Supplement to submission 53 (if possible)

JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME

General Issues

24 May 2024

This submission will focus on:

• The extensive range of competency in planner/delegates that causes vast inconsistencies in the quality of plans, the budget and type of supports participants receive.
• Participants who self-advocate can influence the plan budget and support they receive highlighting the discrimination and disadvantage faced by those who can’t.
• The waste of NDIS time, resources and money that follows a bad planning decision.
• The completely unacceptable personal information contained on NDIS plans.

Re-cap

29 Feb - Delegate N rang but never spoke to me. Delegate N spoke to my support coordinator for less than 5 minutes. My SC reports Delegate N never disclosed she was conducting a review. My SC also stated she had great difficulty following the conversation due to the delegate’s accent.

12 Mar – Without any contact with me, a new and reduced plan appeared in mygov. I submitted a written complaint to the NDIS about Delegate N’s conduct and plan.

13 Mar – Rang NDIS and went into head office to report same.

22 Mar – Letter from NDIS stating Delegate N’s plan would be reassessed.

Introduction

As luck (???) would have it, three days after I sent my submission to the committee, the NDIS contacted my SC with meeting details to reassess the March 11 plan. The meeting was held two working days later and a new plan was provided the day after that. Impressively timely and efficient but most unusual!

The NDIS’s decision to reassess the March 11 plan

It’s unclear whether Delegate N’s decision to exclude me from my review and change my plan was what NDIS policy dictated or because she was incompetent.

Clearly Delegate N should have read my reports, spoken with me and not cut my plan. Once I informed the NDIS what had happened, they quickly decided to reassess Delegate N’s plan without me submitting the usual forms. That’s very unusual and I can only conclude the NDIS wanted to dispose of Delegate N’s plan quickly and without fuss.

If Delegate N was directed by NDIS policy to exclude me from the review and change my plan then the planning strategy of “building” plans without any contact with participants is probably true and proving to be a disaster. I called the national contact centre on May 22 to enquire about my complaint - outstanding since March 12. The initial recorded message states, “We are currently experiencing a high volume of enquiries from participants asking to change their NDIS plans ….” I don’t think that’s a coincidence. I think the NDIS are currently scrambling to correct issues created by changes in their planning process and are understandably overwhelmed with requests to reassess the unsuitable plans that resulted. I could be wrong.

Plan reassessment meeting – May 14

When I arrived at the NDIS office

When I arrived at the NDIS office I was greeted by the same receptionist as March 13 except she had acquired a completely different manner – all light and sunshine this time! There was no stalling, gatekeeping or excuses and I was not made to stand at reception discussing my private business. I was immediately moved to a waiting area and shown into a meeting room on time. The change in her manner was clearly because this time I was not presenting with a problem. Treating people differently according to why they come into an NDIS office is blatant discrimination and the NDIS needs to address that. Every person coming into an NDIS office should be treated the same way - with professionalism, kindness and respect.

Planner/Delegate S began the meeting with an incredibly vague opening statement like what can I do for you or how can I help you today? My reaction was immediate - stunned, confused and unable to speak. I picked up my bag and was set to walk out when fortunately my support coordinator came into the room. I told my SC the planner didn’t know why we were there and she was also speechless. Probably because I now had a witness and a support person with me, my “reasoning brain” kicked in. I explained I’d received an inappropriate plan in March from a delegate who’d never spoken to me. I’d put in a written complaint and feedback, visited this office in person and rung the NCC numerous times. I explained the NDIS told me they were reassessing the plan. I’d received an email telling me to report here for that meeting today with her. Now it was her turn to be stunned. She was very surprised that I hadn’t submitted any paperwork requesting the reassessment and claimed she knew nothing about anything else I said. I told her I found that impossible to believe but maybe the legends about the silos of non-communication within the NDIS are true and she hadn’t been told anything. Maybe Delegate S wanted to begin the meeting with a clean slate and hadn’t read my file. Who knows! Later in the conversation she slipped up indicating she’d known exactly why I was there. However, at that point, she wasn’t going to explain anything so I moved on.

