Inquiry into the Culture and Capability of the NDIS

Introduction

Thank you for the opportunity to have an input into the NDIS, and this matter has a significant impact on the lives of people with disability.

I am a young woman living in with ME/CFS (Myalgic Encephalomyelitis, a neurological condition) and newly accepted onto the NDIS after submitting my second access request. The entire process of getting onto the NDIS was unbearable and inaccessible for me – and the foundation of a previous submission to this enquiry. However, becoming a new participant has exposed me to a whole new range of problems regarding the culture and capability of the NDIA and its staff and processes, on which I am now writing.

Unfortunately, at a time when I should be excited about finally (potentially) having the supports to live a life free of neglect and psychological abuse (directed at my disability), and hopefully even start to realise my life as a person beyond just a disability, the joy and relief of finally receiving a NDIS plan was combined with anger and frustration at the way my LAC had treated me, and various other processes that have, from the very beginning, denied me choice and control over decisions that impact my life.

The awful part is, without the resources of advocacy/disability bodies, who have put together tip sheets on starting on the NDIS and what to expect, I may never have even known that from the beginning, I deserve and should expect better from the NDIS than how my LAC has treated me.

Recommendations

1. Priority system so that people experiencing neglect, abuse or other risks to their health and safety such as homelessness, can have their plans and other decision-making processes seen to as a matter of urgency. A lot of disabled people rely on the NDIS to find them suitable housing – do we really want disabled people facing abuse to have to wait 1+ years because the process is just so slow? (And I’m talking specifically about the process, as opposed to the lack of disability housing, which is a separate issue).

2. Adequate funding for agencies that do the planning process (LAC’s) – so that LAC’s have time to assist/explain things to participants, as opposed to doing the ‘bare minimum’ to push a plan through and have as little contact with and care for the client as possible. improvements in training and guidelines are needed. (Are there are adequate guidelines already for conducting a planning meeting? Is the problem LAC’s are poorly trained or don’t follow guidelines or that the guidelines themselves so poor?)

Term of references

a. The capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment.

A friend of mine, also new to the NDIS, defined LAC’s as ‘overworked and underpaid’. I don’t have the capacity today to research and verify this statement, however if true, it would absolutely explain the lack of a proactive, helpful attitude from my LAC, errors in her work and a general sense that her job is to churn out a plan - as opposed to try to explain anything or provide information. Another defined LAC’s as ‘generally lazy’. Sadly, from my experience of the planning process, I now agree.

I have little faith that reporting her work performance would result in any change, especially if, as I’ve been told from the experiences of so many others, the problem is a systemic one - however I am considering it. My experience with my LAC, which is unfortunately consistent with experiences of other people I know on the NDIS – is that they are not proactive. You need to be ‘chasing them up’ to get the absolute basics of what you need (even if it’s something vital – like the breakdown of what they decided to put on your plan). The onus is on you, which is a lot, when you are the person with a disability.

Examples:

• In my planning meeting, I didn’t realise that the LAC knew nothing about me or my impairments until it became known at the end of the appointment (and only because I was told to ask if my impairments were correctly recorded on their systems – the answer was a no). I hear this is common LAC practise. However, the reason this is shocking is because if I’m having a conversation based on what supports I need (and she’s disagreeing with me) – then what exactly is she basing her disagreement on? A stereotype or clichéd opinion of my disability?

• LAC was not able to provide basic, key information that would help me decide on a question that she was putting to me in planning meeting. For example, I was struggling to decide on whether to self-manage parts or all of my ‘Core’ funding. Had she simply said that to manage part of Core funding by ‘self management’ and another part by ‘plan management’ would significantly reduce flexibility - I naturally would have picked one or the other. It shouldn’t be up to other people with disability in support groups to communicate vital information to me.

• Rarely responded to emails or calls (and I was only trying to do the bare minimum to get through this process, I wasn’t exactly hounding her).

• Avoided my calls for a week after my planning meeting had already been delayed, resulting in me having to wait even longer for my planning meeting. When I asked her about this she said “Oh, I didn’t think it would matter to move the meeting earlier. Apparently, people experiencing neglect (which is known to her) are not in urgent need of the assistance that comes with being on the NDIS.

• Said that plan would take five days to complete, three weeks later I was still waiting

  • aka poor expectation management.

• There are instances where I believe my LAC has lied to me or said something misleading or unethical to explain why she hadn’t completed a certain task. For example, when I was shocked that she had none of my impairments on file she said that her agency only looked at them on a ‘need to know’ basis - and gave the strong impression that there was no reason for them to ever access information about me. It wasn’t until I stumbled across something on the NDIA website that I realised this was misleading.

• I asked for time from my LAC to decide on how I wanted transport funding paid. When I emailed her my decision, she had already decided for me (instead of just picking up the phone to check). In that email, she didn’t even mention that my plan had already actually been finalised. I realised this when I got my plan in the mail and the date the plan was active from was PRIOR to the date I’d emailed her. During these interactions I had no idea my plan had already STARTED.

• She didn’t give me an option to get the plan by email, so I had to wait for it to come in the mail. According to a guide from a disability organisation, its optimal to ask for it over email, so that you can get started on organising your supports. Also, in the year that is 2022, everyone needs a digital copy of everything anyway. Another choice that was made for me.

• I didn’t get a copy of the ‘breakdown’ of funded supports which is provided over email until I asked for it (again, weeks after my plan had started). If I’d had not known to ask for it - would I have received one at all?

• The registration/online portal is still down for Tasmanians after a system change, so I haven’t been able to log into anything. The 1800 number couldn’t help, and my LAC washed her hands of helping me as she didn’t know and was going on holidays. I have no idea how or when this will resolve itself - and neither does anyone else.

• Spelling errors in my plan, repeated, as so much of the information was copied and pasted. My LAC is university educated. Also, worth noting that for people with certain disabilities, spelling errors could cause a lot of confusion or prohibit them from understanding their own plan.

• She didn’t offer to explain anything in the plan, at all, or even if there’s anything that wasn’t funded in the end.

• If I feel like I’m a complete inconvenience to someone, I clearly won’t feel comfortable asking them questions. Again this is compounded when you consider that so many types of disabilities already make communicating with others difficult and we should not be creating an environment where they feel like they can’t ask for help.

• The Tasmanian online system changed and no one, including my LAC or the 1800 number or NDIA webchat service, knows the solution to this yet so I haven’t been able to login to the portal so far.

I don’t capacity today to go into my plan or where it fell short. Suffice it to say, I would have thought that anyone who had no access to healthy meals or meal prep, and told the NDIA that they were experiencing neglect, and that this was their urgent priority (healthy food), would have been granted meal preparation. I will unfortunately never know why I was not granted this. Given that I’m a near-bedridden person, I assume that the 2 hours per day of support work that I have is not going to cover the meals I need either.

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.

The impacts on my life in the very short time I’ve been on the NDIS I would say have been:

• Delays in starting my plan and being able to get the supports that I urgently need (through LAC not returning my calls to move meeting forward when she mentioned an earlier time opening up).
• That awful feeling of ‘if I’m not advocating for myself, I will get taken advantage of/not get a fair plan/ things won’t get done in a timely manner’ – something which people with disabilities have probably experienced for an entire lifetime prior to actually entering the NDIS – which is supposed to help them!
• Feeling that yet another system is not here to ‘help’ me.

I would never want to be in a planning meeting again without an advocate.

Thank you for reviewing my response and for the wonderful work you are doing in this inquiry.

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