NDIS

Ndis

What is NDIS?

The National Disability Insurance Scheme is the new way of providing individualised support for eligible people with permanent and significant disability, their families and carers. The NDIS is the insurance that gives us all peace of mind. Disability could affect anyone - having the right support makes a big difference.

The NDIS started in Queensland from 1 July 2016 and will be fully implemented by 1 July 2019 with around 97,000 Queenslanders eligible to receive support through the scheme.

Under the NDIS, people with a disability will have choice and control over their disability supports, including choosing who and how these supports are provided and managed. People who meet eligibility criteria will be able to access all reasonable and necessary disability supports, as agreed in their individual plans to live independently in the community and to work towards achieving their goals and aspirations over their lifetime.

Please visit ndis.gov.au to download brochures and booklets, fact sheets and general guides on how to prepare and plan your future. There will also be up to date information about the scheme, plus information on providers who are registered to deliver supports or products in alignment with your plan enabling you to reach your goals of what a good life looks like for you.

Alternatively, feel free to contact us and let us step you through the process.

Fundraising Appeals

Hello, I'm Ruby's Quest

“Ruby is an amazing little girl with such a beautiful shining personality that makes everyone who meets her fall in love with her, she is an inspiration and inspires me everyday with her courage, determination and love.” By her mummy Tanya Hello my name is Ruby or ‘The Rubsta’ I ha...

Read my story

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\n

As Sunshine Butterflies receives no government funding and exists only through the kind generosity of community members such as yourself, all fundraising\n efforts are greatly appreciated. By supporting this vision to improve the lives of individuals and their families living with a disability, you\n are making a huge difference to many lives suffering tough times.\n
\n

\n

There are many FUN and CREATIVE ways you, your school or workplace can fundraise for Sunshine Butterflies.

\n

We would love to hear from you, so please contact us today and we can have a chat about your idea or help you\n get started to fundraise for a great cause.\n
\n

\n

Not matter how great or small... Every donation helps Sunshine Butterflies to provide an enhanced quality of life and opportunities for individuals\n and families living with a disability.\n
\n

\n

\n
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\n

As Sunshine Butterflies receives no government funding and exists only through the kind generosity of community members such as yourself, all fundraising\n efforts are greatly appreciated. By supporting this vision to improve the lives of individuals and their families living with a disability, you\n are making a huge difference to many lives suffering tough times.\n
\n

\n

There are many FUN and CREATIVE ways you, your school or workplace can fundraise for Sunshine Butterflies.

\n

We would love to hear from you, so please contact us today and we can have a chat about your idea or help you\n get started to fundraise for a great cause.\n
\n

\n

Not matter how great or small... Every donation helps Sunshine Butterflies to provide an enhanced quality of life and opportunities for individuals\n and families living with a disability.\n
\n

\n

\n
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Donate to Sunshine Butterflies Donate Now

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ABN: 46 296 442 336 | \r\nNDIS provider registration Number: 405 000 9184

\r\n\t\t\t\t\t\t\r\n\t\t\t\t\t\t\r\n\t\t\t\t\t\t© { {globals.site.dateNow | date: \"yyyy\"}} Sunshine Butterflies | Privacy

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\n

“Ruby is an amazing little girl with such a beautiful shining personality that makes everyone who meets her fall in love with her, she is an inspiration and inspires me everyday with her courage, determination and love.” By her mummy Tanya\n

\n

Hello my name is Ruby or ‘The Rubsta’ I have the rare genetic disease called Prader-Willi syndrome.

\n

In short this means I have a low immune system, low to no metabolism and low muscle tone which delays me in all areas of gross motor skills – including\n bad stuttering when I am tired or sick. However the most disturbing part of my syndrome is the hunger that NEVER STOPS.

\n

Though I am on GH injections to help my muscles to grow – in theory giving me more energy to exercise which in turn helps prevent weight gain. Unfortunately\n due to my repertory issues I did not start GH treatment until I was 4 so I am already what most would call ‘obese’ – and get stared at in disgust\n accordingly – with very mean judgmental looks at my mumma too!