I was very upset for the entire meeting but to Delegate S’s credit and my utter amazement, she demonstrated trauma informed practices and dealt with my distress by remaining calm, respectful and kind. She was warm, had a sense of humour and because she listened and treated me like a human being, I felt safe enough to stay in the room, contribute to the meeting and explain what support I needed. It was obvious Delegate S had read and considered my reports. I pointed out the harm caused to me by my previous planning experience and the months of waiting for this reassessment and she acknowledged that.

Delegate S communicated clearly, told me exactly what would be in my plan and as she was the person responsible for approving the plan, it would not be changed. She was professional, efficient and true to her word and my new plan came the next day exactly as we’d discussed except for the information in the section titled Your Profile. It was a light bulb moment to realise this is what a competent planner, a professional review and an appropriate plan looks like. Sadly, this was the first time I’d ever experienced this. The speed, efficiency and professionalism of the reassessment process was unexpected and surprising. I sent positive feedback to the NDIS about Delegate S and suggested they utilise competent and experienced delegates like her to mentor and coach those like N.

Differences in plans

The March 11 plan removed two thirds of my psychology, shortened my plan by a year, included OT no-one requested and kept the same level of plan management, support coordination and support work. The total budget for two years was approximately $27,000.

The May 14 plan tripled my access to psychology and for the first time I was given access to a psychosocial coach and a mental health OT. My support worker and support coordination hours were more than doubled and included weekend funding making it more flexible. The length of my plan was increased to three years as my psychiatrist had recommended. Plan management is included. The total budget is approximately $123,000. This plan is substantially bigger and provides the most support I’ve ever received.

Although I am relieved and grateful for receiving this plan, I’m also confused how this happened so randomly. Maybe due to a succession of dud planners I’ve been underfunded for the entire time I’ve been on the NDIS and this plan finally provides the level of funding I should have been having all along. The “changes in my functional capacity” cited as the reason for the reassessment are not significant enough to explain the increased support. The most likely explanation is that Delegate S is the first planner/delegate to read my

My Profile section of plan

I want to explain this further. All NDIS plans have a section called My Profile. It is described as, “This is personal information about me, and I can share any or all this information with anyone I choose, including my providers. I can also choose not to share my information.” It’s a nonsense sentence with terrible punctuation and I hate that it’s written in the first person because I never wrote it!

This section serves no purpose except to show the NDIS have considered participants as individuals. None of my service providers ever read this information because they speak with me and get to know me as a person. The information is in the plan so how am I able to “choose” not to share this information? If we’re talking about choice, why don’t the NDIS let me “choose” what goes in this box? If I choose to share nothing about my personal life, this section should remain blank. Participants should have complete autonomy over what is said about them on their plan. I’ve never told the NDIS the information that’s in this box and I’ve never given anyone permission to write this about me. I HATE this text box! It’s obscene!

My issues with the My Profile section began in 2018 when I believe an extensive fairytale about me was created by a computer bot. Despite new and updated information being provided twice by support coordinators prior to reviews, the 2021 and March 2024 plans ignored the new information and regurgitated the 2018 fairytale word for word. The website states I am able to change my personal information yet despite requesting exactly that in an extensive complaint to the NDIS in 2021, the same compost appeared on this year’s plan. This technology speaks for me without me having any control over what it says and I have been unable to stop the NDIS from using it on every plan for six years.

Hopefully the committee can appreciate how distressing it is to read offensively incorrect and outdated vomit about yourself for six years. These are some of the statements copied from 2018 and 2021 and also the March 11 2024 plan. I hope the inaccuracy shocks you.

“X has family that live within the area” – not true

“X volunteers a few days a week” – not since March 2022

“X enjoys walking her dog” – he died in 2023

“X does Tai Chi” – not since December 2022

“and Philosophy” – not since February 2020

“X’s main support worker went on maternity leave” – that was July 2020 and that unborn child is now four years old and at preschool.

