JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME

General Issues

6 May 2024

This submission will focus on:

• The streamlined planning process currently being used by the NDIS that allows delegates to “build” altered plans without a review meeting or ever speaking with the participant.
• The consequences this process had on me and the practitioners who support me.
• The detrimental ripple effect this planning process must be having on the efficiency of the NDIS.
• Systemic issues still within the NDIS despite a decade of investigations and recommendations.

INTRODUCTION

Every planner I’ve had since 2018 has been incompetent, failed to follow the stated process and made errors in my plans. Other participants I know may have had one terrible plan review but few have had the bad run I’ve had. All my plans have needed to be reviewed and amended effectively doubling the NDIS’s workload and resulting in months of harmful interactions that make my already compromised life more difficult. It’s disheartening that the professional standard of planners and the process continues to be problematic and unsupportive for me.

Lack of knowledge and stigma regarding psychosocial disability within the NDIS means it’s likely planners view me as less deserving of NDIS support. They routinely ignore reports and make ill-informed decisions that demonstrate no knowledge of the unique way autism and psychosocial disability impact on all aspects of my life. The NDIS are supposed to consider how the total disability impacts on the participant’s functional capacity and not use categories like primary and secondary to limit supports but they still do. My psychosocial disability is funded as my “primary” disability yet the impact of autism is ignored despite it being the root cause of my psychosocial disability. It is impossible to dissect out what impacts on what my functional capacity is enmeshed in me as one person with disability.

There’s an alert on the NDIS website - “We are experiencing a high volume of enquiries and requests. The NDIA apologises for any delay.” This is an understatement! There is a huge backlog and massive delays for plan reviews, eligibility assessments, complaints – the lot! The NDIS is struggling with inadequate staffing, competency levels and meeting the professional standards, timeframes and commitments in the Participant Service Charter. I am not responsible for any of that yet I’m suffering the consequences. Every time the NDIS screw up a plan review it severely impacts my life. I am sick and tired of the NDIS’s inability to provide me with a safe standard of care during the plan review process because of ongoing issues within the agency. After a decade of operation, many reviews and recommendations many people report steady improvement in the NDIS but I can’t see it in my experiences. Interaction with the NDIS during and following plan reviews continues to be a major stress factor in my life. The NDIS strips me of everything. Writing of my experience helps me regain some power and hopefully provides first hand experiences for the committee to consider.

FEBRUARY 2024 PLAN REVIEW

I was very anxious when my three-year plan ended in February 2024. Despite “An NDIA representative will contact you about your plan review before your plan review date” my plan expired without any contact from the NDIS. I rang the national contact centre and was told there were considerable delays because the NDIS were overwhelmed and running months behind. My plan was automatically extended for 12 months. How is this an accepted operational standard for the federal disability agency? Everyone interacting with the NDIS has no choice but to accept the reality that the NDIS cannot keep up with demand. I see no evidence that government decision makers consider the effect this repeated system failure has on participants, carers, family and service providers who are kept in a holding pattern for an indefinite time waiting anxiously for the NDIS to catch up. We are powerless, can only suck it up and wait.

Communication with me

In late February I received a call which I ignored because I thought it was a scam. Minutes later I received an “arse covering” text so I knew the call was from the NDS and the person who’d rung me had ignored the communication directive of “No cold calls” on my file. The NDIs routinely disrespect my communication needs demonstrating a continued lack of disability and trauma training and no understanding that the directive is for my safety not their inconvenience. I reported the noncompliance to the NCC.

The employee called again. In the ten-minute slot between text and call, I was expected to drop everything and be available to answer a call without knowing what it would be about. I should never be put in this position. No government agency should call vulnerable people unless they provide fair warning and reasons for the call prior. The Royal Commissions into Robodebt and Disability made this point. The NDI continue to use surprise attack style communication knowing this disadvantages and harms people with disability particularly those with autism and psychosocial disability. Communicating in such an unreasonable and unsafe manner demonstrates the fundamental power imbalance that still exists between the NDIS and participants. Services Australia manages their calls respectfully so there is no reason why the NDIS can’t.

