05/01/2026
So it is Soapbox time....
Most time when I want to stand up on my soapbox I stand back down. Tonight I am standing back up. Wonderful families I feel your frustration at the following words "It is an every day expense"
Dear NDIS and all others....
Welcome to the world of disability and complex needs. In this world some of what other people view as wants, are actually our needs. What may be an everyday expense for some is far beyond that for many.
So where do we start....
Visual schedules - No, these are not diaries, they are not planners and they are NOT an every day expense. They are the things that help with the executive functioning of going to school in the morning and remembering that your socks go on before your shoes. Getting told this is an every day expense or this is a diary can be hurtful and rejects our needs as not being important or valid.
Noise reduction headphones - when did these become an everyday expense? I understand people may wear them on job sites but when did it become classed as an every day expense that a 6, 8 or 12 year old cannot use their funding for it as they are now an every day item? Imagine going into a room and feeling like 30 people are all yelling at you and the person speaking quietly in the corner is the one we need to listen to. This is the reality for so many that need these. We are not asking for them to look trendy and look like we work on a building site, it is to be able to hear, breathe and feel safer in a loud and unpredictable world.
Chewlery - When did this stop being a disability related item? A regulation tool that can assist with oral needs, can reduce self harm with biting the inner of the mouth and keep clothes from being bitten apart can no longer be purchased. However, if you provide a letter which costs over $200 at times from funding for a $10 item you may be able to purchase one, may. When our funding budgets are so low how is this a good idea
iPads - Well as much as so many people believe an iPad is not an every day expense for all. Especially those who need one for their voice. Did you know some apps can only be used on an iPad and no we cannot buy the smallest memory one as photos and customising to suit our language takes a lot of memory. How much money would you put on having a voice? $500? $2000? I can tell you I value mine (when it is working!) at much more than $2000 and I am sure you do too. A non-verbal does not want an iPad they NEED a way to communicate and therefore if they communicate with an app this iPad is no longer a want.
These are just some of the items recently that families have not been able to receive, even if their budget contains the money for it and even if they have a recommendation. It is sad. It is also so so hurtful for many at times.
Yes there are some that will say to families, well just buy it yourself. Well yes sometimes they can, but when a system was built to assist our young (and older) people in being able to access and engage with the community, jobs, schooling and all aspects of life like our peers how does this seem fair?
How can a parent save for an iPad when for the last 8 years they have not been able to work as school could ring at any minute telling you to pick up your child as they had a meltdown, why did they have a meltdown? Well maybe it was too loud and you couldn't yet afford headphones, or someone forgot to follow their individual plan, 2 very common reasons.
How can a young person afford the visual scheduling system, whether it be digital or printed when they are on a pension and only get limited money each week, maybe this then means the $40 a week they can use for social activities they cannot use for 10 or so weeks leading to greater social isolation.
How can someone who is incontinent need to 'prove' how incontinent they are to be able to access the aids they need.
Let's face it the list could go on and on.
Now as well parents, or therapists are having to gamble on purchasing the needed items and hoping that maybe they will be lucky and may be reimbursed. Our families cannot afford this, and well neither can our therapists, we do what we can, but believe it or not we are not all loaded! But we do it and we HOPE that others can see what we do and realise the item is a need and not just an every day expense.
I know I am not alone. I hear your voices. I see your frustration. I am frustrated too.
I hope that one day this is heard, until then stay strong and we will keep fighting the fight. Just know as much as it feels like you are standing there all alone, there are some of us by your side cheering you on and hoping that together our voices will be heard.