“X has family residing nearby” – not since 2017

“Her GP, Dr C.G.” – has not been my GP since early 2023

Apart from the inappropriateness of providing a legal government document to me that has contained incorrect personal information for six years, the repeated inability of the NDIS to give a damn and fix the problem demonstrates contempt for me as human being.

During the meeting with Delegate S

I raised this issue.

I asked her if the information was written by a bot or a human but she remained tight-lipped then curtly asked me what I wanted in the text box. I said I wanted nothing written there because I do not want personal information about myself, my pets, my hobbies, my life etc. on my plan because it’s irrelevant and no-one reads it anyway. I told her I believed a software program gleaned information from my reports and created the My Profile section. Clearly a human being wasn’t involved because the same errors have been repeated for six years despite new information being provided. I repeated as many of the incorrect statements I could remember. Delegate S indicated she needed to write something in the box so I said write, “X does not want anything in this box.” I added that if that didn’t provide enough characters to satisfy the bot she could write rhubarb, rhubarb, apple pie until the box was ticked and the program would allow her to proceed.

When I received her plan, My Profile contains four sentences once again taken from my reports and not what I requested. Delegate S either changed her mind or the computer system overrode her choice.

• X lives in XYZ.
• X volunteers.
• X regularly sees her support coordinator and new support worker.
• She also engages with health professionals.

What purpose does this simplistic rubbish provide? Honestly! It may as well say X shops at Aldi, loves ‘Farmer Wants a Wife’ and drinks wine in the bath. It says nothing about who I am as a person or my disabilities and it’s not necessary to know any of this to be my provider so who’s it for and who’s going to read it? It’s better than the drivel I’ve had to put up with for six years but it’s still not what I chose and I had no control over it.

Wastage within the NDIS

I pointed out to Delegate S that the NDIS must spend a lot of time, money and resources fixing substandard plans. Delegate S’s professional poker face slipped a bit and she agreed quite firmly which suggested she may have “fixed” up quite a few botched plans lately.

After receiving the Delegate N’s dud plan on March 11 I had to re-sign my agreement with my plan management company and a $232.35 set up fee was charged. Fifty six days later when I received Delegate S’s plan, I had to re-sign the agreement again and another $232.35 set up fee was charged. As I’ve been with the same plan manager the whole time and their system is linked to the NDIS, a few clicks on a computer should not cost this much money. These “set up” fees charged by plan management companies are taken from the budgets of tens of thousands of participants like me who are forced to get plans changed in a short space of time due to errors in the NDIS planning process. This huge waste of tax payer money is caused by the NDIS itself and only serves to line the pockets of plan management companies. Participants in no way contribute to this wastage. I cannot self-manage my plan and need someone to do that but I think plan managers add another layer of bureaucracy that wastes vast amounts of public money. Solutions may be that if a plan is changed within a set period of time companies are not allowed to charge another set up fee or maybe the NDIS should do the plan management.

Concerns

1) A planner/delegate is appointed by the NDIS to conduct my review. Perhaps it’s the luck of the draw who I get. Delegate N and Delegate S received exactly the same reports yet they produced vastly different plans resulting in significant changes to funding, types and levels of support. With the tap of a computer each delegate had the power to change my life. Delegate N cut my existing support and Delegate S reinstated and increased my support. The process is obscenely arbitrary.

2) It does not sit well with me that a single individual can make life altering decisions about a participant’s life without there being any oversight over the resulting plan. It used to be that planners worked out the plan then delegates approved it but now they seem to be all planner/delegates. The person who writes the plan also approves it unless, as Delegate S explained, the plan exceeds a certain time or cost when it must be reviewed by a team leader. Allowing an individual delegate who fits anywhere on a spectrum of competence

Questions to consider

to make random life changing decisions and award or remove large amounts of funding from participants is completely stupid and mind-blowingly inconsistent.

