Personal Submission for The General issues around the implementation and performance of

the NDIS

Saturday the 25th of November 2017

to whom it may concern,

I am writing as the Mother of a child with a disability, currently in receipt of an NDIS plan and as an experienced mental health clinician with Masters level education. I would like to provide this submission to express my concerns with the implementation and performance of the NDIS. In order to keep this submission succinct I will use point form to discuss my experience and concerns.

As a Mother my own experience has been both positive and challenging.

Positive aspects:

• Receiving a plan that met our therapy/ early intervention needs,
• The funding allocation was flexible in that I could move away from our Early Intervention provider and seek particular practitioners with the level of experience and expertise in areas relevant to us, and that we could use this between different providers not boxed into to certain funding for each
• Our LAC has been easily contacted throughout the year of the plan.

Challenging aspects:

• At the initial planning meeting I was given misinformation (specifically that music therapy would not be funded by NDIA as it is not recognised, for this I then forwarded the official paperwork ‘Guide to Suitability’ which shows registered music therapist are in fact able to be utilised),
• In this meeting I was informed that things like “it’s common for 5 year olds to not be toilet trained so nappies won’t be funded” similar with other goals we had. Again, I needed to later forward legislation and information regarding the ‘no worse off’ notion and that CAPS funding would have been available to us pre NDIS.
• We signed up with a plan manager, , and this experience was terrible. They continually missed invoices, delayed payments and didn’t follow up with my contact about these. When I requested to terminate our agreement the manager contacted and apologised stating he would follow up. He then forgot also and only after a lengthy to and fro and myself involving the Disability Commissioner and making a complaint to NDIA (and attaching ALL my communication with as they were lying to providers and the Disability Commissioner) was this finalised. In the mean time of 8 weeks POST the termination date (which was 4 weeks after my request to terminate) I was unable to sign up with a new plan manager, providers were not paid and the turmoil was very taxing and time consuming. I was disappointed with the way that the NDIA complaint was handled, they contacted minimally and seemed to

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offer no assurance that this was noted or followed up on. Our LAC was supportive however the NDIA management of this formal complaint was disappointing.

Being a health professional and one that tends to over prepare I had spent much time going to information sessions, preparing documentation and reading legislation. I’m concerned that without this time and effort our needs would have been overlooked. I’m concerned for the participants who do not have the time or ability to prepare as I did. I’m concerned as to where the safeguards for this lay?

As a mental health professional I am highly concerned about the welfare of people who are determining their NDIS plans, highly concerned with how the actual process is affecting people.

 -     I follow several NDIS related groups and have witnessed people contemplating
   suicide due to the challenges with the implementation of the NDIS,
 -  There are reports of Planners and LACs not reading medical/ therapists reports yet
  making decisions about the lives of others,
 -  There is a glaring lack of consistency among planners,
 -  The fact that many plans are considered underfunded and people are expected to
   appeal rather than working with the participant in the initial stages is very
   concerning, appeals are taxing and really only available to those with the energy/
    ability/ knowledge of such or whom can contact an advocate – but again one needs
  knowledge of such being available,
 -  The determination of who meets the eligibility criteria also appears to be largely
    inconsistent, I had a friend apply and sent through her documentation only to be
   told the access worker needed the particular assessment forms used in determining
   her child’s diagnosis rather than just the paediatricians report. This is highly
   concerning given that the paed report was detailed stating diagnosis and needs and
  an untrained person (access worker) who does not know the family wishes to
   analyse medical diagnostic assessment paperwork?? As this was an ASD diagnosis in
   question I can only wonder whether it is some form of discrimination based on
   diagnosis is occurring here – the MRI pictures were not required for my daughter,
   I’m sure genetic testing analysis is not required for those with Fragile X for example.
  So one wonders why the documentation used to assess a person with ASD is
   required opposed to the detailed medical report. For what it is worth, this hurdle
  was too much for the application who was already struggling with busy life and
   having attended appointments for the paperwork, and has subsequently could not
   follow up on the application at this time.
 -  The reliance on people completing the forms in a particular way, using particular
   language and having particular information in reports in a big concern and again
   leads me to worry about those who need support and struggle with this level of
   attention to detail needed.
 -  The concern that I hear LAC’s stating that funding is reduced in future years, that this
      is a given expectation. This demonstrates a complete lack of understanding of
    disability. Disability and functioning are not linear, people change, goals change,

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needs change. If the NDS wishes to meet the needs of people wherever they are in life like the advertising states, then this expectation of reducing funds over years should be reviewed.

Mainly I worry that the mental health needs of participants and their carers are not being addressed. It’s one thing to say that mental health needs are medical, however, when the system that is advertised to assist people, is actually worsening the mental health of a significant number of people then something needs to be done immediately.

Thank you for the time to consider this submission.

Regards,

Pieta Shakes Victoria