Storm clouds over the future of mental health and disability services

Marie McInerney writes:

The mental health sector is in the midst of “a perfect storm” of change, as one speaker put it during the recent VICSERV #TowardsRecovery conference in Melbourne. This comes as the sector grapples with how to offer people with mental illness not just choices but control over their lives.

Mental Health Australia CEO Frank Quinlan told delegates that the system was in a period of “quite unprecedented change”, with the rollout of the National Disability Insurance Scheme (NDIS), the new role in mental health of Primary Health Networks (PHNs) and other reforms planned or underway in response to the National Mental Health Commission’s Review of Mental Health Programmes and Services.

While many of the major system changes underway, including the NDIS, are welcomed in the mental health sector, there is confusion over details and concern that many people with mental health issues could fall through new gaps in the system.

Some at the conference said the upheaval rivals the days of deinstitutionalisation, particularly in Victoria which has just emerged from much criticised recommissioning of mental health services and where there is also uncertainty about what of its mental health community support funds will be committed to the NDIS.

These concerns are only exacerbated by the uncertainty surrounding the policy outcomes likely to result from the July 2 federal election, and the marathon eight-week election campaign and caretaker period.

Despite all the planning for the NDIS, which on 1 July begins its full national rollout after three years of trials, the fate of some programs such as the Personal Helpers and Mentors (PHaMs) program is still not known.

(As a measure of ‘reform fatigue’, Victorian Alcohol and Drug Association CEO Sam Biondo told one session that when he started out in the 1970s, all he wanted was change; now all he wants is some stability).

“Some organisations don’t know what contracted services they’ll be offering on July 1,” Quinlan told Croakey in a follow-up interview yesterday. “That means uncertainty for their clients, people who rely on them, and also for their workforce who don’t know whether they will have employment in six weeks time.”

At the weekend Mental Health Australia released its election platform, saying the important reforms that are underway “cannot be forgotten during the current electoral cycle”. It is calling on political leaders for long-term commitment to:

• reducing the national suicide rate
• improving the physical health of people with a mental illness
• increasing employment rates for people experiencing mental illness and their carers
• increasing mental health consumer and carer participation and choice in national policy design and implementation
• maintaining current overall levels of investment in mental health, with measures that support full reinvestment of cost efficiencies and savings.

Mental Health Australia will produce a ‘report card’ to be released prior to the election, outlining the major parties’ response on these issues.

Meanwhile, just a few days after the conference ended, one of its speakers, Professor Jane Burns, CEO of the Young and Well Cooperative Research Centre, joined other mental health leaders in releasing details on suicide across 28 Federal electorates, calling on party leaders and candidates to spell out what they intend to do to address the rising toll of suicide and self-harm across Australia.

NDIS concerns

The mental health sector has welcomed the NDIS, saying a well funded and well run scheme will meet many needs.

But the numbers provide the context for some of the concerns raised at the conference: it is estimated that each year in Australia, there are around 600,000 people who experience severe mental illness, and 300,000 who experience severe mental illness with “complex inter-agency needs”.

By comparison, there are around 60,000 places in the NDIS for people with mental health issues.

VICSERV CEO Kim Koop said the conference message was: “The NDIS is a welcome addition to a contemporary mental health system but is not sufficient replacement for the current offering.”

She said Victorian community managed mental health services were “desperate for more information” about the NDIS.

But the State Government has an equal role to play, she said, pointing out that the bilateral agreement makes clear that the introduction of the NDIS is a shared responsibility between the States and the Commonwealth. “Both need to step up and provide information,” she said.

VICSERV has played a lead role in documenting the Victorian trial of the NDIS in the Barwon area, but is waiting to hear back on how its concerns will be addressed.

Koop said:

The NDIS is not a bad thing (for mental health).

The trouble is that the funding for the existing services is being transferred to the NDIS and that it is still very uncertain if the NDIS will offer a similar range of services.

At the moment it’s just really unclear. We’re waiting to hear from the NDIA (National Disability Insurance Agency) around the review of supports for people with mental illness but until that comes out, we just don’t know what kind of supports, what price they will be at, what workforce (levels) there will be required.”

Delegates at one conference session peppered a panel that included senior managers in the National Disability Insurance Agency (NDIA) about many details of the NDIS’s likely operation.

A delegate told the panel it had been great to have different trials conducted across Australia over the past three years but their different reports on different experiences have created “confusion and misinterpretation…trying to compare apples with oranges”.

Others expressed continuing concern about how people with episodic mental health issues would be included in a Scheme designed around permanent disability.

On markets and mental health

The session followed a keynote by UK philosopher Dr Simon Duffy raising issues such as citizenship and the need to focus on community rather than institutional and organisational interests. By contrast, the language of the NDIS discussions was all around markets, market failures, entrants and competition.

In an aside to me, one delegate questioned whether there is a “market” in people with mental illness.

Asked at another session whether there really was a “fair dinkum market'” for organisations to start competing in, National Mental Health Commissioner Rob Knowles said there wasn’t yet.

But he warned that one would develop as it has in other countries, and he was not sure people in the sector understood the significance of the changes that will occur.

When the UK went down this road, about 80 per cent of existing services were provided by not for profit organisations, the remainder by private providers. That was soon reversed, he said.

A mistake many not-for-profits made was to think “people stick with us”. Knowles said: “People are much more fickle than that. I think there are significant challenges for those operating in this: how they make themselves be a service provider of choice”.

Concerns for Aboriginal health

A delegate from an Aboriginal community controlled health organisation (ACCHO) raised issues for her sector, where Aboriginal communities are estimated to have twice the incidence of disability as non-Aboriginal communities but much less access to services, and agencies that are not specialists for disability support.

