.

“If my child wasn’t sick enough to get 24/7 care, whose child is?”

Koa’s body doubled in size in 3 months.
She was on oxygen 24/7, a ventilator, and had seizures lasting hours.
She needed suctioning equipment to survive vomiting — a known risk.

That care wasn’t there when she needed it most.

And now, she’s gone.

A Broken System, A Mother’s Rage

Aleisha isn’t staying silent.

🗣️ “She was always going to die. But she didn’t have to die like that. She didn’t have to die alone.”
🗣️ “I was her nurse, her ICU team, her lifeline. But when I got sick, the system left her to die.”
🗣️ “I want accountability. For my daughter. For every other child like her.”

📣 It’s time we LISTEN to disabled Australians and their families.
📣 It’s time we put people before paperwork.
📣 It’s time to FIX the NDIS.


https://www.dailymail.co.uk/news/article-15087267/koa-gibson-ndis-geelong-victoria-lissencephaly.html

08/09/2025

07/09/2025

📰 Government Media Release September 4, 2025
👩‍🏫 Expert-Led Committee for NDIS

🦘 A group of top educators and disability leaders in Australia is now a team.
🛠️ They will work to make sure NDIS users get the best help.
📚 The team is called the NDIS Evidence Advisory Committee (EAC).
👩‍🎓 Associate Professor Jill Duncan is the leader.
🏆 She has worked hard for people with disabilities.

👥 Most team members have disabilities too.
👩‍🎓 Associate Professor Jill Duncan (Chair)
👨‍🏫 Professor Angus Buchanan
👩‍⚕️ Melanie Eagle
🏅 Matthew Formston
👩‍🏫 Professor Tammy Hoffman
👩‍🔬 Dr Robyn Mildon
👨‍💼 Andrew Moffat
👩‍💼 Mary Sayers
👩‍💻 Clare Gibellini

🗣️ The team will give advice to the government.
💡 They will talk about therapies and helpful tools.

📅 In late 2025, people can share their thoughts on supports.
📊 The team will look at research and community ideas.
💰 The government will spend $45.5 million on this team.

🔧 Three smaller teams will help:
🔌 Assistive Technology & Capital: Dr Lisa Chaffey, Professor Alistair McEwan
🧠 Capacity Building & Therapies: Dr Walid Jammal, Professor Yasmine Probst
💰 Economics: Professor Liliana Bulfone, Professor Rob Carter

🌐 More info is on the Department of Health, Disability and Ageing website.

🗨️ Quotes from Senator Jenny McAllister made Easy
"👩‍💼 We want the best help for people with disabilities."
"😊 I am happy Professor Duncan is leading the team."
"💸 We want NDIS money to be spent well."

🗨️ Quotes from Professor Jill Duncan made Easy
"🙏 I am honoured to lead the NDIS Evidence Advisory Committee."
"📚 I want NDIS decisions to be based on good evidence."
"🤝 I look forward to working with experts and people with disabilities."
"⚖️ We will make the NDIS fair and helpful."

⚠️ Make it easy can make mistakes. Check important info

Hard words:
📚 EAC - Evidence Advisory Committee, a group that gives advice based on research.
EasySnap with NDIS National Disability Insurance Scheme Jenny McAllister

18/08/2025

One-Day Workshop for Families and Support Teams

This workshop is designed especially for parents, families, support workers, teachers, therapists, and anyone who helps someone communicate.

We’ll be using PODD communication books as examples throughout the day, but the strategies and principles we’ll explore apply to all types of Augmentative and Alternative Communication (AAC) — whether that’s another type of communication book, a speech-generating device, or a mix of systems. So even if PODD isn’t the system you use, you’ll still take away practical ideas and approaches that you can use straight away.

You’ll learn how to support two-way conversations, build confidence in everyday communication, and create more opportunities for the person you support to express themselves. The day will include hands-on practice, real examples, and plenty of time for questions.

What we’ll cover:

What is AAC?
Understanding different ways people communicate, including signs, books, and devices.

Using PODD as an example
How PODD is set up and what makes it unique — with lessons you can apply to any AAC system.

Why so many words?
The value of rich vocabulary for real conversations.

Paper and devices
Why both can be important and how they work together.

Speech and development
How AAC supports speech and language growth.

