A devastating account of the NDIS, shared at #AusVotesHealth

The implementation of the National Disability Insurance Scheme (NDIS) in Victoria had devastating consequences for many people who had previously relied on community mental health services.

During the #AusVotesHealth Twitter festival today, Dave Peters – @Dpeters1977 – shared some of the personal impacts of these changes (and you can also read more in this Croakey story from last year).

Moving from the strengths-based approaches of community mental health services to the deficit-focused approach of the NDIS was distressing, and “undermined the progress I’d made over the previous years and made me feel hopeless and desolate for the future”, he says.

Peters is an early career researcher with the Brotherhood of St Laurence and has been active in advocacy, research and service design within Neami National for a number of years as a service user of that organisation. He is also Co-Chair of the Equally Well Committee.

Dave Peters tweets:

I’m looking at mental health support within the National Disability Insurance Scheme (NDIS) and the situation in Victoria where community managed mental health services have been decimated with the roll-out of the NDIS and the impact this has had on service users.

In the recent past, Victoria had a range of mental health services available for people living with mental illness/distress. These services provided support to pursue a meaningful and contributing life regardless of the symptoms of illness/distress.

These were managed by non government organisations and were separate from Local Area Mental Health services run by the hospitals. These services had an open-door policy, whereby anyone needing support to pursue a meaningful life and to manage distress/mental illness could access support.

The introduction of the Mental Health Act 2014 allowed for a service in Victoria to provide intensive outreach support for people living with complex and/or enduring mental illness. This was called Mental Health Community Support Services (MHCSS).

MHCSS was designed to offer intensive support for people outside of clinical services to support them to live independently and to pursue goals in line with their values. The service was aimed to assist people to explore a meaningful and contributing life, with or without symptoms.

The MHCSS program was a State based service designed to assist people with more complex and intense support needs, and was in addition to the Federally funded PHaMs and Day to Day Living (D2DL) programs.

I accessed MHCSS and D2DL programs for years and this support allowed me to avoid hospital by providing me with the support and psycho-education to develop my own coping mechanisms outside clinical or medical support. This was based on the Recovery Model.

Approximately 13,000 people were accessing MHCSS (VIC) in 2016. Nationally, the Productivity Commission predicted that approximately 64,000 people with a disability resulting from mental illness would access the NDIS by full roll-out.

Program cut

As part of the funding agreement between the State of Victoria and the Commonwealth, the Victorian Government arranged to de-fund the MHCSS program and divert those funds to pay their State contribution to the funding of the NDIS.

This arrangement was part of the Coalition of Australian Governments (COAG) agreement. The agreement was that people previously supported by MHCSS would get access to NDIS without needing to go through the application process.

The MHCSS program offered support provided through community managed organisations such as Mind Australia, EACH, Neami National, Wellways, etc. and approximately 13,000 Victorians accessed these supports in 2015 – 2016.

In theory, the NDIS funds supports for people living with a permanent disability who are significantly impaired across one or more of the NDIS domains: mobility/motor skills; communication; social interaction; learning; self-care; self-management.

When mental illness was added to the NDIS Scheme, a new term was created to differentiate between people with a temporary illness and those with a lifelong condition.

Psychosocial disability is a term used in the NDIS to describe people who are permanently disabled because of their mental illness.

When the NDIS began rollout of the Scheme in 2016, concerns were raised about how it was going to work for people living with pscyhosocial disability. How do we access the Scheme? How could we articulate our needs and goals for the future when we’re potentially fighting to survive each day?

The COAG Agreement gave access to the Scheme for people who were accessing the MHCSS program. That only covered the initial access – you still need to show impairment AND to base your supports on goals to get NDIS funds in your plan.

Due to the episodic nature of the symptoms of mental illness, it is very difficult to anticipate and plan for support needs. This makes it very hard to build a plan in NDIS, as the whole scheme is designed to fund supports based on consistent, predictable needs.

The NDIS funds a range of supports and services which may include education, employment, social participation, independence, living arrangements and health and wellbeing. To get funds in your NDIS plan, you must demonstrate ‘significant impairment’ in NDIS domains.

The National Disability Insurance Agency (NDIA) has always maintained it is NOT designed to replace traditional supports provided by mainstream services such as hospitals, mental health supports, employment, housing etc.

So, the problem with de-funding the MHCSS program is that although those service users are guaranteed access to NDIS, the NDIS is NOT designed to replace those supports.

In other States, people using community mental health supports have continued with those supports as well as NDIS.

From best to worst

Prior to NDIS rollout, we had a system of supports here in Victoria that were the envy of other States. Now that community managed mental health supports have been de-funded, we have one of the worst State-based systems in Australia.

The Primary Health Networks (PHN) are funded by the Commonwealth Government and have been gradually increasing funding for small streams of specialist mental health services, and even though a majority of PHaMs & D2DL service users are likely to qualify for NDIS, these supports have been extended to June 2020.

Unfortunately, these supports are only available to people who are NOT eligible for NDIS supports. Despite the Productivity Commission predicting approximately 64,000 people with psychosocial disability accessing the NDIS at full rollout, many people are not applying or are being rejected.

This has created a huge gap in available supports, particularly in Victoria. Interestingly, Emergency Department (ED) presentations for mental distress have increased by roughly 20 percent since 2016 when the NDIS rollout began.

In 2017, 621 Victorians died by intentional self-harm. In 2016, 624 Victorians died by intentional self-harm. Nationally, 3128 Australians died by intentional self-harm in 2017, an almost 10 percent increase and the highest number in 10 years.

