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Submission SUB-C4C9-002126 (Anonymous)

Submission reference
Submission type
General submission
What are your three main problems or concerns with the NDIS?

The difficulty with being able to find the exactly right support for the child within the context of their family. Too much ‘individualised’ focus instead of looking at the whole child including parents, siblings, school, community. This needs to be way more flexible for families.
The complexity of the system, even for people with great capacity, is a huge barrier.
Having to provide evidence of an outcome, which places too much focus (and resource) on ‘therapists’ who charge huge fees and often don’t really achieve noticeable outcomes for the child (probably because other contributing factors haven’t been considered or supported. For example, if a mother has 3 Autistic children and can’t cut a break to clean her home or cook meals because she’s continuously attending to her children’s needs PAY FOR HER BLOODY CLEANER AND A COOK! This helps the whole family ‘survive’ and have more time for caring for and playing with their child. This is more useful to the child than many therapies!
Too much money spent on reports! It’s a gold mine for therapists including psychologists, OT’s and Speechies.
Allow support to go into schools (not just allied health, but other support that SHOULD be funded by education departments), so more kids get to stay in school instead of being excluded and parents having the burden of home schooling.

How do these three main problems affect you and/or others?

Too much time spent trying to work out exactly what my child needs, finding a suitable service, sitting on wait lists, wanting to spend money on things that matter but not being allowed to.
I feel for families who are at breaking point, have money in their budget and can’t cut a bloody break. This is crazy. Give those families a break so they can be more present for their children.
Not enough support in schools meant exclusion and expulsion for my autistic child. Horrific experience which just adds to the trauma.

What do you think are possible solutions to those problems?

More flexibility on how money is spent so it is not just ‘therapeutic’ but focuses on the child’s functioning within their family unit. Happy parents, happier child.
Minimal reports to prove ‘evidence’ of disability or need. Just lining the pockets of therapists.
Allow parents more autonomy in determining what their child needs. If they need a bloody iPad, let them buy one! If their child needs a trampoline to regulate, let them buy one. Let common sense prevail and reduce the gap between those with resource and those without!
We need a much wider view of therapy to include somatic therapies, art and play therapy, music therapy, massage, sports, etc. These things can be way more beneficial for children and their families.
Allow supports to go into schools to remain with children so they have better access to education and social relationships.

What parts of the NDIS are working well for you?

Self managing- being able to make my own decisions about what I purchase. Quick reimbursement works well.
Having the option of accessing therapists (but restricted by availability and ‘type’ of therapist.
Social support costs a bomb because we use it on weekends and they charge in 3 hour blocks- so funds get used up too quickly. But social support option is great.

Is there anything else that you would like to tell the NDIS Review?

More flexibility to allow families to have more influence / choice/ control over services that support their child in the context of the whole family. This should include parents and siblings and the impact on them.
Ensure the NDIS doesn’t cause more trauma to families who are already struggling.