SUBMISSION INTO CAPABILITY AND CULTURE OF THE NDIA

26 September 2022 I am writing as a mother, carer and guardian to address the following Terms of Reference:

    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.

I feel deep concern and dissatisfaction with the NDIS and its treatment of my son and other clients. While a wonderful ideal and having the potential to be transformative for people with disability, The NDIS is currently dysfunctional, overly bureaucratic, confusing, wasteful and disempowering for clients and their carers. My son’s experience over the past year is an example of this and I write to you hoping that the issues I raise – which go well beyond my son and are matters of principle – can be addressed by the NDIS in positive and constructive ways.

I provide some details initially before identifying the key issues that I believe are of concern in relation to the NDIS and its processes and culture.

My son is years old; he has diagnoses of schizoaffective disorder, autism, OCD, severe anxiety and epilepsy. His psychiatrist (who we have seen for 5 years at our own expense) has noted that his “prognosis is very poor”, that “there are no further treatments which will improve his functioning”, and that he requires significant daily living support in a safe and controlled environment. I am my son’s NDIS nominee and his guardian and administrator (under the State Administration Tribunal).

Until January this year, my son lived with his father or me. His behaviour, including aggressive outbursts, and his desire for a more independent living arrangement led to us requesting a Change of Circumstance Review with NDIS in mid-2021 and a new Plan was issued in September 2021 which included funding for Medium Term Accommodation and funding to explore and design a potential Individualised Living Option with a note that “ILO Support Level 2 is considered to be suitable and appropriate”, though without any information or evidence as to why Level 2 support was c onsidered appropriate. In January 2022, my son moved into accommodation under the Medium Term funding and we worked with that provider to design an ILO and test the realism of that in the accommodation facility.

On 14 March 2022, we submitted a Change of Situation and ILO proposal to the NDIS. The NDIA then set up a meeting between us and the LAC (APM) for 22 April 2022 and APM submitted a proposed Plan to the NDIA within a week. The ILO part of the proposed plan was based on my son’s experience with the Medium Term accommodation and his daily needs. I rang the NDIA every fortnight for months for an update while this proposal sat in the system. Finally, on 6 July, we received a new Interim Plan and a note from an NDIA Planner in Victoria noting that the requested amount was above the level of funding that [my son] had been approved for and therefore the quote was declined. In other words, after 4 months, we received a proforma reply to resubmit our ILO request based on a previous assumption made by someone without full information.

As we worked to develop a new quote and to try to establish what the rationale behind this non- decision was, another new Plan was suddenly provided (on 13 August 2022) which excluded all c ommodation funding and was delivered to us without any liaison or communication. This Plan indicated a quote for ILO funding (with specified amount) was required, but later, our Support

Coordinator’s Experience

Coordinator was told by an APS Planner Delegate that this specified amount was a “computer glitch”.

In the meantime, my son was still in so-called Medium Term accommodation and we continued to be unsure of his future accommodation arrangements. Without proper funding, my son was at risk of homelessness; we have been doing all we can to avoid this and luckily the accommodation provider has been hugely supportive and flexible. Without requisite funding, my son was left on his own for hours each day or night, resulting in depression and suicidal thoughts and feelings. From 1 March to 18 August, there were 29 incidents of concern around my son, all recorded in a formal Incident Report; that is more than 1 incident a week. Incidents varied from aggression to others, self-harm requiring a GP visit, and walking onto a road in the evening due to feeling suicidal and wanting to be hit by a car.

I cannot easily express the pain and anxiety that such situations caused my son, his father and me. We have explored every avenue to assist my son with years of psychology, OT and behaviour support. We reply to dozens of text messages and visit my son weekly. I have spent hours and hours talking to therapists, support workers, working on plans and ringing the NDIA, struggling through paperwork and the labyrinthine processes of the system.

People are not ‘Level 1’, ‘Level 2’ or ‘Level 3’ in their needs. They are individuals who require reasonable and fair adjustments and accommodations to give them a life that is bearable. You cannot recover from autism and, as our psychiatrist noted, “there is ample literature which confirms the poor prognosis of Autism with early onset Psychosis” and that continual stress without adequate support “will exacerbate psychosis.”