The NDIS demonstrate their culture of arrogance by assuming their time is more valuable than anyone else’s. The expect participants, support coordinators, carers etc. to be available when they choose to call. There is no acknowledgement that there are hundreds of reasons why people don’t or can’t answer calls. I was driving to an appointment on a busy highway with nowhere safe to pull over or time to answer the call. I was alone and had no-one to witness the conversation or provide support. Under these conditions I chose not to answer. My right I believe! As this has happened before it’s clear the employee aimed to catch me off guard and conduct a plan review without my knowledge or consent. This is abusive conduct.

Plan review without me

When I did not pick up her call in the eighteen minutes she’d allocated to me, the delegate made no further attempt to speak with me. The planner then rang my support coordinator who came out of a meeting to take the call. At no stage during the conversation did the employee disclose she was a delegate or that the purpose of the call was to conduct a plan review. The delegate’s conduct was dishonest and deceptive. My SC answered questions believing she was having a preliminary discussion with a planner prior to my upcoming planning meeting. The delegate went on to devise a plan based solely on this sneaky five-minute conversation with my SC.

Common sense (and the website) indicates it would be important to speak with the participant at the end of a three-year plan to assess how the plan worked and if their needs have changed. This delegate threw caution to the wind and chose not to speak to me. She denied me the opportunity to participate in my review, ignored me as a person and silenced my voice. I believe the delegate’s behaviour constitutes serious misconduct. I have put in a complaint. Will my concerns be investigated and the delegate be held to account? No chance!

THE DELEGATE’S PLAN

In March a new and changed plan appeared in mygov. I was shocked, bewildered and very distressed. Everything fell into place! The planner who’d spoken with my SC and the delegate who wrote this plan were one and the same person. The brief conversation between the delegate and my SC was my review and this plan was the result. My initial thought was because my SC is also my nominee maybe the delegate decided to listen to what my SC said about me instead of speaking with me. I’d not understood all the fine print in the T&Cs about the nominee’s role. Naively I assumed it was to support me to negotiate the intricacies of the NDIS. I felt excluded because I’d fully expected to participate in this review like I had every other time. Although I have disability, I have capacity and do not need anyone to speak for me.

For years I have been angered by the mismatch between the NDIS’s words and actions. Consider these few quotes about plan reviews taken from the NDIS website.

• “The NNDIS puts people with disabillity at the centre of deciision-making, through the principles of reasonaable and necessary supports and individual choice and control.”
• “When we do a plan revieew, we’ll work with you to create and approve a new plan.”
• “Usually we’ll do a plan reevlew either in person or over the phone. It depends of what suits you best.”
• “We will ask questions abouut how you are going in different areas of your life. This will help us develop a plaan that provides the right support for you.”
• “Attending a plannning meeting, either in person or over the phone is the best way for us to gather all your information so together, we can develope the best plan for you.”
• “Remember, during yuor planning conversation, …”

Participant Service Charter and the United Nations Convention on the Rights of Persons with Disability

as it offers no choice and control, does nothing to support participants and causes harm. Every participant impacted by this strategy will face uncertainty, the stress of further interactions with the NDIS and longer delays in getting a workable plan and appropriate supports.

Systemic issues with the plan

1)

The NDIS website states, “When you ask us to update your goals or the information about you, we’ll replace your plan with a new one.” My SC provided the NDIS with updated personal information prior to the phone call and plan. Instead of including that information in the plan, the delegate re-used word for word outdated information from my 2021 plan. The 2021 planner did the same, copying outdated and incorrect personal information from my 2018 plan. I feel I don’t matter as a person to the NDIS because that’s six years of planners systematically failing to ensure the accuracy of the personal information on my plans. An NDIS plan is an official government document and there should be a duty of care to ensure all information is correct. Lazy staff or a technical system that allows the automatic copying and churning out of outdated incorrect information from previous plans is unacceptable.