For children and adults
How these approaches work across all ages and stages.

Everyday communication
Practical tips for making communication part of daily routines and activities.

About the Presenter – Harriet Korner

Harriet Korner is a certified PODD Presenter and an experienced speech pathology consultant in private practice. She has worked extensively with children and adults who have complex communication needs, always taking an aided language approach to support people with physical, sensory, and cognitive challenges.

Harriet brings both deep professional knowledge and a practical, family-focused perspective, making this workshop both informative and directly relevant for families and support teams.

Register here - https://events.humanitix.com/communication-partner-workshop

12/08/2025

🧠 Want to learn more about CACNA1A-related disorders from one of the clinicians leading the development of clinical care guidelines for our community?

🔊In Episode 23 of Rare Awareness Radio, Dr. Kristin Baranano of Johns Hopkins Kennedy Krieger Institute talks about the latest developments in research and clinical care.

🧬 CACNA1A-related disorders are a complex group of rare neurological conditions that impact both children and adults, causing symptoms like epilepsy, ataxia, and developmental delays.

🎙️ From diagnosis and genetic counseling to groundbreaking research and family support, this conversation highlights why early awareness and a multidisciplinary approach are critical.

🔗 Listen today by visiting: https://linktr.ee/cacna1a

Looking to learn more? Visit www.cacna1a.org

📲 Save and share this to raise awareness and support CACNA1A families.

12/08/2025

🌟 ATTENTION! We have two BIG online workshops about self-management and support workers on Thursday 28 August. BIG DAY!
🤝 The first one is about finding support workers and giving yourself the best chance of building a support team that works for you and the person you care for.

📝 The second is packed with self-management tip and tricks, and ways to make the most of your NDIS plan. You might be self-managing now (and drowning in paperwork!) or thinking about self-managing.

💻 Both sessions are online via Zoom.

1️⃣ Morning: 👥 ‘Your Team Your Way’ for parents and carers needing help finding, hiring and briefing support workers.

🕢9:30am – 11:30am (SA Time)

💡 Some of the MANY things you will learn:

1. 🧠 How to know what you want from a worker

2. 🔍 How to find and choose from the right people

3. 💼 How to engage, pay, employ and contract them

2️⃣ Afternoon: 📃 ‘Self-Management’

🕧12:30pm – 2:30pm (SA Time)

💡 Some of the big takeaways:

1. ⚖️ The pros and cons of self-management

2. 📃 About your responsibilities as a self-manager

3. ✅ Tips for making payment requests, record keeping and managing mistakes

💰 Cost: $168.90 each (you can choose the best fit line item/support category for your invoice)

📩 You can send the invoice to your plan manager for payment or reimbursement, or claim as a self-manager if it is in line with your plan.

📂 You’ll get our Resource Kit with helpful tools to start using straight away, a copy of the slides, the video recording and auto transcription.

🔗 For more info and to book, visit: www.thegrowingspace.com.au/events

Pic desc: An illustration of a person sitting on a sofa chair with their laptop on their lap. They are in a green shirt and red pants with white stars on them. A white thought bubble floats to the right of their head with the purple ‘I 💚 ndis logo' in it and a purple and orange 'The Growing Space' logo under that. The illustration is on a light purple background with the words ‘Your Team Your Way’ at the top and ‘Self-Management’ at the bottom.

07/08/2025

🐾💙 Genes aren’t just for humans…but these pups are rocking bandanas to raise awareness for kids with genetic conditions! 🧬

They may not know what DNA is, but they do know how to strike a pose for a good cause. Support day and help life-changing research, because every child deserves a bright future

02/08/2025

👖 Jeans for Genes Day – Thursday 7th August 💙

On this day, Aussies across the country wear denim to support Jeans for Genes Day, raising awareness and vital funds for Children’s Medical Research Institute. The money goes toward life-changing research into genetic disorders affecting 1 in 20 kids.

Every pair of jeans makes a difference—so get your denim ready and help fund the future of Aussie kids! 👖✨

01/08/2025

August is Spinal Muscular Atrophy (SMA) Awareness Month - a time to honour the strength of the SMA community & raise awareness about this rare genetic condition! We stand with the SMA community this August & always. Every voice matters. Every voice counts 💜