HONO Community Services

HONO Community Services • Specialist Support Coordination ✨️
• Children & Young People Experts 👦👧
• Complex Support Needs 🫂
• Rare Diseases 🧬
• Australia Wide 🇦🇺

💜 ⭐️🤍CHILDHOOD DEMENTIA DAY 🤍⭐️💜Today is Childhood Dementia Day - a day to raise awareness of the more than 140 differe...
23/09/2026

💜 ⭐️🤍CHILDHOOD DEMENTIA DAY 🤍⭐️💜

Today is Childhood Dementia Day - a day to raise awareness of the more than 140 different diagnoses that can cause childhood dementia, many of which are rare genetic conditions.

Batten disease. Sanfilippo syndrome.
Rett syndrome. Hunter syndrome. Cockayne syndrome. MECP2.

And so many others.

At HONO Community Services, we know that behind every diagnosis is a child, a family and a journey that is uniquely their own.

We feel incredibly privileged to be invited into the lives of families navigating these diagnoses. To be trusted to walk alongside them, to listen, to help navigate the NDIS and broader service systems, and to work collectively with the people around each child to help create the best possible support.

It is a privilege we never take for granted. ❤️

To the families who allow us to be part of your journey - thank you for trusting us. We see the incredible strength, love and dedication that sits behind the scenes, and we are honoured to stand alongside you.

Today is about making sure these children and their families are seen, understood and supported.
And if you've stumbled across this post and haven't heard about the NDIS Priority Pathways for childhood dementia, please reach out. 💜

We would be very happy to help you understand what they are and gain access to one of the most incredible pathways to come out of the NDIS. 🦄🤍🌻

Rare doesn't mean invisible. Every child deserves the right support, at the right time. 💜

✨️ Cru du chat Syndrome ✨️Some stories stay with you long after the meeting ends.At HONO, we specialise in supporting ch...
21/07/2026

✨️ Cru du chat Syndrome ✨️

Some stories stay with you long after the meeting ends.

At HONO, we specialise in supporting children with complex disabilities and rare genetic conditions. Every family's journey is different, but one thing we see time and time again is the extraordinary strength of parents who refuse to stop fighting for their child.

Imagine knowing in your heart that something isn't right, yet hearing, "Let's wait and see."

For one family we support, those instincts began in the very first days of their son's life. Feeding wasn't right. He wasn't gaining weight. There were subtle signs that something more was happening. They kept asking questions. They kept advocating. They trusted their instincts, even when the answers weren't immediately there.

Eventually, their son Sonny was diagnosed with Cri du Chat syndrome, a rare genetic condition that would change the course of their lives forever.

No parent hopes for a diagnosis like this. But having answers meant they could stop wondering and start accessing the therapies, specialists and supports their little boy needed.

Today, he is a happy, affectionate little boy with the sweetest smile and the cutest dimples. He brings immeasurable joy to his family, but behind every smile is a reality many people never see – countless appointments, therapies, hospital admissions, sleepless nights and a mother who never stops advocating for him.

Families living with rare conditions don't need pity. They need to be heard. They need to be believed. And they need access to the right supports without having to fight every step of the way.

If you're a parent and you feel something isn't right, trust that feeling. You know your child better than anyone else. Keep asking questions. Keep advocating. Your voice could change your child's future.

Behind every rare diagnosis is a family whose life has changed forever. By listening to parents, believing their concerns and acting early, we can help ensure children and their families receive the support they need when it matters most.

💙 Because awareness leads to earlier intervention.
💙 Earlier intervention creates opportunities.
💙 And every child deserves the best

💜 TRUST YOUR INSTINCTS. SPEAK UP. KNOW RYAN'S RULE. 💜 QLD 💜When someone you love is in hospital, you know them best.If t...
26/06/2026

💜 TRUST YOUR INSTINCTS. SPEAK UP. KNOW RYAN'S RULE. 💜 QLD 💜

When someone you love is in hospital, you know them best.

If their condition is getting worse, they're not improving as expected, or something simply doesn't feel right, don't ignore your concerns.

Ryan's Rule was introduced following the tragic death of three-year-old Ryan Saunders after his parents felt their concerns about his deteriorating condition were not acted on in time. Today, it provides patients, families and carers with a clear process to escalate concerns and request further review when they feel they are not being heard.

The 3 simple steps are:

🗣️ Step 1: TALK
Talk to a nurse, midwife or doctor about your concerns.

🙋 Step 2: ASK
If you're still worried, ask to speak with the nurse in charge of the shift or the doctor on duty.

📞 Step 3: CALL
If you remain concerned, call 13 HEALTH on 13 43 25 84 and request a Ryan's Rule Clinical Review.

You do not need to be a medical expert to speak up. Families and carers often notice subtle changes before anyone else. Your voice matters, and advocating for your loved one could make all the difference.

⚠️ Ryan's Rule is not for general complaints. It is specifically for situations where a patient's condition is worsening or not improving as expected.

At HONO Community Services, we encourage every family, carer and support person to know their rights and feel empowered to advocate for safe, timely healthcare.

For more information about Ryan's Rule, visit:
🌐 https://www.qld.gov.au/health/support/shared-decision-making/ryans-rule

DisabilityAdvocacy SpeakUp PatientRights QueenslandHealth HONOCommunityServices

💙 TRUST YOUR INSTINCTS. SPEAK UP. RAISE IT. 💙When someone you love is in hospital, you know them best.If you notice chan...
26/06/2026

💙 TRUST YOUR INSTINCTS. SPEAK UP. RAISE IT. 💙

When someone you love is in hospital, you know them best.