3. In order to protect me from harm, who was keeping track of what Delegate N was doing? There was no effective oversight over the decisions Delegate N made and the NDIS were completely unaware of her inappropriate review and plan until I brought it to their attention. If her plan had not been thrown out by Delegate S, I would have been stuck for two years with substandard support. Although I felt completely helpless and overwhelmed being parachuted into challenging the NDIS yet again, I did it. Participants who don’t or can’t do that get stuck with really bad plans and no-one notices or does anything to fix them. It’s so discriminatory, unreasonable and unfair. Surely the NDIS system should have some sort of internal oversight process to flag incompetent delegates who produce substandard plans without it being totally up to participants to point that out to the NDIS. They’re the government agency. We’re the people with disability.

Questions to consider

Much of what I’ve experienced since February 29 does not make sense because no-one has told me the whole story and that’s unsettling.

1. What factors do the NDIS consider when allocating planner/delegates to participants? Is there any deliberate decision making linking planner/delegates with experience or expertise in particular disabilities to specific participants or is it just totally chaotic and random like bingo? It’s impossible to have planners with experience in every disability but broad groupings would certainly help – autism, physical, intellectual, psychosocial, neurological etc. I really appreciated Delegate S’s trauma informed knowledge because I have PTSD.

2. Getting an incompetent planner/delegate and the stress involved in sorting out the mess they create is a hugely harmful experience for participants. How is it fair for participants to be exposed to such a vast spectrum of professional competency within the planning system? What standardised benchmarks does the NDIS employ to determine when a planner/delegate is sufficiently trained and competent enough to conduct plan reviews alone? Are they just let loose on participants or is there an internal system of effective supervision, monitoring and oversight of their decision making and performance? Does the NDIS allocate all the L and P plate planner/delegates to particular cohorts of participants and to those participants least likely to argue, speak up and self-advocate?

3. What if Delegate N’s failure to include me in my review was entirely her own decision? During the May 14 meeting, Delegate S admitted Delegate N needed more training. If Delegate N received training, why did she think it was even remotely acceptable to exclude participants from their reviews? Was her knowledge of disability so minimal that she thought autism and psychosocial disability meant I also lacked cognitive capacity and was non-verbal? There’s no explanation for her behaviour and her actions were wildly contradictory. On one hand she saw me as a participant so lacking in functional capacity that she assumed I was incapable of participating in my own review yet with a 180 degree flip she decided my functional capacity had improved enough to justify cutting my existing support. It makes no logical sense! If this is the best she can do, is she really suitable to be a delegate? I don’t think so.

4. What consequences are there for delegates when they demonstrate a pattern of producing critically inferior work that negatively impacts on the lives of the participants they assess? Do they receive feedback, more training, mentoring, deployment to another area or are they allowed to keep on being incompetent until someone like me puts in a formal complaint about their performance and conduct?

5. Why did the NDIS agree to reassess Delegate N’s plan so quickly? Alarm bells were obviously rung within the NDIS when I reported what had happened with my review and plan because they organised the reassessment within 10 days without me sending in any paperwork. Had other participants experienced similar issues and also complained about Delegate N or did the NDIS realise their strategy of participant-free reviews was resulting in terrible plans requiring an overwhelming surge of requests for reassessments?

6. No further reports about my functional capacity were submitted for the May 14 reassessment. Delegates S and N had access to exactly the same written information yet they approved vastly different plans. How is that

possible? There are only two variables. The first is the face-to-face meeting. I never spoke to Delegate N but spoke for an hour with Delegate S so perhaps what I said to her explains the vastly different support budget.

The other more obvious variable is if my reports were read. I don’t believe Delegate N read any of my reports

but I know Delegate S did because she referred to information in the reports in our conversation. Reports form the evidential basis of a review. Delegates never speak to practitioners so it is essential that all submitted reports are read, understood and considered by delegates as the starting point prior of the review. The NDIS system allows delegates to make life-changing decisions without any checks that ensure reports have been read. Surely it should be compulsory for all delegates to read all reports all the time!

Conclusion

My plan is for three years.Hopefully I won’t need to go through this experience again. It’s too awful.