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“Complex needs” in a complex service system

Figure 1 A new model of the Australian disability services system by Professor David Gilchrist, UWA in “Six years and Counting

Blog 25 February, 2020: Providing services to people with “Complex Needs” – the challenges resulting from the interface between the NDIS model and mainstream services in Australia.

Figure 2 Christine MacQueen, BLCW; Bill Gye, CMHA; Arahni Sont, Centro ASSIST and Jennifer Smith Merry, CDRP

This blog will summarise observations from three workshops over the past 9 days and reference two upcoming conferences on related themes at the end of the blog.

NSW Agency for Clinical Innovation Networks (Mental Health, Rehabilitation and Intellectual Disability) webinar on “Health and NDIS Interface: Psychosocial Disability” (the 2nd in the series). 13th February, 2020

850 people attended including one person in Canada! The panel of experts included:

  • Steven Davison, Director, Social Policy Implementation, NSW Ministry of Health

  • Vince Ponzio, Director, Intellectual Disability Mental Health, Mental Health Branch, NSW Ministry of Health

  • Teena Balgi, Senior Policy Officer Mental Health Branch, NSW Ministry of Health

    The session started with an introduction to the issues involved and mentioned that Marathon Health had won the tender to supply services for people who do not enter the new NDIS complex pathway. The Productivity Commission estimated that approximately 64,000 people with severe mental illness would access the NDIS. As at 30 September 2019 -27,864 people with primary psychosocial disability were found eligible nationally, with 8,788 being in NSW. Average package cost for people with primary psychosocial disability in NSW is around $75,000. Current average plan utilisation for people with primary psychosocial disability in NSW is 64%.

A question was answered about the new “independent assessment” trial being undertaken by the Benevolent Society. Teena Balgi spoke about the 6 areas of reform decided by the Disability Reform Council on 9 October 2019 including:

  1. Access

  2. Linkages and referrals esp with regard to hard to reach groups

  3. The concept of a psychosocial recovery coach

  4. Need for collaboration between the NDIS and other services and the idea of joined up care

  5. The role of the Guardian and the need for trauma informed care esp the link between trauma and disability.

  6. Thin markets are a big problem esp in rural and remote areas and there is really no support for people with complex needs. The workforce needs to grow with quality people and a large scaling up. The market mechanisms are not working for this cohort esp indigenous population that move around a lot/ are transient.

How do you provide support via the NDIS to the homeless for example? Teena spoke about the new project, Project Embark. The Project Embark website includes useful resources and information to help support people experiencing homelessness and psychosocial disability to access the NDIS.

Vince Ponzio gave some statistics about NSW: 125,000 people have an ID and 40% of them have a mental illness. Professor Trollor from UNSW’s 3DN has found in his data analysis that 3% of mental health users have an ID (they are often younger and live in regional areas). They spend twice as long in hospital and go twice as often to mental health departments in hospitals.

The next webinar in the series is scheduled for 1 April 12-1PM with a focus on accommodation. To register please click here, but note that registrations will be limited. You can access the previous webinar held in November here.

Figure 3 one of the publications from 3DN - cover is artwork by Shai de Vletter-Sont (my son)

BLCW and the University of Sydney, Centre for Disability Research and Policy,  “Complex Conversations – A Complex Needs Workshop”. 14th February, 2020

Figure 4 Robert Tinsey, Greystanes, Arahni Sont, Centro ASSIST and Libby Golland, Bendelta

This workshop was hosted by Associate Professor Jennifer Smith-Merry, Director of  CDRP, who had recently released their opinion paper, The NDIS and mental illness: what needs to change?

The workshops (with about 40 attendees) are being held around the country with a focus on provider and workforce capability. These will inform state/territory and national reports which will be provided to all participants, DSS and other agencies. The objectives of the workshops are to:

  • examine and prioritise factors that promote or undermine better services for people with disability and very complex needs

  • look through the lenses of different ages, impairment and context and identify priority systemic issues, lessons and actions.

The group discussion was built aroundWhat works and What doesn’t” when meeting the needs of people with complex needs. An explanation of complex needs [1] was given by Professor Leanne Dowse, Chair in Intellectual Disability and Behaviour Support [IDBS] at UNSW, where she has been a researcher since 1995 and an academic since 2008.

People with complex needs are characterised by their breadth and depth of needs, multiple service use, challenges in holistic and effective service responses, changing needs over time especially in times of stress or crisis. Alternative responses are needed because:  Individuals with complex support needs interact with multiple services but disability is not always recognised; and support is limited by the siloed nature of service and policy contexts.

