10377 – Individual submission

I am the XXXX XXXX and XXXX XXXX for XXXX who joined the NDIS in October 2016. She is XX years old. She has lived with a major psychiatric disability all her adult life. She has had some good periods of living well in the community, without hospitalisation. However, in recent years she has had several major crises, with more frequent and longer periods in hospital.
The NDIS has been quite transformative for us. It took a couple of plans to work out the most appropriate supports, but now the services are working well. Thanks to the NDIS, she has remained out of hospital for twelve months for the first time in 5-10 years. With the support of care workers from the NDIS, she has regained significant independence and a quality of life she has not had for many years.
We recently had a third plan approved for her under the NDIS. From the first to the current plan, I have observed some changes during my interactions with staff from the NDIA, and from Feroslac which provides the ‘Local Area Coordinators’ for the Scheme. In the early days, the NDIA was very positive and the staff could not do enough to help us understand the Scheme and identify practical support options that were relevant to her needs. For the second and third plan, however, communicating with the NDIA has been more difficult and complicated. For example:
• It was harder to get the relevant services agreed under the second plan, even with a written recommendation from the doctor who had treated her in hospital.
• For the third plan, we had a one-off meeting with the Local Area Coordinator in early September, but there was no follow up. I had to ask after the plan this week when a service provider had their access to the portal stopped. The overall funding amount has been reduced without any explanation, and I am not sure if it will cover the required services for her in the coming year.
Considering the questions and issues in the Discussion Paper, I suggest the following ideas for improving future laws, standards and implementation of the NDIS:
1. I suggest caution in guaranteeing maximum timeframes for the NDIA to complete steps in the process for creating, reviewing and checking delivery of plans. This may put unreasonable pressure on staff and may create unintended problems in terms of NDIA staff morale, effectiveness and efficiency.
2. The NDIA should keep participants well-informed about the progress of their application, and should guarantee essential support services will continue without interruption between plans. Once participants have come to rely on assistance under the NDIS there could be serious consequences for them and their families if it is interrupted without notice, and without providing an alternative.
3. The NDIA should raise potential problems during planning and review in good time for matters to be resolved before the current plan expires, with every effort to minimise disruption or distress for participants and their carers/families.
4. The NDIA should use evidence and experience from each participant’s previous plan to inform the quality and quantity of assistance under subsequent plans.
5. It should be easy to make small changes to an existing NDIS plan without redoing the whole plan.
6. It should become easier to renew a plan once a participant has been in the scheme for a while, and once there is clear evidence that the supports are working well.
7. It should be easy for carers and guardians to have their role acknowledged and supported by the NDIA, while still protecting participants’ human rights, best interests and personal preferences.
Thank you for the opportunity to contribute to the Review.