Right now we have an outstanding consumables bill reaching almost ten thousand dollars ndis refuses to fund it Sammy Joe has Trichothiodystrophy and the ndis refuses to pay for most of his consumables which he requires on a daily basis things like hydralite wipes creams and his injections Panadol soluable items required for his daily living Buscapam and all other over Help Us Keep Sammy Joe Safe at Home

For 37 years, we have dedicated our lives to caring for our son, Sammy Joe. He is our world — and every single day, we fight to give him the safety, dignity, and love he deserves.

Sammy Joe lives with a rare and complex condition that has gradually taken away his independence. Where he once had some mobility, he is now fully dependent on others for every aspect of daily life. His needs are constant, high-level, and require round-the-clock care.

But despite everything, Sammy Joe’s wish is simple:

He wants to stay at home with his family.

And we are doing everything in our power to honour that.

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Why We Need Help

We are currently facing an overwhelming financial crisis.

The level of care Sammy Joe needs is not being fully funded, and we are being left to cover the gaps ourselves. This includes:

* High-level daily care and supervision

* Overnight support to keep him safe

* Essential supplies and care-related expenses

* Additional support workers required to meet his complex needs

We have exhausted our savings.

We have made personal sacrifices beyond what most could imagine.

We are now at a point where we simply cannot keep up.

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⚠️ What’s at Risk

Without urgent support, Sammy Joe’s ability to remain at home is at risk.

This is something we are fighting with everything we have to prevent.

His home is where he feels safe.

It’s where he is surrounded by love.

It’s where he belongs.

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How You Can Help

Any contribution, no matter how small, will go directly toward:

* Funding essential care supports

* Keeping trained support workers in place

* Ensuring Sammy Joe remains safe at home

If you are unable to donate, sharing this page means just as much to us.

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❤️ From Our Family to Yours

As parents, we have always done everything we can for our son — and we will never stop fighting for him.

But right now, we can’t do this alone.

Thank you for taking the time to read our story, for your kindness, and for helping us give Sammy Joe the life he deserves.

Maria & Joethe counter medications which cost us at least 1000 a week please help us again to pay Pharmarcy bill which Is over 5 thousand NDIS is refusing to accept the fact that all of his care needs should be adequately funded all of his medications come from having this disability there for should be paid for I am writing to formally lodge a complaint regarding the continued refusal to process and fund essential disability-related supports for Sammy-Joe Liistro.

These decisions are not administrative in nature — they are having a direct and serious impact on his safety, dignity, and ability to receive appropriate care within his home.

Sammy-Joe is a high-support participant who requires continuous assistance across all activities of daily living. The supports and items being declined are directly related to his disability and are necessary to maintain his wellbeing and prevent harm. They are not discretionary expenses.

The ongoing refusal to fund these supports is resulting in:

- Unsafe care conditions

- Increased risk of physical harm and health deterioration

- Excessive and unsustainable reliance on informal supports

- Risk of breakdown of in-home care arrangements

These outcomes raise serious concerns under the NDIS Act 2013, which requires that supports provided to participants are reasonable and necessary to enable them to live safely and with dignity.

Further, as this matter is being considered in the Administrative Review Tribunal, it is critical that interim decisions do not disadvantage Sammy-Joe or contribute to a decline in his condition or care environment while proceedings are ongoing.

I also draw your attention to the Charter of Human Rights and Responsibilities Act 2006, which protects the right to:

- Protection from degrading treatment

- Humane treatment when receiving care

- The right to life and personal safety

Decisions that result in inadequate or unsafe care environments may be inconsistent with these rights.

Additionally, there is a clear inequity in approach. If Sammy-Joe were residing in supported accommodation, these same supports would be funded as essential. Denying them in a home-based setting creates an unfair and discriminatory outcome.

I formally request:

1. An immediate review of all declined supports and items

2. Written justification for each decision, including the legislative or policy basis

3. Urgent interim measures to ensure his safety while ART proceedings are ongoing

4. Confirmation that disability-related supports will not be unreasonably withheld where risk is evident

If this matter is not resolved promptly, I will have no option but to escalate it further, including through formal complaint pathways and as part of the ongoing Tribunal proceedings.

This situation is serious and requires urgent attention.

I look forward to your response.

Kind regards,

Maria Carmela Liistro

Legal Guardian and Primary Carer

Sammy-Joe Liistro