Capability and Culture of the NDIA

Submission 64

I would like to point out a few issues I have had with NDIS or that have happened to me with NDIS in the past or current plan. My daughter, 14 years old, has severe cerebral palsy, wheelchair bound with complex communication needs and epilepsy.

• During this current plan meeting via phone on Thursday 24th March (my daughter’s OT, , was attending too), I talked to a lady from NDIS , Cockburn, Western Australia, who was supposed to take all the information and present it to the person who then allocates the money for my daughter’s plan. Withing the first 5 min, she told me at least 10 times that the plan will be shortened and I won’t get as much money as I did before. How can I trust this person to represent my daughter’s case properly when she keeps telling me that the plan will be shortened even though we haven’t even talked about the reports that I handed in!. She said that I can only use one provider for physio or speech therapy. My daughter has complex needs. We need a physio that is specialised for gait training (Healthy Strides Foundation, intensive therapy) a physio that works on core strength and does weekly physio sessions with her (Little Bodies Therapy). Advanced Biomechanical Rehabilitation is another physio provider we use as they do the treatment on the kids and we learn, as parents, to do it as well. This is a therapy we do on our daughter every day, hence she has no deformities as so commonly seen in children with cerebral palsy. This year I got told they don’t pay for it anymore. They just cut it for the sake of it! Why? I need these 3 providers to get the best out of my daughter’s abilities to keep her as healthy and strong as possible to avoid future health issues. I also need to mention, that I didn’t ask for more money and just asked for the same amount!

• I have 3 speech therapists that work on oral speech (Skills 2 Talk) as her oral speech is
  

   improving to a stage where we can actually understand some of her needs and wants. We
   use a specialised speech therapist (Interactive speech) for her Tobii device, which is her main
  way of communicating at school and with her peers/family. Plus the Institute for Functional
   Neuroscience that through brain stimulation, we can work on her speech part in her brain
    plus on top of that it has decreased my daughter’s dystonia to a level where she doesn’t
  need to be medicated. All 3 providers are reasonable and necessary to support my
    daughter’s needs. I cannot do with just one of them as they never cover all the aspects that
  

  my daughter needs. Same with speech therapy, I did not ask for more money than in previous plan. Nevertheless, they still cut it back!

• I do self-manage my daughter's plan and was involved already with Better Start, WANDIS
  

  and now with the federal NDIS. I got told that I can pay massage or chiropractic out of core.
  

  My daughter needs these supports occasionally as both hips are dislocated and her body needs to be aligned and her muscles relaxed. On this years plan, the above mentioned lady told me that I’m not supposed to pay these things out of the plan and that she would not provide the money anymore for this. My LAC told me otherwise. As I am self-managing and it sounds reasonable and necessary I could pay out of Core. The planning lady added all the money up that I have used for massage and chiropractic treatment and deducted it from the new plan. This is extremely frustrating as my daughter’s plan money is already shorter as some of her peers that have the exact same needs.
• Why do we need to talk to a middle man, who has never met my daughter, instead of the person who actually allocates the money? There is too much miscommunication and wrong presentation happening between all the persons involved.
• On another note, why can people who had payouts in Millions access the NDIS? Isn’t the pay out here to pay for all medical issues that accumulate during a life time? Isn’t this double dipping? My best friend’s child has cerebral palsy acquired during malpractice and had a 7.5Million Dollar payout. They are now on NDIS too. Both children are nearly identical in their health issues but her Core is over $100’000 and my Core is $60’000. Both kids are same

Capability and Culture of the NDIA

Submission 64

Age. Why is NDIS supporting people that have pay outs? Why is she getting so much more than my daughter?

• I have noticed, while talking to many other families, that there are differences between the NDIS hubs. Midland and Armadale are more generous on every level than Cockburn. I’m with Cockburn and always get less than other families in other hubs.
• Why can a physiotherapist on the NDIS charge $224.62 for one hour session, when the same profession but not NDIS charges $120/hours. Is the NDIS destroying itself with payments like this. These are nearly lawyer fees.

It would be interesting to find out the answers to all of the above questions.

Lastly, there should never be an issue if Labour or Liberal is governing the country. NDIS should be treated like Medicare and therefore get all the government support that is needed. It just seems that Liberal always try to cut back on NDIS support. We families desperately need all the support we can get to provide the quality of life to our children they so deserve.