Submission from a Mum of child with Early Intervention NDIS Package , 21 April 2015

Personally I have found dealing with the NDIS very stressful as a self-managing mum of a child participant.

Through accessing service providers for my child, I know my experience is not alone. The system needs to have a lot of work done to smoothly transition, (self-managing plans), families into the ‘unfamiliar’ world of the NDIS. The website itself aka ‘portal’ to submit claims is quite clumsily put together, it would be helpful to have a small free text box when submitting claims for future review of records i.e. to note ‘physio’ for a claim entry amount; e.g. 20 letter limit.

Portal questions are useless as NO one checks them. I have had to chase several queries via this method multiple times to get answers back, when you do it is generally slow in return. Not all questions are answered despite offering to follow up from planners. Planners who are regularly in meetings in my opinion should not be managing participants as you can NEVER get a hold of them! Frustrating. Don’t bother calling the 1800 number it is useless, all you will get is “call your planner”. . . There is also poor coordination of funds transfer between the NDIS & Therapy ACT (which will be obsolete from December 2015) for families who were in already in the system previously & had changed over to the NDIS.

There needs to be more support provided for self-managing plans when choosing & implementing new supports, (service providers), as per Your approved NDIS package. This in itself is very stressful as it is unclear what you are allowed to claim as you may be unaware of options available. Participants should be given a list of examples of things they are able to claim under each line number of their plan as a guide.

Regular ‘check in’ meetings, potentially quarterly unless requested earlier, with the initial planner would be extremely helpful to allow any concerns or questions participants may have to be sorted out thus reducing stress of managing their own plans; or just to check you are doing the right thing. Nobody wants to accidentally spend government funded money on services that the NDIS deems as not meeting their criteria & need to pay that debt back.

Not all of our experience with the NDIS has been bad, but a lot of stress has been put on myself as the self-manager of my child’s plan with the initial examples I have given in this submission. I am very grateful for our family being eligible, & for the supports my child has been able to have provided- to help my child reach full potential across multiple domains of development.

One final point, I truly believe the NDIS has grossly missed the point on care-giver burden of parents managing multiple supports for their children who are participants. You truly run yourself ragged running around between appointments on limited number of ‘days off’ whilst still working part time. Total plan amounts need to be (in my opinion) reviewed for Transdisciplinary packages so that an appropriate amount can be set aside for the travel of service providers to the child’s place of schooling / childcare to reduce this burden on the parent; physically & psychologically speaking otherwise the parent can & will burn out. . . I think it would be more appropriate to add back in the travel line above the Transdisciplinary plan total package limit as it is not enough. In relation to travel, for service providers to be able to claim where applicable $168.26 for an hours travel is absurd, & a great waste of valuable taxpayer money. A more reasonable price per km ought to be considered within the review of this trial period. It is the small things (aka communication, customer service, the site itself -portal) that really are the big things. It would be a shame for an initiative that had so much potential & promise to transform disability + early childhood intervention services within Australia but could so easily miserably fail; particularly if the NDIS’ delivery systems / processes & lines of communication are not improved beyond what they are now, & prior to further roll out of the initiative across the rest of Australia.