To NDIS Submissions Committee.

General issues with implementation and performance of the NDIS

I am the sister and Primary Carer of the client of the NDIS who has an intellectual disability; she came under my care in early 2010. She lives with me and I provide all her care 24/7 other than her days at her Day Program Providers, 4 days a week.

With the introduction of the NDIS it was very difficult to obtain accurate information on how to develop a plan for my sister. The Day Centre program that my sister attends provided some information sessions but they too were unclear on a number of issues. Consequently after much searching and inquiry I found a 2 day workshop run by another organisation quite far from my home which I attended to try to receive accurate information about this new insurance scheme. There I received some good advice on how to set out a plan to get the best outcome for my sister as my sister’s intellectually disability disallows her from doing such things. It was a first time task for me and it was not an easy task, in fact for anyone at the seminar.

We did set out an extensive pre - plan to outline goals for my sister and the required supports to help her achieve these goals. Then we met with a Planner from the Salvation Army contracted by NDIA. She met my sister, myself, our mother and the coordinator of the pre-planning seminar I previously attended who was there to assist and advocate for us. The Planner drafted a plan after receiving from us our pre-plan.

The outcome was good and my sister was provided with a reasonable amount of funding for all her supports although we identified that going forward my sister would need more funding for her supports.

When I saw the new Planner for the second plan, for the second year, I attended with only my mother and without anyone else for support or advocacy. My sister required increased funding on her clinical supports and with her new plan I submitted information including occupational therapy and speech pathology reports to support the requests. I felt this Planner’s responses to my requests were less than satisfactory. Eg; I said I would want to request increased funding for my sister’s clinical supports. Her response was “ If you do that , it would impact on your core support funding, making it less.” I explained I couldn’t lower my sister core supports funding. We had exceeded our core supports before the end of the year.

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The Plan came back and I was shocked and totally unsatisfied with the new plan funding. It came back with less than half the funding for everything compared to the previous year. When I spoke to the Planner and asked “Why this outcome?”, I felt the Planner’s response was unprofessional and her explanation was insufficient. I was so dismayed about the response that I requested to have my original planner. I was told it was not possible but I was adamant that was within my rights and just said “I will be wanting a review” and hung up . I then contacted NDIA and they said the procedure to request a review was to complete a form and then request a time to see a Planner. After spending the whole weekend filling out the form comprehensively, on Monday I rang to make an appointment and was told they would have to get someone to call me back to book a time and I would be called on Wednesday.

On Wednesday I was very surprised to receive a call not from a planner but from an NDIA Delegate, he advised my plan was reviewed and it turned out that this reviewed plan had more funding and suited the needs and supports for my sister more than even the original plan. The NDIA Delegate told me the un-reviewed plan was done in error. When I inquired further with both, The Delegate blamed the Planners and the Planners blamed the Delegate. None the less I was very pleased with the reviewed plan.

I strongly feel that a lot of time, effort and expense could be saved if the plans are negotiated well with the client and or their primary carers prior to being submitted to the NDIS. If I was given the opportunity to negotiate with the Planner till we agreed and also had the opportunity to sign off on the agreed plan before it was submitted to the NDIS Deligate it would have saved the time, effort and expense of a review. Being delivered an unsatisfactory second plan with less than half the first plan’s funding and having to go through the time and effort of seeking a review was a ridiculous and very stressful process for me. I believe Clients and or primary carers should have the right to sign off on a plan prior to it being submitted to the NDIA deligate.

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Below is a list of other issues I had with the NDIS:

After several attempts at trying ( over about 6 months ) to access the Portal on the NDIS website, I finally was able to log in. The website is not user friendly and I didn’t find any useful general information there. The website also seemed to be basically dysfunctional a number of times. I couldn’t find where my funding allocation was listed on the website. I was lucky to go back to my original Planner and she explained to me where the funding was listed etc. in the Portal and where each funding allocation was described.

The first year for me was very difficult as I had a lot of problems sourcing a Support Coordinator. I spent a lot of time and effort sourcing most of the providers myself until I eventually found a suitable Support Coordinator this year.

Previous to the NDIS there was less out of pocket expense e.g. in her Day Program and Respite supports. NDIS apparently isn’t providing the same types of funding to the Day Program and Respite Centres. So these providers aren’t receiving sufficient funding in areas like transport and personal hygiene items. Consequently the providers have passed on those expenses to the client.

I understand when a new scheme as expansive as the NDIS is rolled out that there is sure to be teething problems. However I feel it should have been ready to serve the Cients without so much confusion and stress for the clients. The NDIS website wasn’t sufficiently developed and many of the staff were lacking the appropriate information and training. The NDIS is dealing with disabled clients and for many of these clients tackling these problems is far from a disability friendly situation.

Because of my medical conditions which have been exacerbated by stress it is planned for my sister to be transitioned to shared living accommodation later this year and this will require a new plan. I hope that this new plan will be satisfactory for her. This scheme really needs to be looked at with the Client in mind.

Thank you for considering my submission.