“If you focus most of the effort on transitioning current supports (to the NDIS), that will continue to leave Aboriginal communities under-supported,” she told the NDIS panellists.

She was told the NDIA had identified it needed to do a lot more work around Aboriginal disability, and would step up that engagement and transition work. Other culturally and linguistically diverse (CALD) communities will also get a bigger focus.

Another ACCHO representative voiced fears that if Aboriginal people with disability transitioned to other services under the NDIS, only to find they were not culturally safe for them, that the ACCHO workforce might not still be there for them to return to.

What will PHNs offer mental health?

Another panel session focused on the news, announced last year, that funds will be reallocated from Canberra to primary health networks (PHNs) to commission — but not deliver — mental health services.

Again, the sector has welcomed the move, particularly as a bridge between States and Commonwealth, but with concerns about how it all might work in practice.

The aim of the PHNs, to make sure they get local services on the ground where they are needed, was very welcome, Quinlan said. The concern is how to maintain national standards.

He said: “For example with eating disorders and suicide prevention, you can quickly see you wouldn’t want 31 PHNs across the country all inventing their own way of doing things. Addressing how we tackle some national issues while ensuring local suitability is a big challenge.”

The PHN session involved panelists Jason Trethowan – Chief Executive, Western Victoria PHN, Lyn Morgain – Chief Executive, cohealth, and Christopher Carter – Chief Executive, North Western Melbourne PHN. They outlined what PHNs would cover, and what they wouldn’t.

The questions they sought to answer in their session demonstrated the issues of concern for many of the delegates there:

• How will planning be undertaken that ensures the range of demographic, clinical, aged related, cultural, socio-economic and comorbidity of people is properly planned for?
• How will the flexible funding pool work – be prioritised – is it flexible for service models of care?
• How will PHNs work with the State system, and with each other to ensure continuity – especially given the transient nature of some consumers?
• What does this mean for existing youth primary mental health services? Youth with severe mental health?
• How will we ensure that services for Aboriginal and Torres Strait Islander people recognise the social determinants of health and cultural safety?
• What are the potential approaches to reduce fragmentation (suicide prevention)?
• What are the commissioning challenges and opportunities for rural communities?
• There will likely be a gap with the move of specialist recovery based community mental health support services to the NDIS. Will PHN’s be able to fund recovery based CMH or will as suggested PHNs be limited to commissioning only “clinical primary MH” as has been suggested in some of the guidance documents?

PHN perspectives

Croakey later asked panellist Chris Carter for his reflections on the session.

Q: What were the main messages you wanted to get across during the session on the role of PHNs within the context of national mental health reforms?

That the role of PHNs is developing – in the first phase this will be about development of a stepped care model that reflects regional needs, and is focussed around safe, quality mental health care.  There will be a number of stages and phases in the evolution of an integrated system given the high level of fragmentation in the healthcare system.

Q: What key concerns emerged from the session? What’s your response to them?

Not really concerns, but a genuine desire to participate in the conversation about reform – how PHNs will take into account the diversity of populations, families and individuals when considering future planning and investments in the mental health system.

Q: The Federal Opposition said recently: “The PHNs, as the critical commissioners under the new reform agenda, are stuck in an unenviable position, wedged between the enormous pressure to deliver the reforms with unreasonable demands and an information vacuum from the Department of Health and at the same time trying to manage an increasingly agitated mental health sector hungry for information and advice.” What’s your response to that?

Our role as PHNs is to help facilitate as much information sharing and participation in planning processes as is possible.  Some of the tension lies between acute and primary systems, as well as State and Commonwealth systems.  At a regional level, our job is to bring local intelligence / evidence and wisdom to try and meet the needs of consumers / citizens, whilst bringing along the sector – which we acknowledge is reform / change fatigued in Victoria.

Q: What do you want to see promised for mental health in the federal election? Has the campaign put major work on hold? What certainty is needed now?

I support Mental Health Australia’s call for a long-term strategy for mental health – and would add that we need to integrate State and Commonwealth responses at a regional level in order to target diverse populations and diverse needs.  The election campaign has not put our work on hold – we are on track to implement continuing and new arrangements ready for July 1 and beyond in partnership with stakeholders.

Some Twitter observations

Control, not choice

Another big theme at the conference was given a sharp focus by keynote speaker Simon Duffy – that the idea of ‘choice’ is not enough for people with disabilty.

Rather, he said, control is what’s vital. (See also Duffy’s views about the NDIS in this earlier Croakey story and in this interview on Radio National’s Life Matters).

In a similar vein, RMIT Associate Professor Paul Ramcharan told delegates about the It’s My Choice toolkit (DVD, discussion guide and booklets) developed with Inclusion Melbourne, a day service that supports people with intellectual disability. The project sought to inform people with disabilities, family, friends and others as well as service personnel about how to explore choices within complex lives and relationships. .

Ramcharan later told Croakey:

“Of the nine principles of choice (identified), one in particular challenges us to rethink the notion of choice. In this principle,  the important question is not whether people with disability have choice – given that no one really has a total choice in what happens in their lives and that choices are made within a complex of relationships, services and environments. The question should be whether the limitations placed on their choices are reasonable or not.

Organisations delivering services should be looking at discrimination and community norms and other barriers that get in the way of people expressing their choices not just about mundane matters like what to eat and wear (though important) but pervasive areas relating to health, education, work, family and intimacy.

Choice of services alone does not equate to personal choice. It’s the journey of life that counts, not formal academic indicators, but the rich fabric that enriches our lives day to day.”

(Note: this quote above was added to the original published story to give more context about the project).

See his slide below.

Conference perspectives