2) Despite, “We considered all the information you provided …”

there is no evidence the delegate read or paid any attention to my reports - an issue highlighted by participants for ten years. Within days of the plan arriving in mygov, a letter from the NDIS stated my plan would be reassessed because they’d become aware of changes to my functional capacity. If that’s true, the changes in my functional capacity must have been in my reports. The delegate failed to notice the changes noted in my reports because she never read them! The letter from my psychiatrist stated my current plan was appropriate, I’d been stable for three years with the support of my psychologist and emphasised that previous and frequent plan reviews caused significant distress that destabilised my mental health. It is common knowledge that the NDIS routinely disregard doctor’s reports but this delegate ignored all my psychiatrist’s advice demonstrating a negligent disregard for my well-being and safety. The delegate has exposed me to further harm because she knows it will take months to sort out the mess she created. Despite all my reports stating that psychology is what best supports me, the delegate cut that by two thirds. I don’t “choose” psychology as a preference. Throughout my lifelong lived experience of my disabilities, I know psychology helps me. That should count! My package is small. It only covers critical supports and I’ve never had the level of support I need to thrive so cutting psychology was not a financial decision. The NDIS are all about “recovery” yet this delegate cut what keeps me well and functioning. For someone like me with two mental illnesses, recovery in the usual sense of the word is impossible. Recovery is maintaining my physical and mental health in order to live a life more like that of people without disability. Limiting my access to psychology will negatively impact my health and quality of life, decrease my ability to look after myself, voluteer, leave my house and go into the community and increase the risk of hospitalisation and suicide but obviously the delegate didn’t care about any of that. This is a stupid and spiteful bureaucratic decision based on the NDIS’s long-held belief that psychologists cost too much and should be funded by the health system. I shouldn’t be punished for that particular political football. The NDIS have long-held irrational and delusional belief that occupational therapists are miracle workers who can “fix” psychosocial disability and autism. Having drunk the kool-aid, the delegate included OT in the plan without anyone requesting it. I do not want OT because it does not support my individual needs. Even if it’s in the plan I will never use it so what exactly was the point of including it? Only a stupid, poorly trained and inexperienced delegate would make such a useless decision.

Consequences

1)

The delegate failed to consider me as an individual as I had no choice and control in regard to the plan. The NDIS Act states people with disability should be involved in decision making processes that affect them but I was gagged. How the delegate treated me does not reflect “improving the agency’s approach to psychosocial disability.” Like many NDIS employees the delegate was detached from the fact that there’s a vulnerable person with disability behind every interaction she has. To her, I was simply a number and another review to

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conclude as quickly as possible - a box to tick. The consequences for me were ignored and my life was abruptly thrown into chaos. I have endured months of unnecessary stress, additional paperwork and processes full of difficult interactions with the NDIS/A and nothing’s happened yet! As I had no input into the plan and of course no draft was provided, I have an unsuitable plan I cannot use because I am too shattered to attend appointments, engage with my coordinator and support worker or leave home except for essentials. Great result NDIS!

2. The delegate’s actions created stress and additional work for my support coordinator. In the first six weeks of the plan my SC used 19% of my two-year budget following up with the NDIS to sort out the dud review and plan. This has already been flagged by my plan manager as unsustainable. My SC spent hours waiting for the NCC to answer – all charged to my plan! One call was cut by NCC staff because they said my SC couldn’t prove her identity. When she did speak to someone, she was fobbed off with “the reassessment of my plan is a priority” even though we’ve still heard nothing two months later. I’ve told her not to phone the NDIS anymore. Tax payers’ money and my SC budget should not be spent on fixing errors made by delegates. The funding is supposed to be spent ensuring my plan is working and to assist me to access the community, improving my social isolation and quality of life.

3. My psychologist and psychiatrist feel that despite their understanding of me as a person and their extensive expertise, their opinions were dismissed by someone with none of their skills. The delegate made decisions about me based on her own “expertise” and the end result is she has screwed up my life. The hard work my practitioners and I do has been washed away by this debacle. Any dunderhead can see I will now need increased time, resources and money on the recovery I didn’t need to have.

