Capability and Culture of the NDIA
Submission 56
SUBMISSION IN RESPONSE TO NDIS FEEDBACK
I am a mother and carer of 4 children. My eldest 2 have confirmed diagnoses and are receiving NDIS supports. My youngest likely share similar diagnoses but I have yet to begin the formal assessment process.
My children have diagnoses of and above level intelligence likely gifted in specific areas.
There needs to be a means that enable people with financial limitations to gain access to the NDIS. Currently there are children who are unable to receive support as their parents can’t afford to gain the level of reports that the NDIS requires to be submitted. Ironically those of higher income are likely to be able to get financial support for children with disabilities.
Separation of Life and Education is arbitrary and unrealistic. You can not live a functional life, let alone your best life with out a quality or at least basic education.
Schools are not set up to educate children with different needs. At best they are often a baby-sitting tool so the parents can continue to work. Funding isn’t utilised by the school for the eligible child, but rather where the school requires it. While I am glad that many children are gaining support from this, it is not the intended function of the financial aid. The school should be capable of meeting the needs of all children unless they are deemed needing extra requirements and funding.
What is occurring is that parents of children with additional needs are moving to home schooling. They are giving up an income to ensure that their child does not. They are giving up an income to do a job that the government failed to do. And they are putting themselves in a financial position which makes it difficult to meet NDIS ‘parental responsibility’ when it incurs a financial cost.
Further issues are caused by the bureaucracy of the NDIS to ensure no one gets anything fun. More money is spent on preventing people from obtaining goods than would be lost from misuse of the system.
Something relevant to us is the funding of an iPad. My older children use their iPad for everything.
They use them to access mainstream activities such as Outschool and other online workshops. They use them to game with friends online, thus connecting in a meaningful way that their anxiety will allow. They use them to regulate by playing certain games on the
Capability and Culture of the NDIA
Submission 56
way to appointments that stress them out. They use them while they are waiting at sibling appointments. To keep calm and conducive to the environment. Due to my children’s age everything requires parental support, I don’t get funding for support workers. So, all 4 children go to every appointment, and I need to keep 3 children contained in a waiting room.
They also use them for education. They are very smart but can’t write. This doesn’t mean they can’t learn. A laptop is too distracting. There are to many buttons and functions. They are also fragile. We have had one broken and many things important deleted. Assistive software is expensive and unfamiliar. Their iPads are comfortable, familiar and durable (with a heavy-duty case). They can use the inbuilt functions of this MAINSTREAM product to do speech to text, text to speech, utilise predictive text and ask Siri for spelling assistance. They are able to compose whole stories, do amazing digital art and many other things they otherwise couldn’t do.
I was privileged enough to be able to afford iPads 4 years ago. I worked 4 years ago. Now I provide a government function for free (I home school). Their iPads have aged out. Their education is suffering. We have cancelled all of term 4 MAINSTREAM activities. We will stay home this holiday and not engage with the community. There may be free events, but petrol and snack foods are expensive. This will dysregulate them. We will likely spend as much or more on additional psychology and OT to get through this period. Money we wouldn’t need to spend if we could use our funding for an iPad.
To reiterate, our life could continue calm and seamlessly if I could spend funds on an iPad. But now I am going to have a stressful few months were education will suffer and I will spend the same amount or more of their funds to cope with. We will be worse off short term. But it is needed for the long-term gain.
If NDIS offered basic low packages with greater flexibility and less need for constant reports. That would be sufficient for us. If I could actually get what we NEED not what we are allowed, it would cost less. And we would so much more benefited by it.