Submission to the Inquiry into the
Terms of Reference
The committee will inquire into and report on the implementation, performance, governance, administration and expenditure of the National Disability Insurance Scheme (NDIS), with particular reference to:
e. the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment
f. the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency; and
g. any other relevant matters.
Implementation
When was under 7, there was a more personalised service. There was effort put into assisting parents to navigate the system. Specifically, the lady who managed our Helping Children With Autism (HCWA) funding (employed by Autism SA to manage funding). She got a job with ECANT and she managed our transition across to the NDIA - the transition was well informed and very smooth. We used remainder of HCWA funding before moving across. We never went without funding going from one service to the other. I also had a chance to use remainder of HCWA funding to get reports ready for NDIS – this resulted in Behaviour Support, AT trials, OT, and SP in the first year. We had guidance all the way through the transition and the lady who assisted was very flexible. E.g. extending timeframes for evidence to enable collection and ensure a good first plan, changing plan management type to enable access to non-registered providers. This was at roll out/in the early days of NDIS in the N.T. There were parent information sessions available - held by NDIA and various organisations. As a parent I was also allowed to attend the service provider session. With ECANT, we were contacted roughly every second month to check if the plan was going alright. They were proactive and kept us informed. E.g when moving office. The approach with ECANT was very person- centred.
We were transferred to when turned 7. During the transition, our information was sent to the wrong place, which was a breach of confidentiality. Then when rang, they were just ordering me what to do, not assistive or genuinely concerned. I effectively got threatened over the phone by that if I didn’t have evidence by a certain date, then they wouldn’t wait to do the review. There was no effort made to assist us to obtain the evidence or arrange a later date for the review meeting. The ‘person-centred’ approach with was not centred around it was centred around them. At the first review, I was being told what to do by the LAC, and her laptop wasn’t working so she said she would get back to me with the plan. Then she went on holiday and she started writing the plan when she was back. At this point I asked to see the draft to make sure it
-was accurate. I was told this was not possible, even though ECANT had been able to do it. With ECANT the same discussion went very differently. I was invited to come in and look at the information, and the plan wouldn’t be sent until that happened. She actually copied stuff I’d written onto it. Barely took 5 minutes. I was surprised that the transparency wasn’t immediately available but we were able to find a compromise. Transparency was available at ECANT but never has been at
The standards that are not being met by include: personalised, informed, transparent, informative. E.g. there was no orientation from to assist with the transition from the Early Childhood team to their service.
Performance So many different people have been assigned to us over 2 years at their names are on paperwork, but I’ve never spoken to them. If you’re not compliant with what they want you to do, it becomes an issue. They want to order you what to do. The focus goes off being person-centred and onto their business agenda. They are not helpful when responding to issues, they can’t personalise a response.
It would be useful if stopped boxing people into certain categories, if don’t fit into their box, it can’t process it. Then you get blanket response that doesn’t address the issue. Staff only talk from the point of view of NDIS, they don’t understand the history of services before then and the governing legislation that NDIS is supposed to fit into. It makes you feel like you’re being given incorrect information all the time. It can even feel like NDIS are trying to minimise the rights of the person with a disability. Their business agenda is creeping in way too much and hindering the possibility of a truly person-centred approach.
The design of the scheme means that Service Providers benefit more than participants.
Governance Service providers don’t seem to be getting audited on things like service standards – it’s not being included in governance procedures. The service standards are not even part of company procedures. When we made a complaint to they wouldn’t show me exactly what was written about my child, they wanted to rewrite it. They were saying the work is professional but wouldn’t let the work speak for itself. They inferred that I shouldn’t be allowed to advocate during the process, that I could only advocate through the use of a process like appeals i.e. can only advocate after an outcome, ot during the process. But you are not able to see the information that they can so they can be looking at potentially incorrect information about someone, which is on your child’s record permanently and you won’t be given a chance to correct it. They didn’t even listen to the complaint regarding this, they kept assuming the issue was monetary, when it was actually about transparency/concern for my daughter’s permanent record. One day she will be managing her own plan and I had already been misquoted back to myself and didn’t want my daughter getting the wrong info in future. I have made upward of eight complaints about the same thing. They were always closing the complaint with no follow up, documenting that I was happy with the outcome, when I wasn’t. It was like a repetitive loop. People at both and NDIA will address an issue by pointing to the participant service charter but they will turn it into something that works for them, which suggests to the participant that the staff don’t understand the legislation that the NDIS is supposedly operating within.
Administration
Even the software being used is not inclusive of the service standards. It’s staff-centred, not person- centred. There seems to have been a massive investment in software that doesn’t put the participant at the centre. Why is it impossible to provide a draft to the participant after a review meeting? There is too much room for error, for incorrect information to be documented permanently on a child’s file. There shouldn’t be any need to exaggerate past your bad days. Not every day is the same, some are good, some are bad. Of course you need support in your worst times and you hope they’re not going to go on forever, but you hope that that’s going to be documented in a way that can be read back to your child later on. I found it very upsetting that I was getting misquoted back to myself, because those things aren’t true. The formal process doesn’t work because of the inaccuracy of the documentation and the inadequate skills of the staff, and our inability to fit into a box. The topic of the complaint was changed constantly. E.g. we had a Change of Circumstances review opened in response to a complaint about transparency and had to cancel it.