4. Days after I received the plan, the NDIS sent me a letter saying the delegate’s plan was going to be reassessed. By her actions this delegate created more work for the NDIS. No wonder there are backlogs if reviews and plans are continually needing to be redone. The NDIS only decided my plan needed reassessing after I put in a complaint and went into an office. Instead of the NDIS stating a review was necessary because the delegate screwed up, the reason provided was a change in my functional capacity. The letter said I would be contacted “within 14 days to arrange a plan meeting.” That timeframe has long passed. It infuriates me to constantly read communication that fails to explain the situation in honest and transparent terms. Why can’t the NDIS make their communication more realistic, flexible and truthful? The “14 days” could have been edited out by … gee I don’t know … a human being and replaced with a transparent and truthful statement like, “We have a backlog at the moment and will contact you as soon as possible to arrange your plan meeting. It may not be for several months.” NDIS communication is so robotic it’s impossible to adjust it to honestly reflect different or changed circumstances.

Due to the backlog blowout, I have no idea when this reassessment will be. The stress and anxiety of waiting hangs over my life making it impossible to do any of the things I’d usually be doing. I don’t know whether the NDIS think my functional capacity has increased or decreased. I don’t know how to prepare for the meeting as the only information provided is, “…please make sure you have relevant information about your current disability related supports, how well they are working for you and what changes may be needed.” Silly me thought the reports already submitted did just that! I’m anxious about what they’ll ask me, if I’ll get an even more incompetent planner, have my supports cut even more or even be removed from the NDIS. Due to stigma and ignorance within the NDIS towards autism and psychosocial disability, how I present in a meeting will be misunderstood because I look kind of normal on the outside. It will be assumed that I couldn’t possibly be as disabled as people with obvious visible disability.

5. The complaint I submitted two months ago is still unaddressed by the NDIA complaints branch. The twenty one day timeframe has long passed but the, “ … however it may take us longer where the complaint has multiple or complex issues“ gives the NDIS a get out of jail free card to do absolutely nothing indefinitely. Even if the complaints branch contact me, past experience tells me it will take a year to negotiate a resolution. The NDIS will pretend they don’t understand, fail to follow their own process, fob me off to the Commonwealth Ombudsman who will quickly handball it back to the NDIA in a neat little merry-go-round of uselessness. I rang Mr Shorten’s office but the call was redirected to the NDIA. His staff were more than keen to listen when

Mr Shorten was the shadow minister.

Referring people back to the NDS is the same as police policing police. It doesn’t work! I am completely stymied and powerless to do anything except put my life on hold and wait.

6. The delegate’s plan meant I had to re-sign all my service provider agreements. I will have to do that all over again after the plan reassessment. Inefficient, stressful and frustrating!

7. The futility of failed planning processes like mine has consequences for the NDIS by adding to an already unworkable backlog, overextending a critically short workforce who need to expend additional time, resources and money re-doing reviews, reassessing inappropriate plans and dealing with complaints. Systemic bad planning processes significantly contributes to system overload and failure.

MY EXPERIENCE AT NDIS HEAD OFFICE

After receiving the plan and working out what had happened, my SC and I went to my local NDIS office. The NDIS website states, “We have a ‘no wrong door’ approach for how people contact us and we welcome all feedback, including complaints and compliments. We are committed to improving our service by listening to those who share feedback. You can make an enquiry, provide feedback or raise a complaint … In person by visiting an NDIS office.” In subsequent communications, NDIS management made reference to my “presentation to head office” as if I made a deliberate and confrontational decision to go “to the top.” As head office is the only NDIS office in my area and the website states I am able go to an NDIS office for help, comments about me “presenting” to head office is victimisation.

I spoke to reception staff stating I needed help because the planner never spoke to me then sent me a plan I wasn’t happy with. The staff seemed surprised and amused to see a participant in head office. It was made clear we were unwelcome and intruding on their workspace and activities. One staff member avoided contact altogether and the one who spoke with us had attitude. Although the staff member appeared polite, smiling and saying she would help, she was not sincere. I’ve been into NDIS offices at other times and experienced similar behaviour. This manner of interaction seems the accepted standard for NDIS reception staff and indicates a lack of training, compassion fatigue or an accepted culture of treating participants as the enemy.

There was a significant period of obstruction, gate-keeping and stalling tactics like tapping away on a computer, reading my file, excuses like there’s no-one in the building I could speak to, they can’t leave reception and the computer system is new and she couldn’t find anything. The excuses were implausible and none were remotely related to why I was there or kept standing in reception. The staff member was clearly exercising her need to have power over the interaction and wanted to frustrate me into leaving or find an excuse to call security. The longer I stood there the more embarrassed, distressed and disrespected I felt. This is not how people should be made to feel.