On 19 August 2022, I wrote a formal letter of complaint to both the NDIA Acting CEO and Minister, the Hon. Bill Shorten. On 14 September, I received a call from a Team Leader in the office of NDIA in response to my complaint. This Team Leader was excellent and, after listening to me for 30 minutes on the phone, and reviewing the case, she was – over the next few days – able to resolve the situation for my son and we received a new Plan.

I am very grateful that my son now has a suitable Plan and was very impressed with the Team Leader who handled the issue so sensitively and effectively. However, I believe it was the fact I took time to write these letters of complaint (and perhaps the Dr in front of my name?) that meant I was referred to someone with the authority and knowledge to make a sensible decision and communicate with me in an appropriate way. In other words: the privilege of a good outcome has come to my son due to my ability to advocate for him. What about others who do not have the time or education or energy to do this? It is this question that drives me to make this submission to the Joint Committee.

My experience of the NDIS process (not just this year but previously), has shown me the following:

• It is dehumanising and disempowering. We can never develop a relationship with one person but rather get moved from pillar to post and are only ever given the 1800 number to call (and the staff there cannot actually help anyone). There should be one point of contact for each client and that should be someone who can actually assist the client.
• It is secretive and non-transparent. We never discover the rationale for decisions, what information was entered into the system or how decisions or non-decisions are reached. We have the right to know what decisions are made on what basis. We provide many reports but never know if they are read or used by anyone at NDIA.

• It is hierarchical. There is no collaboration with NDS clients and carers; we are all treated as though we are supplicants (or worse, criminals) and made to beg for support that is required. This is not self-determination by people with disability nor is it a shared discussion. We make requests and strangers make determinations. I have no way of knowing the skills and knowledge of those making these decisions. But they are often unrealistic decisions clearly made to save money. (I recommend saving money by reducing the waste instead.)
• It is wasteful. For example, in one of my sons Plans there was $500 allocated to purchasing a set of good quality noise-cancelling headphones to help address his sensory issues and ‘voices’, but there was also $1,495 allocated for a Plan Manager to help us spend that $500 (clearly ridiculous and totally unnecessary as I am able to help him purchase headphones). Another example: I can see a psychologist under Medicare for $160/hour but my son’s NDIS funded provisional psychologist costs $245.50/hour.
• It is confusing. Information about ILO/SIL/SDA accommodation is confusing and unclear and changes. It is based on people fitting boxes rather than the system working with people. I am an educated, literate and English-speaking person; if I find the system confusing, imagine how people from a CALD background feel. Other aspects of the NDS are also confusing, such as pricing.
• It is slow, inaccurate and unwieldy. Everything involves submitting multiple documents, plans or service agreements. And yet there is no evidence provided that these are read by the relevant personnel. Timelines are ridiculously slow - how can the NDIS fund a 3-month Medium Term Accommodation package for my son and then take more than 4 months to respond to the ILO request? Mistakes are regularly made in letters and documents from NDIS, ranging from misspelling my sons name to the so-called ‘computer glitch’ generated a few weeks ago. I apologise for the length of this submission. It is my attempt to summarise my experiences of the past year. Just imagine how much angst and how many words I could produce after 23 years of caring for my dear son, and how tired and dispirited I have become recently as I myself age and face the fear of my sons future without me as his advocate.

I am hopeful that the various recent changes being made to the NDIS will be beneficial. More people with lived experience of disability and more carers need to be employed by NDIA in decision making roles. The systems need to be simpler and more transparent, and the timelines improved. Most of all, NDS clients and nominees should be treated with respect and dignity in their dealings with the NDIA. For individuals with serious psychosocial disorders (like my son), life is incredibly difficult everyday and the past three years have been even more challenging. Similarly, clients with autism spectrum (again, like my son) and their carers or nominees also need a more responsive and inclusive NDIS. Perhaps the NDIA can train staff in working with these clients and develop a more collaborative and less adversarial relationship.

Thank you for the opportunity to make this input.