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Submission SUB-Z9J5-000520 (Anonymous)

Submission reference
SUB-Z9J5-000520
Submission type
General submission
What are your three main problems or concerns with the NDIS?

1. I never know what evaluation criteria are used to determine the level of funding, whether the reports I submit are adequate and how the amount of funding is determined. Currently, I submit progress reports/recommendations, they are reviewed, I wait, I am told the amount of funding. The wait is nerve-wracking too, as I don't know what we're being evaluated against and if the future 12 months will be hard or not to get the support I need for my son. I am tired. I don't have the energy to even contemplate an appeal if I thought it would result in a better outcome. I would rather do it once and do it well.

2. Our NDIS coordinator is part of the 'early childhood approach' - I'm not quite sure what that means but it seems that my son is only eligible for core therapy. For example, supports for him to engage in community activities (which usually cost more than usual) or transport services so I could work more, are not covered by funding. I mention we don't have a support system of family and friends, but this is 'noted' during the discussion and nothing ever comes from it.

3. Lack of understanding of complex issues and red tape - my son is non-verbal and the AAC device purchased for my son used the 'Consumables' budget in the NDIS plan rather than applying for separate funding. We did it this way because I was told this "was easier with the NDIS" and it would take longer to get a device if applied for separately (good advice given by the NDIS coordinator at the time). Considering my son is autistic and non-verbal, this approval should be simple to achieve. I am not trying to get an iPad that I then have to cart around. I want the NDIS to be well-versed in different conditions and not have to 'fight' for every little thing, especially things that are urgently needed.

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

1. We have been lucky, we've had reasonable funding amounts and support compared to others. However, it can be stressful knowing that the next 12 months of my son's future relies on a 1-2 hour conversation that isn't entirely transparent. My husband and I are highly educated and I can see where justifications need to happen for funding to be granted, but I could see how others may not have worked for a government 'client' before and don't know what they need to provide. The whole review process doesn't seem transparent (almost secretive) and then someone comes along and pulls a magic number out of a hat!

2. It seems that other supports are not really valued besides mainstream therapies. I understand it's likely easier to justify the cost of mainstream therapy, however being able to attend a one-on-one supported bushwalk with a sibling, rather than sitting in a clinician's room for one hour each week, is likely more effective in getting my son to follow instructions, explore the world with his peers, experiencing new environments confidently - all part of his "NDIS goals", yet this is not covered by his NDIS plan. It seems the setting/environment where the therapy takes place is more important than the outcome. This 'gap' in supports has affected his independence and confidence being in the world, but especially his relationship with his sister - it's very difficult to find activities they can do together, and the ones I have found, require one-on-one support (as is needed for my son) yet cost too much for us to fund privately.

Also, I have reduced my hours in 2023 by two-thirds (in a well-paying, valued role) as one parent needs to pick up/drop-off for a specialist school. If I had more support for transport, I could have kept my hours or at least not reduced them as much.

3. This method of obtaining a device reduced the overall funding amount for Consumables for that year. I felt my son's condition was an annoyance (i.e. why would I need a device to communicate with him?), rather than something obviously very needed.

What do you think are possible solutions to those problems?

1. More transparency, tell me what I we are being evaluated against so we can really show why these supports/amount of funding is needed. Work together for better outcomes rather than me trying to get funds and the NDIS seeming to want to restrict the amount.

2. Value non-mainstream supports as well. A lot of the non-mainstream supports we have privately funded have provided my son with enough sensory regulation such that he can focus on his mainstream supports like speech and occupational therapy.

3. Well-trained reviewers who understand the condition and the supports needed. Perhaps people with lived experience could co-consult in the NDIS reviews? It would make more sense as I wouldn't have to explain my son's condition and why he needs the same things each year - yes, we make progress but it takes time! Overall, make the processes simpler and easier to achieve, so we can just get on with it!

What parts of the NDIS are working well for you?

The NDIS coordinators - we've had some great ones who know the ins and outs of the NDIS review process and are well-versed or at least understanding of my son's conditions and his needs.