\n

What people don’t realize is that even just eating lettuce and water due to me missing the male chromosome 15 in my body – as instead I have 2 female\n chrome 15s. Because of this my body tells itself that it is hungry 24/7 - for the rest of my life! There is NO ‘switch’ to say I am full and make\n me stop being hungry. If left alone in an area where there is food, I will without thinking eat everything I can get my hands on until my stomach\n literally BURSTS and then I could die – if I don’t die of a heart attack first – so healthy eating, eating management and lots of exercise is the\n only thing that will save my life and of course a family that loves me very much and watch my every move. I could eat 9 raw cabbages and once finished\n still think I am hungry. This is not my fault and unfortunately I will get obese and have many health issues because of it.

\n

I am now 5yrs old, can walk and talk which ‘the Doctors’ warned my parents that – if at all I may not walk or talk till I am 5-6 – so we proved them\n wrong and I took my first steps at 31/2 and was talking at the same pace! J

\n

Though we have reached and conquered many amazing milestones, my hunger is getting stronger and stronger, whenever I see, hear about or smell food\n – I want to eat it, but truly believe and feel that I am starving even if I have just finished a full meal!

\n

Unfortunately our family home has a lovely open kitchen where as a family we have always used as the hub of our home as you have to walk thru the kitchen\n to get to any part of the house – my playroom included.

\n

This is rapidly becoming a serious danger and health risk for me and torment for my older sisters who are suffering because of my syndrome, but do\n without complaint as they love and care for me.

\n

Our goal this year is to help raise money to ‘HIDE’ our kitchen – make it into a magic ‘safe’ room, where all food, fluids, medicines, cleaning products\n etc. will be stored, cooked, displayed and kept safely away from all my senses so not to torment me or give me anxiety.

\n

For me personally it will mean that my dear older sisters would be able to get some of their ‘normality’ back – instead of having to spell food out\n to mumma when asking if they can eat (which I am now on to though don’t know what they are spelling I know why they are doing it and automatically\n say ‘Me too’) or to simply have friends back over to stay – because if we built a hidden kitchen with only one door that has a coded lock that\n I will never be told but my sisters and rest of the family can have – means all temptation and tournament and anxiety is taken away from me and\n it gives my sisters a chance to go eat a ‘normal’ size portion of food, in private without spelling or running off to hide in their rooms trying\n to eat what ever it is as quickly as possible before I might see! It also means they can have their friends back to stay as they can eat normal\n food and treats that everyone grows up with and feel “NORMAL’ again.

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My sisters love me so much they are willing to move into the playroom and share a room and give up their individual rooms so that we can build our\n secret kitchen!

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I feel very honored that they love me so much especially coming into their teenage years where most people have their own space, as they get older!

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So there you have my crusade for the year to raise approx. $45k to be able to knock out a few walls and put up some special sold lockable ones in a\n ‘Hidden’ kitchen to save my life and help my family to be able to cope with what can only be described as intense job of keeping me away from food\n as I grow.

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And I can never be left on my own or be fully independent as I will literally eat or drink myself to death! (Even the bathroom has been modified so\n the water access can be turned off at night so that if I got out of my room (which will require a alarm system soon for night time to wake mumma\n if I get up) that way I cant turn the taps on and drink until my tummy bursts either)

\n

This is a horrible stupid disease that effects not only my immediate family but all my family and friends that still want to share in my life – has\n defiantly shown us that the road will be long and troubled and that the only people you have to rely on is your immediate family – which I am so\n lucky to have!

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A huge thanks to those who make a donation, your support is so greatly appreciated and will make a big difference to me and my family. I know mummy\n is forever grateful that my life will be made easier and my future will be looking more hopeful.

\n

I hope that you are having the most beautiful day and lots of cuddles from me!

\n

Love Ruby xx\n

\n

(Facebook page ‘Ruby’s Quest’ – please pop over & say ‘hi’, learn about PWS or just come and join my journey ‘thru life with a lil difference’\n J)

\n

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