My support co-ordinator and I both stated several times that reception was not a suitable space for discussion because it allowed me no privacy but this was ignored. I felt threatened and unsafe being asked personal questions in such an exposed area. Perhaps all employees were working from home that day but eventually someone was found in the six-level multimillion dollar building to stand in at reception and reluctantly we were moved to a private room. The staff member remained arrogant and condescending and directed her eye contact and conversation to my SC. I felt invisible and disrespected. My SC told me afterwards she felt extremely uncomfortable being deferred to at my expense.

I thought red flags would be raised about how my plan review had been conducted but at no stage did the staff member express any surprise or concern about that. It was as if failing to speak to the participant was an acceptable, common and insignificant issue. The staff member smugly commented several times that I knew my rights as if that was a crime or a sign of being a difficult and unreasonable participant. In standing up for myself, asking for my voice to be heard in my review and calling out the misconduct of the delegate incredibly the staff member viewed me as “the baddy” in the scenario. She may prefer dealing with participants who are ignorant of their rights, never question anything, always accept unsuitable plans and don’t have the audacity to go into an NDIS office for help but I was angry she felt entitled to say that to me especially as I know for certain she wouldn’t accept the same treatment herself.

FEEDBACK TO DELEGATE

The National Contact Centre (NCC) Staff Member’s Behaviour

The staff member kept pointedly asking me if I wanted her help as if she was bestowing a great gift or favour on me for which I should be grateful. She completely missed the fact that it is her job to help me. Eventually her attitude and behaviour changed and improved. She told us what action she was going to take in a clear and business-like manner which I appreciated.

People expect reception staff everywhere to be welcoming, friendly and helpful. The NDIS are not exempt from this expectation and in fact their staff should be held to a higher standard as they might be the first point of contact for a participant who needs help. The privacy of people coming into NDIS offices must be better respected. Participants will likely be upset about an issue that is important to them and this needs to be validated and respected, not smirked at. NDIS staff need to remember all participants have disability. Some participants with invisible disability may look like all is fine on the outside and although not obvious, their disability is real just the same. If the NDIS says participants can come into an NDIS office in person then it must be accepted and expected that people will come in. Staff must be trained to handle interactions appropriately and respectfully with compassion and kindness.

After we left I became very distressed as this interaction failed to “improve my experience as a participant.” The staff member’s behaviour demonstrated no understanding that I was a person with disability or that she works for the NDIS. Throughout the interaction she offered no kindness, ignored my obvious distress and failed to express any concern for my well-being. It was an uncaring response to a reasonable appeal for help. In subsequent conversations with an NDIS team leader my SC provided verbal feedback about the privacy issue and the way the staff member spoke to us. I have done that too but in writing. Will the NDIS respond to my feedback? Still waiting!

FEEDBACK TO DELEGATE

The NCC said I could email the delegate through my SC. Naturally I am forbidden the name and contact details of the person who made stupid decisions about my life. I wrote an honest and factual appraisal of her performance, highlighted the issues I had with the plan and described how I felt. The NDIS were not happy and told my SC we should have submitted it through Feedback. Everyone knows Feedback is a futile exercise because nothing sent there gets anywhere! You receive a computer-generated response that does contain less useless information than it used to but it’s still drivel that tells you nothing except “…a notification has been sent to the most appropriate region or business area who will be in contact with you…” It suggests visiting the website to read about the NDIS’s “…commitment to service and feedback …” which I find inflammatory. It advises to call Lifeline if you’re upset which is handballing the distress they’ve caused elsewhere but ticks their box.

Information provided to Feedback never gets directly to the person it is intended for and who should see it. The NDIS protects the delegate from hearing directly from me but I am afforded no protection from her. She has all my details, can ring me without warning and give me a plan I won’t use yet I’m not allowed any conversation with her about anything. I hope the delegate learnt from my feedback because sure as hell she’s never going to hear anything about her performance from NDIS leadership. How is the NDIS ever going to improve if they steadfastly refuse to provide feedback to the people who need to hear it? No wonder performance levels don’t ever change for the better.