Expenditure
I understand the government have to be cautious and it’s blowing out more than they wanted it to. People have to learn about how much things cost. When you first see the plan, it looks like a lot but it’s not really. I’m finding that hidden costs come forward. E.g when after school care group changed management, there were extra fees on top of the hourly rate, which weren’t included in the quote. Therapists are charging for ‘administrative tasks’ – you don’t always know what you’re being billed for with extra dribs and drabs. Are they charging for the phone call they made to cancel our session when they were sick? There could be more education for parents for how to make budgets, how to set boundaries with service providers. Teach people how to set up contracts and hours – for the funding to benefit the child and not just the provider.
Nature of the Staffing
have provided countless staff who meet with us about our complaints and it unfolds the exact
same way every time: They meet with you, they tell you they will follow up, they don’t follow up, and they change the issue into something easier for them to deal with. In the two years since I have been with them, they have only assisted with one thing. I have had maybe two general check ins over two years but again, when I’ve brought up issues they either don’t follow it up or follow up an issue that is not what was raised. The staff turnover affects us by removing continuity of care. They keep reassigning my child’s file to new staff members. They don’t alert you when a new person has taken on your child’s file. When you raise an issue directly, it gets lost because of the constant staff turnover. You end up feeling like you’ve been blacklisted and the reason you’re not getting services is actually because you’ve had an issue and no one wants to deal with you. You’re constantly starting from the start with every person, there’s no momentum at all. It feels like the system is designed to give the parents PTSD. The repetitive experience with APM is that there is always someone who is keen to help, but not keen to actually implement a solution, then they drop off and you are forced to start again with a new complaint. At times I also feel APM staff don’t actively listen to discussion and just wait for parents to get overly emotional and exhibiting mental health issues before they will provide services, the services aren’t being provided in a way where parents can have a healthy
- conversation regarding issues and get results, so unfortunately I have had to engage formal advocates to try and get us restreamed back to NDIA so my child can get services.
Experience of the Participant From the child’s perspective, APM is taking a lot of parent energy away from what the focus should be – working towards goals – and redirecting it to the politics of the process. The reviews don’t happen when requested, or even when scheduled so my child has gone without services for an extended period because I’ve had to put my energy into the politics. We need a support coordinator and I expressed that 6 months ago but we still haven’t had a review to get that support in the plan. It’s like they’re trying to save paperwork. If your situation doesn’t fit nicely into their agenda, you won’t get what you need. I don’t think anyone from APM has actually met my child. My child has not been involved in any of the process because it is not set up to include her. They haven’t taken any time to get to know her. So they’re writing off what I tell them and they don’t even have a visual of what my child is like. There’s no breakout area, or toyroom or set up for her to be comfortable in the office. Again, very different experience with ECANT – they visited our place and saw us at community events and in the office. Then the whole setup with APM is not accommodating to the child – no face to face at all. When my child does get to the point of managing her own NDIS, it will be interesting because she won’t have met anyone from APM and there may be information that I wasn’t given the opportunity to correct that she then gets exposed to. The lack of responsiveness to the needs is a big issue. E.g. haven’t got a behaviour therapist because I don’t know who can work with non-verbal children and don’t have the time to ring around and find out/get onto waitlists. So then the school doesn’t have up to date strategies and they then make up strategies without BSP input that are not effective.E.g One school born strategy is to call me after half an hour of behaviours and send her home for the day. My child is missing out on upskilling in other areas of her life because the review has been so delayed and the allied health input is not updated.
Desired Outcomes I’d really like to see more accountability from partners in the community and service providers, especially around transparency and allowing parents to advocate effectively instead of shutting them down and blocking their attempts at discussion. If I was treated decently by all service providers, I might be able to manage everything, but in reality, I don’t have the time to address all of the issues and do it all. I worked in this Community services previously as a case manager, when I was always able to engage and advocate for people. As a parent and since the roll out of the NDIS, I am experiencing a hugely different side of the industry and rarely feel welcomed to advocate or make enquiries, so now I need supports like a Support Coordinator. As a Case Manager, they would be honest and say if they don’t have the skills to manage e.g a non-verbal child, but as a parent, they don’t say that, they give it a try and use my child for their own learning purposes. This creates further issues and means there is not any benefit out of the service. I’d also like to see partners in the community and service providers audited against NDIS service standards and national disability standards with an emphasis on holding service providers accountable in the area of participants being enabled to self-advocate or have a parent/guardian advocate for them. ‘Working with the participant/parent’ needs to mean actually resolving issues and taking practical steps, not meeting people and relaying platitudes.
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