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Submission SUB-B3B9-003564 (Elizabeth K. L)

Submission reference
SUB-B3B9-003564
Individual's name
Elizabeth K. L
Submission type
10 areas for improvement
How can we empower you through the planning process?

Ensure sufficient support coordination
provide planners that have an understanding of mental illness- as was promised but never happened
Entrenched discrimination and a commitment to denying people with complex mental illness to the NDIS and then their plans. The NDIA has from the outset done everything it could to ensure people with chronic complex mental illness were blocked from accessing the NDIS and then their plans.
People have an expectation that Government Departments are there to help us not to actively try and hurt us especially if people are vulnerable. The Department of Human Services with the Robodebt and the NDIA have proven what a totally naïve and dangerous expectation that is.
The entrenched discriminatory practices NDIA resulted in David Harris dying alone with his supports cut off, with no food in the fridge and being found dead two months later. The behaviour precipitated child abuse after the NDIA’s incompetence caused a person with mental illness to unravel.
The NDIA has always relied on people with a mental illness to be too disorganised or paranoid to be able to submit an application in the first instance. The NDIA has also always relied on wage theft to fund its services in particular the Support Coordination for people with chronic complex mental illness.
Support Coordination has been chronically underfunded for people with chronic complex mental illness. The NDIA allocates a starting point of 40 Support Coordination hours knowing the starting point is 60 hours and capping the funding at 104 hours with the providers having to make up the shortfall which can be in excess on a further 100 hours depending on the complexity of the person’s presentation.

Specialised Support Coordination is expected as a routine for this cohort but I have never seen it funded and the less expensive Support Coordination is routinely underfunded and expected to be provided for free.

This is just a rort and wage theft. The NDIA is supposed to allocate funding according to need NOT providing the one size fits all approach which takes away any pretence of choice and control for people with chronic complex mental illness. The NDIA relies on the vulnerability of this cohort and the inability of this cohort to engage with bureaucracy at the best of times.
This behaviour of the NDIA which is designed to prevent

What is the best way to provide supports for those not in the NDIS?

Targeted state funding.

Making access to psychologists free

How you would define reasonable and necessary?

what you need because of your disability - not what you want but what you need.

I look after a person who has delusions that someone will die if they touch anything dirty - as a result they live in squalor between the NDIS funded cleaners visits.
I have looked after people who are so mentally unwell they were unable to clean up after themselves and yet they were evicted from public housing to live under bridges or in the local caves. Cleaners can make the difference between the ability to maintain a tenancy or not. Homeless people cost an enormous amount of money and research has shown that it is way cheaper to house people than neglect them into homelessness - cleaners are way cheaper than the alternatives - the cleaners are reasonable and necessary.

Funding psychologists for people with mental illness which helps manage psychotic thoughts is again way cheaper than the cost of even a short hospital admission. The psychology allows the person to manage their tormenting voices and address other distressing symptoms such as paranoia and delusions.This is evidenced based. This is reasonable and necessary.
Preventing hospital admissions by helping people manage their tenancy and manage their mental health benefits both the person and the taxpayer. It reduces trauma and helplessness and despair.

reasonable and necessary - what is needed to mitigate the functional deficits of the disability to optimise outcomes.

How can the market be better designed, structured and supported?

Working with people with mental illness comes with very difficult behaviors.
It takes special skills to work with people with mental illness.
Insufficient support coordination to deal with the issues that arise from mental illness and those providing the services.
People with mental illness are subject to a lot of discriminatory attitudes and can be difficult - why would someone want to work with someone with a challenging mental illness when there are easier options.
The staffing shortages are an issue and the qualifications of the staff are an issue. Untrained staff require a lot more input than qualified staff and the NDIA simply expects this work to be at the discount rate or for free.

Solution - value the qualified staff and support them - the NDIA could start by not ripping us off for thousands of dollars

How should outcomes and performance be measured and shared?

This is fairly easy for me. As a professional I conduct a thorough history at the outset then build the plan from there. You have a baseline from which to build. I have required a professional report at the end of each incidence of service which monitors what is happening and provides indications if things are stable or if things need some proactive intervention. The reports help monitor how other services are being delivered. I do regular home visits - if someone is very vulnerable this can highlight any problems with service delivery- think of Anne Marie Smith - a home visit and a quick assessment would have indicated the care was inadequate. I had a similarly physically vulnerable client and things could have gone wrong and quickly. I visited the person monthly to ensure the care being provided by NDIS funding was being delivered and the person was being looked after appropriately.
The oversight also ensures that the money allocated is providing benefit for the participant and the NDIS.

Outcomes need to prioritise the safe delivery of care. In the case of Anne Marie Smith measuring outcomes would have included a pressure area check once a month.
Care needs to be documented to deal with the person's needs and this needs to be standardised for each person.

Performance - were the needs met. What is the goal- eg a comfortable life, a comfortable death. Is the person stable and not being hospitalised so that they can do things that make them happy. It has to be person centred and person specific.

How would you build better outcomes or goals into your plan?

My focus is to maintain the persons mental state so that they can do what makes them happy. The long term goal is stability and everything else is built on this.
Trying to get past planners with no understanding of mental illness makes planning difficult.

What does good service from someone helping you navigate the NDIS look like?

The NDIA does not want people with mental illness to access the scheme and has done everything they can to prevent people getting in then trying to prevent them accessing their plans once they do get in. The NDIA uses people's mental illness against them eg David Harris who was tossed off the NDIS because he was unable to meet NDIA demands on his own. David was left to die alone with no food in his fridge and with no supports and found dead two months later.
People with chronic complex mental illness struggle to get by. Expecting them to turn up and deal with the NDIA is unreasonable let alone with no support . I have had people who will come to the meetings with me and the NDIA but will get up and walk out because they can't cope due to paranoia, psychosis, delusions.

It would be nice if the NDIA wasn't set up to obstruct people. My colleagues and I approached the NDIA with an absolutely naive idea that the NDIA was there to help. Years later and that crazy notion has gone. The NDIA tried to starve a client to death, tired to tell us repeatedly telling us that schizophrenia wasn;t a mental illness, tried to stop a person accessing their plan for 13 months and precipitated child abuse. The NDIA has absolutely NO integrity. The NDIA have lied and traumatised people so often and for so long I don't trust them and I don't know anyone that does.

Good service would be admitting when they make a mistake and fix it, Showing professional courtesy. Paying their bills and not routinely expecting people to work for free. Comply with the Code of Conduct which they don't and this is from the executive down.

Dealing with the NDIA is a nightmare and always has been.

How should the safeguarding system be improved for a better NDIS?

The NDIA is run in the same way as aged care - what could possibly go wrong.

The NDIA under funds support coordination which is a critical safeguarding point.

The NDIA expects unqualified people to deliver professional care with no supervision - <redacted>.

People need to be safe guarded from the NDIA -redacted>., redacted>., redacted>., the child they put in harms way, the person they told to prove they still had no legs, the person they told to prove they still had Downs Syndrome, the people they left in hospital beds for up to 18 months ............