If you notice changes in how they are looking, breathing, talking, acting, or if something simply doesn't feel right, don't ignore that feeling.

NSW Health's Raise It process empowers patients, families and carers to escalate concerns quickly if they believe a person's condition is getting worse.

The 3 simple steps are:

🗣️ 1. TALK
Speak to a nurse, midwife, doctor or health worker about your concerns.

🙋 2. ASK
Still worried? Ask for a Clinical Review by a senior clinician.

📞 3. CALL
If you remain concerned, call the NSW Health Raise It line on 1800 777 333.

You do not need medical knowledge to speak up. You do not need to be certain that something is wrong. Your concerns matter, and early action can save lives.

At HONO Community Services, we believe families and carers should feel empowered to advocate for themselves and their loved ones, especially during vulnerable times.

For more information about the Raise It process, visit:
🌐 https://www.health.nsw.gov.au/RaiseIt

DisabilityAdvocacy HONOCommunityServices SpeakUp PatientRights HospitalSafety HealthAdvocacy

Some of the most meaningful moments are not the big milestones… they’re the quiet, everyday moments of connection. 🤍A sm...
22/05/2026

Some of the most meaningful moments are not the big milestones… they’re the quiet, everyday moments of connection. 🤍

A smile.
A glance.
A shared laugh.

A moment where the world feels calm, safe and full of love.

For families raising children with complex disabilities, rare diseases, or additional needs, life can often feel consumed by appointments, therapies, advocacy and survival mode. But within all of that, there are still these beautiful little glimpses of hope, joy and contentment.

And those moments matter.

They remind us that our children are not defined by diagnoses, challenges or medical complexities. They are children first, deserving of love, connection, belonging and happiness just like everyone else.

Sometimes the most powerful memories are created in the simplest moments. ✨

MomentsThatMatter HONOCommunityServices LoveWithoutLimits

Angelman Syndrome is more than a diagnosis. 💙Children and young people living with Angelman Syndrome each have their own...
19/05/2026

Angelman Syndrome is more than a diagnosis. 💙

Children and young people living with Angelman Syndrome each have their own personalities, strengths, communication styles and ways of experiencing the world. While the journey can involve complex medical, behavioural and developmental challenges, it can also be filled with incredible joy, resilience and connection.

At HONO Community Services, we believe inclusion is not about creating a separate world for children with disabilities, it is about ensuring they are supported to access the same opportunities, experiences and community spaces as everyone else.

Families navigating rare diseases and complex support needs deserve informed, compassionate and collaborative support.

These slides aim to raise awareness, increase understanding and advocate for a more inclusive community for individuals living with Angelman Syndrome and their families. ✨

PaediatricDisability NDIS SupportCoordination HONOCommunityServices RareDiseaseSupport InclusiveCommunities

Some of the most meaningful moments of inclusion are not created in therapy rooms or “special” programs… they happen in ...
14/05/2026

Some of the most meaningful moments of inclusion are not created in therapy rooms or “special” programs… they happen in everyday community life. 🌾

At HONO, we believe true inclusion is not about building separate worlds for people with disabilities, it’s about ensuring the world we already share is accessible, welcoming and open to everyone.

Inclusion looks like being invited onto the tractor.
It looks like being part of the experience, not watching from the sidelines.

It looks like communities, families and businesses making space for children and young people with additional needs to participate in ordinary, meaningful moments alongside everyone else.

We don’t strive for segregation disguised as support.

We strive for one community. One world. Together.

Because every child deserves the opportunity to belong, contribute, explore and be seen beyond their diagnosis. 💛

InclusiveCommunities PaediatricDisabilitySupport

Childhood dementia is real.It is progressive.And far too few people know it exists.Caused by over 100 rare genetic condi...
27/04/2026

Childhood dementia is real.
It is progressive.
And far too few people know it exists.

Caused by over 100 rare genetic conditions, childhood dementia affects children from infancy through adolescence, slowly taking away skills many of us take for granted like walking, talking, learning, remembering and communicating.

In Australia:
• 1 in every 2,900 babies is born with a condition that causes childhood dementia
• Around 91 children die from childhood dementia each year, comparable to childhood cancer statistics
• Half of all children diagnosed will pass away before the age of 10

These children and families deserve awareness, research, support and hope.

Please take a moment to learn, share and help shine a light on a condition that remains deeply under-recognised. 🤍

SupportFamilies InvisibleDisability PaediatricCare RaiseAwareness Australia

Day to day it seems like nothing changes, but when you look back everything has changed 👏Its the small wins that eventua...
13/04/2026

Day to day it seems like nothing changes, but when you look back everything has changed 👏

Its the small wins that eventually lead to the large gains.

Callum had an absolutely wonderful day exploring the Hunter Valley Gardens, and we couldn’t be prouder of how far he’s come 💛

From the moment they arrived, he couldn’t stop talking- excitedly pointing out all the dinosaurs he wanted to see and sharing in the experience with so much enthusiasm. It was amazing to see him so engaged and expressive in a new environment.

Some really special highlights from the day:
✨ Building his capacity to safely access the community in a new setting
✨ Waiting patiently for his turn to touch the dinosaurs
✨ Experiencing a fun, mainstream activity with confidence and joy
✨ Communicating more- talking, pointing, and sharing his excitement

A big moment for both Mum and Dad, who were so happy to see Callum participating in something like this and enjoying it so much. While supports were in place, it’s a huge step forward from needing meticulous planning just to access the community - now we’re seeing genuine engagement and positive experiences in new spaces.

Days like this remind us just how important these opportunities are- for growth, connection, and joy.

Well done, Callum 🙌

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