Some comments were:

  • the NDIA is using the wrong risk model – it looks at the risk to the scheme when it should look at the risk to society when the scheme does not work;

  • the Royal Commission will be an agent for change where PWD will be put first when future policy is determined;

  • NDIA needs to do productive work (not just reviews of peoples’ plans when they appeal their plans).

  • Need a whole new “systems design” between state and federal interface between mainstream and NDIA (e.g. David Gilchrist, UWA paper, “Six years and counting: the NDIS and the Australian Disability Services System”)

  • Need person centred design, listening to the consumer, taking into account culture and other factors

  • Need transparency in decision making (from the NDIA)

  • Need a “service navigator” person/role

  • Have market failure now with a managed market not a free market – markets are distorting the “love in the sector”

  • Need for integrated services

There was a mix of attendees including Libby Golland from the consulting firm, Bendelta. They are running a project called, “The NDIS Workforce Capability Framework” commissioned by the NDIS Quality and Safety Commission.

AHURi “Housing – the foundation for mental health conference”, 19th February, 2020

Not surprisingly, new research has found a direct link between poor mental health and housing instability, exacerbated by a failure of the two sectors to work together. The Report “Trajectories: the interplay between mental health and housing pathways”  launched at the conference, highlights the need for greater integration between the two policy areas and a shift away from the current crisis-driven response.

[1] Dowse, L., Dew, A., & Sewell, A. (2019). Background paper for ASID position statement on intellectual disability and complex needs

Figure 5 Dr Nicola Brackertz, AHURi

Dr Nicola Brackertz launched AHURi’s report. Produced in collaboration between the Australian Housing and Urban Research Institute (AHURi) and Mind Australia, researchers found that social support and access to services can act as mediating factors and can reduce instability. The findings are based on surveys and focus groups with 130 participants including service providers and consumer groups across Australia.

Taken from: Pollock, S., Davis E., Cocks N., Baumgartel G., Egan, R. (2020) Trajectories: the interplay between mental health and housing pathways. Report for national consumer and carer consultations, Australian Housing and Urban Research Institute Limited and Mind Australia, Melbourne, https://www.ahuri.edu.au/research/trajectories

Although mental health issues are a key risk factor for homelessness, there is very little research on the nexus between housing and mental health. This study is one of the first national studies to examine the relationship between the housing and mental health pathways of people with lived experience of mental ill-health. The report identifies five “trajectories” or pathways through the housing system for people with mental health issues and examines the factors that underpin them.

The trajectories include:

  • Exclusion

  • Being stuck in inappropriate arrangements

  • Cycling in and out of the system

  • Stabilisation

  • Being well supported

The study found barriers to access, lack of outreach, lack of system navigation, crisis-driven responses and the siloing of the housing and mental health systems are contributing to the first two trajectories. Dr Brackertz said in an interview that the main message in the report for policy makers is the need for better integration between the two systems. “It’s not just about medication, it’s not just about housing, it’s not just about mental health support,” she said. “It’s about a holistic approach to the services provided to an individual. The other thing is that the housing and mental health systems are really crisis driven, so at the time you’re actually eligible for help you’re already quite sick and have multiple problems around housing.”

She says the focus should instead be on early intervention, such as tenancy sustainment programs to help people through episodes of mental ill health. AHURi is holding a series of policy development workshops over the coming months ahead of the release of a policy report.

Carrying on with this theme about complex needs, The Australian Psychosis Symposium “Re-wiring Circuits” will take place in Sydney on 4th March. Registrations are now open.

The Symposium will include the following themes. “Cognitive remediation should be a standard of care for schizophrenia and bipolar disorder, but this is not reflected in practice. Could the key to success be addressing the uncertainty by clinicians in not knowing precisely what form of remediation will provide durable improvement in real-world functioning? Should the target of remediation be perceptual processing, selective attention, verbal learning, executive function or social cognition? Should each individual be assessed for domain-specific impairments and have their remediation personalised according to domain deficit and learning style?

Remediation is more effective coupled with activity-focused rehabilitation and social skills training. Should these be required offerings? How do you address motivational and hedonic deficits that lead to high attrition rates and low adherence to homework? What is the role of the therapist? What is the role of policy makers and funding partners? What is the role of the research scientist?”

Lastly, the 3rd National NDIS and Mental Health conference will take place in Adelaide on 30/31 March. It has four themes including:  Innovation;  Interface;  Human Rights and Social Equity; Lived Experience Workforce and Leadership. Regarding interface: People want support to be holistic and relevant to their life. This stream explores the interface between NDIS and the rest of the mental health system; interfaces with primary health and health, housing, education, employment, AoD etc. Who is doing it well? How do we do it better?