Capability and Culture of the NDIA

Submission 162

Inquiry:

The Capability and Culture of the NDIA, Joint Standing Committee on the National Disability Insurance Scheme

Terms of Reference:

The committee will inquire into and report on the implementation, performance, governance, administration and expenditure of the National Disability Insurance Scheme (NDIS), with particular reference to: a. the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment b. the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency; and c. an y other relevant matters.

Introductions:

Our family has been dealing with the NDIA since 2018. I am mum, I left paid employment in 2010 when it became apparent my first child needed substantial support. I now provide full-time care and home-education for both children. Teen is and has multiple physical (Trisomy 21 = down syndrome), intellectual, and neurological (non-verbal ASD level 3) disabilities. His care needs are substantial, needing assistance with every activity of daily life. He cannot be left alone. ’tween is and has ADHD +ASD (Autism) + DCD (Developmental Coordination Disorder). Luckily they have a loving sibling relationship. Dad is employed full-time.

The Pitch Problem:

On each occasion that an NDIS plan, first plan or revised plans, has been presented to me, The Local Area Coordinator who has presented it to me has told me that it is a very good plan, with much more funding than most plans, and that my children are lucky to have these plans. Each time I have felt that I was being given a sales pitch. I felt particularly annoyed to be told this when vital supports were not included, despite being specifically requested and evidence provided, hence contrary to the NDIS legislation. I also felt unsupported to request a review for the missing necessary supports, and felt it necessary to find and travel that path without support.

Addressing The Pitch Problem:

Transparency and support should be paramount on plan delivery. Participants should receive a document that includes a table of: supports requested; supports provided; evidence relied on in approving supports; supports denied; evidence that was considered and why it was insufficient. The document should also include a list of independent supports the person has to assist them in making a request for review. NOTE: many participants have found through FOI that their supporting evidence documents, including treating therapist reports, have not been read, nor even accessed.

The Intentionally Misleading People With Disability Problem:

The NDIA have continued to tell participants incorrect or misleading information. For example, for a few years when being presented with the new plan for my Teen, the LAC (Local Area Coordinator) stated they had to read out to me some information from the NDIS. This script included the claim that NDIS does not fund everyday expenses such as “gym memberships”. After our first plan I became very familiar with the NDIS legislation, and read very many AAT (Administrative Appeals Tribunal) decisions. So I challenged this statement on subsequent occasions informing the LAC that the information was false, and provided the example of King and NDIA 2017 where the NDIA conceded that a gym membership for the participant was reasonable and necessary and not an everyday expense. I have also been told, and other participants have reported the same, that for some necessary supports due to the participant’s disability the NDIA will only fund “the

Capability and Culture of the NDIA

Submission 162

• difference” between that cost and the cost incurred by someone without a disability participating. This is despite the Federal Court of Australia specifying to the NDIA that “the Act requires “reasonable and necessary supports”, once identified, to be fully funded by the Agency“ (2017fca0308). For example, some children are unable to safely participate in group swim lessons due to their disabilities. For children with particular disabilities, including Autism, drowning is one of the main causes of preventable early death, so water safety and swimming skills are vital. Yet the agency consistently tells parents that they will only part fund these necessary supports.

10. Addressing the Intentionally Misleading People With Disability Problem: There are so many instances of this. TeamDSC have outlined many on their website, including instances where the NDIA have been told directly by the AAT about instances where the Operational Guidelines are not consistent with the Act, yet they remain unchanged. I suggest a mechanism that allows anyone to submit “bug report” regarding the Operational Guidelines, or information the NDIA has provided that is incorrect or misleading. There should be a team within the NDIA that deals solely with these, and reports should be publicly provided about the number of bug reports, how many resulted in a change being made, and how many remain “open”. The “bug report” model is used in I.T. and can easily be adopted from electronic gaming examples where the public submits “bugs” which are then catalogued and assigned as a new bug or duplicate of a previous specified bug number, or not a bug as it is working as designed.

11. The NDIA Classing Everything as “Parental Responsibility”: The FFNR 2021 decision is a highlight here. I have read an 80+ year old woman post that the NDIA told her the care of her 50+ year old daughter was “parental responsibility”! Navigating the NDIS, particularly for the first few plans is difficult, even for tertiary educated people, and Support Coordination should be provided more readily. I have begged for Support Coordination for my Teen’s plans, and been consistently denied. It has meant that he has gone without many necessary supports because I am already stretched thin and cannot do it all. It has taken me 4 years to find the right team of therapists for him. This is currently a team of 5 therapists. For people like Teen, engaging with a therapist who does not have the experience and skills of assisting a person with Autism level 3, is unlikely to be significantly beneficial, and crucially risks harming the persons trust of all therapists and lowering their willingness to engage with any therapist.’ We have had some therapists that were not the right fit, and I witnessed how this disadvantaged Teen. Finding the right therapists for Teen is a monumental and gruelling task. As a mum already tasked with Teen’s significant daily care needs, and those of ’tween, as well as providing for their education needs, I have little time to devote to the multitude of other tasks that are needed, including the arduous task of searching through hundreds of therapists to figure out which one has enough specific experience with people with Autism level 3, and is able to engage with Teen in an effective and safe way. I have engaged over a dozen therapists for Teen, but have contacted scores and read through the details of hundreds to do so. I am not a support coordinator. I do not have current knowledge of which therapists are currently available in the local and surrounding areas, therapists that have recently moved within reach, therapists with specific expertise and experience that are further away but may be worth the expensive petrol and long journey.

Despite explaining all this to the NDIA verbally and in writing, Teen is continually refused Support Coordination.

12. NDIA Classing Everything as “Parental Responsibility”: Narrowly consider parental responsibility, and, as the AAT have reasoned, and highlight that section 34(1) operates as a factor to provide a support as families should not be tasked with more than is reasonable.

My apologies for not having time to write more.