I believe the Victorian Government did the MHCSS service users a great injustice by de-funding that program in exchange for entry to the NDIS, but once that agreement was made, the Commonwealth Govt became responsible for providing supports to those approximately 13,000 people.

Workforce concerns

It’s also created a significant workforce issue, as the workforce previously providing the MHCSS have not transferred to NDIS due to a significant deficit in remuneration, as NDIS individual supports are less specialised than the MHCSS program and that’s reflected in the pricing.

In Victoria, approximately 900 specialist community mental health staff have been left to seek new employment due to the inability to be supported by the price structure in the NDIS based services, as those services are not specialised for mental health.

The loss of the MHCSS program has had a significant impact on the people who were accessing those supports. Many people have become isolated and haven’t utilised their NDIS funding due to the complexity of the Scheme as well as the lack of equivalent supports.

Some people have not been able to articulate their needs in the format required for NDIS plan management and funding, so have been incredibly disadvantaged and have come away with their needs unmet or with little to no funds in their NDIS plan.

Other service users from the PHaMs, D2DL and Partners in Recovery (PIR) programs have also struggled to access the Scheme. It was generally predicted that most of the people using those services would qualify for the NDIS, but in reality, only approximately 50 percent have tried.

Those that have applied NDIS, only one-half those have been successful in getting access to the Scheme, or 25 percent of the original total users of the programs. Large numbers (20 percent) are still gathering evidence to support their application and remaining have either not applied or are unknown

So overall, out of the total number of service users from PHaMs, PIR and D2DL, 25 percent have been successful in getting access to NDIS. Three-quarters have not.

There are also identified problems with the process, such as: proportion of people assessed as eligible lengths of time people had to wait for applications to be assessed length of time before those found eligible received their plan appropriateness of plans.

These are happening in every State or Territory, as there seems to be a real lack of understanding around what is psychosocial disability and how it fits into the Scheme, especially when compared to more physical types of disability.

Personal experience

Based on personal experience, I can confirm that my initial planner had no clue about mental health or psychosocial disability and, as a result, my plan was completely inappropriate, resulting in a battle to get a plan that meets my needs that is still ongoing 15 months later.

The Agency has announced they will be adopting a new referral/access pathway for applicants with a Psychosocial Disability. Announcement on 10/10/18 (World Mental Health Day) but still no word on what this will involve or when this pathway will be implemented.

Apparently, the Agency has been trialling a pilot of this pathway in 2 areas, which was announced late last year, but no outcome or even updated progress has been announced, nor any information given on what will be involved.

So far, the only thing I’ve managed to find out is the adoption of a new assessment apparently more appropriate for psychosocial applicants. This is the Life Skills Profile or LSP-16 or the Health of Nations Outcome Scale (HONOS).

Compared to the previously used World Health Organization Disability Assessment Schedule (WHODAS), this is probably an improvement as it actually does ask questions about self-care and emotional and behavioural responses, but it requires you to be assessed by a clinician to complete them.

This might be okay for those who have been hospitalised within the last six months or people with a regular psychiatrist, but for those accessing community supports only, they are responsible for paying a clinician to do an assessment and report to support their application.

It’s something not really talked about – the personal cost of dealing with the massive bureaucracy of the NDIS. Personal cost in dollars to pay for specialist assessments and reports (even with Medicare rebates, you’re usually talking at least $500 per Ax & Report).

Adding to stresses

The other cost is the emotional and psychological stress this process puts you through. I know of several people who have ended up in hospital (Mental Health ward) due to the stress associated with trying to access NDIS.

People using the Recovery model & most people working in mental health will be familiar with the strengths-based approach. A focus on strengths and capabilities, all the things they can do, the things going well. Easier to build on success than to focus on negatives when trying to get well!

So, we come back to that personal cost I talked about. It’s hard enough to access and navigate the NDIS without then needing to spell out all the ways your life is lacking!

Imagine coming from a community mental health service where you’ve spent time focusing on positives only to then focus on negatives – it sucks!

I spent 8 years getting support from Neami National to help me come to terms with my illness and to regain a sense of purpose in life, to make life worth living.

When it came time to do my planning meeting with the NDIS, I needed to show them all the ways my life sucked in order to get ‘reasonable and necessary’ funding in my NDIS plan.

I don’t think I can adequately express just how distressing that process was for me. It undermined the progress I’d made over the previous years and made me feel hopeless and desolate for the future.

To then turn around and get a plan that included ‘in kind’ support only, meant I was left with no supports at all.

Theoretically, the ‘In Kind’ supports were referencing the MHCSS program I’d been accessing for support. In practice, one the NDIS rolled out, the service withdrew from the NDIS market and declined to offer the same service for approxinately 50 percent of the cost.

Trying to talk to the planner at the Local Area Coordination Service (LAC) was hopeless. She had absolutely no idea that the funding for those services had been withdrawn in Victoria despite my telling her many times in the planning meeting.

Seeking alternatives was hopeless, as the services had either withdrawn from the NDIS market, declining to offer a lower quality service for the available NDIS price.

Trying to access similar supports from the remaining services was impossible, as everyone else was in the same boat!

Thanks for listening! @ACOSS has a great policy tracker, and despite promises from Labor to ‘fix’ the NDIS, we have yet to see a comprehensive plan on how it’ll work!

Read our previous stories from #AusVotesHealth Twitter Festival:

• Introducing the Twitter festival
• Powerful arguments for shifting health investment to the top of the cliff.
• Poverty is so bad for health, especially oral health!