NATIONAL CONTACT CENTRE STAFF

Communication issues within the NDIS are systemic. I know the NDIS have received my complaint and feedback. Apart from generic responses, the NDIS have failed to communicate any information of worth about my plan reassessment, my feedback and my complaint. Keeping people in the dark about important aspects of their life is unacceptable.

The NDIS’s communication system is obstructive and unhelpful making it a dead-end for anyone wanting to contact the NDIS. There are only two choices - ring the NCC or email Enquiries or Feedback. Enquiries/Feedback often respond by telling you to call the NCC. People calling the NCC need to be clued up on the right words to use to get staff to email the NDIS and request a callback. If the NDIS bother calling back and for whatever reason the person misses that call, the NDIS never tries again. It’s a one strike and you’re

• out policy. People then have no choice but to ring the NCC again requesting yet another call back.

The NDIS can play this insidious game of chasey for ages. It is an extremely time consuming, stressful, frustrating and inefficient system for people trying to make contact with NDIS staff even when it’s for something minor.

The company who operate the NCC employs staff covering a broad spectrum of efficiency and competency so every time you call, the quality of the operator is a lottery. Even when I speak with a terrific operator they can’t actually do anything that is of any real help leaving me feeling cut off, desperate and without help which causes distress. NCC staff cannot transfer me to speak to anyone in the NDIS, organise anything, answer most questions, explain decisions, initiate processes or fix anything when it goes wrong. The NCC can only listen, put the reason I called on my file, read information from my file to me and confirm if something has been received. The only action they can take is to contact the “appropriate region or business area” requesting the planner, complaints team, whoever to call me back - which as already explained, is usually ignored by the NDIS. Based on what the NCC can do compared to Services Australia, it is a completely useless communication system.

Even though I understand their limited capacity to help I have made calls to the NCC lately. Most interactions were fine but those on March 18 were doozies! My first call went unanswered for 35 minutes. The female staff member could not understand my simple request - I’d like to know if my complaint has been received. She was talking nonsense so I asked her to repeat what she’d said. She giggled, said she’d had too much chocolate and then asked me to tell her again why I was calling. While she was tapping away on her computer, she said her hair was falling into her eyes, she couldn’t see properly and then she terminated the call. Perhaps she was working from home, multi-tasking, talking to me, eating chocolate, doing a home hair dye job or perhaps my question was too difficult. Whatever was going on, she wasn’t suitable for the job.

I rang back and my call went unanswered for another forty minutes. The male staff member said he couldn’t find my complaint but explained there was a new system and everyone was having difficulties with it. I replied I knew that. I said the timeframe for my complaint had passed and he said the NDIS could not meet any timeframes in the participant service charter at the moment. He asked if I realised how many participants there were in Australia and I replied that indeed I did because I was one of them. He said lots of people put in complaints so the complaints department was extremely busy and I’d just have to be patient and wait. He said everyone working for the NDIS were “just exhausted.” I said I was sorry to hear that but my sarcasm escaped him. He read some of my file out loud to me and chatted away about the pressures of doing a difficult job dealing with people impacted by backlogs within the NDIS system. As polite as he was, I did not ring the NCC to have that conversation. I rang to get an answer to a question which he could not provide because he couldn’t find it in the new system. It was there!

Afterwards I rang a friend and we laughed and laughed because what else could I do. Scream, cry for hours, swear, take Valium, email a politician, call the minister, ring the NCC back, submit feedback or better still put in yet another complaint? Tried all that! None of it works. My friend and I thought maybe it was a telephone skit for the Melbourne Comedy Festival which was opening soon but jokes aside, obviously these two calls were as substandard as you could get.

I waited 75 minutes that day for my calls to be answered. I rang with a simple question but lost the lottery by getting two staff members who were incapable of helping me because their sugar levels were through the roof, their hair was in their eyes or they were just too tired. If I hadn’t utilised my sense of humour I would have been extremely frustrated by these interactions and quite possibly tipped over the edge. The NDIS say, “… it is critical that the contact centre is able to provide fast, accurate and effective advice to callers” and “… in line with the NDIA’s commitment to continuously improve the NDIS offers participants a quality experience …”

I’d have to say FAIL for March 18.